JUDICIAL REVIEW AND E PETITION FOR COPROXAMOL

JUDICIAL REVIEW AND E PETITION FOR COPROXAMOL
by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

The coproxamol debate has apparently been ‘pushed under the carpet’ and seems to have lost its momentum with GPs disgruntled but still wanting to prescribe the 50-year-old safe painkiller. Meanwhile the Government and the Medicines and Healthcare Products Regulatory Agency dig their heels in and refuses to consider a review of the whole sorry situation and ‘bungled withdrawal’. One man is so angry as he lives with unmanaged pain, he is seriously considering spending £20,000 of his hard earned cash on a Judicial Review and another angry coproxamol patient has launched an e-petition for the attention of the Prime Minister.

Russ Mclean, making a comment on the Pulse Today website (owned by and for GPs) expressed his concern for some 60,000 patients being exposed to the possibility of life in untreated pain. As someone in pain, he had pleaded with the MHRA to sort out the failure of the “Named Patient” issue, but they had refused to reconsider the coproxamol withdrawal. Russ McLean now felt he had put up some £20,000 for legal fees to require the MHRA to be subject to a Judicial Review. Russ McLean claims he should be investing this money in helping creating much needed jobs.

P. E. G. Cope, the e-petitioner, urging everyone who has become a ‘coproxamol refugee’ to sign up and give their support to his message to Gordon Brown, writes, ‘We, the undersigned, petition the Prime Minister to allow patients to indemnify their GPs to continue prescribing coproxamol, for pity’s sake.’

Of course I have rushed to sign it myself and congratulate this person – Mr. Cope – for taking this initiative.

Mr. Cope – please excuse me if I am wrong – also writes, “The Government has now withdrawn the analgesic coproxamol except for special named patients (for whom nothing else works) at their GP’s risk. It is NOW clear GPs will NOT take this risk. Tens of thousands of patients are now left in unnecessary pain. DoH should be as good as their word, in Hansard, and issue a Patient Indemnity Form transferring the GP’s risk to the patient, as with anesthetics. This can be done overnight. Please let it be, and end our agony. Pulse magazine found that 94% of rheumatologists favoured retention.

To sign the petition please log on to this link.

http://petitions.pm.gov.uk/Co-Prox/

I could not agree more but the burning question is, will a letter offering to indemnify our GP, if he prescribes coproxamol, be valid in a court of law? It takes less than five minutes to sign the e-petition. Please keep the debate going.

My own GP, who is not prescribing, thinks a letter of indemnity will not hold good in a court of law. He is adamant that the responsibility lies with the prescriber and that any letter written by a patient accepting responsibility, would be invalid.

There is also the question of cost. While coproxamol was a legal category drug, it was available to pharmacists at £2.79 for 100 tablets – a cheap painkiller meeting the needs of thousands of NHS patients. Once it became illegal or de-classified on January 1 2008 the price rose to £20.39 for the same quantity of tablets. How can you justify a seven-fold increase?

This, of course, must be another turn off for our GPs. Not only are they walking a legal tight rope and putting their career on the line, but they would be also pushing up the medication costs within the practice by prescribing coproxamol, not to mention the agro the PCTs are giving the doctors.

WRITE TO THE HEALTH MINISTER AND YOUR MP

It is the Government’s fault and our only chance is to write to Alan Johnson, Minister for Health, and his new health team in the hope he will right the wrongs of the past. Send your emails with a list of all your symptoms, aches and unmanaged pain to

· johnsona@parliament.uk

and plead for a review of the coproxamol withdrawal. Copy your letter to MP Anne Begg who has been doing sterling work for coproxamol but she does need some help from her us. Send a copy of your letters to your own MP. You can log on to theyworkforus.com, insert your postcode and you are presented with a message box.

· BEGGA@parliament.uk

We are counting on all you UK-iers living abroad to give us your support. Talking about Uk-iers I understand there are unlimited supplies of coproxamol in Spain – no problems.

With GPs facing possible litigation, and increased costs, it becomes painfully obvious that less and less doctors will be prepared to take the risk of prescribing coproxamol however much they know the patient cannot find an alternative and is in desperate need of this tried and tested painkiller.

CHECK MATE AND DISASTER

Unless we take some action ourselves and put pressure on the MPs and the Government, we may be faced with a ‘check-mate’ situation. Although one coproxamol manufacturer has pledged to continue providing the painkiller for ‘named patient’, if so few GPs prescribe coproxamol, this could mean that manufacturing becomes uneconomical, and it ceases. What about all the Government promises to help those who really need coproxamol – patient’s responsibility – all hot air – Government spin.

Facing pressure from the MHRA and the PCTs, the GPs facing patients who cannot find an alterative to coproxamol, are finding themselves between a rock and a hard place.

Writing on behalf of the CMP Medica in Pulse Today D. Cressey said as far back as November 2006, the UK drug regulator was passing the buck and telling patients to talk to their GPs if they wanted to continue taking coproxamol.

HYPOCRITICAL TO WITHDRAW COPROXAMOL AND RECOMMEND IT

But MHRA insisted providing individual patients prescriptions were not unusual. But GPs suggested it was ‘hypocritical to withdraw the drug yet still recommend its use.’

Following a survey of GPs and rheumatologists it was revealed that a large percentage wanted to retain the drug said Pulse.

But the Medicines and Healthcare Products Regulatory Agency had already made up its mind and dug its heels in. The agency was warning doctors of the legal risks of prescribing this painkiller. Coproxamol was withdrawn at the end of December 2007 and all pharmacies and warehouses were advised to return unused stocks.

Today I heard from a GP that an Alliance pharmacist, part of the Boots group, had said that coproxamol is no longer available not even for named patients. So who is pulling whose strings? They cannot even get their stories right. Even the pharmacists have no idea what is going on.

