"evaluate the effects of exercise training including cardiorespiratory (aerobic), muscle strengthening, and/or flexibility exercise on global well-being, selected signs and symptoms, and physical function in individuals with FMS."

"There is 'gold' level evidence that supervised aerobic exercise training has beneficial effects on physical capacity and FMS symptoms. Strength training may also have benefits on some FMS symptoms. Further studies on muscle strengthening and flexibility are needed. Research on the long-term benefit of exercise for FMS is needed."

Researchers from the section of Physical Medicine and Rehabilitation at the University of Manitoba Rehabilitation Hospital (Canada) recently published an article on a trial conducted to determine the benefit of nabilone, a synthetic cannabinoid, in pain management and quality of life improvement in fibromyalgia patients. The article was e-published ahead of print in the Journal of Pain, on October 30th.

The randomized, double-blind, placebo-controlled trial was conducted to determine the benefit of nabilone in pain management and quality of life improvement in 40 patients with fibromyalgia. A visual analog scale (VAS) for pain was used as the primary measure, with secondary outcome measures being number of tender points, the average tender point pain threshold, and the Fibromyalgia Impact Questionnaire (FIQ). The 4 week trial found that there were significant decreases in the VAS and anxiety in the nabilone treated group, with no significant improvements in the placebo group.

The researchers said:

"To our knowledge, this is the first randomized, controlled trial to assess the benefit of nabilone, a synthetic cannabinoid, on pain reduction and quality of life improvement in patients with fibromyalgia. As nabilone improved symptoms and was well-tolerated, it may be a useful adjunct for pain management in fibromyalgia."

• Talks start at 4.30pm with John Holt from the West Berks Neurological Alliance giving the first talk. He will be talking about the Alliance and his plans to bring a hydrotherapy pool to Newbury.
• After a talk on the Group itself, I will be giving a talk on what ME & FM really are, including clinical findings in both conditions and the modern avenues for treatment.
• Before and after the talks there will be plenty of time for people to chat with group members, browse the information stands and buy tickets for the raffle.
• Refreshments will be available as well as plenty of chairs! The venue is also fully accesible for wheelchairs.
• There will also be a craft stall stocked by some of our talented members, with a percentage of takings going towards the group.

Quite a few local VIPs have said they are going to attend and Richard Benyon MP is hoping to make it.

• Look for treatments, not cures.
• Find a health care provider who will work with you.
• Try tested therapies before untested therapies.
• When a treatment improves symptoms, you must correspondingly increase function.
• THERE IS HOPE!

For all nine points and more information on each, see the article. It's an interesting piece.

On October 1^st the BBC and ME Association reported on a pilot study where CFS patients found they had less fatigue when eating dark chocolate with a high cocoa content. Study leader Professor Steve Atkin, said the idea for the study came after a patient reported feeling much better after swapping her normal milk chocolate for dark chocolate with a high cocoa solid content. The trial involved 10 patients who received a daily dose - 45g - of dark chocolate or white chocolate dyed to look like dark chocolate for two months. The patients then had a month off before taking the other type of chocolate for two months. Those taking dark chocolate reported significantly less fatigue and reported feeling more fatigue when they stopped eating it.

"Although finding a chronic infection of the stomach may not directly prove a similar infection in the brain, muscle or heart, it opens up a new direction in the research for this elusive disease."

Dr Charles Shepherd, medical adviser to the M.E. Association, said the study would re-open the debate into whether persistent viral infection plays a role in the condition. He said:

"We know from previous research that enteroviruses, the group of viruses being investigated in this study, can trigger ME/CFS in some people.

There is also some evidence that enteroviral infection can then persist in various parts of the body including muscle and brain - a finding that could help to explain why muscle and brain symptoms are so characteristic of the illness.

"The new clearly adds weight to this theory. The findings also raise the question of whether antiviral drug therapy would be beneficial in this particular sub-group of ME/CFS patients."

This theory is discussed in Dr Shepherd's book, 'Living with ME' (the 1999 edition) which I am re-reading at the moment. It is an interesting theory for me as I started getting ill after a whiplash but also a bad stomach infection.

