A ‘WIN WIN’ FIBROMYALGIA CONFERENCE

April 23/26 2010 South Downs Holiday Village Bracklesham Bay
By Jeanne Hambleton ©

The first ever fibromyalgia conference with a pamper weekend in the SE of England, Bracklesham Bay, last weekend (April 23/26 2010) kept it promises as a memorable weekend with eminent speakers, workshops, a range of therapies and some great evening entertainment. So successful was the event that a reunion date for the next event was fixed on the spot for another conference in 2011 on April 8/11. With this first event a sell out, bookings will be accepted on first come first booked.

Vistors hit by the delayed flights flew in from Germany, Channel Islands and Ireland at the last minute while some missed the conference stranded in Spain and the Carribbean. Some drove from Scotland, Wales and northern England to the south coast to hear leading speakers in the world of fibromyalgia.

Using all of their energy in an attempt not tomiss anything during the intensive programme during the long weekend, many admitted they expected to go home and go to bed for a few days to recover.

“But it will be worth it. We have learned so much, ” said on fibromite.

Carol from Bristol wrote and said, “I just wanted to send you a huge thank you for a great weekend. I came to the conference with my mum who is a fibromite and I have learnt so much. I never knew how complex this condition was and now appreciate the frustrations people have with a) getting the correct diagnosis at all and b) getting the correct medication. It was reassuring to see and hear for myself that there are alot of dedicated people researching and I have been completely “fired up” to a) raise awareness of this condition and b) do what I can to raise funds for research. I expect you are absolutely shattered but you should be so proud of what you achieved. I cannot thank you enough for the knowledge you have given me and I hope that I can continue to support my mum and other fibromites as a result.”

LOTZA LAUGHS
While there was lots to learn the fibromites had fun too. The Fibro Fillies Race Night had folks shouting for their horse to win and the message that came back means we had to do it again. On Saturday the Folly Pogs ‘posh frocks’ Ball and fancy dress competition with great support from the fibromites saw the Nuns from the Order of Discontent (the Irish lasses) amusing the audience. Sunday evening featured the charity auction with paintings, Elvis’ shirt, a valuable wine collection, a champagne hamper and jewellery and more, all donated by visitors, raising money for research.

Partners enjoyed deep-sea fishing with good catches, played golf, went fossil hunting and some enjoyed the workshops, while the fibromites listened to 12 keynote speakers over two days. The climax on Sunday afternoon was Question Time with 4 doctors on stage.

GREAT NEWS
One of the many ‘best’ things to come out of the Fibromyalgia Conference and Pamper Weekend, under the umbrella of FMA UK, was an announcement from Professor John Davies from Guy’s Hospital and the FM Clinics, who sadly was unable to be with us, and Professor Ernest Choy, Kings College Hospital, who was so well received the delegates want him back next time.

The announcement said, “We are pleased to announce a new NHS Fibromyalgia collaboration under the King’s Health Partners (Guys, Tommy’s and Kings NHS Hospitals). Heading this new initiative is Professor Davies and Professor Choy, who share a common objective of creating an integral clinical and research programme to advance the understanding and management of patients with Fibromyalgia.

Professor John E. Davies is Consultant Rheumatologist at Guy’s and Professor Ernest Choy is Clinical Reader in Rheumatology at KCL and Director of the Kings Musculoskeletal Clinical Trials Unit.”

The delegates received the news with cheers and expressed relief that further progress was being made in the recognition of our invisible disability – fibromyalgia.

A DATE FOR THE DIARY
In view of the enthusiasm of delegates to come back and meet the people they met this time, the 2011 event on April 8/11 2011 will be reunion with all they liked and some new speakers. All fibromites will be welcome to the residential weekend. There will be staged payments to help those on benefits to spread the cost.

Other on site activities included various workshops including Maryse Boulles’s sound therapy, Karen Henderson sharing her Bath Hospital experience following a one month stay; Gemma Kingsman from Consultaid who talked about Finding the Funds for Groups; and hygienist Jane Russell who talked about teeth and health. Sheila Green from Motorvate Chichester talked about a gym with a difference. Giselle and Ian Smith from the DWP spoke about the benefit system. Sunday saw two informal ‘Meet the Doctor’ sessions with Dr. Robert Lister and Dr. Ray Perrin. The weekend included Pilates, Tai chi, Yoga with a free pamper taster day, a shopping experience and fibromites arts and crafts. One to one pamper therapy sessions ran over two days at conference discount.

SPEAKERS PRESENTATION SUMMARIES

Most people had come to hear the specialists in the field of fibromyalgia. Everyone claimed they learned so much. Even the doctors found the experience rewarding with feedback from the fibromites worthwhile.

One fibromite said it was a ‘win win weekend’ with everyone getting a great benefit.

The following brief summaries of the hour long presentations are reported by fibromites who attended the conference and helped to provide information for this article. My grateful thanks to the following note takers as it was impossible for me to sit in and listen to any of the speakers due to other conference commitments. I just wish I had been a guest….

Group Leader of West York’s FM SG Denise Rhodes made the following comment.

“Overall, the information from the speakers was delivered with humour, sympathy and great authority. The passion with which much of the subject matter was disseminated demonstrated a level of caring far and above what I expected and definitely above the experience level of many of the GPs and consultants reported to me on the helpline and by colleagues in my group. All speakers made themselves available after their presentations and showed great interest in questions asked and gave detailed responses,” she said.

Report by Leanne Daniels from Horndean FM SG with thanks for her commitment and help during the weekend.

Professor Ernest Choy MD, FRCP is Consultant Rheumatologist at King’s College Hospital and Director of the Sir Alfred Baring Jarrod Clinical Trials Unit in the Academic Department of Rheumatology, King’s College London. He is also Director of Research and Development at King’s College Hospital in London.

Discussing the new advances in the pathophysiological management of fibromyalgia Professor Choy said it was hard to investigate pain with doctors feeling there is nothing they can identify to reach a diagnosis. Many controversies have been removed by trying not to label patients. He said MRI scans show the structure of the subject but not how the organ or tissuing was functioning. Brain functions can be seen and the magnetic properties in the brain are changed by the blood flow. Since the MRI uses magnets the brain functioning can now be seen.

Brain scans have even shown a reaction when red-hot chilli peppers are placed on the skin, with pain registered in certain areas of the brain. Pain results from a pain response and activates areas of the brain. The scan is useful as a tool to see how pain is perceived in FMS using pressure applied to the thumbnails, a sensation for pain against the pressure, can be detected. When this is applied to someone with FMS the signal to the brain can be identified to see if it correlates to the pain felt. So the pain is not just in your head.

In ‘normals’ increased pressure eventually results in pain. In someone with FMS pain is triggered in the brain much sooner. This confirms the patient was not lying.

Professor Choy confirmed there are areas in the brain where normals and those with FMS show differences. Those with FMS were found to have less activity is regions of the brain than ‘normals’.

FMS patients react differently to normals, as their brain inhibitor is not working. They do not respond well to morphine. The brain produces its own morphine-type drugs. As the inhibitor does not work the natural drug produced by the brain is also reduced.

Sleep is very important and there is a link between sleep quality and pain. Good sleep reduces pain to manageable levels but the pain may not go away. Researchers are working towards identifying the relevant pathways and how to clear them. The focus is now on research to improve sleep,

Aims in the treatment of FMS include reducing pain, improving functions, better quality of life, and allowing patients to self manage. It has been identified that FMS is a complex and herogenetic condition and not everyone with fibromyalgia is the same.

Three sub groups within FMS have been identified and this is significant enough to show that blanket or individually tailored treatment would be needed. In trials random meds are given and there have been similar observations about 3 sub groups. Drugs trialed in the USA revealed similar results with sub groups in different pathways. Some patients have more sleep disturbances, mood changes or depression. Depression can lead to poor sleep patterns and hinders the ability to cope. Researchers are trying to develop treatments suitable for each individual pathway for patients. To date there is not one magic cure but with these small steps forward it is hoped that one day there may be one drug to help all fibromites.

Professor Choy said they were trying to educate doctors on what FMS actually is, and explain to the patients’ relatives more about the pain they cannot see.

Exercise may hurt but if you do not exercise you lose muscle tone, which can make fatigue worse. It is important to push on doing gradually more each day. Best time to exercise is in the evening followed by a warm bath and bed to enhance sleep quality.

Professor Choy confirmed medical guidelines could be sent to GPs on request to FMA UK – http://www.fibromyalgia-associationuk.org/general-articles-highlights-208/271-medical-pack-html

Report by Leanne Daniels

Dr Peter Fisher Chirr, MB, FRCP, FFHom is Clinical Director and Director of Research at the Royal London Homoeopathic Hospital, London, Physician to HM Queen Elizabeth II and chaired the World Health Organization’s working group on homeopathy, whose report is due for publication soon.

Talking about fibromyalgia and homeopathy he described this as treatment of like with like. It is different from herbal medicines and is often confused with this. Homeopathic treatment is for the person not the disease. One of the conditions treated may be a bee sting with pain, swellings, relieved by cold and worse with pressure. The preparation to cure the condition would be one part of the mother tincture, and maybe 99 parts of water.

Dr Fisher reported that at the last survey in 1998 8% of the population was using homeopathic remedies with 470,000 users nationwide. This related particularly to the chronically ill. The growth in users is between 12% and 13% annually.

Clinical research on Rhus Toxicoderdron for FMS using double blinds with placebos and homeopathic pills showed 25% of FMS patients responded to treatment in just over a month. Tender Points cannot be reduced but these will respond and get worse if these points feel the condition is getting worse. Overall people did better taking the pills than those on the placebo treatment.

Dr Fisher felt a condition with normal care and homeopathic treatment would work better offering a broader package of treatment than just normal care. He said people went to the Royal Homeopathic Hospital for treatment because other treatments did not work, or gave unwanted side effects, with the majority of patients responding well and improving.

The advantage of using homeopathic treatments was you could do it yourself, based on a small number of typical symptoms, it treats the person and not the disease. There are a limited number of homeopathic remedies, compared to many medications available, and it does not need a practitioner. It also has low dilution content compared to high dilution with meds.

Dr Fisher spoke of the symptoms homeopathic remedies could help and the treatments used. Homeopathic treatment was available on the NHS but it was not easy to get. These treatments seem to work for fibromyalgia. With Choose & Book you can advise your GP you wish to be referred to the Royal Homeopathic Hospital in Great Ormond Street, London, or do it yourself on the Internet.

Denise Rhodes reported -

Professor B K Puri MA (Can tab), PhD, MB, Chirr, BSc (Hones) MathCAD, MRCPsych, DipStat, PG Cert Maths, MMath, is at Hammersmith Hospital and Imperial College London, he has carried out pioneering research work and is a world-leading neuroscience and biochemistry expert.

Professor Basant Puri asked is Fibromyalgia associated with changes in brain anatomy? Previous studies show no grey matter reduction in normal healthy patients and fibromyalgia sufferers. This is in contrast to patients with psychiatric conditions.

His very recent study tested FMS sufferers against a healthy control group and identified loss of grey matter in relation to fatigue.

The tests were carried out using very sophisticated MRI scanners at a higher level than normally used 1.5T(Teslas ) Teslas are measures of magnetic strength. His tests were carried out using 3T and a totally unbiased research method called VBM approach.

His conclusions are that there is degeneration in grey matter in areas of the brain as a result of visual stimulus overload, and problems of coordinating motor and visual tasks, along with problems with sequenced complicated actions.

Denise Rhodes wrote the following reported –

Dr Cathy Price MB BCH, DCH, FRCA, FFPMRCA is a Consultant in Pain Management, Southampton University Hospital NHS Trust and a member of the British Pain Society who has an interest in fibromyalgia said there was a need to focus on patient needs rather than on conditions.

She said pain services offers a multi-disciplinary team approach, which includes psychologists, doctors, physiotherapists, occupational therapists, pharmacists, nurses, acupuncturists and job advisors in order to improve the quality of life. Dr Price said 70% of patients at discharge report positive results as against 30% who feel that it has been of little or no benefit.

Dos and Don’ts for FM –

• Do promote balance in activities
• Manage depression
• Discuss pros and cons of therapies, treatments, and strategies.
• Don’t use opoids
• Use Pain Toolkit booklet

Useful sources for FM information:

HYPERLINK “http://www.patient” http://www.patient.co.uk and /healthyFM.htm
HYPERLINK “http://www.18weeks” http://www.18weeks website dept of health – pain

Dr Price is the clinical lead for the National Pain Audit and argues that getting information into GP surgeries, hospitals and pharmacies is vital, so anything we can do to promote FM in this way will help us all.