In 2007 it is claimed some 75,000 patients were still taking coproxamol. I doubt this is the case now. In November 2006 Pulse revealed the decision to withdraw coproxamol had split the medical profession with 70% reporting they were totally opposed to the withdrawal.

Almost a year later Dr Howard Stoate, an MP and medical practitioner, asked if the Government was so keen on patient choice and empowerment why is coproxamol, which so many people rely upon, being withdrawn?

He quoted Patricia Hewitt, who was then the Health Secretary, as saying the NHS is moving way from the old monolithic, monopoly NHS to a self improving system with more choice for people about the services they use and more freedom and responsibility for GPs to get the best service for people with long term conditions.

Dr Stoate described coproxamol as the only efficient painkiller that people with chronic rheumatic pain, had at their disposal. He said there are risks associated with coproxamol but he suggested there was a strong case for this painkiller to be made a Scheduled 3 controlled drug. With rescheduling the risk would be highlighted and extra safeguards would be introduced.

More importantly it would ensure that coproxamol would remain available to named patients.

Dr Stoate suggested the MHRA had lost its nerve and taken a decision that makes it impossible, in the practical sense of the word, to prescribe coproxamol in 2008, even to named patients. Dr Stoate suggested it is patently obvious that making coproxamol a Schedule 3 Controlled Drug remains the only viable option.

He suggested that perhaps Alan Johnson and his new health team may have learned some lessons from the coproxamol issue and should initiate a full review.
Nigel Praities writing on Pulse Today (www.pulsetoday.co.uk) in December 2007 advised GPs would receive further warnings about the legal implications if they continued to prescribe coproxamol after January 1 2008.
He reported that by October 2007 60,000 patients were still taking coproxamol, a fall of only one fifth as revealed by Cegedim Strategic Data. It was also noted that more than half of the patients who have changed to alternative treatments had lost pain control. The MHRA agency has been urging GPs to switch patients to paracetamol or ibuprofen. With my supply of coproxamol no longer available I have today been recommended to take co-codamol.
It was reported that the coproxamol withdrawal had completely divided GPs. Whatever the personal views they may have Nigel Praities on January 14 2008 reported GPs were under increased pressure following the huge seven fold price increase although in December some 60% were still prescribing coproxamol.

But it was reported by Pulse that almost 40 % of GPs had said they would continue prescribing it on a named-patient basis. Pulse Today have said this ‘bungled withdrawal’ is not working for patients or doctors.
ONE MAN’S VIEW

On 14 January 2008 Nigel Praities reported when coproxamol moved from a Category M drug to a Category C on January 1 2008, coproxamol had a reimbursement price, which was paid to chemists, of £2.79 for 100 tablets. This rocketed to £20.36 for 100 tablets, which brought more warnings from the PCTs. One doctor pointed out that there is nothing like a price hike to concentrate the mind.
In a comment to the Pulse Today website Russ McLean wrote, on January 15 2008

Dear Doctor, I read the Pulse article about legal exposure if you continue to prescribe coproxamol to patients presenting a “clinical need” on the unlicensed “named patient” basis. Whilst the MHRA are to be commended for their original aim in reducing suicides and accidental death from coproxamol, it seems the endeavour has gone too far in the ban direction, and resulted from what is written above, in some 60,000 patients being exposed to the possibility of life in untreated pain.

The purpose of my comment here is to advise, as one now in unmanaged pain, that having pleaded to the MHRA to sort the failure of the “named patient” issue out and had replies from the MHRA declining to revisit the coproxamol issue, I am now having to ante up some £20,000 for legal fees.

Not for any GP, but to require the MHRA to be subject to a Judicial Review. I should be investing this money in helping creating jobs. However, stubborn intransigence from the MHRA is meaning chronic pain, and a big pain in the wallet.
For my tuppenceworth, well done by the doctors who are honouring their commitment to the Hippocratic Oath and continuing, where clinical need presents, to prescribe coproxamol to their patients.
On the same day under another article Russ McLean wrote January15 2008
I am appalled. Sir Alasdair Breckenridge, chair of the MHRA promised a safety net for the 70,000 UK patients* such as myself that present a clinical need for coproxamol after MA withdrawal on 31st December 2007.
For the past two years, I have had the full range of experimental alternate analgesia and been hospitalised twice. All alternates proving either too strong, too weak or with intolerable side effects.
Even more frustrating, is that following spinal surgery in 1994, I was able to sign off of Higher Rate Disability Benefit and resume a meaningful working life (creating 70 jobs over ten years). Now through this MHRA mess, I am faced with unmanaged chronic pain and workless disablement because the MHRA “named patient” system is being shunned by doctors, my own included.
Today in Pulse, we have what seems like MHRA “spin” through cost rather than patient care, in another effort to again screw up the lives of thousands of patients who had effective pain management through coproxamol.
Shame on those in the MHRA who have ignored not one but two House of Commons debates and hundreds of letters of concern from senior surgeons, doctors, heads of pain management clinics, charities etc. * 70,000 as per House of Commons Debate – http://www.theyworkforyou.com/whall/?id=2007-01-17b.340.0
The background
· January 2005 – MHRA announces withdrawal of coproxamol
· October 2006 – A Pulse survey reveals 70% of GPs demand the MHRA review its decision
· January 2007 – MPs demand u-turn on withdrawal at special House of Commons debate
· October 2007 – 60,000 patients remain on coproxamol
· December 2007 – Final withdrawal of coproxamol
· January 2008 – PCTs panic as price of coproxamol soars

UK PETROL PRICES – DO THIS TO LOWER THEM

by Jeanne Hambleton © 2008
International Advocate – NFA Leader Against Pain

While petrol demonstrations and strikes against the never ending increases in petrol and diesel costs seemed like a good idea at the time, inevitably someone suffers. Before a proposed fuel blockade there is always a rush by ‘Joe Public’ to buy petrol and this must leave someone somewhere facing empty fuel pumps.

