Myalgic Encephalomyelitis and Fibromyalgia: are they really similar illnesses?
There have been over 60 recorded outbreaks of Myalgic Encephalomyelitis (M.E.) recorded worldwide since 1934, none of Fibromyalgia. Fibromyalgia does not occur in epidemics.
M.E. has been strongly associated (for more than 50 years now) with a viral prodromic illness. Many symptoms are symptoms of viral illness and research has also shown a viral cause for the illness. Fibromyalgia has never been associated with a viral prodromic illness and does not have viral-type symptoms and is instead far more likely to be triggered by head and neck trauma, car accidents etc.
The two illness not only do not share a World Health Organisation International Classification of Diseases (ICD) listing, but are not even in the same section. Fibromyalgia is classified in ICD-10 at section M79.0 under Soft Tissue Disorders; M.E. however, is classified as an organic neurological disorder with the code G93.3. It is also not permitted for the same condition to be classified to more than one rubric, since ICD categories are mutually exclusive.
There is a much higher prevalence of Fibromyalgia compared to M.E. Approximately 422 per 100,000 or 0.42% of adults meet the criteria for M.E., whereas 3 - 10 % (depending on the study) of the adult population have Fibromyalgia.
Many people with severe M.E. (25 – 30%) are housebound and bedbound by the illness, some for many years or even decades. Many ME/ICD-CFS patients need part-time or full-time carers to manage the tasks of daily living; they cannot feed themselves, prepare their own food, do any of their own cleaning or manage their own personal care. Being unable to work full time or even part time is very common - even moderate M.E. is extremely disabling. This level of incapacity simply does not occur in Fibromyalgia (there is not anywhere near the same severity and level of disability in Fibromyalgia as there is in ME).
Deaths from M.E. from organ failure (most commonly pancreatic or heart failure) are well documented (one specialist puts the rate of death from M.E. at 3%). Fibromyalgia has never been fatal, and heart failure or pancreatic failure are never seen in Fibromyalgia.
Fibromyalgia is well known to commonly co-exist with a variety of illnesses such as Lyme disease, Lupus and various other autoimmune diseases. ME does not share this characteristic.
Some make the statement that: ‘ME and Fibromyalgia are basically the same illness, how you can tell which one you have is that if fatigue is your worst symptom you have ME (or CFS), if pain is your worst symptom you have Fibromyalgia.’ This statement or ‘theory’ is utterly absurd;
ME is characterised primarily by damage to the central nervous system (the brain) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis. Therefore, although Myalgic Encephalomyelitis is primarily neurological, symptoms may be manifested by: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. Symptoms are also caused by a loss of normal internal homeostasis; The body/brain no longer responds appropriately to homeostatic pressures, including (to varying extents): physical activity, cognitive exertion, sensory input and orthostatic stress. (See The M.E. Symptom List for more information.)
The hallmark feature of Fibromyalgia is severe widespread pain.
Fatigue is not the main symptom of ME, many experts have spoken out against the bogus fatigue model of the illness invented in 1988 by politically and financially motivated psychiatrists (See Quotes). Severe pain however, is a very common symptom of M.E. It is entirely possible (and likely) that someone could have M.E. and no fatigue at all and for someone with Fibromyalgia to have considerable fatigue and for both patients to have the exact same level of severe pain. This ridiculous myth has to be stopped as it is entirely baseless and can only cause confusion and harm to both patient groups. (The use of terms such as ‘FM/ME/CFIDS/CFS’ is equally absurd.)
How this myth may have got started is through patients with Fibromyalgia identifying with some of the features listed in the misleading and inaccurate CDC definition of CFS (which many studies have shown selects a very diverse patient group and in fact rates very poorly at actually identifying M.E. patients; see the numerous studies by Leonard Jason and others in the Definition of ME section for more information). Legitimate descriptions of the illness such as the 2003 Canadian Definition and the descriptions by Ramsay tell an entirely different story however. Legitimate description of M.E. describe an illness that is entirely dissimilar to Fibromyalgia (or to the CDC definition of CFS for that matter.)