She emphasised how important pacing is and how it is difficult to achieve – it may take months and help is so limited. Southampton has dropped organised courses such as 6 weeks on hydrotherapy etcetera, in favour of a cafeteria approach where individuals can take bits of services according to their individual needs. She referred fibromites to ICAS an independent body who will support patients to fight their corner. She also referred us to PALS who are also very helpful.

A question was asked regarding whether the very high number of GPs who are either non-believers, or non-supporters will reduce as further training, younger doctors come into the system. She said that more training and awareness is having an effect, often via e learning – online. She also said that Dr Liam Donaldson, the Chief Medical Officer, is promoting greater awareness of the condition.

Report by Leanne Daniels

Dr Ian H Treasaden MB BS LRCP MRCS FRCPsych LLM Head of Forensic Neurosciences, Lipid Neuroscience Group, Imperial College, London.

Dr Treasaden discussed mood disorders associated with FM and the management of nutrition. He spoke about normal and abnormal depression and FMS and mood disorders. He said Charles Darwin had fibromyalgia. He wrote books about species after years of travels and would suffer a fibro flare when defending his theories.

He believed the causes included hyper exatability of the nervous system, brain functions, and altered brain waves that deal with pain. Management would include a mixture of drugs and non-drug treatments plus antidepressants. On the non-medicines he included walking and exercise, hydrotherapy, CBT (cognitive behaviour therapy) that challenges negative attitudes to symptoms, plus a multi-disciplinary approach, which is rare to find.

On mood disorders he said depression causes could be more than a low mood. Periodic low moods can improve over time without treatment. Grief can be confused with depression. The Doctor spoke about Bipolar, which had replaced the manic depressant illness.

Depression symptoms included low mood, no feelings or tears, loss of interest, socially withdrawn and no interest in hobbies or work. In severe cases that can include suicidal thoughts, low self esteem, helplessness and pessimistic, loss of appetite or even weight gain, constipation, lack of sex drive, impotence, poor sleep and paranoid.

Those with FMS and depression often have headaches, worry about their symptoms and are delusional. Management can include counselling, self help, CBT, exercise and antidepressants for 6-9 months. Omega 3 is good for depression, elevating your mood and reducing anxiety. His recommendations included medication to help sleep, exercises, brain exercises and nutritional management.

Report by Leanne Daniels

Dr Nick Avery MB BS LRCP MRCS MFHom from the Natural Practice at Winchester & Eastbourne helps patients within the Health Service benefit from complementary techniques for IBS, CFS, Eczema, Allergies, Asthma and Migraine, using homeopathy for the emotional component of the illness.

Fibromyalgia is a very common condition that is poorly served by conventional medicine. In his experience, the key features are extreme fatigue, muscle pain and emotional disturbance. Interestingly the emotional aspect is the reason why patients suffer – otherwise the illness would just be interesting! Anti-depressants do not deal with this – they can help elevate mood in some patients but they do not address specific emotions. Similarly fixing the underlying fatigue state cannot be helped by drugs, which are mainly designed to block symptoms rather than create energy.

Many patients that Dr Avery treats suffer from underlying mitochondrial failure. Mitochondria are present in most cells of the body and this is where the ATP cycle occurs, providing the energy needed for all cellular functions. A blood test has now been developed which can identify which of the two underlying possible problems is causing the low energy state. There is a lack of raw materials to make the necessary ingredients involved in the process and some kind of block in the circuit usually from a chemical / drug or other toxic substance. The only way to treat these abnormalities is to correct the underlying nutritional problem – there is either an absorption problem or nutrients are lost – or to use some kind of ‘detox’ technique.

Neither of these treatment modalities is available from conventional practitioners – despite the fact that the condition has an underlying demonstrable biochemical explanation. The Doctor showed a scientific approach to the condition, sorting out problems with absorption, retention of nutrition and the use of a variety of treatment modalities designed to improve energy levels, pain and emotional disturbance. Much of the talk is based on 15 years’ experience of helping patients who suffer from fibromyalgia – many of whom (but not all) have done very well. He intends to concentrate on what can actually be done in the light of our current understanding.

Report by Leanne Daniels

Dr Robert Lister BSc PhD FBS C Biol. is a Director of Phyla Ltd, a health care consultancy and Director of Cubic Ltd, which develop innovative medical electronic devices. He is Chairman of the Institute of Brain Chemistry and Human Nutrition at London Metropolitan University.

Introducing Linda Horncastle Dip COT SROT, Group Leader South Bucks FM SG, Dr Lister said due to FM she had stopped work. Thanks to the Alpha-Stim she has returned to work as an Occupational Therapist.

Dr Lister spoke of a pilot study relating to chemical imbalances, which showed a 60% improvement with microcurrent stimulation, but he felt something else was going on in the brain. Many people suggested the pains were a figment of the imagination and various drugs were needed to treat the condition. He felt there as ‘faulty wiring’ on the malfunctioning connections to the nervous system although imbalances may be able to fixed there was evidence that brain stimulation can modify the signals.

Dr Lister referred to the influences we feel and the chemical receivers. But when the muscle or bone is injured the body sets up an electrical current. Electricity can affect the brain. Some elements may be faulty and disconnected but this can be changed by introducing the microcurrent. By changing the electrical status this can alter the way we behave. People with psychological disorders had purely behavioural problems and these could be improved by talking.

The brain is made up of a lot of active centres and neuroscientists were using deep brain stimulations for diseases such as Parkinsons. He made reference to CES Cranial Electric Stimulation, which produced a similar effect to deep brain stimulation at a cost of £250.

Stimulation can provide relaxation in some parts of the brain and stimulation in others. It can block pain, reduce anxiety, increase positive effects and alleviate insomnia. The stimulation can also change the concentration of chemicals, releasing more so the energy levels are increased,

Studies in the USA have helped pain, anxiety, stress, muscle tension and insomnia. In recent trials based on 500 patients the majority received between up to 99% relief of symptoms and headaches. There were moderate improvements on trials involving 2,500 patients in RSD, FMS, myofascial pain and migraines.

Talking about Linda he told her story and said she had FMS for 20 years but was now walking again thanks to the microcurrent. Dr Lister confirmed microcurrents had been used in the USA for 29 years and were safe and claimed 90% success rate. At a lower power than TENS machines the effect is cumulative where the TENS stops when you turn it off. The machines use probes and sticks.

Linda’s group had tried the microcurrent machines and reported improvements in 3 weeks. While it is not a magic cure it should be used most days and then mobility improves and fibro fog disappears. There are no side effects except perhaps some tingling.

Report by Clare Palmer ANOM

Dr Raymond Perrin DO PhD, Hon. Senior Lecturer, School of Public Health and Clinical Sciences, UCLAN, Registered Osteopath and Specialist in CFS. He spent 16 years researching medical and scientific evidence while treating CFS/ME/ Fibromyalgia patients with of the Perrin Technique.

Dr Perrin explained his treatment, based on manual drainage of toxins from the central nervous system, could relieve many of the symptoms of fibromyalgia. Some doctors treat fibromyalgia (FMS) and chronic fatigue syndrome (CFS) separately, while others think they are actually the same thing – or at least, variations of the same condition. According to the Arthritis Foundation, research shows that 50 to 70 percent of people with one diagnosis also fit the criteria for the other.

Raymond Perrin’s earlier research at the University of Salford in conjunction with the University of Manchester, coupled with the hundreds of successful clinical case studies and the latest findings in neurophysiology, has provided strong evidence that CFS involves a disturbance of the drainage of toxins from the brain and muscles? These poisons often enter body in the form of viruses, bacteria and other microbes, parasitic infection or due to environmental toxins such as pesticides. Yeasts, bacteria, viruses, parasites, pesticides and heavy metals have all been implicated in cases on Fibromyalgia.

Osteopath and bioscientist Ray Perrin, who has developed this treatment technique over the past twenty years, showed how simple measures can bring relief to the patient and explained the possible patho-physiological pathways that lead to this terribly debilitating disease. The basis of this condition being a toxic overload of the brain and spine affecting the sympathetic nervous system, can over stimulate the peripheral nerves leading to pain and muscle spasms etc.

Dr Perrin stressed that although The Perrin Technique has brought much relief to many, it is not a cure-all treatment. In cases of fibromyalgia it should be used in conjunction with other therapies such as acupuncture and hypnotherapy. Supplements of vitamins and minerals, omega 3 and 6 fatty acids and pacing are all important in the overall therapy. His best-selling book The Perrin Technique, Hammersmith Press, London, 2007, sold out with a conference discount and is available from most good book supplies.

Report by Leanne Daniels

Andrea Barr MRSS (T) is a Shiatsu teacher/Complementary Pain Specialist, interested in FM, and has lectured in Switzerland, Austria and UK. She runs Pilgrim Hospital Boston Pain Clinic, Lincs. Talking about the logical empowerment approach to pain managements, she looked at the physical symptoms of FMS.

People who eat carbohydrates may suffer from an intolerance of this substance that can also lead to many of the symptoms associated with fibromyalgia she said recommending that oats and rye should be retained but most carbohydrates should be removed from the diet.

Andrea Barr referred to emotional symptoms including questioning yourself, the pressure of time, being self critical if doing nothing, feeling stressed, concerned with details and a low level depression.

The Autonomic nervous system – or fight and flight feelings – often resulted in difficulty expressing feeling, feeling under threat, while our bodies undergo a series of dramatic changes in blood flow, digestive tract, and the muscles. Signs of flight or fight syndrome are poor sleep with an inability to shut down, tight shoulders/neck, digestive upsets, regular headaches. The fight or flight feelings can stem from childhood, long term trauma, too much activity and no calmness, and undetected stress.

Referring to rest, digest and repair Andrea Barr said the heart rate drops, blood pressure falls, respiration slows and deepens. Blood flow is re-established, the immune and lymphatic systems are supported, and you feel relaxed, calm and refreshed if you slept well.

Summarising she said the body can only repair itself during rest and digest. During fight or flight the rest does nothing for the body. Traumas and triggers can put a patient in a fight or flight condition. She described how the brain reacted during this sensation.

Resources to encourage better sleep included EFT, thought field therapy, cognitive behaviour therapy, yoga, medication and breathing, Shiatsu and cranial treatments. For more help email andrea_barr@hotmail.com or ring 01522 521 817.

Report by Denise Rhodes

Dr Nina Bailey BSc, PhD is a nutritional scientist working in dietary health and nutritional intervention in disease, with emphasis on the role of fatty acids in fibromyalgia, depression and ME. She has a DVD, which explains how to manage IBS that at least 50% of FM/CFS/Depressives/chronic headache sufferers experience.

Basically her argument is that there is no perfect dietary cure but findings show that red meat, particularly if seared/charred/barbequed produce carbonation. That produces ammonia, which leads to inflammation in the gut and is extremely bad for IBS just as many sweeteners are, such as xylotomy and sorbitol. Also insoluble fibers such as whole-wheat grains, bran, unpeeled fruit, salad greens, fried foods are in question. An expansion of this is on the http://www.drninabailey.com site. Dr Bailey said information is available on her websites http://www.igennus-hn.com, http://www.drninabailey.com and from ninabailey@aoum.org.

Report by Denise Rhodes

Dr Mageb Agour MB, BS, MRCPsych recently presented his latest research findings into sleep disorders in this area at a major international medical conference in Italy in September 2009, looked at objective sleep management.

The gold standard test is
• In a laboratory where subject is wired up to record all body functions.
• A device that looks like a watch, strapped to the wrist and used in one’s own home. This is programmed to record movement and defines when/when not asleep
• There are 5 stages of sleep with normally 3 – 4 cycles per night.
• The longer we sleep the more we dream. But dream is only achieved in stage 5 (REM)
• Stage 1 light sleep/dozing low eye movement, often slightly aware and easily aroused
• Stage 2 eye movement stops, slower brainwaves
• Stage 3 Delta waves deeper stage
• Stage 4 No eye movement or muscle activity
• Stage 5 REM breathing increases, rapid eye-movement – muscles paralyzed

Babies spend 50% of sleep time in REM but with aging there are fewer REM stages in adults.