This email arrived on my desk this week and I thought maybe it is worth a try. Whether it will work remains to be seen but at least the long-suffering public will not be out on a limb and just might benefit from this action. I do not know about you, but being a fibromite with access to a car essential, I am fed up with the constant bashing of the poor old motorists and the Government taxes on fuel.

The person who sent this information to me said, we are hitting £110.9 a litre in some areas now and soon we will be faced with paying £1.12 per litre and possibly £1.50 by the end of this year. Someone has thought up this good idea involving a boycott by the public.

This makes MUCH MORE SENSE than the ‘do not buy petrol on a certain day campaign’ that was going around last April or May! The oil companies just laughed at that because they knew we would not continue to hurt ourselves by refusing to buy petrol. It was more of an inconvenience to us than it was a problem for them. BUT, whoever thought of this idea, has come up with a plan that can really work.

Please read it and join in!

Now that the oil companies and the OPEC nations have conditioned us to think that the cost of a litre is CHEAP, we need to take aggressive action to teach them that BUYERS – not sellers control the market place. With the price of petrol going up more each day, we consumers need to take action. The only way we are going to see the price of petrol come down is if we hit someone in the pocket by not purchasing their petrol! And we can do that WITHOUT hurting ourselves. Here is how it works.

For the rest of this year DON’T purchase ANY petrol from the two biggest oil companies (which now are one) i.e. ESSO and BP.

If they are not selling any petrol, they will be inclined to reduce their prices. If they reduce their prices, the other companies will have to follow suit. But to have an impact we need to reach literally millions of Esso and BP petrol buyers. It is really simple to do!!

Now, do not wimp out on me at this point… keep reading and I will explain how simple it is to reach millions of people!! Consider this for the power of the people! WOW

I am sending this note to a lot of people and telling everyone. If all of you send it to at least ten more (30 x 10 = 300)….and those 300 send it to at least ten more (300 x 10 = 3,000) … and so on.  By the time the message reaches the sixth generation of people, we will have reached over THREE MILLION consumers! If those three million get excited and pass this on to ten friends each, then 30 million people will have been contacted! If it goes one level further, you guessed it….. THREE HUNDRED MILLION PEOPLE!!!

Again, all YOU have to do is email and tell at least 10 people and ask them to tell their friends and families. That is all (and not buy at ESSO/BP).  How long would all that take? If each of us sends this email out to ten more people within one day of receipt, all 300 MILLION people could conceivably be contacted within the next 8 days!!! Acting together we can make a difference. If this makes sense to you, please pass this message on.

If you know anyone making regular deliveries and using a lot of fuel, do tell them.

PLEASE HOLD OUT UNTIL THEY LOWER THEIR PRICES TO THE 69p PER LITRE RANGE

It is easy to make this happen. Just carry this message forward and buy your petrol at Shell, Asda, Tesco, Sainsburys, Morrisons, Jet etc. i.e. but boycott BP and Esso.

Good luck. Let us see just how strong the power of the people really is? If you have any comments it would be good to hear them.

Physicians focus on stopping pain epidemic

Contact: Amy Jenkins
amy@jenkinspr.com
312-836-0613
American Academy of Pain Medicine

ORLANDO – The public health problem that needs to be addressed next is the epidemic of pain, according to pain medicine physicians who have come together to discuss the latest in pain research and treatment at the 24th Annual Meeting of the American Academy of Pain Medicine (AAPM), February 12-16 at the Gaylord Palms in Kissimmee (Orlando), Florida.

“In recent decades, Americans, with the help of their physicians, have been asked to stop smoking and lose weight. Now it is time to focus our efforts on undertreated pain,” says B. Todd Sitzman, MD, MPH, AAPM President and medical director of Advanced Pain Therapy, PLLC, a comprehensive pain clinic affiliated with Forrest General Hospital Cancer Center in Hattiesburg, Miss.

An estimated 60 million Americans live with chronic pain, a condition that is more prevalent among the elderly. As the 75 million Baby Boomers move toward retirement, more and more Americans are expected to have untreated or undertreated pain. Pain is vastly undertreated for a variety of reasons including misconceptions regarding opioid addiction, lack of access to care, cultural norms, and physician concerns about prescribing pain medications for chronic pain.

Pain Medicine is a medical specialty which utilized multiple modalities to diagnosis and effectively manage chronic pain. Additionally, pain medicine physicians deliver comprehensive care by combining techniques from several medical specialties. For instance, physical medicine techniques can be complemented by psychiatry and neurosurgery skills. “We treat pain aggressively to help our patients live fulfilling, productive lives,” Sitzman adds.

Plenary Briefs

AAPM is proud to have assembled this highly respected, expert faculty representing the nation’s top pain centers at this meeting.

Thursday, Feb. 14:

8-9 a.m.– The Decade of Pain, Keynote Speaker, Michael Cousins, MD

Persistent pain is a disease in its own right; this concept is now leading to new specific treatments aimed at physical, psychological, and environmental components of this major disease, including genetic predisposition.

“In the future, the diagnosis and treatment of persistent pain will be markedly different,” continues Cousins. “Instead of using drugs that provide only symptomatic relief, such as morphine, new drugs, such as NaV1.8 blockers, will target the disease process.”

Persistent pain has a prevalence of 1 in 5 of the population and the Pain Management Research Institute studies reveal an annual cost of $1.85 billion per 1 million population.

