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

UK Fibromyalgia Conference & Unique Pamper Weekend

From the FMS Global News Desk of Jeanne Hambleton

With just weeks to go to the final booking date, fibromites from all around the UK are rushing for places at a weekend filled with laughter, fun, relaxation and learning.

Believed to be the first Fibromyalgia Conference in the south east of England working under the FMA UK umbrella, influenced by a yoga teacher working with fibromites, Sarah Owen, the event is offering pampering as a unique part of the programme along with leading speakers in the field of fibromyalgia.

Between 20 and 30 pamper therapists are expected to give free tasters allowing fibromites to try complementary therapies they have not previously experienced prior to booking one to one therapies at reduced cost at conference.

While many visitors are coming for the pamper experience, lots of fibromites have admitted they want to meet like-minded people from other groups with the view to twinning with other UK groups. Living in a world that does not understand fibromyalgia, those suffering with FMS enjoy the company of others suffering with the same condition. The idea of twinning has prompted one small Tee group with just 12 members to be the first group to enlist in a twinning programme with a partner group.

Others are anxious to listen to the speakers, attend workshops and try new treatments in the exhibition for those with disability and needing pain relief. The event will include scooters, adjustable beds, tilt and rise chairs, walk in baths, walkers, wheelchairs, fancy walking sticks and much more.

Dr. Ernest Choy, a consultant rheumatologist from Kings College Hospital, London, who specialises in fibromyalgia, who will travel from the annual meeting of the British Society of Rheumatology to join the conference. The Doctor will talk about new advances in the understanding of fibromyalgia. Other speakers will discuss sleep, pain management, digestive problems, chronic fatigue syndrome, food and mood, nutrition, benefits, and the controversial lightning process used by Esther Rantzen’s daughter for her ME/CFS.

Social highlights of the weekend will be the Fibro Factor, a chance for fibromites to have their moment in the spotlight. Following a gala dinner there will be the Folly Pogs Ball with posh frocks and dickie bow ties or fancy dress options. On Sunday the audience will join a charity auction of donated gifts to raise funds for fibromyalgia research.

Among the visitors will be Pam Stewart, chairman of the board of trustees for FMA UK, who is also the Vice President of the European Network of Fibromyalgia Association. Pam is looking forward to meeting newly diagnosed fibromites, members and group leaders.

“We have every intention on over dosing on laughter, which is the best medicine and has no side effects,” said who is one of the main organisers.

For more information email jeannehambleton@mac.com.

Back Pain – Medication and Addiction

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

Courtesy of WebMD.com

How can we balance the risk of drug abuse with the suffering caused by untreated back pain?

By R. Morgan Griffin – Reviewed by Brunilda Nazario, MD – WebMD Feature

People living with serious back pain have to sort through a lot of mixed messages about opioid — or narcotic — painkillers.

On the one hand, you have heard stories about the seeming epidemic of addiction to these drugs, like OxyContin, Percocet, and Vicodin. All those celebrities checking into rehab for painkiller addiction may give you the impression that the lure of these drugs is irresistible, that we are all just a few pills away from addiction.

But on the other hand, you might have heard that pain is chronically undertreated and many people are suffering needlessly. Which is true?

“They’re both true,” says Lynn Webster MD, medical director at the Lifetree Clinical Research and Pain Clinic in Salt Lake City. “In this country, we undertreat pain and we underutilize opioid painkillers. But we have also had a serious increase in the misuse and abuse of these drugs.”

This leaves many people with chronic back pain — and often their doctors — stuck in the middle. On the one hand, people are afraid of the risks of drug abuse and addiction that come with powerful painkillers. On the other, they are suffering from severe and debilitating pain and need some kind of help.

Opioid medicines can save lives. But they can destroy them too. What is an average person with severe back pain supposed to do?

Who Needs Opioid Painkillers?

Here is one piece of good news: most people with back pain do not need these powerful painkillers to begin with.

Many with back pain often just use non-addictive medications like Tylenol or nonsteroidal anti-inflammatory drugs (NSAIDs). Some NSAIDs are sold over the counter, like Motrin or Advil, and others are sold by prescription. Steroids can also be prescribed for back pain due to swelling and inflammation. These drugs do have some risks of their own, but the potential for addiction is not among them.

Even when powerful opioids like Percocet and Vicodin are necessary, many people only need them in the short term. After an acute back injury or surgery, many just use these drugs to ease the pain enough that they can start moving around and begin physical therapy.

But sometimes, the back pain lingers. Chronic back pain can sometimes develop as a result of arthritis or injuries that cannot be corrected surgically. In the small percentage of people with chronic and hard-to-treat back pain, a doctor may recommend long-term opioid therapy. Others may get opioid therapy if the side effects of other painkillers — like NSAIDs — are too risky.