• Primary Sleep Disorders
• Narcolepsy
• Sleep apnea
• Abnormal behaviour
• Sleepwalking/talking
• Night terrors
• Secondary Sleep Disorders
• Mental disorder
• General medical conditions
• Substance users anything from caffeine to cocaine and heroin
• Sleep and FM
• Restless leg syndrome – Periodic limb movement – involuntary (if severe may need treatment)
• Bruxism (Grinding teeth)
• Alpha wave intrusion

In Fibromites non-refreshing sleep is a result of Alpha waves intruding into Betawave stage causes REM state to leave. Remedies are to reduce mental activity before bed, avoid reading in bed or watching TV.

Melatonin is seen as a useful tool and is now available from many GPs or online.
Short term sleeping tablets and treating underlying problems. Natural remedies such as Valerian, which performs in a similar way to Oxizipan or St John’s Wort, which is often used for depression.

However, when using alternative and complementary medications it is important to check with GP and/or Pharmacist to avoid clash with prescribed medication.
Chamomile, a Fish Oils High content omega 3 vital.

Report by Leanne Daniels

Andy Pothecary MPharma (Hons), ACPP Pharmacist is a Senior Pharmacist at Worthing Hospital. Andrew’s interest in fibromyalgia began in 2004 when his wife was diagnosed with the condition. He hopes to undertake research and develop a specialist role in this area in the future.

In his Pharmacist Pick & Mix presentation Andy Pothecary spoke about Medicines Licensing in the UK explaining the Drug Company identifies promising new compound, applies for a patent, and carries out further laboratory trials. The company then applies for permission to carry out clinical trials. When completed they apply for marketing authorisation (MA). They can then sell the product within the EU.

He described the types of clinical trials a drug is submitted to.

Phase I: Pre-clinical testing, with healthy male volunteers – first time drug used in humans.
Phase II: Small-scale trial at a limited number of centers, in which the drug is used in patients with the disease.
Phase III: Larger-scale trial across many centers, with a wider range of patients
Phase IV: Post-marketing surveillance – product in use but rare or long-term side effects identified

Use of unlicensed medicines

These are medicines without a PL/MA. This might be because they are undergoing clinical trials, are to treat rare conditions, or because the MA has been withdrawn or surrendered. If unlicensed medicines are used, the prescribing doctor assumes full responsibility and liability for any adverse events that might occur.

What is “Named-patient Basis?”

Process that enables patients to be supplied with an unlicensed drug. “Named patient” means the drug is being supplied (to the hospital, pharmacy, etc) for the use of a specific patient. Depending on the drug concerned, it can be fairly simple to obtain or involve lots of form filling by doctor and pharmacy.

Off-license/off-label Medicines

When a product is granted an MA, this specifies which conditions the product can be used to treat. However the product might also be used to treat other conditions. This use is termed “off-license” or “off-label” because it is not covered by the terms of the MA. Again, this means that the prescribing doctor will assume greater responsibility and liability if anything goes wrong.

Why is this relevant?

How many medicines are currently licensed for the treatment of fibromyalgia in the UK? None! He spoke about the use of ‘old drugs’ normally prescribed for other conditions but used for fibromyalgia although these may not be licensed for this. He also described the various drugs prescribed by GPs.

Report by Denise Rhodes

Gemma Kingsman, professional fundraiser, reported on Finding the Funds – and outlined what funds are available, mainly concentrating on Awards for All, which is the National Lottery.

For large pots of money £30,000 eg can be funded for up to 3 years. Smaller pots up to £5,000 can be applied for such as sessional worker funds, equipment needs, marketing the group. She advised ringing lottery help lines for how to submit and what for. They are very helpful.

Grassroots Awards are nationally available but administered locally via a local community foundation. The cash comes from wealthy donator philanthropists and organisations. Groups applying must have a written constitution with clear and simple rules and regulations, be a not-for- profit organisation, able to identify a need in the community, which the group will serve. Can make more than one application in two categories: up to £900 and from £900 – £5.000. The following year application can be made for further cash to support further needs. The Grassroots Grant might be for rent, equipment, refreshments, and volunteer costs regarding running costs.

The Lions Clubs, Rotary Group will respond to a letter for support and the website “Guide Star” is a source of information. Many Disability sites will provide sources of funding. Her company “Consultaid” charges £35 to fill in a grant application form but she referred delegates to free help in the community.

Talking fundraising we are looking for some help from our friends. We believe we can persuade a couple of American FMS doctors to come to conference next year. But we need to pay their airfare and expenses. We may be looking at approximately £500 per doctor. If you are coming next year and are able to do a bit of fund raising towards hearing these USA doctors who are often light years ahead of us in some things FMS, we would love to shout about what you are doing and would really welcome your support. Email me jeannehambleton @ mac.com if you can help. While April 2011 is some while away we need to get in the diaries of these doctors. However small your fundraising is it will all add up. Guess what – I already have two bookings. Thanks Ann and Gina.

THANKS
Finally I would like to thank FMA UK for their great support with help and wonderful conference bags, which members have said they will carry their meetings. Without their help the delegates might have had Tesco plastic carrier bags for their conference papers. Odd everyone liked the bags but no one said anything about the paperwork we spent hours stuffing inside….

Clare Palmer’s Sunday input with doctors was also appreciated. Thanks also to Teresa White and Lorely Day (Chichester FM SG), for their great work with the tombola, raffles and auction. Thanks also to Horndean members Tracy Gibbon and Andy Andrews for their major contribution to the auction with another lady fibromite whose name sadly I did not get.

My gratitude to Pauline Dee and Leanne Daniels who spent hours at the front desk dealing with enquiries. There for the cause, Pauline and Glenna Frost but neither managed to see or hear any speaker or visit a workshop. Thanks also to Glenda Philpott and Martin for spending hours filming speakers to produce a DVD of the event. Watch this space for news of when it is available. Like most conference areas the room was dark for power points and mobile telephone quiet signals may have interfered with the recording but we live in hope.

My apologies to all those who offered help with notes and speakers. I ran out of time and just had no time to get together to work out the details. I am sorry. I am grateful to Denise Rhodes and Leanne Daniels who took notes anyway and fired them off in time for me to get this article out in reasonable time.

Thanks to Bob McKinlay and Gareth Duval for organizing the golf and Chris Crick for sorting out the deep-sea fishermen and lone fisherwoman, and to the fossil hunters who understood when we said their ‘leader’ was grounded in the Caribbean under an ash cloud.

Also thanks to Tony Ede (FMS SAS) and Simon Stuart (Worthing & Ferring FM SG) for taking care of projectors, laptops and power points and making it happen. Gratitude to Bill Craven and friends for the race night. I am grateful to fibromites Karen Henderson who did a workshop and sorry Sam Piggott had a flare. Also thanks to Alan Perry for the photographs of the FollyPogs Ball he has donated and to Nene Valley FM SG who donated £63 to the research fund.

Thanks also to all the speakers who gave their time without reservation, those who ran workshops, the exhibitors, and the pamper therapists. Your support was appreciated by everyone.

I also appreciate those who understood how much work was involved and have volunteered to ‘take a section’ of the conference for next year. Great news and thanks.

South Downs Holiday Village Management, staff and the Head Chef did all they could to make us comfortable. The dining room and kitchen staff were all exceptional and patiently dealt with our special diets. They were more attentive than some expensive hotels I have stayed at giving freely of their usual time off. Well done and hope your company appreciates your high standard of care. We fibromites were really grateful to everyone on site for making us very very welcome.

Finally my gratitude must also go to Sarah, my ‘rock’ that did everything pamper for us and my husband Arthur who worked with me who wrote databases, was tolerant to list bookings and payments and the endless mails. Forgive me if I have missed anyone. I am a fibromite and I do forget. And a huge thanks to those who came. You helped to make the weekend memorable for us. Without your support none of this would have happened. THANK YOU Jeanne

One in seven GPs may be told to retrain under revalidation plans

From the FMS Global News Desk of Jeanne Hambleton (UK)

Courtesy of PulseToday.com

On July 2008 the PulseToday.com on line magazine for GPs carried a story concerning compulsory annual assessment for GPs.

Chief Medical Officer Sir Liam Donaldson then formally laid out controversial plans for the revalidation of doctors.

Under the plans, revealed in the report, Medical Revalidation: Principle and Next Steps, GPs will face compulsory annual assessments, and could have their licenses removed if they are judged to be performing poorly.

The process, which has been in the pipeline for over a decade, will require GPs to renew their licenses every five years, with senior doctors asked to assess colleagues who are practicing in their area to ensure they are not putting patients at risk.

Patient feedback will also be used in the assessment process, pilots of which will start next year.

The proposals have been produced by the GMC with the help of the medical colleges, including the RCGP. But critics have warned that the extra scrutiny could lead to the spread of defensive medicine.

GPs will have to clear two hurdles to gain revalidation; recertification – to confirm that they meet standards appropriate for the specialty of their medicine, and re-licensure – to confirm that they practise in accordance with the GMC’s generic standards.

Mandatory annual reviews will look at prescribing habits, assessment of a patient’s condition and any personal issues such drug or alcohol abuse.

Pulse revealed earlier this year that GPs will be assessed using so-called 360-degree colleague surveys, with up to a dozen practice staff and colleagues asked to rate their performance.

The process is expected to be rolled out gradually to all specialities, including general practice, with pilots beginning in 2009.

UP DATE

Last week on 16 April 2009 Gareth Iacobucci wrote an up to datge story for PulseToday.com.

Exclusive: As many as one GP in seven will face having to retrain under the RCGP’s (Royal College of General Practitioners) plans for revalidation, Pulse can reveal.

LMCs (Local Medical Committees) have been told to expect between 5% and 14% of all GPs will fail at least one element of the programme, with some having to do up to 18 months of ‘corrective training’.

The figures, which the college said were in line with its own predictions, could mean up to a third of three-partner practices, and almost half of four-partner practices, having at least one GP who does not pass first time.

Dr Maurice Conlon, national director of the NHS Revalidation Support Team and a GP in Birmingham, told Pulse practices might need to consider rewriting partnership agreements to outline who was financially liable if a partner had to take time out of work to retrain. He said he expected a ‘surge’ of GPs to need some sort of intervention in the first year or two of revalidation, but insisted this would then ‘settle down and tail off’.

He added: ‘A very small number of doctors might find they are in the wrong job, some will have a significant need for remediation and some will need some form of retraining.’

The RCGP expects GPs to begin compiling portfolios from this month for the first five-year revalidation cycle, with the first GPs scheduled to move through the system in 2010/11.

Professor Steve Field, chair of the college, said the 5-14% estimate was ‘about right’, but that most struggling GPs should be identified via PCT appraisals long before the end of the five-year cycle:

‘Learning needs should be identified each year and additional support given. But nothing will work unless we have effective appraisal.’

Dr Conlon said many GPs requiring retraining would still be fit to practise, depending on how much work was needed, with revalidation targeting areas such as communication problems, absence of an established practice team and lack of engagement with CPD

(Editor’s Note: Doctors have a responsibility to keep up to date. The GMC publishes Guidance on Continuing Professional Development, which sets out the principles on which continuous professional development should be based, and the roles of the relevant organisations involved in its delivery.)

But Dr Conlon warned that GPs might have to fund some retraining themselves if it extended beyond study leave written into their contracts. “Partners could choose to write into agreements that if you run into difficulty, you limit their ability to share profits. I would be very disappointed to see that,” he said.

Kent LMC has begun warning its members of the ‘significant’ effort and cost likely to be involved, after being presented with the failure-rate figures at a meeting between GP educationalists and local PCT managers.

Dr Gary Calver, secretary of Kent LMC, said: “There are big question marks over how it is going to work and be funded.”

Gloucestershire LMC warned: “Partnerships should consider very carefully and put into partnership agreements what is to occur should a partner fail. For instance, would the partnership continue to pay the GP a share of profits while retraining?”

The GPC has stressed the need to ensure all aspects of revalidation, appraisal and remediation are adequately supported, but the Department of Health has given no guarantees.

PULSE READERS’ COMMENTS:

Umesh Prabhu | 18 Apr 09

If the plan is to retrain ‘poorly performing’ GPs then there is no need to worry. The question is how we are going to identify these GPs? Who makes the decision that the GP needs re-training? Who is going to fund it? How do we make sure that there are no ‘hidden’ or personal agendas at local PCT?