“Medical specialists have recognized that additional specialist training in pain is needed,” says Cousins. “Too few pain medicine specialists are being trained, and not enough patients are getting access to effective treatments. Pain management needs to become a fundamental human right: a bundle of initiatives will be needed in medicine, law, ethics, politics,” concludes Cousins.

9-10 a.m. – Altered Central Nervous System Processing in Chronic Pain, M. Catherine Bushnell, MD

“Chronic pain is associated with changes in the brain and can lead to premature aging of the brain, with an accelerated loss of gray matter,” Bushnell comments. “Similar changes are found in other stress-related disorders, such as post-traumatic stress disorder.” She adds that chronic pain patients also have neurochemical changes in the brain.

“Many chronic pain patients complain of problems with concentration and memory. These complaints could be related to the structural and chemical changes that appear to take place in the brains of chronic pain patients. Patients should be aware that chronic pain may have an impact on their lives that extends beyond just the direct effects of living with pain,” concludes Bushnell.

11 a.m.- noon – Opioid-Induced Hyperalgesia, Jianren Mao, MD, PhD

Opioid analgesics can increase pain under certain clinical conditions, which is referred to as opioid-induced pain. According to Mao, opioid analgesics can activate the cellular mechanisms responsible for pathological pain. He says there is a cross-talk between mechanisms of pain and opioid-induced pain, and opioid-induced pain can contribute to chronic pain conditions.

“Opioid-induced pain is an unwanted adverse consequence from opioid therapy, which hampers the opioid analgesic effect for chronic pain management,” remarks Mao. “Rational use of opioid analgesics may minimize the impact of opioid-induced pain and improve clinical outcomes of opioid therapy. More clinical and preclinical studies are needed to understand the mechanisms of opioid-induced pain and to guide clinical use of opioid analgesics.”

Friday, Feb. 15:

8-9 a.m. – Motion Preservation: A Paradigm Shift in Spine Surgery, Paul Anderson, MD

Motion sparing treatment of the spine is rapidly gaining interest. Anderson says that the early results for disc arthroplasty, interspinous process device and dynamic stabilization are encouraging; however, long-term results are lacking and further research is needed.

“The rationale for motion preservation technology is to avoid fusion thereby decreasing the likelihood of adjacent segment degeneration will allow earlier return to activities, maintain viscoelastic properties of the motion segment, reduce surgical morbidity, and decrease postoperative bracing requirements,” Anderson explains.

Anderson says that the short-term outcomes of lumbar and cervical arthroplasty are comparable to fusion, while interspinous process distraction has been shown to have significantly better results than epidural steroid injections in spinal stenosis patients.

“Motion sparing technology offers hope that reduced secondary diseases as a result of altered mechanics from surgery will be avoided. Additionally these techniques may be associated with shortened recovery time and earlier return to activities,” concludes Anderson.

9-10 a.m. – Who Needs Back Surgery” Richard A. Deyo, MD, MPH

Several lines of evidence suggest we may be doing too much back surgery in the United States. The evidence that this may be true includes expert opinion, comparison with other countries, geographic variations in surgery rates within the US, rapid increases in certain types of surgery, patient outcomes in areas with high or low surgical rates, and the preferences of patients when they are well informed.

According to Deyo, surgery offers better relief from leg pain, or sciatica, than from back pain. Whether it helps people who have back pain alone is controversial.

“Even in situations where surgery is likely to be of benefit, there is a choice, and reasonable people may choose for or against surgery depending on their own preferences and values,” Deyo continues. “Patients should be involved in the decision-making.”

“Back surgery is not helpful for everyone with low back pain; only those with some very specific conditions who also have leg pain with their back pain may benefit. Even then, surgery rarely offers a complete cure, and a choice of either surgical or non-surgical treatment is usually reasonable. Patients should understand that even people without back problems/pain often have abnormal MRI scans of the spine, so an abnormality doesn’t necessarily mean surgery is going to help. Surgery is only likely to help if the MRI images match up with specific symptoms and findings on a doctor’s examination. It’s always wise to consider a second opinion when back surgery is recommended,” he concludes.

11-11:30 p.m. – Quality Patient Care, AMA President Nancy Nielsen, MD, PhD

As a champion of medical quality, Nielsen represents the AMA on initiatives including the National Quality Forum, the AMA Physician Consortium for Performance Improvement, and the Ambulatory Care Quality Alliance.

Saturday, Feb. 16:

8 -9 a.m. – State of Drug Diversion in the United States, David Joranson, MSSW

This presentation will define diversion and discuss various types of diversion and the nonmedical uses of opioid pain medications that create illicit demand. It also will address the important distinction between diversion of prescribed versus unprescribed prescription analgesics and diversion control methods that target sources of diversion without interfering in medical practice and patient care. Sources of information about diversion will also be provided.

9-10 a.m. – The Dark Side of Addiction: Relevance to Pain Medicine, George Koob, MD

The conceptualization of drug addiction as a disorder that consists of neurobiological adaptive mechanisms involved in emotional processing may be relevant to pain management and addiction vulnerability.

“Addiction has been conceptualized as a syndrome that moves from an impulse control disorder to a compulsive disorder to produce excessive drug intake and loss of control over drug intake. Impulsivity is driven by key neurochemical elements,” says Koob.

Acute withdrawal from all major drugs of abuse produces increases in reward thresholds, increases in anxiety-like responses, and increases in CRF levels in the brain. CRF antagonists block excessive drug intake produced by dependence. “This brain stress response system as hypothesized has a critical role in driving the compulsivity associated with the loss of control over drug seeking behavior and may be a potential site for overlap with the emotional component of chronic pain. These same neurochemical circuits may be a key component of the normal neurocircuity of emotional processing that is vulnerable to disruption in other psychopathology associated with reward function,” Koob concludes.