While some patients and doctors swear by opioids as a treatment for severe chronic back pain, the evidence is not all that strong. One 2007 review in the Annals of Internal Medicine found that while opioids do help with short-term back pain, it is not clear that they help with chronic back pain. A 2007 Cochrane Review found that opioids may not work any better than an NSAID for chronic lower back pain.

How Big Is the Opioid Abuse Problem?

Prescription narcotic abuse is a serious issue, says Jim Zacny, PhD, a professor in the department of anesthesia and critical care at the University of Chicago. He points to the 2007 National Survey on Drug Use and Health. It found that as many as 5.2 million people reported using prescription opioids in the last month for non-medical reasons. That is more than double the number of people who used cocaine.

But many of the people illicitly using these drugs are not in pain. So the important question is this: how high is the risk of abuse for someone living with serious back pain?

There is some good news: the risks of actual addiction may be lower than assumed. “Among people with legitimate pain issues, it is a very small group who actually develop the disease of addiction,” says Webster.

Zacny agrees. “There is this myth out there that if you take an opiate, you automatically become enslaved to it,” he says. “That is not the truth at all.”

However, addiction is not the only issue. Webster observes that a much larger number of these people — perhaps 20%-30% — do wind up misusing or abusing the drug.

Opioid Addiction vs. Abuse

What is the distinction between drug addiction and drug abuse? Many people with real back pain are not addicted, but they begin to use their medication incorrectly. They might take too much, simply because the prescribed dose does not seem to be helping enough. Or they might use their medication to cope in other ways.

“People with pain sometimes take pain medicine inappropriately to feel a little high or improve their mood,” says Karen Miotto, MD, an addiction psychiatrist at the UCLA Neuropsychiatric Institute. “They might take one after a fight with a spouse or a hard day at work.”

Some people with chronic pain also have issues like anxiety and depression. They might start leaning on their pain medication to help them with these conditions too.

While we tend to focus on addiction, misuse and abuse can also be dangerous. Opioids are powerful drugs with real risks.

“In the last three to five years, we have seen a significant increase in the number of unintentional overdose deaths caused by prescription painkillers,” Webster tells WebMD. “At least half of them are in people who have legitimate pain problems with legitimate prescriptions.” Taking these drugs in ways your doctor did not intend simply is not safe.

“Our culture encourages the attitude that if one pill is good, two is better,” Webster says. “With opioids, that can be lethal.”

What Increases the Risk of Drug Addiction and Abuse?

The risks of drug addiction and abuse do not seem to be the same for everyone.

“It is not the pills alone that make an addiction,” Miotto says. She points out that addiction develops from a number of physiological, psychological, genetic, and social factors. A personal history of substance abuse also seems to increase the risk.

Mixing drugs also increases the risk of problems. “If you are taking your pain medicine along with other prescription drugs, you ratchet up the risk of addiction enormously,” says Miotto.

Webster says that pain itself is a risk factor: the greater the severity of the pain, the higher the risk of drug abuse and addiction. “After years of living with severe chronic pain, people will do anything to get rid of it,” he tells WebMD.

The Effects of Addiction and Abuse

Miotto says that drug addiction may seem to start innocently. A person might just occasionally call in a prescription early, or take a spouse’s medication as well as their own. “These behaviors can creep up on people slowly and then, all of a sudden, they have a physical dependency,” says Miotto.

The problem is that people who have a prescription drug addiction do not realize it. “Addiction is a disease of denial,” Miotto says. “It can take years before people realize what is happening to them.”

It pushes people to horrible extremes. Miotto knows one patient who eventually admitted that she pushed for surgery solely because she wanted the opioid painkillers she knew she would get afterward.

There is also another dimension to prescription drug abuse you should consider. Even if you do not abuse the opioid pills you have been prescribed, someone else could.

“A lot of the opioids that get used illicitly — especially by adolescents — come from the medicine cabinets of people who were prescribed the drug for legitimate pain,” says Webster. “People need to understand the potential harm that they can do to communities if these medications are not properly secured.”

Doctor vs. Patient

In part because of the stigma of prescription drug addiction, chronic back pain can sour even the best doctor-patient relationships. The patient can become frustrated by the doctor’s inability to cure his or her pain. Meanwhile, the doctor may become suspicious of someone who is always demanding refills of powerful opioids.

“Doctors are getting sued from both ends,” says Miotto. Some have been sued for providing opioid painkillers that lead to addiction; others get sued for not prescribing them to relieve debilitating pain.

People with a past history of addiction face the most skepticism from their doctors.

“I hate to say it, but when people walk in to the doctor and mention an addiction history, they may not be able to get these painkillers,” says Miotto. “The doctor may just not trust them.”