"Although effective treatments are available no guidelines exist for management of FMS... The objectives were to ascertain the strength of the research evidence on effectiveness of treatment of FMS and develop recommendations for its management based on the best available evidence and expert opinion to inform healthcare professionals."

Of the 146 studies they found were eligible for review, 39 pharmacologic intervention studies and 59 nonpharmacologic studies were used to create the final recommendations, after those of lower quality or with insufficient data were excluded. Identified categories of treatment were antidepressants, analgesics and "other pharmacological," and exercise, cognitive behavioral therapy, education, dietary interventions, and "other nonpharmacological interventions."

The authors conclude:

"These recommendations are the first to be commissioned for FMS, although previous reviews have addressed the area. These recommendations should assist health care providers, with a secondary intention to incorporate information into materials for patients. The 9 recommendations included 8 management categories, 3 of which had strong evidence from the current literature, and 3 were based on expert opinion."

Specific recommendations in these guidelines regarding general considerations for management of FMS are as follows:

• Comprehensive evaluation of pain, function, and psychosocial context is needed to understand FMS completely, because it is a complex, heterogeneous condition involving abnormal pain processing and other secondary features (level of evidence, IV D).
• Optimal treatment of FMS mandates a multidisciplinary approach, which should include a combination of nonpharmacologic and pharmacologic interventions. After discussion with the patient, treatment modalities should be specifically tailored based on pain intensity, function, and associated features such as depression, fatigue, and sleep disturbance (level of evidence, IV D).

Specific recommendations on nonpharmacologic management of FMS are as follows:

• Heated pool treatment, with or without exercise, is effective (level of evidence, IIa B).
• For some patients with FMS, individually tailored exercise programs can be helpful. These may include aerobic exercise and strength training (level of evidence, IIb C).
• For certain patients with FMS, cognitive behavioral therapy may be beneficial (level of evidence,IV D).
• Based on the specific needs of the patient, relaxation, rehabilitation, physiotherapy, psychological support, and other modalities may be indicated (level of evidence, IIb C).

Specific recommendations on pharmacologic management are as follows:

• Tramadol is recommended for management of pain (level of evidence, Ib A). Although other treatment options may include simple analgesics (eg, paracetamol) and other weak opioids, corticosteroids and strong opioids are not recommended (level of evidence, IV D).
• Antidepressants are recommended for the treatment of FMS because they decrease pain and often improve function (level of evidence, Ib A). Appropriate options may include amitriptyline, fluoxetine, duloxetine, milnacipran, moclobemide, and pirlindole.
• Tropisetron, pramipexole, and pregabalin are recommended for the treatment of FMS because they reduce pain (level of evidence, Ib A).

This is a tremendous step forward for Fibromyalgia patients as previously you needed to refer to individual studies when asking about treatments to try with doctors who are not expert and up-to-date in Fibro. Now there is one article that summarises everything. The recommendations for general considerations for management are brilliant, the recommendations on nonpharmacologic management are strongly needed and the recommendations on pharmacologic management are more up to date than anything else I have read (I'm very happy to see pramipexole is mentioned by name!).

"...[Fibromyalgia has] historically been substantially underserved by both the medical profession and the pharmaceutical industry.

 

...

Given the high unmet need and large patient population, fibromyalgia is one of the most keenly anticipated new central nervous system (CNS) markets in the pharmaceutical industry."

"We the undersigned petition the Prime Minister to ensure that doctors are educated about fibromyalgia and myofascial pain.

Research shows that between 5-8% of the population suffer from fibromyalgia and chronic myofascial pain, yet most sufferers are not diagnosed until they have suffered for at least 2 years.

We need awareness to be increased so that patients will be diagnosed earlier on and be able to start treatment sooner.

Patients should not have to wait for more than 2 years for a diagnosis of a condition that is so common!

Most medical degrees include only 1 or 2 lectures about fibromyalgia and myofascial pain, despite the fact that more than 1 in 20 people suffer from these painful conditions! Doctors need to learn more about fibromyalgia."

 

"We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome.