10:30 – 11:30 a.m. – The Nature and Nurture of Pain, Jeffery Mogil, PhD

Pain is associated with much interindividual variability, including the propensity to develop chronically painful pathologies after injury or infection. Genetic-linkage mapping efforts in mice and targeted genetic association studies in humans are beginning to identify the genes underlying much of the variability noted in these traits.

“In our laboratory, we have recently uncovered a number of genes associated with thermal and inflammatory nociception,” explains Mogil. “These efforts may lead to new clinical treatments for pain or facilitate the patient-centered, individualized treatment of pain using current pharmaceuticals. In addition, we are now paying greater attention to the identification of environmental factors that affect pain behavior in mice. We have recently observed modulation of pain in mice by purely social factors. These data can be interpreted as providing evidence for the existence of empathy for pain in this subprimate species.”

The 24th annual meeting of the American Academy of Pain Medicine offers a selection of educational opportunities in pain medicine. Approximately 1,000 people are expected to attend the meeting.

“The AAPM annual meeting is a gathering of pain medicine experts from across the country who spend three days together sharing information about the latest research, patient care, and regulatory issues that affect the practice of pain medicine,” says Dr. Sitzman.

###
All information is embargoed for date and time of presentation.

Founded in 1983, AAPM is the medical specialty society representing physicians practicing in the field of pain medicine. The Academy is involved in education, training, advocacy and research in the specialty of pain medicine. Information is available on the practice of pain medicine at http://www.painmed.org. For additional meeting details, please link to http://painmed.org/annual_mtg/index.html

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THE FIRST UK FIBROMYALGIA CD TO RAISE FUNDS FOR RESEARCH

It is a first! A new single CD called Fibro What? is being launched next month to raise funds for research in the hope it may lead to a cure for the invisible disability, fibromyalgia.

The new upbeat tune is written and sung by comedy songwriter Dom Collins, who has a dear friend with fibromyalgia. The CD is supported by three lighthearted songs, based on the belief that laughter is the best medicine.

The tracks with three of them a bit tongue in cheek, include Fibro What? A girl called Chips, Does my arse look big in these? Can you lend me a tenner please Dad?

A Comedy Songwriter Of The Year, Dom Collins, a Manchester lad who day job is a ‘postie’, always receives great reviews and writes about what he knows – day to day events – and guarantees no bad language. This cheeky Mancunion, a City supporter, who follows in the footsteps of George Formby, Mike Harding, Bob Williamson and Richard Digance, claims he will attend any private function including divorces, vasectomies, as well as coming out of or going into prison.

Always ready for a laugh his reviews include

· Folk say “We have heard nothing like that since Mike Harding” and that’s nice innit!?!

· “They would have kept you on stage for another two hours if we had let them.”

· “Baring infernal intervention, this lad is gonna be bloody big!! I mean he is going all the way” – CD Review From Chorlton Folk Club

Although the four track singles CD will be available next month, it is hoped that fibromites everywhere will purchase a copy to support research to play on May 12 the International Fibromyalgia Awareness Day, at their coffee mornings or other awareness events.

Dom’s friend, Chris Thomson who has fibromyalgia, said, “Dom has done other charity work and I knew he would help if he could. He has done a great job and we are proud of him. I have seen him on stage and he had me in stitches.”

To read more about Dom log on to www.domcollins.co.uk
For more information about the availability of the four track singles CD called Fibro What? Please email me at jeannehambleton@mac.com

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IMPORTANT NEW NEWS ABOUT THE FIBROMYALGIA CONFERENCE

Hi everyone ~ I wanted to update everyone on what is going on at the Fibromyalgia Conference. If you don’t have information on this conference, here it is. It is going to be an awesome conference. So much information from Doctors / Demonstrators. We are very excited about this!!

We have been notified that the Hotel is wanting some of the rooms that we have blocked. They are full other than the rooms we have booked and there are other people that want these rooms. If you are anticipating coming to this conference, please be sure to call the Ramada in Hollywood, Florida, and reserve your room. Here is their information. http://www.ramadahbr.com Book it with a credit card. They don’t charge you until you arrive at the hotel.

We have put together part of the schedule. We are still waiting on some of the people to call and schedule. We are still working on the Thursday schedule. We are waiting for schedule for massage therapist, person from company that sells Lyrica, a Hydro Therapist, a person that does Yoga, etc.

THURSDAY (schedule coming soon)

FRIDAY 10:00-12:00 – Acupuncturist 1:00-2:00 – Pharmacist ~ does regular and compound pharmacy 3:00-5:00 – Dr. Nelson ~ a holistic chiropractor

SATURDAY 10:00-12:00 – Dr. Lechner ~ well known local Rheumatologist and his Wife Trudy. He works with Fibromyalgia people ~ his wife has Fibromyalgia. She works with him in this office as a counselor at the office to help people with Fibromyalgia.

1:00-? – Dr. Roger Murphree ~ He is a well known Doctor, and Author. He works with supplements with people with Fibromyalgia, Chronic Fatigue, and many other diseases.

Saturday evening dinner is included as part of the conference

SUNDAY Brunch Buffet is included as part of the conference. We will get together, to say goodbye, and talk about where our next conference will be. You will be amazed by the new friends you have met here, and saying good-bye is difficult.

Again ~ if you are planning on attending this conference, let us know, so we can get you on our list ~ we only can accommodate a certain number. And if you are planning on staying at this hotel, please give them a call IMMEDIATELY as they will not be holding anymore rooms for us as of the end of this week, February 16, 2008.