Alternatives to Opioids for Back Pain

Miotto says that some people with serious pain become too focused on opioids. They come to believe that opioids are the only thing that will help. But sometimes, you need to take a step back.

“If you keep increasing your dose of opioid pain medication but pain is still an 8 or 9 out of 10, it is time to shift gears and try something else,” says Miotto. She points out that at high doses, opioid painkillers can actually make your pain worse — a condition called opiate-induced hyperalgesia.

In addition to NSAIDs and other drug treatments, there are non-drug options for coping with chronic pain. Physical therapy can be invaluable. Miotto notes that treatments like massage, water therapy, and biofeedback can make a big difference with chronic pain. Unfortunately, it can be hard to get insurance to cover these sorts of treatments, Miotto says.

It is also important to treat any other conditions that might be exacerbating your pain. For instance, experts say that many people with chronic pain also struggle with depression and anxiety. “People who feel an increased amount of anxiety also feel an increased amount of pain,” says Webster. Even those who do not have diagnosed psychological condition can benefit from support groups or therapy.

Of course, some with chronic pain will bristle at that suggestion. They believe that it implies that the horrible pain they feel is “all in their heads.”

But Miotto says that is not the case at all.

“Severe, chronic pain makes life terribly difficult,” Miotto tells WebMD. “Therapy is just another helpful tool in getting people to cope better.”

Using Opioids Safely

Clearly, there is no simple advice when it comes to balancing the benefits and risks of opioids for back pain. But if you and your doctor decide to use these medicines, here are some tips for taking them safely.

Follow your doctor’s prescription precisely. Never double up a dose. Never take your medicine for any symptom besides pain.

Find a specialist. Dealing with chronic pain is complicated. Your regular doctor may not be comfortable handing out long-term prescriptions for opioids. So seek out a specialist in pain management or, better yet, a pain management center. This is essential for people who have a past history of substance abuse.

Do not mix opioids with other drugs. If you already use prescription or over-the counter drugs, supplements, or alternative medicines, make sure your doctor knows about every single one. Ask about the safety of using your opioid painkillers with alcohol.

Sign a pain agreement. These documents help build trust between a doctor and patient. A patient might promise to use the medication as instructed and, in some cases, agree to regular drug testing. In return, the doctor agrees to prescribe opioid pain relievers as part of the treatment plan.

Take a screener. Experts now recommend that doctors use screeners — a short series of questions — that help them identify people who might be at higher risk of opioid abuse. Like pain agreements, they help build trust between patients and doctors.

Ask about alternatives. Talk to your doctor about other ways you could reduce your back pain. Might non-opioid medicines help? What about surgery? Or non-traditional treatments like massage or relaxation?

Get support. Consider seeing a therapist or joining a support group for people with back pain.

Keep your medication in a safe place. Remember that it is not only the person in pain who is at risk of abusing opioids. So be careful. Do not keep your medicine where other people — your children, grandchildren, friends, or neighbors — can get to it.

Finally, the most important way to assure that you are using your medicine safely is to have a trusting and open relationship with your doctor.

“Anyone with chronic pain needs to find a physician who is compassionate and understanding,” says Webster. Trust between a doctor and patient is the basis of any good pain management.

(©2005-2009 WebMD, LLC. All rights reserved.

http://www.webmd.com/back-pain/features/back-pain-medication-addiction?ecd=wnl_cbp_052109&em=amVhbm5laGFtYmxldG9uQG1hYy5jb20=)

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

Still no treatment in Europe for the 14 million FMS patients trapped in pain!

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

Press Release from ENFA – 29.04.2009

Brussels, (29.04.2009)

Last week was high on activities for the Fibromyalgia community, on one hand the European Network of Fibromyalgia Associations (ENFA) met with the European Health Commissioner Ms Androulla Vassiliou1. And on the other hand the European Medicines Agency (EMEA) gave another negative decision for a treatment for fibromyalgia in Europe2.

Ms. Pam Stewart, Vice-President of European Network of Fibromyalgia Associations (ENFA) and chairman of the trustees of Fibromyalgia Association UK, said one of the biggest challenges that the patients have been facing is the lack of officially recognised medical treatment options in the European Union.

By comparison there are three drugs in the United States of America approved by the Food and Drug Administration: Cymbalta from Eli Lilly, Lyrica from Pfizer and recently authorised Savella from Forest and Cypress (Pierre Fabre).

Last October, Cymbalta received a negative decision from the EMEA and last week was the turn of Lyrica said Ms Stewart. One dossier is still remaining to be evaluated by the EMEA: Savella. Each of these drugs has a limited success and judged alone leads to their failure to get approval.

However with a full range of treatment options, more people with fibromyalgia could have reduced levels of pain. This could enable them to embark on a management programme to significantly improve their quality of life said the Vice President.