Of course, it is important to protect patient safety and their well-being but it is equally important that all doctors are treated fairly and correctly and action taken is proportionate. Big question is who is going to fund the re-training?

THE REVALIDATION PROCESS

Areas where GPs could fail
GPs may demonstrate deficiencies in areas such as communication, poor premises or CPD.

What type of retraining?
GPs could receive educational support from the RCGP, deaneries or other specialised academics for those that need ‘more intensive support’. With significant concerns, and if remediation is required, National Clinical Assessment Services procedures could be used, which can last up to 18 months.

The process
GPs to collect information for revalidation portfolios over five-year period. PCT responsible officers will give a recommendation to the GMC over whether or not to revalidate

Practice staff to rate GPs as part of tougher appraisal

GPs will be scored by colleagues and staff every few years as part of a new process to prove they are qualified to continue practising, said Gareth Iacobucci in Pulse Today.

Verdicts from colleagues form a key part of controversial plans for recertification and will take place either once or twice every five years.

GPs will be assessed using so-called 360-degree surveys, with up to a dozen practice staff and colleagues asked to rate their performance.

Annual appraisal will also be toughened up under the plans, released to Pulse, by the Royal College of General Practitioners’. The current informal appraisal will be replaced by summative assessment and performance management.

The more rigorous appraisals and 360-degree surveys – both of which are bound to be contentious – will feed into the five-yearly recertification process.

Recertification will require GPs to demonstrate the skills and knowledge expected of their profession, and will occur in parallel to the GMC’s relicensure procedures to investigate fitness to practise. GPs will need to clear both hurdles in order to gain revalidation.

The RCGP told Pulse toughening up appraisals was essential to meet the regulatory requirements expected of the profession and ensure it could continue to self-regulate.

The college’s chair, Professor Steve Field, insisted most GPs had nothing to fear: “This is about professional development in the vast majority and, in cases where performance is below standard, identifying those in need of help.”

The college will publish a draft of ‘criteria standards and evidence’ to guide appraisers in judging GP performance. GPs will be judged on the quantity and quality of their portfolio, and expected to detail difficult incidents and lessons learned.

Professor Mike Pringle, professor of primary care at the University of Nottingham, who led the RCGP group examining the criteria to be applied in appraisals, said GPs should feel reassured that they would be judged by peers, not external bodies, during recertification.

“People will sit at a computer, and anonymously rate the GP on a five-point scale on a set of attributes. GPs get an aggregated score so they can see how colleagues view them,” he said .

But some GPs were alarmed by the plans. Dr Cornel Fleming, a GP in Islington in north London, said the system would breed discontent among GPs.

“It is getting ridiculous,” he said. “Appraisals were supposed to be helpful, not disciplinary. It is becoming like a police state.”

The RCGP said detailed proposals would be completed later this year, piloted in 2009 and rolled out in 2010. Appraisals will remain annual, but it is yet to be decided how often surveys will take place over five years.

In the surveys GPs would be ranked by colleagues of their choice, which could include fellow GPs within or outside the practice, practice nurses and practice managers.

Pulse, CMP Medica. All rights reserved.
(http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122447&c=2)
(http://www.pulsetoday.co.uk/story.asp?storycode=4118102)

DEBATE

Are recertification plans good for general practice?

The RCGP’s Professor Mike Pringle insists the system will be fair and transparent. But GMC member Dr Krishna Korlipara believes assessment by staff is an inappropriate way of judging clinical competence.

Yes

Are recertification and revalidation really necessary?

Well, my view is that it is no longer sufficient to qualify as a doctor and to pass the MRCGP before, say, the age of 30, and then to practise through to 65 or older with no further question about your competency.

We could rely, as we have in the past, on dodgy doctors ‘coming to light’ through complaints or PCT investigations, but that is not sufficient reassurance to us as colleagues or to the public.

So if periodically demonstrating that we are keeping up to date and still fit to practise is necessary, we need to be sure that the system imposed on us is appropriate.

By this I mean that it achieves its aims of ensuring our fitness, and being fair, transparent and feasible.

The first step is to agree what we mean by an acceptable GP, and this is the purpose of the RCGP’s Good Medical Practice for General Practitioners.

The college is asking for your views on the new draft of this at present. The second step is to say what tests will be applied, to what level, and how doctors will demonstrate their compliance.

This is the purpose of a document called Criteria, Standards and Evidence that is being worked up. When it is published, every GP and member of the public will see clearly what is expected.

What follows in this article is a personal view based on the early thinking for Criteria, Standards and Evidence. Whatever the college proposes will be put out for consultation and tested in pilots.

The plans will have to be approved by the GMC, which will want to be sure the college’s plans are fit for purpose and equivalent to those for other types of doctors.

Much of the evidence will be already available to most GPs. It will come through their appraisals, their audits – including significant events – their patient surveys and clinical governance.

Standard process

A new method of measuring continuing professional development is likely to form part of the package. One new element is likely to be multi-source feedback – asking your colleagues to rate you. It is a fairly standard process and such surveys are already part of regular appraisal at the GMC.

“We can design a process that is fair, fit for purpose and transparent”

At each annual appraisal GPs will be asked to share the evidence they are gathering. The appraiser will check both its quantity (is it enough for this phase in the five-year cycle?) and its quality (does it show good enough care?).

If it is insufficient, the appraiser will advise on how to improve it. At each appraisal GPs will plan what to put in the folder for the next year.

At the end of the five-year cycle, GPs will submit the folder of evidence containing enough for relicensure (continuing to be a doctor) and recertification (continuing to be a GP). There will be local sign-off from the PCT and appraiser.

If the folder meets the standards in Criteria, Standards and Evidence, the college will recommend you to the GMC.

As a five-year exercise, this sounds doable, but that will be tested through pilots – as will its effectiveness in sorting the vast majority who are good GPs from the few who are not. If the college cannot recommend a GP for recertification, there is no immediate effect.

The GMC would need to review the evidence and, if necessary, start fitness-to-practise processes. So for the few, the case that they are unacceptable GPs must be proven.

I believe we can design and implement a recertification process that is fair, fit for purpose, transparent and which is not too bureaucratic. I hope all GPs will look out for and comment on the college’s proposals.

The eventual system should be what you decide will be best for GPs and patients.

Professor Pringle is a council member of the RCGP, a member of the RCGP stakeholder group on recertification and a GMC council member

No

Under the current proposals for revalidation, all GPs need to be recertified every five years by the RCGP, in addition to annual appraisals by their local colleagues.

In order to be acceptable to the GMC for purposes of relicensure and revalidation, appraisals are to be based on seven Good Medical Practice criteria – good clinical care, maintaining good medical knowledge, teaching and training, surveys from patient questionnaires, peer questionnaires, probity, and health.

Based on satisfactory outcomes, doctors can expect to be given relicensure.

But the RCGP’s proposals for recertification go further. They rely on feedback from not just one’s peers, but also from nurses, managers and presumably other members of the healthcare team such as medical secretaries, health visitors and social workers.

“The views of staff are subjective and carry the risk of personal bias”

These proposals are seriously flawed in many respects.

Recertification, to be fair and fit for purpose, should be based not on third-party opinions but on an assessment of a GP’s knowledge and skills.

Such assessment should be measured by evidence of their participation in educational activities, the lessons learned from such activities, and an audit of disease management in different clinical areas – such as diabetes, coronary artery disease and COPD (chronic obstructive pulmonary disease ).

The remit of the RCGP is to come up with the criteria, standards and evidence needed to make a good doctor, to guide the appraisers, but not to take over the functions of the GMC, which has the sole responsibility for relicensing and revalidating doctors.

Patient and peer questionnaires can be a valuable tool for revalidation, and should be administered every five years as part of the revalidation process, which is a function of the GMC, not of the Royal College.

Information gathered from surveys of patient questionnaires selected at random can give valuable insight into the listening and communication skills of the doctor and can inform the revalidation process.

Peer questionnaires could also be used for revalidation, specifically to gather a cross-section of opinion from medical colleagues on a doctor’s qualities as a team member, referral patterns and adverse incidents.

But such questionnaires are not appropriate for recertification, which is all about assessment of knowledge and skills, rather than an assessment of a doctor’s continuing fitness to practise.

Wary of bias

We should also be wary of the dangers of seeking feedback from nurses and other members of the primary healthcare team, who may find themselves in an invidious position of either saying all the right things about a doctor with whom they have to work, for fear of offending, or saying things which are not strictly true based on mutual dislike.

Either way these views are unreliable and should not be used even for appraisals. They are too subjective to be of any real value and carry the risk of personal bias.

Doctors have hitherto been led to believe that appraisals will be formative rather than summative, and supportive rather than punitive, so that an appraisee can confidently and confidentially cooperate with the appraiser, knowing that the whole exercise is meant to help the candidate to learn from identified gaps in knowledge.

To retain the confidence of all doctors, appraisals should remain formative and supportive, with the sole exception of cases where a doctor’s performance is found to be so deficient that their continued practice could be a danger to patients.

In such cases – but only in such cases – an appraiser should be bound to share their concerns with the employer. But any more onerous system of appraisal could become a threat to thousands of doctors.

Dr Korlipara is an elected member of the GMC and former chair of the GP consultative group on revalidation

Pulse, CMP Medica. All rights reserved
(http://www.pulsetoday.co.uk/story.asp?storycode=4118904)

FOR MORE HEALTH STORIES SEE http://jeannehambleton77.wordpress.com

Minister calls for pain indicators in QOF (Quality

From the FMS Global News Desk of Jeanne Hambleton (UK)

Courtesy of PulseToday.com

By Nigel Praities -21 Apr 09

A Government minister has invited applications for new pain management indicators for the QOF in a parliamentary debate held yesterday.

Health minster Ann Keen said the inclusion of pain in the QOF was a ‘key issue’ and that she hoped organisations would submit proposed indicators for the next review.

The debate was proposed by Anne Begg MP, the chair of the recently formed All-Party Parliamentary Group on Chronic Pain, who said pain should be considered as a ‘vital sign’ for PCTs and incentivised through the QOF.

‘The inclusion of pain assessment in the QOF would strongly encourage health professionals to be proactive and to ask a patient about their pain, treat it promptly and reassess it to ensure that the treatment given is effective, rather than expecting the patient to raise it first,’ she said.

Ms Begg also criticised the complete withdrawal of co-proxamol by the MHRA, and quoted figures revealed in Pulse earlier this year that showed an increase in morphine and tramadol prescriptions as a result of the withdrawal.

In response, Ann Keen said Ms Begg had made a ‘persuasive and eloquent case’ for pain indicators in the QOF and she hoped pressure groups, such as the Chronic Pain Policy Coalition – would press for its inclusion.

‘I understand that the next opportunity to submit suggestions for new indicators to NICE will be this summer. I hope that the chronic pain policy coalition will take the opportunity to suggest specific indicators at that stage,’ she said.

A spokesperson from the Chronic Pain Policy Coalition confirmed it would submit a proposal for new QOF indicators for the routine management and assessment of pain to NICE later this year.

‘Given the important role GPs have to play in the early identification, diagnosis and management of patients with pain, we strongly believe that this is an area in which greater incentivisation through inclusion within the QOF indicators would have a considerable positive impact,’ he said.

(http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122478&c=2&cid=pain042209#)

IN THE HOUSE OF COMMONS 20 April 09 (Hansard source/TheyWorkForYou.com)

In the House of Commons on April 20 MP Anne Begg spoke about the Pain Management Services (England) as reported by Hansard and TheyWorkForYou.com

She said, “In the United Kingdom, 7.8 million people live with pain, day in and day out; that is the equivalent of about one in seven people in every single parliamentary constituency. I have asked for this debate in order to draw attention both to their problems and, more importantly, to some solutions that would not only improve the quality of life of so many of our constituents, but also reduce public expenditure on health, social care and incapacity benefits.

“If anyone is wondering why I, as a Scottish MP, am raising the issue of pain management services in England when health is a devolved issue, it is because I am the chairman of the recently set up all-party group on chronic pain. I suppose I should also declare an interest: I am one of the 7.8 million people in the UK who live with chronic pain.