The two groups may also be distinguished from each other by various tests. Brain lesions, extremely low blood volume, low natural killer cell counts, cardiac insufficiency and mitochondrial defects (for example) are all seen in ME but never in Fibromyalgia, just as high levels of substance P are common in FMS patients but are not seen in those with ME Interestingly, when patients have both illnesses the test results given are the ones for M.E. only. The question needs to be asked; do these ME patients really have Fibromyalgia too, or do they just have severe pain as part of their M.E.? (Which has been misdiagnosed as Fibromyalgia) These test results strongly suggest the latter.
Because of the different symptomatology and pathology, treatments which help people with Fibromyalgia are inappropriate for ME patients and vice versa; treatments may be useless or even extremely harmful when used on the wrong illness (although there may be some overlap in treatments for pain).
The symptoms of M.E. and Fibromyalgia are also completely different. People with Fibromyalgia also do not have the heart problems and orthostatic problems which are so characteristic of M.E., nor do they have the extreme exercise intolerance that all people with M.E. have. Fibromyalgia patients also do not have the cardiac and cardiovascular symptoms seen in M.E., or the homeostatic disequilibrium symptoms, or the autonomic symptoms, or the gastrointestinal symptoms, or the immune system dysfunctions, or the muscular weakness and paralysis, or any of the neurological dysfunctions. The profound cognitive deficits seen in M.E. are never seen in Fibromyalgia. People with severe Fibromyalgia do not lose the power of speech or the ability to read or write as people with severe M.E. do. They do not become unable to recognise family members or have any other severe problems with memory. They do not have seizures. The brain lesions seen in the brain scans of M.E. patients who have such cognitive problems (and damage to the brain) are never seen in Fibromyalgia. There is not the same level or type of damage to the brain in Fibromyalgia as there is in M.E. As these are all the things which make up ME, it is fairly obvious the two illness have little in common with each other; indeed the only thing they do have in common is severe pain (which is seen in both illnesses). One symptom.
The similarities between the two illnesses are minimal and superficial at best but their differences are truly profound. Even if they do share one or two symptoms is this really significant when in so many much more important ways they are so VERY different and have so very little in common? The idea of these two very different patient groups being mixed up and treated as if they represented the exact same patient group is utterly terrifying, the results could only be disastrous for all concerned.
(It is particularly important to note that one of the main features of ME is exercise intolerance. (See The ME Symptom List for details), overexertion is the single most common cause of relapses in M.E. Overexertion may also lead to disease progression for ME patients and sudden deaths have also been reported after exercise in these patients. In contrast, exercise has repeatedly been shown to greatly improve Fibromyalgia symptoms. Fibromyalgia patients react in an entirely different way to exercise than M.E. patients.) See Treating M.E. for more information.
There is a very real risk that if the illnesses were seen as ‘basically the same’ that patients would be given very inappropriate and harmful medical advice. People with M.E. may be yet again given inappropriate advice to exercise: 'people with Fibromyalgia exercise and they get better, Fibromyalgia and M.E. are the same illness basically so why don't you want to exercise? How can it be making you sicker? Maybe you want to stay ill.' It might also lead to comparisons between the very different severity levels of the illnesses. A person with very severe M.E. might unfairly be told: ‘Most people with Fibromyalgia are able to keep working full-time, you have M.E. which is basically the same illness, so why can’t you? You mustn’t be trying hard enough.’ People with Fibromyalgia may also be unfairly and inappropriately advised not to exercise (a treatment which is often very beneficial for Fibromyalgia sufferers).
If that weren’t bad enough, if the two illnesses were seen as representing the same patient group, medical understanding of both illnesses would not advance from its present level. You could say goodbye to finding blood tests to diagnose the conditions, to research that would find out more about the pathology of the illnesses and to any new treatments or a cure for M.E. or Fibromyalgia. Mixed Fibromyalgia and M.E. patient groups would make discovering any of these things practically impossible.
There is nothing to be gained by joining these two illnesses as if they were exactly the same when in reality they have almost nothing in common. All that can result from such a decision is huge disadvantages and setbacks for both groups medically, socially and politically.
Fibromyalgia and Myalgic Encephalomyelitis are distinct and unique illnesses and it is vitally important that they are always seen that way for the benefit of all patients involved.