“We are constantly hearing from people diagnosed with fibromyalgia that their doctor tells them there is no treatment because no approved guidelines or medications are available. Medical professionals that do not have time to research treatment options should have clearly signposted guidelines for effective treatment options. No one should be sentenced to a life of pain, she said.

“Patients across Europe are currently using these medicines off label. However, the European Medicines Agency told European Network of Fibromyalgia Associations that this is a common situation already faced in other disease areas such as cancer, and the situation with off label use cannot be taken into consideration in the assessment of medicines for which a marketing authorisation is sought.

“The difference with Fibromyalgia is that patients in the UK, for example, are unlikely to be prescribed any of these effective drugs because they have not been officially approved for Fibromyalgia. Patients are left with inadequate treatment options and although these drugs can be purchased over the Internet, this means their use is not monitored and people could be at the mercy of unscrupulous suppliers, which could put their lives at risk,” said Ms. Stewart.

Another example, coming from Germany, concerns the social status of patients since they are labeled as “depressive patient” for their life insurance or health insurance in order to have their drugs fully reimbursed by the National Health Insurance. In order to get any effective medicines, doctors should not diagnose fibromyalgia at all because the medicines are not indicated for fibromyalgia.

At the same time, an ENFA delegation was meeting with the European Health Commissioner Ms. Vassiliou. The meeting was only a natural step, concluding ENFA’s activities on the ‘European Institutions Fibromyalgia Awareness Campaign’ launched in 2008 on World Fibromyalgia Day.

Since the commencement of the campaign last May, with the support from 418 Members of the European Parliament, the Written Declaration on Fibromyalgia was adopted by the European Parliament in December 2008. The written declaration was necessary to raise awareness to all the European politicians from the 27 member states. It also helps create a mapping of the disease status disparity across Europe and increase awareness of better diagnosis and treatment.

“However, we realised that without any officially approved treatment options available, it was almost impossible to properly raise awareness of Fibromyalgia. The patient petition with over 27,000 signatures from all over Europe that MEP Adamou voluntarily hand delivered to the Health Commissioner, clearly demonstrates the frustration from the fibromyalgia community and strong and urgent needs to have treatment options to be officially available. The Fibromyalgia community is left with one hope to see maybe Savella drug approved before the summer. But unfortunately, the hope for a multiple choice of treatment in Europe seems to be lost.

“The European Network of Fibromyalgia Associations and all its associations have for years raised awareness on Fibromyalgia among national and European politicians, health professionals and the general public, and will keep on being active as long as it is necessary,” the Vice President.

About ENFA

ENFA is a network of patient association and support groups working in close consultation with the national association in the relevant country. Our joint missions are to conquer the myths and misunderstandings around Fibromyalgia. The network will help collectively push forward the boundaries which currently exist in understanding, experiencing and treatment of Fibromyalgia. Our main goal is to see Fibromyalgia receiving the recognition it deserves across Europe as an illness in its own right.

About Fibromyalgia

Fibromyalgia is a complex disease with chronic widespread pain as the defining symptom and various additional symptoms including fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Fibromyalgia imposes a large economic burden on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments.

In fact, a Dutch study in 2005 estimated that the average annual cost of fibromyalgia was €980 million in the Netherlands. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

For more information on the European Network of Fibromyalgia Associations (ENFA) contact Ms. Pam Stewart Vice-President of ENFA Brussels@enfa-europe.eu; http://www.enfa-europe.eu.
1 On Wednesday 22 April in Strasbourg, for more information visit http://www.enfa-europe.eu; 2 On Thursday 23 April in London, for more information visit http://www.emea.europa.eu

Many Chronic Patients Cannot Afford Care

From the FMS Global News Desk of Jeanne Hambleton

By Kristina Fiore, Staff Writer, MedPage Today
Published: March 20, 2009

WASHINGTON, March 20 — One patient in four with a chronic condition has postponed healthcare or filling a prescription in the past year because he cannot afford it, researchers here said.

Latinos (43%) and middle-age women (39%) are among those more likely to report delaying care, according to a survey by the National Council on Aging.

Although the poor are more likely to report delaying care, 22% of patients with household incomes above $50,000 have done so, according to the survey.

Those who have put postponed treatment are also more likely to be in frequent physical pain (45% versus 28% of those who have not delayed care), to be fatigued (49% versus 28%), and to be stressed (40% versus 17%).

The survey — conducted between Jan. 5 and Jan. 30, 2009 among 1,109 adults ages 44 and up with at least one chronic condition — is a snapshot of patients living with chronic conditions such as heart disease, arthritis, hypertension, and diabetes.

The survey included an oversample of those 65 and older (n=594 total), as well as an oversample of Latinos (n=142 total). The margin of sampling error for the total results is +2.9 percentage points.