On a side note, I have about 40 items listed on our Fundraising eBay page at http://hugsebay.com Please check them out because the items are very interesting with a very wide variety. Thank you to all the people who have sent us goods to put on the eBay site to help raise funds to keep sites like this open and free to the public to use. If you’d like to get involved or have any questions about this please contact me at fibroebay@fibrohugs.com

Want more info on the Conference or want to give us some input? Do it on our Conference Forum at http://www.fibrohugs.org/index.php?option=com_fireboard&Itemid=168 Read updates on the Conference at http://www.fibrohugs.org/index.php?option=com_attend_events&task=view&id=1We hope to see you at the Conference!!

((((hugs))))Becky

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A LETTER TO ‘NORMALS’

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

How many times do you feel guilty when you watch your family do jobs which you used to do without thinking about it? What is your reaction to that barbed comment, “No, you sit still. You said you don’t feel well!”

Yes me too – I want so much to do what I have always done but these days I am forced to look at the jobs and think maybe tomorrow I will feel better. In fact (tomorrow) Mother Mañana has become my middle name

I read an article about one fibromites who made the front page of her local newspaper because she told them she was dying to do her own washing up? Certainly a good angle for a story and it raised quite a bit of awareness, but that nevertheless does not stop you feeling isolated with your invisible disability.

Come to think of it, this could be a wonderful story for the local paper for International Fibromyalgia Awareness Day on May 12. Just imagine if all the local newspapers carried the story and talked about raising awareness, it is such a silly story we would even make television.

But I do try to look on the bright side of any situation and must admit I have met such pointed remarks with the comment, “Well, you know I had to drop out of the London Marathon and was very disappointed I could not do the skydive.” This usually brings a smile and clears the air. It helps if no offence was intended.

But recently someone sent me a copy of a letter written by Ronald J. Waller on behalf of his wife, for the website, www.fibrohugs.com, where it has been viewed almost 29,000 times.

It is a poignant letter that supports the need for understanding for fibromites and leaves the reader in no doubt that the writer is certainly suffering and under pressure.

The composer of this letter is Ronald J. Waller, who is a published writer and has his own website http://rjswritingloft.com.

He told me, “After watching my best friend, my wife, suffer from fibromyalgia I felt compelled to write, inform and continue to learn more about this demon that not only invades Carolyn’s life but also has affected all who are close to her.”

My thanks to Ronald for sharing this with us and thanks to Fibrohugs for allowing us to publish this.

LETTER TO NORMALS

Hello Family, friends and anyone wishing to know me,

Allow me to begin by thanking you for taking the time out of your day to spend time with me and to get to know me better. A person’s time is their most valuable asset and yours is appreciated.

I want to talk to you about Fibromyalgia Syndrome (FMS) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are mis-informed. Because of this judgements are made that may be incorrect…….So I ask you to keep an open mind as I try to explain who I am and how FMS/MPS has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see – a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, whose attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I. You will not see my scars as you would a person who had suffered a car crash. You will not see my pain in the way you would a person undergoing chemo for cancer. However, my pain is just as real and just as debilitating. In many ways my pain may be more destructive because people cannot see it and do not understand……..Please do not get angry at my seemingly lack of interest in doing things. I punish myself enough I assure you. My tears are shed many times when no-one is around. My embarrassment is covered by a joke or laughter, but inside I want to die……..

Most of my ‘friends’ are gone, even members of my own family do not understand. I have been accused of ‘playing games’ for sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute. This is because the burning and pain in my legs or arms or both is so intense I cannot put my clothes on. I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

I feel like a child at times……just the other day I put the sour cream I had bought in the pantry instead of in the fridge. By the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to ‘lose’ the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the demon assaults me at every turn.. Please try to understand…………

Sleep, when I do get some, is restless. I wake often because the pain of the sheets on my legs is unbearable or because I twitch uncontrollably. I walk through many of my days in a daze with the fibro-fog laughing at me as I stumble and grasp for clarity.

Just because I can do a thing one day, that does not mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening. The next day or even in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. There are those who say ’but you did that yesterday!’ ’What is your problem today?’ The hurt I experience at those words scars me so deeply that I have let my family down again, and still they do not understand……………..

On the brighter side I want you to know that I still have my sense of humour. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandkids and shine when they give me a hug or ask me to fix their favourite toy. I am fun to be with if you will spend time with me in my own playing field. Is this too much to ask? I love you and want nothing more than to be a part of your life. I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do research for your latest project. Many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honoured I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, goals…..and this demon….Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that. I will be there in ways that I can. I will give all I can as I can. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatment, at least right now anyway…….Please understand……..

Thank you for spending your time with me today. I hope we can work through this thing, you and I…..I just need you to just try to understand that I am just like you……………………

For a small insight into the constant pain of a fibromyalgic lift your arm and squeeze the muscle just below your neck on the top of your shoulder, hard enough until it is uncomfortable. Then squeeze a little more and hold it for a few minutes if you can stand it. That is the pain we feel from the roots of our hair to the tips of our toes……………………..

Thank you for taking the time to read this, sorry if the pain experiment hurt’s, it does!! xxxxxxxx

Copyright of Ronald J. Waller and www.fibrohugs.com

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A THOUGHT PIECE

by Jeanne Hambleton © 2008
NFA Leader Against Pain-Advocate

Grab a cup of coffee, sit comfortably and let us begin. The papers here in the UK this weekend have been full of justice being handed out contrary to British law by groups of Muslim elders sitting judgment on those with the same religious beliefs, in a redundant public house, someone’s front parlour or elsewhere.

Whatever your feelings may be on this I think you will have to agree with me that in this country we are in a bit of a mess it seems. The Government does not seem to know if it is on it’s head or it’s heels. I am saddened when I read about the stabbings of schoolboys, the stoning and battering of good citizens trying to protect their own property, the problems from the binge drinking, increased teenage pregnancies, the turmoil faced by broken families after quickie divorces when children need a mother and father, and the general behaviour today. My parents never talked about divorce. I doubt they could have afforded to divorce. My Dad was too busy earning a small wage to put food on the table. They had their ups and downs but separate – never. They married for better or worse. As I did. Yes I am still on my first marriage after 3 children and two grandchildren, and proud of it. How have we come to this sickness of people thinking only of themselves without considering the turmoil they leave behind them and how others have to live with their thoughtlessness? .