“There could not be a better opportunity to consider the problem and suggest solutions. People in pain and the health professionals helping them have been pushing at a closed door for many years now. They have argued for early recognition of the needs of people in pain, early access to expert advice and treatment, and referral to a specialist pain clinic when necessary. That door was closed until recently; suddenly, it looks as though it is opening, and I am grateful to the chief medical officer for beginning that process.

MAJOR INITIATIVE

“His latest annual report, only just published, includes a chapter called “Pain: breaking through the barrier”. Sir Liam Donaldson looks at the issue of people living with pain in a sensitive and comprehensive way, and concludes with this statement:’A major initiative to widen access to high-quality pain services would improve the lives of millions of people.’ “

Ms Begg also said, “The evidence suggests that although pain services do exist in most secondary care NHS trusts, they are patchy, and variable in their resources and in the services that they provide. Crucially, the CMO’s report makes this point: each year, more than 5 million people in the United Kingdom develop chronic pain, but only two thirds will recover. Clearly, much more needs to be done to improve outcomes for patients. He reminds us that pain affects 7.8 million people, and that more than a third of households have someone in pain at any given time. Those figures are rising. Indeed, recent surveys suggest that chronic pain is more common now than it was 40 years ago.
Pain is becoming more common, but the effect that it has on individual lives is immense.

“The CMO highlights the fact that pain has a major impact on people’s lives, causing sleeplessness and depression, and interfering with normal physical and social functioning. That often leads to unemployment. He points out how it affects all age groups. Perhaps most worryingly, he states that 8 per cent. of children experience severe pain, that back pain alone costs the economy £12.3 billion per year and that early intervention may prevent pain from becoming persistent. In fact, it has been shown that the cost of chronic pain is greater than that of heart disease or diabetes.

“Looking at the limited number of specialist pain clinics, the CMO points out that systems and infrastructure do not meet need or demand, and that better co-ordination of services, and services designed around patients’ needs, are essential. Pain needs to be considered in its own right, because it is often the pain that dominates the patient’s life, not the illness or condition that causes the pain.

As one patient has said: ‘At first I presumed the pain would eventually go away and I would get better. I didn’t expect to develop chronic pain, or that it would stop me working and lead me to consider suicide. I just want my life back.’

Another said: ‘I am in constant and debilitating pain, often unable to do even the most simple activity such as making myself a cup of tea. I have daily bad headaches, and have no quality of life. It is making me very depressed and life is hell.’

Clearly, we have a duty to ensure that the individual has access to the right treatment as early as possible. That treatment has to come from a properly trained professional, and a multidisciplinary team if needed.

“I was surprised by the amount of interest that this debate has generated. I have been contacted by a number of organisations wishing me to raise their concerns. Age Concern and Help the Aged have particular issues relating to the elderly.

AGEING PROCESS

“They say that pain is not a normal part of the ageing process, and we should not accept it as such. We should challenge discrimination and ageist attitudes with regard to pain in older people. They say that constant pain can lead to a loss of dignity. Some 90 per cent. of calls to Arthritis Care’s helpline concern pain, most of them from people in severe pain. In the UK, pain crises account for 60 to 80 per cent. of emergency presentations in hospital admissions for sickle cell disorder.

CO-PROXAMOL WITHDRAWAL AND NAMED PATIENTS

“This is not the first time I have had an Adjournment debate on the issue of pain. Ever since the Government first indicated that they intended to withdraw the analgesic co-proxamol, I have been trying to persuade Ministers that it should not be completely withdrawn as a small group of people still has not been able to find an alternative and certainly not anything so effective. These are all people who suffer chronic pain, who are saying that only co-proxamol works not because they want to be awkward but because it allows them to carry on with their life.

“One person in that position has said: ‘With co-proxamol I had pain but it was bearable, now I can walk only a few steps before being forced to rest; before I managed to tend my flower garden, now I can only sit and feel depressed with pain and frustration’.

“I have several constituents who depended on co-proxamol but cannot now get access to it. While the Government say that co-proxamol is available on a named patient basis, that is of cold comfort to those whose GPs are refusing to prescribe the drug at all. GPs are not comfortable prescribing off licence as they do not always feel that they have the specialist knowledge. But consultants at pain clinics do.

“The main reason the Government gave for withdrawing co-proxamol was the suicide statistics. As it is now extremely difficult for even those who need the drug to access it, the incidence of suicide attributed to co-proxamol is now tiny. However, the use of stronger pain relief and particularly opiates has grown. A recent Pulse article says that there has been a 44 per cent. rise in prescriptions for morphine and a 61 per cent. rise in tramadol prescriptions. That cannot be good pain management, so I ask the Minister to look at this issue again.

“I have not, however, sought this debate to lay blame at the Government’s door on this matter: rather, I hope to encourage the Minister to consider the recommendations laid out in the chief medical officer’s report and to give due regard to their feasibility. I do not have time to discuss them all, but I do want to take this opportunity to bring some to the Minister’s attention.

PAIN TRAINING SHOULD BE EXTENDED

“First, training on chronic pain should be included in the curriculum for all health professionals who deal with patients. However, it is vital that this core training is extended to all health professionals, and in particular to GPs who, at the very least, should have pain training as part of their standard undergraduate education.

“Secondly, consideration should be given to the inclusion of the assessment of pain and its associated disability in the quality and outcomes framework—QOF—in primary care. That is an extremely important point, because the inclusion of pain assessment in the QOF would strongly encourage health professionals to be proactive and to ask a patient about their pain, treat it promptly and reassess it to ensure that the treatment given is effective, rather than expecting the patient to raise it first.

“A recent report on osteoarthritis found that 50 per cent. of people said that they would need to be in frequently unbearable pain before considering seeing their GP—clearly this is a significant barrier.

FIFTH VITAL SIGN – PAIN SCORE

“Another recommendation was that a pain score should become part of the vital signs monitored routinely in hospital. Indeed, the Chronic Pain Policy Coalition has been campaigning for some time now for pain to be adopted as the fifth vital sign. If implemented, this recommendation would ensure that health professionals become proactive in asking their patients about pain. People would recover faster and reduce the burden of care on others.

MODEL PAIN SERVICE OF PATHWAYS OF CARE

“The final recommendation I want to highlight relates to the development by experts of a model pain service of pathways of care with clear standards. The work could build on the excellent 18-week cross specialty chronic pain pathway developed by patients and clinicians that has been supported by the Department of Health.

“It is an important step forward and should be extended to ensure that all patients are offered comprehensive treatment options. That would improve rapid access and reduce the current variability in treatment that patients receive. Patients need to be confident that they can be offered effective options wherever they live.

“Commitments have already been made both in Scotland with the ‘Getting to GRIPS with Chronic Pain’ report and in Wales under the ‘Designed for Life’ programme to assess and improve the services available for patients with chronic pain. I hope I have shown the Minister that there are patients, third sector organisations such as Arthritis Care and health professionals in England anxious to get hold of these recommendations and take them forward. They will need encouragement and flexibility in the way in which integrated services are funded and in how outcomes are measured.

PAIN CHAMPION DEMANDED

“Above all, people in pain need a champion. Tsars such as Mike Richards for cancer and Roger Boyle for cardiology have shown how such champions can make a difference. Pain affects cancer patients and heart patients as well as millions of others with back pain, arthritis, pelvic pain and a multiplicity of conditions. Surely the numbers involved and the importance of early intervention demand a pain champion.

“I know that the concerns I have raised in this debate are shared by a number of my hon. Friends and indeed by many of their constituents. I thank the Minister for hearing me out, and I hope that she can give consideration to the points I have raised.

REPLY

Replying Ann Keen (Parliamentary Under-Secretary (Health Services), Department of Health; (Hansard source) congratulated Miss Begg on securing this Adjournment debate on a “most important topic, which Professor Sir Liam Donaldson chose to highlight recently in the 150th report of the chief medical officer.”

She said, “The report of the chief medical officer is an independent report to Government on aspects of the nation’s health and, as such, draws attention to a number of different major health challenges. In his annual report for 2008, the chief medical officer called for a major initiative to widen access to high-quality pain services to improve the lives of millions.

NATIONAL PAIN DATABASE

“I am delighted to inform my hon. Friend and the House that I received a letter from Professor Black, the chair of the advisory group, just before the Easter recess, and it recommended that the national pain database, run jointly by the Royal College of Anaesthetists and the British Pain Society, should be funded as part of the national clinical audit programme.”

EDITOR’S NOTE: On behalf of the fibromyalgia community living with chronic pain, numbering around two million, mainly women, me included, and those of us who survived thanks to co-proxamol, I would like to thank Anne Begg MP publicly for speaking out on our behalf.

Had I known Miss Begg was to initiate this debate I would, of course, have asked her to include fibromyalgia in her chronic pain list. Hopefully she will read this somewhere, sometime, and might think kindly of us when next raising chronic pain and co-proxamol.

For many of us co-proxamol, when it was £2.79 for 100 tablets, was an inexpensive painkiller. Had we known this it would have been cheaper than the prescription charge if we had been able to buy it. This was before the Government got involved. It was a life saver for those with fibromyalgia, and many others. In those days we had some relief…now it is pain 24/7 thanks those who meddled against the wishes of many doctors, consultants, a number of MPs and the patients. They did not give a jot about us at the ‘coal face’ living with pain for the rest of the life. Yes I have tried the alternatives and they disagreed with me and my IBS and gastric problems. They should have tightened the rules allowing those who really need it to be able to get it, prescribed without litigation problems.

Today albeit your GP knows you are in pain and you should be a named patient, after years of safely taking co-proxamol without a hint of any problems, he will not prescribe it due to the risk of litigation involved with prescribing an unlicensed drug. Mr. B. sitting comfy in his armchair (free of pain) with all found, at No.10, your Government has a lot to answer for…….. the loss of co-proxamol is most certainly one of them.

Letters to Anne Begg at begga@parliament.uk would I am sure be much appreciated by her especially if you make reference to her debate in the House of Common on 20 April 200 and give her more ammunition about your problems with co-proxamol and fibromyalgia. Maybe you will send a copy to me please -fmsglobalnews@me.com. Thanks.

For the background to the Co-proxamol debate and MP Anne Begg.
SEE: http://fmsglobalnews.wordpress.com/2009/03/13/co-proxamol-a-controlled-drug/

http://fmsglobalnews.wordpress.com/2009/03/24/prescriptions-for-opioids-jump-following-co-proxamol-ban/

http://jeannehambleton77.wordpress.com/2008/01/03/no-u-turn-on-co-proxamol-withdrawal/

http://jeannehambleton77.wordpress.com/2007/12/05/co-proxamol-bungled-withdrawal-is-a-farce/

http://jeannehambleton77.wordpress.com/2007/11/26/co-proxamol-withdrawal-debate/

SEE: http://jeannehambleton77.wordpress.com for more health stories

Natural doesn’t mean safe. And CAM is neither.

From the FMS Global and UK News Desk of Jeanne Hambleton

Courtesy of Pulse, CMP Medica. All rights reserved.

Professor Edzard Ernst Blog – 06 Apr 09

It is surprising how easily people fall for the argument that complementary or alternative therapies are safe, because they are natural. Yet on both counts, this argument is false.

One of the strongest selling points for complementary or alternative therapies is the notion that they are natural – and anything natural is, of course, safe is not it?

It is surprising how easily people fall for this nonsense – even GPs. And who can blame them? If we hear something a hundred times, we tend to believe it. This is called brainwashing! I can think of a lot of things that are natural and outright dangerous: an earthquake, a flash of lightning, a landslide, a tsunami, etc, etc, etc.

What is natural about sticking needles into people’s skin? What is natural about serial dilution as in homeopathy? What is natural about cracking bones as in chiropractic?
But seriously, most complementary or alternative treatments are neither natural nor totally safe. The answer is, not a lot!

But these treatments could still be safe. The trouble is however, that this notion is not true either. Sure, most of these treatments probably have less adverse effects than the powerful drugs of mainstream medicine, but risk-free? No.

One problem with assessing therapeutic risks reliably is that you need to actively look for adverse effect. The information rarely falls into your lap. So who is looking?

The answer is nobody.

Apart from the yellow card scheme which does cover adverse effects of herbal treatments, there is no mechanism in complementary or alternative medicine that would record adverse effects, not even serious ones.

Some years ago, I wrote to all UK professional organisations of complementary medicine asking them how they monitor adverse effects in their area of healthcare. The answers were almost entirely uniform: we do not need post marketing surveillance because we do not cause harm; this is only an issue in mainstream medicine.