Many report dissatisfaction with the care they receive. Some 44% wish their physician had more time to spend talking to them about their condition, and 45% said they never get referrals to important chronic care resources such as counselors and health educators.

Nearly a third report leaving their physician’s office confused about what they should do regarding their care, and many say their providers aren’t doing anything to improve their care.

About 57% said their physicians have not asked whether they have help at home to manage their problems, and 45% said they rarely or never receive referrals to support services such as classes, counselors, or health educators.

Many patients are living with several chronic diseases: 68% report having two or more conditions and 20% have four or more.

Those with one chronic condition are healthier, have higher incomes, and have more support at home; while those with multiple conditions tend to have low incomes and less support.

Half of those with chronic conditions are unhappy or depressed at least occasionally because of their health problems, and 32% report having to cut back on social activities. A little more than a quarter report having to miss work.

Almost 40% of patients said they do not have the money to begin improving their health, a percentage that is particularly high among Latinos (63%), African Americans (58%), the poor (65%) and those with four or more chronic conditions (59%).

However, 70% said learning how to exercise or eat better in ways that work with their limitations would help them cope, and 68% say getting advice from others with similar conditions would help as well.

Fifty-six percent of Americans 44 and older with chronic conditions are Internet users — and of these, 63% say they would be interested in going to Web sites sponsored by health organizations to get information and support.

Even 27% of those who rarely or never use the Internet say they would be interested in going to Web sites for information and support.

Nancy Whitelaw, senior vice president of the Center for Health Aging at the National Council on Aging, said the report highlights the need to reform the healthcare system in order to support patients with chronic conditions.

“We encourage physicians not to take on the responsibility themselves, but to build a mechanism to refer patients to community-based health education programs that are effective,” Whitelaw said.

She added that physicians can help connect patients to such programs via a community agency that deals with the aging.

EDITOR’S NOTE: If it is happening in the USA, it must be happening here in the UK. This must also apply to visits to the opticians and the dentist. We can no longer afford luxuries, so health must be the next concern to be hit by the credit crunch. The offending financiers have a lot to answer for….Now is the time to make all prescriptions free before the UK falls apart at the seams. There is an old saying which tells us that health and happiness are more important than wealth. Are you listening Mr.B? You have helped everyone else – you can at least do this for the people Mr.B.! Write to your MP and put some pressure on the Government! JH

The survey was funded by the Atlantic Philanthropies and the California HealthCare Foundation.

Primary source: National Council on Aging
Source reference: “Reforming healthcare: American speak out about chronic conditions and the pursuit of healthier lives” NCOA 2009.

(http://www.medpagetoday.com/PublicHealthPolicy/PublicHealth/13358?utm_source=mSpoke&utm_medium=email&utm_campaign=DailyHeadlines&utm_content=GroupB&userid=206539&impressionId=1237776625926)

What Makes a Disease Real?

From the FMS Global News Desk of Jeanne Hambleton

Contents provided by the Harvard Medicine School – Courtesy MSN.health&fitness

Some conditions cannot be diagnosed with any test
By Robert Shmerling, M.D., Harvard Health Publications

Doctors can be a skeptical bunch. I have colleagues who flat out deny that a condition can be “real” unless they can observe it or detect it with a test.

Yet, many physicians deal with conditions all the time whose symptoms can’t be measured. For example:

Depression—A depressed person will usually have normal physical examinations, blood tests and, if necessary, a normal brain MRI.
Headaches—Most people who have headaches have normal test results.
Joint pain—People can have joint pain (arthralgia) without any joint inflammation (arthritis). The pain could be due to tendonitis, bursitis, vitamin D deficiency or thyroid disease. But often we can’t find any cause of the pain.

Doctors rarely do extensive testing for these conditions because abnormal results are rare and the tests are almost never helpful.

Millions of people are affected by diseases that have “subjective” symptoms and cannot be confirmed by observation or tests. These include fibromyalgia, most headaches (including migraine), irritable bowel syndrome. So, does this mean that these conditions aren’t “real?” They’re certainly real to the people suffering with them.

“It is all in your head”.

When a symptom cannot be explained, it does not mean that it is imaginary or due to a mental illness, psychiatric disorder or psychological distress. That is what is implied when a doctor tells a patient, “It’s all in your head.” At the very least, we should assume that the pain or unpleasant experience is real regardless of test results.

In the end, all pain is perceived by the brain. So, in a way, all pain is “all in your head.” Yet there is a tendency to relegate unobservable symptoms to the realm of the psychiatrist. Never mind that a psychiatric disease is “real” even when imaging and blood test results are normal. If you have ever witnessed psychotic behavior or been with someone who is severely depressed, it is clearly real.