Yes I know I can hear you say – here she goes again – on about the good old days. I seem to be on the Soap Box again – sorry about that. But you must agree we (we those of us of a certain age) did respect our parents, grandparents, elders, teachers, and of course the ‘Bobby’ on the beat. Cheek him, and he would cuff you with his firm cape. Today the children seem fearless. As one paper described them, they have become ‘feral’ groups – wild – looking for kicks at the expense of other people.

But what about us grown ups, are we any better? Would you give up your seat on the crowded 5.30pm train to a pregnant woman – or would you think she should not be travelling at rush hour? Maybe you would offer your seat on a crowded bus to a young mother and child, a granddad or someone disabled? Do you stop and help someone who has fallen over in the street or dropped all their shopping? Or do you hurry by in case it is a trick to rob you? Does your conscience encourage you to throw a 50p coin in the hat of some poor homeless soul, so as to make you feel good?

Is it not time we took stock of the way we live our lives? This could be your grandmother, your pregnant sister, or even your child who was born disabled and it is not his fault, struggling to cope without any offers of help?

I believe the trouble today is we do not have time to stop and think about anything other than ourselves, our problems, our mortgage, career, wife and children.

While I am not a church-goer, I do believe there is something else after death. I do consider I am a Christian and I would stop and help an old lady pick up her shopping or offer comfort if she fell. I was offered the same comfort when I fell.

This does make me remember something I learned at school which for no particular reason has stuck in my mind. “Do unto others as you would have them do unto you!” I seem to think I heard this in RE (Religious Education).

When an email arrived on my desktop about a mother of three children and two unwashed smelly men, I felt the moral of the story was so strong that I should share it with others. I am told it is a true story – I really hope it is.

BREAKFAST AT MACDONALDS

I am a mother of three (ages 14, 12, 3) and have recently completed my college
degree. The last class I had to take was Sociology.

The teacher was absolutely inspiring with the qualities that I wish every human being had been graced with.

Her last project of the term was called, ‘Smile.’ The class was asked to go out and smile at three people and document their reactions. I am a very friendly person and always smile at everyone and say hello anyway. So, I thought this would be a piece of cake, literally.

Soon after we were assigned the project, my husband, youngest son, and I went out to McDonald’s one crisp March morning. It was just our way of sharing special playtime with our son. We were standing in line, waiting to be served, when all of a sudden everyone around us began to back away, and then even my husband did.

I did not move an inch… an overwhelming feeling of panic welled up inside of me as I turned to see why they had moved. As I turned around I smelled a horrible ‘dirty body’ smell, and there standing behind me were two poor homeless men.

As I looked down at the short gentleman, close to me, he was ‘smiling’. His beautiful sky blue eyes were full of light as he searched for acceptance.

He said, ‘Good day,’ as he counted the few coins he had been clutching. The second man fumbled with his hands as he stood behind his friend. I realized the second man was mentally challenged and the blue-eyed gentleman was his salvation. I held my tears as I stood there with them.

The young lady at the counter asked him what they wanted. He said, ‘Coffee is all Miss’ because that was all they could afford. (If they wanted to sit in the restaurant and warm up, they had to buy something. He just wanted to be warm).

Then I really felt it – the compulsion was so great I almost reached out and embraced the little man with the blue eyes.

That is when I noticed all eyes in the restaurant were set on me, judging my every action. I smiled and asked the young lady behind the counter to give me two more
breakfast meals on a separate tray.

I then walked around the corner to the table that the men had chosen as a resting spot. I put the tray on the table and laid my hand on the blue-eyed gentleman’s cold hand.

He looked up at me, with tears in his eyes, and said, ‘Thank you.’

I started to cry as I walked away to join my husband and son. When I sat down my husband smiled at me and said, ‘That is why God gave you to me, Honey, to give me hope.’

We held hands for a moment and at that time, we knew that only because of the Grace that we had been given were we able to give. We are not churchgoers, but we are believers.

I returned to college, on the last evening of class, with this story in hand. I turned in ‘my project’ and the instructor read it. Then she looked up at me and said, ‘Can I share this?’ I slowly nodded as she got the attention of the class.

She began to read and that is when I knew that we as human beings and share this need to heal people and to be healed. In my own way I had touched the people at McDonald’s, my son, instructor, and every soul that shared the classroom on the last night I spent as a college student.

I graduated with one of the biggest lessons I would ever learn – unconditional acceptance. Much love and compassion is sent to each and every person who may read this and learn how to love people and use things – not love things and use people.

She added an angel wrote many people will walk in and out of your life, but only true friends will leave footprints in your heart. To handle yourself, use your head. To handle others, use your heart. God gives every bird it’s food, but He does not throw it into its nest.

So the moral of this story is – we have got to work at it. Think about if you were in their situation? Consider if you were a mother with a small child carrying groceries and struggling and standing on a crowded bus. I will leave you with this thought – there must be more to life than thinking about ourselves.

I would love to hear your comments! What do you think? How can we change this ‘sickness’?
Talk soon. Jeanne.

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Disability and quality of life in patients with fibromyalgia.

Verbunt JA, Pernot DH, Smeets RJ.

ABSTRACT:

BACKGROUND: Patients with fibromyalgia often feel disabled in the performance of daily activities. Psychological factors seem to play a pronounced disabling role in fibromyalgia. The objectives of the study are: Firstly, to investigate contributing factors for disability in fibromyalgia. Secondly, to study psychological distress in patients with fibromyalgia as compared to other nonspecific pain syndromes. And finally, to explore the impact of fibromyalgia on a patient’s quality of life.