So, is it fair then to say that we know of no risks because, so far, nobody has looked out for them? Not quite. We do know a little bit about risks of complementary or alternative medicine because, like sailing past the tip of an iceberg during bright daylight, we could not help noticing. But systematic knowledge akin to the one in conventional healthcare is usually not available.

For instance, we know of approximately 700 patients who suffered severe injuries, mostly vascular accidents, after spinal manipulation. Despite this impressive figure – a drug with this track record would probably have been banned long ago – most chiropractors insist that a causal link has not been established.

(http://www.pulsetoday.co.uk/story.asp?sectioncode=20&storycode=4122390&c=2&cid=ernst_blog040809#)

Why ‘belief’ in complementary medicine is misguided

Courtesy of Pulse, CMP Medica. All rights reserved.
Professor Edzard Ernst Blog – 23 Mar 09

Professor Edzard Ernst begins his blog by challening ‘belief’ in complementary and alternative medicine and answers the question ‘how come you are a professor of CAM and do not seem to be in favour of it?’

Have you ever heard anyone say, I believe in Aspirin, in bone marrow transplants, or in surgery? Probably not.

Have you ever heard someone proclaim to believe in homeopathy, energy healing or reflexology? I am sure you have. CAM – complementary and alternative medicine – is an emotive subject where belief reigns supreme over science.

But healthcare should not be about belief, it should be about facts: “Science commits suicide when it adopts a creed” (Thomas Huxley).

With this blog, I will try to regularly provide interesting facts, figures and views on CAM.

Such information might be handy when your patients come with printouts from the internet – there are currently around 50 million websites on “alternative medicine”, and the vast majority are dangerously misleading – or with cuttings from the daily papers. in Britain, newspapers carry roughly 3 times more articles on CAM than on conventional medicine.

About 20% of your patients use some form of CAM and most of them will not volunteer this information to their GP. Therefore, GPs should know more about CAM.

For or against CAM?

The question I hear regularly is “how come you are a professor of CAM and do not seem to be in favour of it?”

I usually answer that a toxicologist’s task is not to dish out poisons to patients. People then tend to give me a blank smile, and I realize that I have probably failed to get my point across.

And yet, it is a simple point: I do not see myself as a promoter of CAM, nor am I an opponent of it. My task is merely to research the subject and subsequently present the findings. This I have done for 15 years. It resulted in over 1000 articles in the peer-reviewed literature. Through this work, many issues have become quite clear.

CAM is currently dominated by belief and by misinformation. Some of this misinformation puts patients’ health (or savings) at risk. So I often feel compelled to speak out and try to put the record straight. This does not always make for cosy friendships, and some people may even feel attacked. Yet I am not in the “attacking business” – merely in the “truth telling business”.

Convinced? No? Perhaps I can give an example relevant for general practice. In our book, ‘The Oxford Handbook of Complementary Medicine’, my three co-authors and I try to clearly point out what the evidence for a wide range of CAMs shows.

In the chapter on hypertension, for instance, we state that, according to reliable studies, biofeedback lowers systolic and diastolic blood pressure. We also tell our readers what to expect of around 30 other CAM treatments that have been tested for antihypertensive effects. Lastly we point out that the best clinical evidence available to date indicates that chiropractic might cause more harm than good for this indication.

I hope that this example demonstrates that I am neither for or against CAM. All I want is sound evidence, transparency and single standards in medicine. And this I will try to provide here.

(http://www.pulsetoday.co.uk/story.asp?sectioncode=20&storycode=4122202)

Complementary therapies do not save NHS money

Courtesy of Pulse, CMP Medica. All rights reserved.

By Nigel Praities – 30 Mar 09

Complementary therapies can improve quality of life but there is little evidence they reduce NHS costs, new research concludes.

The first study to review all the evaluations of NHS complementary therapy services showed positive changes in the health status of patients but mixed evidence on cost.

The University of Bristol researchers collated data from 21 evaluations of 14 NHS services and found SF36 general health scores were increased in all studies where they were measured, with increases ranging from 0.5 to 8.9.

Figures on costs were variable, with a study of a homeopathy service showing total prescription savings of nearly £9,000, but others showing no change or increases in costs of around 50 pence per patient.

Dr Lesley Wye, lead author and research fellow in primary health at the University of Bristol, said: ‘The health status data seems to suggest that people using these services are feeling better, that they notice some sort of a difference.

‘But in terms of NHS cost it was all over the place. Some of them showed the cost went up, some went down and some it stayed the same,’ she said.

The researchers warned there was a need for ‘greater rigour’ in how the NHS measures the success of complementary therapies, with more data on health outcomes and a better evaluation of costs.

Dr Catherine Zollman, a GP who provides several complementary therapies at her practice in Bristol, said the study showed how difficult it was to collect data on the benefits of complementary therapies, but that this did not mean they were not useful for some patients.

‘I think it depends on the patient and the condition, but I think there are certain pockets where the NHS could make really big savings,’ she said.

The study was published this month in BMC Complementary and Alternative Medicine journal.

Pulse, CMP Medica. All rights reserved
(http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122291)

Prescriptions for opioids jump following co-proxamol ban

From the FMS Global News Desk of Jeanne Hambleton

Courtesy PulseToday.co.uk.

By Lilian Anekwe – 17 March 2009

Opioid prescriptions have jumped during the withdrawal of co-proxamol, with GPs apparently struggling to find adequate means of pain control for some patients.

Prescriptions for morphine have risen by more than 40% and those for tramadol by two-thirds since co-proxamol use was first reduced in anticipation of the drug’s withdrawal.

An analysis for the Medicines and Healthcare Products Regulatory Agency, obtained by Pulse under the Freedom of Information Act, reveals prescriptions for co-proxamol plummeted from 835 million in 2004 – the year prior to legislation on its withdrawal – to 121 million in 2007.

But over the same period, opiod prescriptions overall rose by 40%. Prescriptions for morphine rose by 44%, from 757,000 in 2004 to 1,093,000 in 2007, and tramadol prescriptions increased by 61%, from 3,130,000 to 5,036,000.

Co-proxamol was removed from the British National Formulary on 1 January last year, but the NHS Information Centre analysis shows GPs continued to prescribe co-proxamol to approximately 150,000 patients in England on a named-patient basis.

The MHRA downplayed the impact of the withdrawal and said the ageing population was to blame for increasing demand for analgesics. But the agency’s pharmacovigilance group concluded: ‘Opioids, especially tramadol, have followed an increasing trend and some patients may have been switched to this class of analgesic.’

Dr Adam Bajkowski, a GP in Wigan and president of the primary care rheumatology society, said the analysis suggested the MHRA’s argument that full-strength paracetamol was as effective as co-proxamol was flawed: ‘If GPs are having to switch patients to a stronger opioid, then it suggests the MHRA’s reasoning wasn’t really true.’

READERS’ COMMENTS
MHRA | 20 Mar 09
Your report on analgesic prescribing following the withdrawal of co-proxamol presented a distorted picture of the relevant information.

The withdrawal of co-proxamol in the UK has saved approximately 300 lives per year and there is no evidence that the death rate due to other analgesics is increasing. Prior to the withdrawal of co-proxamol, the MHRA issued guidance on pain management from the former Committee on Safety of Medicines (now known as the Commission on Human Medicines) to help doctors find the best options for individual patients, setting out a graduated range of possible therapeutic interventions.

Opioid prescriptions have not “jumped” during the three-year phased withdrawal of co-proxamol, as suggested in the article, and we do not have evidence that patients are being switched from co-proxamol to other opioids. Even though opioid prescriptions have increased steadily over the last 5 years they still make up a very small proportion of the overall prescriptions for painkillers.

There were increases in the numbers of prescriptions of paracetamol and of co-codamol around the time of the co-proxamol withdrawal. These increases were sufficiently large to suggest that patients may have been switched from co-proxamol. A research project to look at the analgesics that patients have been switched to will be started shortly.

Pulse, CMP Medica. All rights reserved.
(http://www.pulsetoday.co.uk/story.asp?sectioncode=23&storycode=4122142&c=2)

EDITOR’S NOTE As someone who suffers with pain 24/7 from fibromyalgia, I managed very nicely with co-proxamol and some pain killing gel for the aches and pains until the withdrawal on December 31 2007. We were promised that those who really could not manage without it would be prescribed on a named patient basis. The Government and the Ministers failed to mention the under handed action of making co-proxamol an ‘illegal’ drug.

After I fought my own personal battle to reverse the withdrawal and tried to become a named patient, all unsuccessfully, I tried the alternatives which aggravated the old IBS. So I am left with nothing but pain. My GP will not prescribe co-proxamol for fear of litigation and I do not want to fill my body with drugs where the side effects for me are unbearable.

Why was co-proxamol not listed as a controlled drug. Those in need could then have received the pain relief they need so badly.

I imagine with the increase in these alternative medications mentioned in the article above, the cost of pain treatments has soared against what was a relatively cheap pain killer – £2.79 for 100 tablets – before the Government got involved. Is it any wonder the NHS is always short of funds and this is just a small example of failure to see the whole picture.

Why did GPs stop prescribing co-proxamol read this article from Pulse just after the withdrawal on 17 January 2008.

PCTs threaten GPs over co-proxamol

By Nigel Praities – 17 Jan 2008

PCTs are piling pressure on GPs to switch patients from co-proxamol to alternative medication, after the reimbursement price of the drug soared with loss of its licence.

In December 2007, co-proxamol was listed as Category M medicine with a reimbursement price of £2.79 for 100 tablets. From January 2008 it has been available as an unlicensed drug, but has been changed to Category C with a reimbursement price of £20.36 for 100 tablets – a sevenfold increase in price.

The price hike has galvanised trusts into action, with several already having contacted GPs to urge them to prescribe alternative analgesics, just weeks into the new year.

West Essex, Islington and West Hertfordshire PCTs are all planning, or have already, written to GPs about the price increase.

Norfolk PCT is planning a series of meetings and individual visits to reinforce the status and cost of co-proxamol to GPs. Other PCTs have indicated to Pulse that they are monitoring the situation in their area before taking action.

Dr Iain Gilchrist, a GP in Essex and treasurer of the Primary Care Rheumatology Society, who has taken all his patients on co-proxamol off the drug, said the price increase would put even more pressure on those GPs still prescribing it.

‘No doubt with GPs who still have patients on co-proxamol, the prescribing advisors will be wanting to have a little word in their ear. There is nothing like a price hike to concentrate the mind,’ Dr Gilchrist said.

Dr Gilchrist received an email in early January from a prescribing adviser at West Essex PCT, which said the price of co-proxamol had ‘rocketed’ and is a ‘very expensive option, as well as being unlicensed.’

PCTs are worried about the cost implications as many practices have struggled to find alternatives for many of their patients on the drug. A Pulse investigation in December revealed as many as 60,000 patients may still be on co-proxamol and 60% of practices reported that a hard core of their patients continued to take it.

The latest pressure from PCTs adds to the medico-legal headache surrounding co-proxamol. Patients can still be prescribed the drug on a named-patient basis, although GPs assume legal liability if they continue to prescribe the unlicensed drug.

TROUBLED WITHDRAWAL OF CO-PROXAMOL

Jan 2005 – MHRA announces withdrawal of co-proxamol
Oct 2006 – A Pulse survey reveals 70% of GPs demand the MHRA review its decision
Jan 2007 – MPs demand u-turn on withdrawal at special House of Commons debate
Oct 2007 – 60,000 patients remain on co-proxamol
Dec 2007 – Final withdrawal of co-proxamol
Jan 2008 – PCTs panic as price of co-proxamol soars

(http://www.pulsetoday.co.uk/story.asp?storycode=4116799)

On 21 September 2006

One GP asked, “Is it time for a rethink on the co-proxamol ban?”

Co-proxamol is so accessible because it is the most useful analgesic in general practice and so a lot has been prescribed.

The academics who recommended banning it have made a kneejerk reaction without listening to those of us facing the realities at the coalface of medicine. All the alternatives, including paracetemol itself, are more toxic than co- proxamol. Tablet for tablet, they all have more paracetemol than co-proxamol. Dextropropoxyphene is not toxic to the liver. Paracetemol, co- codamol and co-dydramol are all readily available, more toxic and more expensive than co-proxamol, tramadol and so on.