Unexplained symptoms could be due to a disease that has not been detected yet. Ideally, doctors and patients should identify the cause if possible, rule out a dangerous condition, and treat the bothersome symptoms. And that is true whether the symptom is measureable or not.

What is in a name?

We usually expect the doctor to make a diagnosis and recommend a treatment when we have a problem. It is reassuring to know that your particular problem has a name. It means that other people have experienced it and that studies have assessed the effectiveness of various treatments.

Yet for many conditions, the name is only a label. It is convenient to apply a name to a particular combination of symptoms, even though the cause is unknown and no clear-cut abnormalities can be found. Examples include fibromyalgia syndrome and irritable bowel syndrome. Assigning a name to symptoms can be reassuring but it does not make the condition more or less “real.”

Focus on improving symptoms

There are times when even the smartest health care provider cannot come up with a logical, compelling or even reasonable explanation for a person’s symptoms. In those cases, it is important not to get too focused on explaining or labeling them. Instead, the doctor should focus on:

Not missing some important clue

Treating the symptoms

In many fields of medicine, doctors spend all day improving symptoms rather than making a diagnosis. Headache specialists, for example, must be convinced there is no brain tumor, no meningitis, and no other serious and treatable cause of the pain. But once that happens, attention turns toward treatment rather than on sorting out a specific cause.

This can be frustrating for both patients and doctors. But until we understand the specific causes of common conditions like headaches, back pain, ringing in the ears (tinnitus) and chronic fatigue, controlling symptoms, not a name, is what will help the most.

The bottom line

Once again this shows that there is more uncertainty in medicine than most people think. But that does not mean a person is imagining their symptoms.

As I see it, debating the “realness” of symptoms is often a waste of time. Unless a person is deliberately “faking” symptoms (a rare event in most doctors’ practices), they are just as real as for those with an observable, measurable and testable condition.

Having names are nice, but they are not always helpful. All other things being equal, I would rather have a nameless condition that is well-treated than a definite, but untreatable diagnosis.

Copyright © 2009 by the Presidents and Fellows of Harvard College. Used with permission of StayWell. All rights reserved. Harvard Medical School does not approve or endorse any products on the page. Harvard is the sole creator of its editorial content, and advertisers are not allowed to influence the language or images Harvard uses.

(http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100233740)

WOMEN IN NETS CLAIMING TO BE TRAPPED IN PAIN IN 8 EUROPEAN CITIES

From the Fibromyalgia News Desk of Jeanne Hambleton

PRESS RELEASE Embargoed until 7.3.09

Brussels, (07.03.2009) – This Saturday has not only been marked by the International Women’s Day but also by the European action day on Fibromyalgia. While normal people were doing their usual Saturday’s shopping, the European Network of Fibromyalgia Associations and its Member Associations gathered together in eight European cities centres to expose their situation as women-patients suffering from fibromyalgia.

Simultaneously at 16:00 (Brussels time) in Paris, London, Amsterdam, Frankfurt, Brussels, Dublin, Milan, Lisbon and Madrid a passive demonstration took place where fibromyalgia community members trod the pavements of these cities.

The actual main issue around Fibromyalgia is that currently in Europe there is no recognized treatment whereas in the USA there are already 3 medicines available.

“This year has been declared the year against fibromyalgia by the European arm of the International Association for the Study of Pain (IASP-EFIC) and for this reason ENFA, as the European umbrella of fibromyalgia organisations wish to inform as much as possible not only diagnosed patients, but the general public, medical professionals, policy makers and politicians” says Pam Stewart, ENFA’s vice-president.

“Early diagnosis, diagnosis, treatments and information are still lacking for the estimated 14 million patients in Europe” says Robert Boelhouwer, ENFA’s president. “We have to keep on mobilizing the general public but also the politicians by having regular action days and awareness campaigns. This is the first event in 2009; the next one will take place in May on the occasion of the “International Fibromyalgia Awareness Day”, then in September and October. We will keep on fighting until we get a full and clear recognition of our disease, starting with a treatment approved for Europe,” he added.

Last December, 418 Members of the European Parliament from the 27 European countries expressed their wish to the European Commission and to the Member States to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia. The European Parliament has been the first European Institution to answer the call of the fibromyalgia community. The European Commission has been also recently been contacted but no reaction has came from them yet.

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.

Fibromyalgia imposes large economic burdens on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost work days, lost income and disability payments. Research in the UK has shown that diagnosis and positive management of Fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

Contact:Mr. Robert Boelhouwer President European Network of Fibromyalgia Associations (ENFA)
ENFA contact@enfa-europe.eu – http://www.enfa-europe.eu

FIBROMYALGIA AND PFIZER

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

Pfizer, the manufacturers of Lyrica, the first fibromyalgia drug to be approved by the American Food & Drugs Associations (FDA), have decided to end human testing on a late-stage experimental drug, esreboxetine, which may have improved the cognitive function of patients with fibromyalgia. A second drug also to be withdrawn from the testing programme is associated with general anxiety problems. Both of these conditions are among the many symptoms of fibromyalgia.