METHODS: In this cross sectional study, explaining factors for disability were studied based on a regression analysis with gender, mental health, physical and social functioning as independent variables. For the assessment of disability in fibromyalgia the FIQ was used. The levels of psychological distress in patients with fibromyalgia, Complex Regional Pain Syndrome (CRPS) and chronic low back pain (CLBP) were compared based on scores on the Symptom Checklist (SCL90). Quality of life of patients with fibromyalgia was compared with scores (SF36) of both patients with fibromyalgia and other health conditions as derived from the literature. RESULTS: Disability in fibromyalgia seemed best explained by a patients mental health condition (beta=-0.360 p=0.02). The level of psychological distress was higher in patients with fibromyalgia as compared to patients with CRPS or CLBP (p<0.01). The impact of fibromyalgia on quality of life appeared to be high as compared to the impact of other health conditions.

CONCLUSIONS: Patients with fibromyalgia report a considerable impact on their quality of life and their perceived disability level seems influenced by their mental health condition. In comparison with patients with other pain conditions psychological distress is higher.

PMID: 18211701 [PubMed - as supplied by publisher]

1: Health Qual Life Outcomes. 2008 Jan 22;6(1):8 [Epub ahead of print]

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SHIRLEY GOODNEST AND MARCY

by Jeanne Hambleton © 2008
NFA Leader Against Pain – International Advocate

This little story was sent to me by a fibromite who described the tale as charming. I do agree with her. In a world full or woes and wars, this is story of pure innocence that is quite heartening. Enjoy.

A mom was concerned about her kindergarten son walking to school since he did not want his mother to walk with him.
 
She had an idea of how to handle it.  She asked her good friend if she would follow him to school, staying at a distance so he would not notice her.  

The friend said since she was up early with her toddler anyway, it would be a good way for them to get some exercise, so she agreed.  

The next school day, the friend and her little girl set out following Timmy as he walked to school with another neighborhood boy he knew.  She did this for the whole week.

As the boys walked along, kicking stones and chatting, Timmy’s little friend noticed the same lady following them.  

Finally he said to Timmy, “Have you noticed that lady following us to school all week?
Do you know her?”
 
Timmy nonchalantly replied, “Yes, I know who she is.”
 
The friend said, “Well, who is she?”
 
“That’s just Shirley Goodnest and her daughter Marcy,” replied Timmy.
 
“Shirley Goodnest?  Who’s the heck is she and why is she following us?” asked his friend.
 
“Well,” Timmy explained, “every night my Mom has me say the 23rd Psalm with my prayers ‘cause she worries about me so much.  And in the Psalm, it says, ‘Shirley Goodnest and Marcy shall follow me all the days of my life’, so I guess I’ll just have to get used to it!”
 
May Shirley Goodnest and Marcy be with you today and always?

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Chronic pain harms the brain

CHICAGO — People with unrelenting pain don’t only suffer from the non-stop sensation of throbbing pain. They also have trouble sleeping, are often depressed, anxious and even have difficulty making simple decisions.

In a new study, investigators at Northwestern University’s Feinberg School of Medicine have identified a clue that may explain how suffering long-term pain could trigger these other pain-related symptoms.

Researchers found that in a healthy brain all the regions exist in a state of equilibrium. When one region is active, the others quiet down. But in people with chronic pain, a front region of the cortex mostly associated with emotion “never shuts up,” said Dante Chialvo, lead author and associate research professor of physiology at the Feinberg School. “The areas that are affected fail to deactivate when they should.”

They are stuck on full throttle, wearing out neurons and altering their connections to each other.

This is the first demonstration of brain disturbances in chronic pain patients not directly related to the sensation of pain. The study will be published Feb. 6 in The Journal of Neuroscience.

Chialvo and colleagues used functional magnetic resonance imaging (fMRI) to scan the brains of people with chronic low back pain and a group of pain-free volunteers while both groups were tracking a moving bar on a computer screen. The study showed the pain sufferers performed the task well but “at the expense of using their brain differently than the pain-free group,” Chialvo said.

When certain parts of the cortex were activated in the pain-free group, some others were deactivated, maintaining a cooperative equilibrium between the regions. This equilibrium also is known as the resting state network of the brain. In the chronic pain group, however, one of the nodes of this network did not quiet down as it did in the pain-free subjects.

This constant firing of neurons in these regions of the brain could cause permanent damage, Chialvo said. “We know when neurons fire too much they may change their connections with other neurons and or even die because they can’t sustain high activity for so long,” he explained.

‘If you are a chronic pain patient, you have pain 24 hours a day, seven days a week, every minute of your life,” Chialvo said. “That permanent perception of pain in your brain makes these areas in your brain continuously active. This continuous dysfunction in the equilibrium of the brain can change the wiring forever and could hurt the brain.”

Chialvo hypothesized the subsequent changes in wiring “may make it harder for you to make a decision or be in a good mood to get up in the morning. It could be that pain produces depression and the other reported abnormalities because it disturbs the balance of the brain as a whole.”

He said his findings show it is essential to study new approaches to treat patients not just to control their pain but also to evaluate and prevent the dysfunction that may be generated in the brain by the chronic pain.

###
Chialvo’s collaborators in this project are Marwan Baliki, a graduate student; Paul Geha, a post-doctoral fellow, and Vania Apkarian, professor of physiology and of anesthesiology, all at the Feinberg School.

For more information on Dante Chialvo visit: www.chialvo.net/index.html

Contact: Marla Paul
Marla-Paul@northwestern.edu
312-503-8928
Northwestern University

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Fibromyalgia