Prescriptions will increase. More bleeds, more deaths and more drug interactions will occur. There will be more prescriptions for laxatives, more bowel obstructions, more hospitalisations. Drug costs will go up substantially and more successful suicides will occur.

I plead – think again. What do other GPs think?

(http://www.pulsetoday.co.uk/story.asp?storycode=4010484)

EDITOR’S NOTE: Just this week a member of my own family haas been hospitalised for 36 hours. The hospital doctors blamed the medication (pain killers) prescribed for broken bones. He was lucky to be diagnosed quickly or the complication might have been fatal. Afraid to take more medication he is living with unbearable pain. If he had been taking co-proxamol I doubt this would have happened. I literally ‘lived’ on co-proxamol for almost five months when I broke my wrist and my pelvic bone in three places – without any side effects.

So what do you think? Are you ready to press your MP to ask questions in the House to have co-proxamol licensed as a controlled drug?

A ‘Murky Business’ – Yes it is REAL

AP Associated Press IMPACT:

Drug makers’ push boosts ‘murky’ ailment

Collated by Jeanne Hambleton FMS Global News Desk ©2009        

 

A ‘Murky Business’ – Yes it is REAL

AP Associated Press IMPACT:

Drug makers’ push boosts ‘murky’ ailment

Collated by Jeanne Hambleton FMS Global News Desk ©2009        

 

Business Writer Matthew Perrone for AP: Associated Press has  “set the cat among the pigeons” with his reference to fibromyalgia and ‘murky ailments’. Posted in Washington on February 8 2009, this article has the promise of the same reaction given to the infamous IS DISEASE REAL article on fibromyalgia that appeared in the New York Times.

 

The  above story by NY Times reporter Alex Berenson published January 14, 2008 can be read at  <http://www.nytimes.com/2008/01/14/health/14pain.htmlem&ex=1200459600&en=bac45d5aff5a17d7&ei=5087> 

 

The members of the fibromyalgia community who are somewhat sensitive about questions suggesting FMS is an imaginary illness, has risen to the bait and letters are flocking in from around the USA where the article was published and in the UK, where it has been given coverage by FMS Global News.

 

Matthew Perrone, a business writer, suggests huge sums of money were provided by two drug companies last year in an endeavor to raise awareness of a “murky illness” as well as boost the sales of their medication recently approved by the Food & Drugs Association (FDA.). The writer claims the drug companies have been “drowning out unresolved questions” …. “whether it is a real disease at all”. 

 

Oooophs. That went down like a lead balloon.

 

Matthew Perrone discovered that the two drug companies, Pfizer and Eli Lilly, have in the first nine months of 2008 donated upward of $6 million towards educational events and to supporting non-profit making medical conferences. He claims this sum is greater than funds given to Alzheimer’s and diabetes. Top priority for funding by Pfizer was for cancer, AIDS and the fibromyalgia. Similarly Eli Lilly favoured cancer, depression and fibromyalgia.

 

While reminding readers that the cause for fibromyalgia still not known, with no specific test to confirm diagnosis, patients often showed overlapping symptoms with other neurological diseases. He claimed the specialists are in no doubt about the pain these patients suffer but they cannot agree how it should be treated and what illness it actually is.

 

It is believed by many patients and doctors, says Matthew Perrone, that the actions of the drug manufacturers are helping to solved the mysteries of fibromyalgia within the medical profession. He does acknowledge that patients with fibromyalgia say doctors often disbelieved them claiming the pains are imaginary or “all in your head.”

 

The article adds “critics say the companies are hyping fibromyalgia along with their treatments, and that the grant making is a textbook example of how drug makers unduly influence doctors and patients.”

 

Dr Frederick Wolfe, a member of the panel who helped to definite the criteria for fibromyalgia and adopt the name in 1990, suggests the drug companies are guilty of  “a little disease-mongering” to encourage patients to buy their medication. The business writer reports that the companies have been successful in the actions showing huge increases in sales and profits between 2007 and 2008 for Lyrica and Cymbalta –both approved for the treatment of fibromyalgia by the FDA. 

 

Responding to questions from the author the drug companies say their actions are “just the evolution of greater awareness” of a condition that has been poorly managed and neglected. 

 

The article includes the story of a patient taking both Cymbalta and Lyrica and three other medications. Describing her medicated condition as fibro fog she is quoted as saying she is so medicated she feels as though she is not here. Struggling to find money for her medication she claimed she is receiving free samples of Lyrica from the drug company representative to help her get through the month.

 

The article reports both drug companies spent of $125 million on advertising in the first nine months of 2008.

 

Grants from the drug companies are available for education for doctors, non-profit making groups and advocacy. Some of this money is used for research and patients outreach.

 

President of the USA National Fibromyalgia Association Lynne Matallana is quoted as saying lack funding would impact on patients’ care due to lack of money for medical education. Matthew Perrone claims that 40% of the funding for the $1.5 million a year Association’s operations is provided by corporate funds, like those given by Eli Lilly and Pfizer. Lynne Matallana who has fibromyalgia claimed she visited 37 doctors before being diagnosed.

 

In a Pfizer television commercial the drug company acknowledged fibromyalgia is real, but Matthew Perrone says the researchers report it is not that easy. The condition usually known as a syndrome, has been described as a disease, a collection of symptoms and even a behaviour disorder.

 

This description suggesting a behaviour disorder has caused some concern among the fibromyalgia community who insist it is not a mental disorder.

 

It is thought that up to 12million people in the USA may have fibromyalgia in the USA with a large percentage of them women.

 

Market research on behalf of the pharmaceutical industry indicated that possibly 50% of this number are not diagnosed said Dr. Daniel Clauw (University of Michigan).

 

Dr. Don Goldenberg (Tufts University) who has spent 30 years working with fibromyalgia claims it remains a “murky area”.  He said patients preferred to have a name for what ailed them.  It was suggested that while Dr. Goldenberg is a diagnosing patients he said a number of doctors no longer diagnosed FMS patients suggesting it is a “catchall covering a range of symptoms”.

 

A professor at the University of North Carolina Dr. Nortin Hadler believes identifying fibromyalgia can “doom” patients to endure suffering for the rest of their lifetime and just confirms to them that this is a condition with no cure.  Dr. Hadler said the likelihood for patients diagnosed with fibromyalgia improving was “pretty dismal”

 

His view was that fibromyalgia was not a medical disease but a psychological condition (‘having to do with the mind’). He believed therapy should be available instead of drugs and medication, to help patients “unlearn” their problem.

 

Dr. Clauw whose research has revealed patient’ brains reveal  “unusual activity” when suffering pain, confirms fibromyalgia is a legitimate disease and he had no time for experts who analyse definitions instead of helping patients.  He also agreed that the new drugs approved by the FDA do not work for all  patients.

 

This article is a summary of  a story published by AP Associated Press distributed by Google.  © 2009 The Associated Press. All rights reserved.

http://www.google.com/hostednews/ap/article/ALeqM5jZDQjkt1twJK_3GpRKJUbXZ_-oMwD967HPG81

 

Fibromyalgia is not ‘murky’ to millions of people who live with it

Letter to the Editor of CantonRep.com  Posted Feb 13, 2009 

 

I read with interest “Drug makers push boosts a ‘murky’ ailment” (Feb. 9). I am both a patient with fibromyalgia and a physician who specializes in this condition, so I find it incredible when the article refers to so-called experts who are skeptical that the diagnosis even exists and that drug makers are somehow responsible for perpetuating this condition. 



Fibromyalgia is not “murky” to the many millions of patients worldwide who have it, and to the thousands of doctors who diagnose and treat it. It is a real condition with its own insurance code, specific diagnostic criteria and proven helpful treatments. It is recognized by major medical and legal organizations, including the Food and Drug Administration. 



We have not found a cure yet, but ongoing research is necessary to help improve the quality of lives of those who suffer from this chronic disease. To date, the FDA has approved three medicines for treatment of fibromyalgia pain.

These so-called experts mentioned in the article do not believe fibromyalgia exists, thus they never diagnose or treat it. To me, no experience with this condition means no expertise. Fortunately for patients, there are many primary-care doctors and specialists  (in the USA) who understand, research and treat fibromyalgia: the true experts. 



Unlike the critics, these professionals have actual experience and skills in trying to improve lives affected by chronic pain and will prescribe approved medications, not blame drug makers or patients for the pain. The true experts may not be as vocal as the so-called experts, but their efforts to help those with fibromyalgia have spoken the loudest. 


MARK J. PELLEGRINO, M.D., 

JACKSON TOWNSHIP

Reproduced courtesy of CantonRep.com Connecting Stark County

(http://www.cantonrep.com/opinion/letters/x817675485/Fibromyalgia-isnt-murky-to-millions-of-people-who-live-with-it)

 

National Fibromyalgia Association’s Response to

AP Article on Drug Companies & Fibromyalgia

Fibromyalgia & CFS Blog Friday February 13, 2009

By Adrienne Dellwo, About.com Guide to Fibromyalgia & CFS

 

The inaccuracies of the recent AP report, Drug makers push boosts ‘murky’ illness, go even beyond what I pointed out in a recent blog. Here is the response from Lynne Matallana, president of the National Fibromyalgia Association:

“To the editors:

“The recent Associated Press story on fibromyalgia hardly qualifies as news; it merely regurgitates the same arguments that have been published in the past and offers the opinions of the same two men who have built careers out of drawing attention away from the hundreds of scientists who continue to make amazing scientific strides toward understanding the underlying cause(s) and pathophysiology of what fibromyalgia patients experience.

 

“By perpetuating this message, the article implies that it is more acceptable to debate names or labels for this “set of symptoms” and to point fingers at the usual “villains” (i.e.: pharma and the non-profits who accept money from them), than to focus on the millions of desperate patients who deserve to have a voice in the discussion.

 

“The fact is that credible medical institutions and organizations recognize fibromyalgia as a life-altering disease; the fact is that patients who suffer with FM depend on the medical system (including pharmaceutical companies) to help them inform the public that this is a very real illness and that they need treatments, including pharmaceutical agents, to help them get through each day and to look forward to some sort of quality of life in the future.

 

“This article misinforms readers in a way that undermines and victimizes innocent people. By telling only selective parts of the story the author is perpetuating misperceptions and making it difficult, if not impossible, for readers to grasp what is truly important: that we need to stop debating and pointing fingers and start asking why it is perceived as acceptable to stigmatize a patient population just because medical research has not yet provided us with all the information needed to understand that particular illness. Every illness seems to go through a stage of having to prove its legitimacy, but why should the patients be suspect during that phase of research?

 

“Why would AP print information that is simply not true – people with fibromyalgia are “more likely to have a history of mental illness and are economically disadvantaged?” That is totally false, as is the writer’s statement that the National Fibromyalgia Research Association received pharma money to fund Dr. Clauw’s functional MRI study. The money for all of the NFRA’s funded research came from the founder (the husband of a fibromyalgia patient), general donations, and revenue generated from a non-profit bingo game. (Yes, the FM community has had to rely on bingo games to fund our research!)

 

“How can we allow the system to fail millions of people whose only ‘fault’ is to have developed a devastating illness? Along with the rest of the fibromyalgia patient community, I look forward to the day when society (including the medical community, the media, and our government agencies) accepts the responsibility of treating fibromyalgia patients like any other group of chronically ill patients; when it is a given that fibromyalgia will be further studied, that treatments will be developed and made accessible to patients, that the media presents the facts rather than perpetuating threadbare controversies.

“Now that would be news worth printing.

“Sincerely,

“Lynne Matallana

President, National Fibromyalgia Association”

Courtesy About.com

http://chronicfatigue.about.com/b/2009/02/13/national-fibromyalgia-associations-response-to-ap-article-on-drug-companies-fibromyalgia.htm

 

A ‘Murky Business’. Yes it is REAL

http://fmsglobalnews.wordpress.com

 A FIBROMITE’S RESPONSE

 

To the Editor and Business Writer Matthew Perrone Associated Press (info@ap.org).

Dear Sirs,

It is with great distress that I have read the article that denies the existence of this truly horrible illness. I would like to stress firstly that I am not a previous sufferer of mental illness, although I am now being treated for depression, and I am from an economically secure background.

 

Just answer me one question, if this illness is all in my head, how come so many millions of us suffer from such similar symptoms. Are we transmitting then to each other telepathically? We do not suffer identical intensity of each symptom, some us have irritable bowel syndrome worse than others for instance, but we all suffer from unexplained severe pain, terrible tiredness and loss of the quality of our lives.