The company announced it would stop further testing on these experimental primary care medications, now in the late stages of development, as they were other drugs available to treat these conditions.

The decision follows a move to ‘shift funding’ to alternative experimental drugs that have a greater profile.

The Wall Street Journal website, (http://blogs.wsj.com/health/2009/02/24/pfizer-drops-two-drugs-from-late-stage-pipeline/trackback/) overnight, on February 24, 2009, announced Pfizer Drops Two Drugs from Late-Stage Pipeline.

Sarah Rubenstein wrote two drugs in Pfizer’s late-stage pipeline are biting the dust.

The company said today it is ending development of esreboxetine, for fibromyalgia, and a drug known as PD 332,334, for generalized anxiety disorder.

In announcing the decision, Pfizer made a between-the-lines reference to the increasing pressure from insurers and regulators on the drug industry to pour research resources into products that make a real difference for people’s health rather than just add on to crowded categories. The economic-stimulus bill, for instance, offers up $1.1 billion for research comparing drugs and other treatments to each other.

Based on the data on the two drugs, “along with current market dynamics,” Pfizer said, “it was considered unlikely that either compound would provide meaningful benefit to patients beyond the current standard of care.” It added that safety was not the issue.

That said, there are not a lot of drugs on the market for fibromyalgia: Pfizer’s Lyrica was the first to win approval for fibromyalgia, and Lilly’s Cymbalta got the nod too. But fibromyalgia, a condition characterized by long-standing pain, has been the subject of controversy over its legitimacy, despite being recognized as a disease by the FDA and insurers.

Pfizer said today it is still seeking approval for Lyrica for generalized anxiety disorder, despite the demise of PD 332,334. In this case, though, there is a lot out there. The Mayo Clinic lists a bunch of drugs used for the disorder, including Cymbalta and Forest Labs’ Lexapro and generic versions of Lilly’s Prozac and GlaxoSmithKline’s Paxil.

Permalink | Trackback URL: http://blogs.wsj.com/health/2009/02/24/pfizer-drops-two-drugs-from-late-stage-pipeline/trackback/
Copyright ©2009 Dow Jones & Company, Inc. All Rights Reserved

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 

 

 

 

EU COMMISSIONER FOR HEALTH ANSWERS QUESTIONS ON FIBROMYALGIA

From the News Desk of Jeanne Hambleton

 

I have just received the following Q&A information. While this is not a recent conversation, it is evidence that fibromyalgia is being discussed in the Europe.

 

EU QUESTIONS AND ANSWERS

 

On 28 October 2008, European Commissioner for Health, Ms Androulla Vassiliou answered questions put to her by EU member Mr. Florin Popa  (Romania) on EU recognition for fibromyalgia, the need for treatments in Europe for fibromyalgia and the need for more data from research. 

 

QUESTION:

Can the Commission state its position on fibromyalgia, as the WHO did in 1992? Does the Commission think that there is a need for action at European level, in the interests of European citizens, in order to avoid the disparities in diagnoses and treatment that exist in all Member States?

ANSWER:

In accordance with the Treaties, the benefits that Member States provide under their health systems and the conditions applicable are up to Member States to determine, including with regard to the benefits and treatments provided for specific conditions such as fibromyalgia.

QUESTION:

Can the Commission comment on the lack of availability of approved treatments in the EU for fibromyalgia? Millions of people suffering from fibromyalgia across Europe do not have the same access to medicines to treat fibromyalgia as in the US. Following its October meeting, the Committee for Medicinal Products for Human Use (CHMP) took a negative decision regarding the first medicine for the treatment of fibromyalgia in Europe. Patients across Europe were disappointed to hear that a license to approve a drug for fibromyalgia had not been granted. Yet the reality is that in Europe patients are taking medicines off-label. What solution does the Commission see for this specific problem?

ANSWER:

The fact that the Committee for Medicinal Products for Human Use (CHMP) proposed a negative decision regarding the market authorisation of a medicine for the treatment of fibromyalgia in Europe does not preclude future authorisation of other proprietary medicines that meet the safety, efficacy and quality requirements laid down in EU legislation.

QUESTION:

In order to obtain a treatment for fibromyalgia, there is a need to collect EU data. Can the Commission help collect and receive data and also help with the coordination of national expertise?

ANSWER:

The Commission already pointed out that under the current health programme 2008‑13 a proposal for surveillance of and information on musculoskeletal diseases, including fibromyalgia, has been selected and a contract is under negotiation. This project, if the contract can finally be successfully concluded, is expected to contribute to improvement of European data on incidence and prevalence of fibromyalgia as well as information on best practice of diagnosis, treatment and care.