The latest DWP Guidelines and PACE are still directing the Health Service to treat ME suferrers with GET and CBT (a tool used for mental illnesses) despite the mounting evidence from a vast amount of research proving that ME is an organic not a psychosomatic disease and that the treatments forced onto those affected do in fact cause more harm than good and can worsen the condition of patients. Money should instead be invested in research into the physiologocal aetiology of ME/CFS and its treatment. Patients should not be forced into becoming psychiatric cases or lose their benefits."

Wow. the government isn't doing well with Fibro this month! This petition was asking to Government to fund research into FMS. The Government's reply is as follows (emphasis added by me):

 "As you may know, relatively little is known about the causes of fibromyalgia. Despite a great deal of commitment on the part of professionals and voluntary organisations, there are still considerable gaps in our knowledge about the diagnosis and treatment of this condition.

The Department of Health (new window) supports research and development of relevance to the NHS in hospitals, general practice and other health care settings. It also funds the NHS Research and Development Programme, which is managed on its behalf by the Medical Research Council (MRC)(new window). The MRC is the main Government agency for research, which receives its funding via the Department for Innovation, Universities and Skills.

Currently, the MRC has no specific research on fibromyalgia, although the basic research that the MRC supports in areas of pain and neurobiology is relevant to developing our understanding of the condition. There is now a Medical Advisory Board attached to the Fibromyalgia All Party Parliamentary Group, and one of its tasks will be to look into research on fibromyalgia.

The MRC does not directly commission research projects or earmark funds for particular research areas. Funds are allocated by a process that requires investigators to submit proposals for rigorous peer review. The MRC always welcomes high quality applications for support into any aspect of human health and these are judged in open competition with other demands on funding. The key factor in deciding whether a proposal is funded or not is the quality of the science and its potential contribution to human health. In addition, the MRC identifies priorities for medical research in a number of ways, including strategic reviews of specific areas of science and by responding to Department of Health priorities.

In August 2003, the Chief Medical Officer (CMO) issued a newsletter that was sent to all doctors in England, specifically addressing the problem of fibromyalgia information dissemination. The CMO acknowledges the condition and the extent to which it affects the population. He raises awareness of a leaflet about fibromyalgia, which has now been made available to all GP surgeries throughout the UK. The leaflet offers guidance on the main symptoms, diagnosis and treatment of fibromyalgia together with a brief summary of the current ideas for the underlying pathogenesis.

The Medical Advisory Board of Fibromyalgia Association UK produced the leaflet which is available from the Association's website at: www.fibromyalgia-associationuk.org (new window). The leaflet preceded a more comprehensive medical pack on the management of fibromyalgia for the multi-disciplinary team, which can also be requested on the website.

You may also be interested in the National Service Framework (NSF) for Long-term Conditions (new window), which was published in March 2005. The NSF has a particular focus on the needs of people with neurological conditions and brain and spinal injury. It tackles some of the generic issues affecting a wide range of people with long-term conditions. Although it does not cover fibromyalgia directly, it is hoped that work to establish standards of service for neurological conditions will have wider application and so benefit people with non-neurological conditions."

Well, starting at the bottom, can the Government please at least decide what kind of condition Fibro is and so which framework/guidelines applies? In response to the last petition they said the Musculoskeletal Framework applies - 1, it shouldn't, and 2, fibromyalgia is mentioned by name in it and that is all. Most treatments/therapies/etc for musculoskeletal conditions do not apply with FMS. The NSF for Long-term Conditions, neurological ones in particular, would be better for FMS - as this reply suggests - except that the Government STILL doesn't recognise FMS as being neurological and the NSF makes no mention of it.

Part of the problem with this is the leaflet mentioned in the reply. Although it is a very useful leaflet that I recommend to FMS members, I also tell them that the sections on causes of Fibro and treatments are out of date. It is this out of date information that the Government is absing it's guidelines on.

Research into Fibro isn't exactly encouraged by what I can make out. The FMAUK doesn't promote research projects like the American Assoc does and a lot of doctors are more interested in the biopsycological side of things, as with ME-CFS. At least 1.8million people in the UK have fibromyalgia (and that figure is likely to be much higher in reality, especially when you consider the amount of mis-diagnoses that go on). Someone should be doing something about this and the Government could be encouraging this!