The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

M.E. vs Fibromyalgia: Introduction

Copyright © Jodi Bassett 2009

Despite the fact that severe pain is a well known and very common symptom of M.E. many M.E. sufferers who have pain are told that they now also supposedly have ‘Fibromyalgia.' But if pain is a recognised symptom of M.E. then how does an additional Fibromyalgia diagnosis made purely on the presence of pain make sense?

Patients who have Fibromyalgia and patients with primary M.E. can be easily distinguished from each other with various tests (and other means including an evaluation purely based on symptomatology), so what do tests show in patients who supposedly have both? Interestingly, when patients (supposedly) have both illnesses the test results given are the ones for M.E. only. So do these M.E. patients really also have Fibromyalgia, or do they just have severe pain as part of their M.E.? As you might expect, these test results strongly suggest the latter.

The same is true of multiple chemical sensitivity syndrome (MCSS); symptoms of chemical sensitivity are part of the core symptoms of M.E. and have long been associated with M.E.(as well as with several other autoimmune illnesses such as multiple sclerosis and Lupus) and so there is no need for an additional diagnosis of MCSS to be made. This additional diagnosis is incorrect. Just because you may fit a definition of Fibromyalgia, or MCSS, or irritable bowel syndrome (IBS) this does not mean that your symptoms are caused by the same etiological or pathological process, or will respond to various treatments the same way, or will have the same prognosis as those people who have primary Fibromyalgia, MCSS or IBS, or anything else.

All of these symptoms from pain to chemical sensitivities to constipation or diarrhoea are all very common symptoms of M.E. making additional diagnoses inappropriate.

See M.E. and other illnesses and ME vs Fibromyalgia (reprinted below) for more information.

M.E. vs Fibromyalgia

Myalgic Encephalomyelitis and Fibromyalgia: are they really similar illnesses?

In short, no they are not. The claimed similarity between M.E. and Fibromyalgia arises purely because of the mistaken belief that M.E. is the same thing as ‘Chronic Fatigue Syndrome.’ But M.E. and ‘CFS’ are anything but synonymous terms.

Differences between M.E. and Fibromyalgia include the following:

One of the most fundamental facts about M.E. throughout its history is that it occurs in epidemics. There is a history of over sixty recorded outbreaks of the illness going back to 1934 when an epidemic of what seemed at first to be poliomyelitis was reported in Los Angeles. As with many of the other M.E. outbreaks the Los Angeles outbreak occurred during a local polio epidemic. There have been zero Fibromyalgia outbreaks. Fibromyalgia does not occur in epidemics.

M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) by the chronic effects of a viral infection. Many symptoms of M.E. are indicative of a viral infection. The world’s leading M.E. experts, namely Ramsay, Richardson, Dowsett and Hyde, (and others) have all indicated that M.E. is caused by an enterovirus. The evidence which exists to support the concept of M.E. as an enteroviral disease is compelling. Fibromyalgia, however, 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. M.E. has a similar strike rate to multiple sclerosis and affects less than 0.5% of the population, whereas 3 - 10 % (depending on the study) of the adult population qualify for a diagnosis of Fibromyalgia.

Many people with severe M.E. (25 – 30%) are housebound and bedbound by the illness, some for many years or even decades. Many M.E. 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 documented as being 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. M.E. does not share this characteristic. M.E. no more occurs with other immune diseases than does M.S. or Parkinson’s disease.

Some make the statement that: ‘M.E. 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 M.E., if pain is your worst symptom you have Fibromyalgia.’ This statement or ‘theory’ is utterly absurd and again, arises due to the confusion between M.E. and ‘CFS.’

M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio). M.E. 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 M.E. or even an essential symptom of M.E. 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’ etc. is equally absurd.)

How this myth may have got started is through patients with Fibromyalgia identifying with some of the features listed in the definitions 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. Legitimate descriptions of the illness such as the The Nightingale Definition of M.E. 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 various definitions 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 M.E. but never in Fibromyalgia, just as high levels of substance P are common in FMS patients but are not seen in those with M.E. 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 (and other facts) 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 possibly 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 problems maintaining homeostasis, 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 distressing to say the least, as 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 M.E. 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 any type of useful new research that may lead to real treatments or cures for M.E. or Fibromyalgia. Mixed Fibromyalgia and M.E. patient groups would make discovering any of these things absolutely 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.

Similar lists could also be created to show the differences between Myalgic Encephalomyelitis and; Lupus, Lyme disease, multiple sclerosis or Gulf War Syndrome. Although M.E. does have far more in common with all of these illnesses than with Fibromyalgia, these illness are all (more significantly) unique and distinct illnesses with different symptoms, core characteristics, aetiology’s, and pathologies which it would be equally unwise (and unscientific) to treat as if they represented the same illness. 

See M.E. and other illnesses for a brief selection of some of the many research studies and articles which show that despite sharing some symptoms, ME and Fibromyalgia (and Gulf War Illness and many others) are undoubtedly, separate illnesses.

Also note that M.E. and ‘CFS’ are anything but synonymous terms:

1.     Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as ‘CFS’ is ‘medically unexplained.’ A diagnosis of ‘CFS’ does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with ‘CFS’ is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a ‘CFS’ (mis)diagnosis. Every diagnosis of ‘CFS’ can only ever be a misdiagnosis.

2.     Myalgic Encephalomyelitis is a systemic neurological disease initiated by a viral infection. M.E. is characterised by (scientifically measurable) damage to the brain, and particularly to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus. The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.
     M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. There are more than 60 different neurological, cognitive, cardiac, metabolic, immunological, and other M.E. symptoms. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

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