BACKGROUND

 

European Commissioner for Health, Ms Androulla Vassiliou on her website said she was honored to have the opportunity to work on issues which  ‘intimately touches EU citizens’ everyday lives”.

 

She writes, “As Commissioner for Health, my portfolio covers three broad areas: public health, feed and food safety and animal health and welfare. Many challenges lie ahead. We need, for example to improve the legal certainty on patients’ rights in cross border health care, to contribute to reducing organ donation shortages, to help combat rare disease in the field of public health or to implement a comprehensive strategy on animal health. 

I know I can count on the dedication of my services working in the Directorate-General for Health and Consumers and I look forward to a close co-operation with national authorities in the Member States. 
On my side, I will put all my energy into addressing these important issues. 
 Working on health at EU level can bring about results that can not so easily be achieved by Member States working alone.”

 

(http://ec.europa.eu/commission_barroso/vassiliou/index_en.htm)

 

There is a contact box on this website if you have any questions. I could find no references to fibromyalgia. Might have been fibro fog on my part? JH

 

Mr. Florin Popa, EU Member (Romania) was one of the five MEPs active in health issues at the European Parliament, who helped to initiate the Written Declaration relating to fibromyalgia in conjunction with the European Networks of Fibromyalgia Associations.

 

EUROPEAN NETWORK of FIBROMYALGIA ASSOCIATIONS

Press Release


Members of the European Parliament (MEPs) adopt written declaration 69/2008 on fibromyalgia initiated by five deputies and the European Network of Fibromyalgia Associations (ENFA).

Brussels 16.12.2008 – Written Declaration 69/2008 on fibromyalgia has been a success in the European Parliament by finding the necessary quorum of signatories of 393 deputies giving their support. The Written Declaration was initiated by five key MEPs active on health at the European Parliament: Mr. Adamou, Ms. Brepoels, Ms. Dickuté, Mr. Popa and Ms. Sinnott. These MEPs decided to launch the declaration during the celebratory meeting of the 1st European Fibromyalgia Awareness Day in May 2008, organized by ENFA.

The Written Declaration is calling on the European Union to recognize fibromyalgia in Europe as a disease, as WHO did in 1992. It is estimated that 14 million people in Europe suffer from fibromyalgia and the condition is more prevalent with women (87% of total prevalence).

Fibromyalgia is a complex disease with a variety of symptoms in addition to the defining symptom – chronic widespread pain. These include fatigue, non-restorative sleep, morning stiffness, irritable bowel and bladder, restless legs, depression, anxiety and cognitive dysfunction often referred to as “fibro fog.” All of these symptoms cause serious limitations in patients’ ability to perform ordinary daily chores and work and severely affect their quality of life. Some scientists believe that there is an abnormality in how the body responds to pain, and particularly a heightened sensitivity to stimuli.

 

Fibromyalgia imposes large economic burdens on society as well as on affected individuals. A study shows that an average patient in Europe consults up to 7 physicians and takes multiple medications over 5-7 years before receiving the correct diagnosis. The debilitating symptoms often result in lost workdays, lost income and disability payments.

 

Research in the UK has shown that diagnosis and positive management of fibromyalgia reduce healthcare cost by avoiding unnecessary investigations and consultations.

Thus, the European Parliament is calling through this declaration, for the European Commission and the Council, to help raise awareness of the condition and facilitate access to information for health professionals and patients, by supporting European and national awareness campaigns; to encourage Member States to improve access to diagnosis and treatment; to facilitate research on fibromyalgia through the work programmes of the EU 7th Framework Programme for Research and future research programmes; and finally to facilitate the development of programmes for collecting data on fibromyalgia.

 

Educating healthcare professionals, patients and the public to promote better understanding and management of fibromyalgia will benefit patients, healthcare providers and the society. A Written Declaration is a text of up to 200 words on a matter falling within the European Union’s sphere of activities. MEPs can use them in order to launch or relaunch a debate on a subject that comes within the EU’s remit. At the end of the lapsing date (3 months after its launch on 1 September for the declaration 69/2008, the declaration is forwarded to the institutions named in the text, together with the names of the signatories.

 

Thank You MEP’s, Thank you fibromyalgia supporters!

The written declaration 69/2008 about fibromyalgia reached the quotum on December16th 2008, to be accepted by the European Parliament. This acceptance means that the first but important step on a long way to get fibromyalgia recognised in all the European countries, has been taken.

The awareness of the condition of fibromyalgia by the members of the European Parliament could be an example for national politicians for actively addressing their national governments. ENFA and their members are more than willing to support such activities.