 

I, sir, am a qualified psychologist who for a long time thought I was going mad, especially as every test I had came back negative. To actually realise that the awful symptoms I was suffering were not a result of “being in my head” came as a great relief and if drug companies are making profits that can be used to find out what causes this and find a cure I say hallelujah!!!

 

Articles like this do nothing to help and indeed set us back and damage us immeasurably in our quest to be taken seriously and find a cure.

 

Yours in despair

Carolyn from Felpham, West Sussex. UK

 

 THE FIBROMYALGIA COMMUNITY RESPONDS

 TO ASSOCIATED PRESS ARTICLE

 

1. The Associated Press article by Matthew Perrone (February 8, 2009, “Drug makers’ push boosts ‘murky’ aliment) has drawn several comments.

Click here to read the article.

Click here to read the NFA’s response, as well as some comments by other readers.

To send a letter to AP business editor Kevin Noble or writer Matthew Perrone, email info@ap.org  (no attachments).

2. The NFA is in the process of contacting media outlets across the nation that published Mr. Perrone’s article. In addition to sharing the disappointment of the fibromyalgia community, our response provides accurate information about fibromyalgia, including the science behind fibromyalgia and the lack of research funding.

3. For a list of 10 ways to respond to negative and false Information about fibromyalgia, click here.

4. Several points made in the AP article were addressed by fibromyalgia experts on February 11, 2009 during a medical talk show produced by Patient Power. Guests included leading FM researcher Daniel Clauw, MD, professor of medicine in the Division of Rheumatology, University of Michigan Health System; Martha Beck, Ph.D., who has been diagnosed with fibromyalgia; and Lynne Matallana, president and founder of the National Fibromyalgia Association. Click here to listen.

5. The NFA has created two information sheets—the Fibromyalgia Fact Sheet and Recognition, Research and Science—for your reference and use in helping dispel misunderstandings about fibromyalgia.

Click here to view the Fibromyalgia Fact Sheet.

Click here to view an overview on Recognition, Research and Science.

6. In addition to a variety of articles about managing FM symptoms, overlapping conditions, and healthy lifestyle choices, the NFA’s 10-year anniversary issue (September-November 2007) includes a special section on the History of Fibromyalgia. Topics include:

The state of FM and how it has changed in the last 10 years

How changing perspectives on FM have impacted the specialties that focus on it  

How patients have succeeded in changing public perception of FM

The latest studies on medications commonly prescribed to treat FM. Click here 

 

Undermining the Validity of FM


Sharon Waldrop – Director, Fibromyalgia Association of Michigan USA

 

My name is Sharon Waldrop. I am the Founder and Director of the Fibromyalgia Association of Michigan, a volunteer nonprofit organization. I am a patient living with fibromyalgia (FM) and I am deeply disappointed in the article that ran yesterday in the Free Press copied off the AP. I am writing to you to ask if you would do a story on fibromyalgia to provide a balanced report on fibromyalgia? 

I am very sad that the millions of people who are suffering and struggling every minute of every day with fibromyalgia never get a chance to give their viewpoint in the media. Instead articles are written to please editors who have a formula that dictates what type of story “gets attention” and therefore gets printed …never taking into consideration or caring about the ramifications that their message will have on millions of innocent people.


The ramifications are that more marriages crumble, friendships (i.e. support systems) end, people lose jobs, people are denied access to care because the opinions of a select few are given mass attention. Credible medical institutions like Johns Hopkins University, the University of Michigan, the National Institutes of Health, (just to name a few), recognize fibromyalgia as a life-altering disease. It is time to treat FM patients with respect. Millions of people suffer from FM.  Millions more are suffering too as they watch their loved one struggle. These people do not need to read stories that FM is not real. They need to read stories about the exciting medical advances in fibromyalgia like the brain imaging study done at the University of Michigan that concretely prove people’s brains with FM act differently than people without FM. 

They need to be given hope and given the treatment they deserve as a human being.

My group has over 800 members in the Metro Detroit area.  We provide support and education to people affected by fibromyalgia.  People come to me in tears because they don’t know where to go for help. I am pleased that for 11 years I have given people a place to go – even if it is just for one night a month. No human being should have to fight an illness and also fight with spouses, friends, employers and yes, even doctors that they are in disabling physical pain. The question is not why do we continue to undermine the validity of FM but why are people afraid to provide support to people suffering from the chronic pain of fibromyalgia?
 In this time of uncertainty in the world, people more than ever need hope and help. Please will you write a story to help your readers understand FM? On behalf of my group we would greatly appreciate it.

 

Is Fibromyalgia Real?
 Andrew Schorr -
Founder Patient Power

We could have predicted it. Naysayers who say that now there are three approved prescriptions medicines for fibromyalgia, a chronic pain syndrome, marketing is fueling hype hype about a condition some people say is all in a patient’s head.

Here we go again. The drug companies are always an easy target. When a drug is a success it can bring in more than a billion dollars a year. Treatments are costly and many people, including millions with no insurance or who are under insured, struggle to pay for them. So the pharmaceutical industry continues to have a public relations problem.

But none of that has anything to do with whether people, primarily women, are suffering with debilitating pain, pain that is effectively treated often by the approved medicines.

Critics including some doctors say that because there is no definitive test for fibromyalgia it is a disservice to rush to treatment with the new drugs when maybe some patients need psychotherapy instead. It is in the patient’s head.

I am not qualified to evaluate who needs the medicines and who does not. But I do know this: the FDA advisory panels and the FDA itself would not have approved the medicines, nor would the drug companies have invested hundreds of millions of dollars on clinic trials, if they had no effectiveness.

After approval the drug companies have hit the airwaves with television commercials and with websites trying to raises awareness for the condition and that there are approved treatments. They also have been funding education programs to connect rheumatologists, who know all about fibromyalgia, with many primary care doctors who don’t. And they are funding patient education in partnership with groups like the National Fibromyalgia Association, founded by a patient and an organization that has cried out for awareness and effective treatments for years.

Is this public and medical education effort a bad thing?

Some media reports suggest it is: getting doctors and the public in a tizzy about a phony or overused diagnosis fueled by greedy drug companies who want to make billions. Oh please! While one could argue such important issues should be debated, I think we should focus on how to help give suffering patients relief from their pain and celebrate that private industry has made huge investments to meet the need.

Do we need to sort out exactly who needs these treatments and who could benefit in other ways? Sure. But to cast the same old aspersions on the drug companies is unfair and if we keep skewering them one day we can kiss drug development goodbye. The next time you swallow a pill that helps, you ask yourself what the world would be like if no one invented or marketed products like that.

 

FIBROMYALGIA Painfully Real 

Frederic Porcase Physician,

Jacksonville USA

 

Monday’s article demeans all of us with fibromyalgia.

The horrible part was the “Mind over Matter?” stating, “Patients diagnosed with fibromyalgia are more likely to have a history of mental illness, be overweight and economically disadvantaged. Some doctors say their suffering may stem from difficult circumstances rather than disease.”

I run a support group for people with fibromyalgia, and that is not the case. We are all type “A” personalities who have been forced to change our lives due to this horrible disease/syndrome.

All of us would give up our “great” disability funds for the more profitable lives we were living before the chronic pain and fatigue. We may be overweight now, due to not being able to exercise, but this was not the case before the chronic pain and fatigue started not after the diagnosis.

We all had the symptoms years before we actually got a diagnosis. No, we are not hypochondriacs. Fibromyalgia is an invisible disease. Thank goodness we don not look as bad as we feel. Walk in our shoes just one day and then say we have a mental disorder.

Courtesy Opinion.jacksonville/com

http://jacksonville.com/opinion/letters_from_readers/2009-02-11/story/letters_from_readers

 

Utterly real

Letters Published: Tue, Feb. 10, 2009 

Taryn Oesch – Raleigh USA

 

I was diagnosed with fibromyalgia when I was 13 by a Duke rheumatologist. It was a struggle to get back to feeling healthy, but it was a relief to know that I wasn’t imagining my achiness and debilitating fatigue. I have always considered myself fortunate to live in a time when fibromyalgia is considered a real syndrome.

The Feb. 9 Associated Press article “Help or hype? Drug makers fibromyalgia grants raise questions,” however, made me realize we still have a way to go.

Apparently, there are still those who would question the diagnosis, despite the fact that it has helped many people. It disturbed me especially that the article seemed to sympathize with the skeptics. Having a complaint of “I’m very tired” is hard enough to try to explain to professors or employers. 

The only press those of us with fibromyalgia need is press that makes everyone more aware that yes, fibromyalgia is real and yes, its diagnosis is backed by medical research.

 

 

Courtesy The News&Observer

http://www.newsobserver.com/opinion/letters/story/1401086.html

READERS: If you are writing to the Editor of Associated Press or the Business Writer Matthew Perrone, please send a copy of the email to me. I am interested and would like to publish your comments. Thanks. Please write to fmsglobalnews@me.com.Jeanne 

 

 

 

Declaration of the European Parliament on fibromyalgia (1.26.2.)

From the News Desk of Jeanne Hambleton 

Bulletin EU 1/2-2009 - Health and consumer protection (2/3) PROVISIONAL VERSION

1.26.2. Declaration of the European Parliament on fibromyalgia.

Adopted by the European Parliament on 13 January. Parliament called on the Council and the Commission to:

develop a Community strategy on fibromyalgia in order to recognise this condition as a disease;
 

help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting EU and national awareness campaigns;
 

encourage Member States to improve access to diagnosis and treatment;
 

facilitate research on fibromyalgia through the work programmes of the seventh framework programme for research and technological development and future research programmes;
 

facilitate the development of programmes for collecting data on fibromyalgia.

Fibromyalgia Centers of America Announces Treatment Center in Illinois

From the News Desk of Jeanne Hambleton 

 

The Nationwide Group of Doctors of Fibromyalgia Centers of America has opened a fibromyalgia treatment center for the Joliet / Crest Hill region.

Fibromyalgia Centers of America is a nationwide group of doctors dedicated to researching and sharing with other doctors effective treatments and techniques for treating fibromyalgia.

Each treatment is specialized according to the individual, and through collaboration with doctors across the nation, treatments are not only personalized but offer technological breakthroughs not previously available.

Fibromyalgia Centers of America (fibromyalgiacentersamerica.com) is dedicated to helping people who suffer with fibromyalgia syndrome and also helping those that have the same symptoms, but have not been diagnosed.

Treatment begins when you are ready to find out the cause of your problem. A board-certified and licensed doctor will personally sit down and consult with you.

General signs and symptoms of Fibromyalgia include: tempo mandibular joint dysfunction, skeletal pain and whole body aches, fatigue, trouble sleeping, depression, chronic headaches, bowel disturbances, anxiety, racing heatbeats, and decreased coordination.

Trigger points are areas of tenderness in a muscle, and trigger points may be associated with myofascial pain syndromes or Fibromyalgia.

With over 100 clinics nationwide, the Crest Hill location is the first to come to the Metro Chicago area.

 

Editor’s Note

What great news for those suffering with this invisible disability in the USA and good luck. But when will we have  a similar nationwide organisation in the UK. We are, after all, light years behind the States and Canada. We are waiting for  someone to get started with a string of  FMS  UK centres – http://www.fibromyalgiacentresbritain.co.uk maybe ???.

We are grateful to Professor John Davies and  his team for their stirling work in the fibromyalgia field  at Guy’s and both his FM Clinics,  and the small pockets of professionals and researcher beavering away, but we need more recognised help nationwide – much more including a substantial grant  from our Government to fund  fibromyalgia research. Even a national register of where FMS help is available would help those suffering with FMS.

These centres could be used for a rota of complementary therapies, physiotherapy,  to care for our teeth, feet etc. and small groups of researchers. This would help cover the cost of providing a fibromyalgia clinic.  Drug companies such as Pfizer and Lilly who have shown an interest in FMS medication should be encouraged to sponsor these centres. It is possible in today’s climate of  doom, gloom and stress that these companies and this industry are among the few not feeling the pinch with the credit crunch – people will always be ill and take medication. 

I hope those in the corridors of power are listening.  Will someone please tell them, not that I think Gordon Brown would be interested at the moment, but David Cameron just might!  Keep well Jeanne  Hambleton