fm ... (the illness)

info ...
fm ... (the illness)

FMS {fibromyalgia syndrome} is a potentially chronic and disabling neurological disorder, which causes widespread musculoskeletal pain, fatigue disorder and cognitive problems such as memory loss and concentration for which the cause is still unknown. Other symptoms include sensitivity to light, noise and smell, disturbed sleep patterns and persistent headaches. Fibromyalgia means pain in the fibrous tissues in the body.

The pain comes from the connective tissues, such as the muscles, tendons, and ligaments. FMS does not involve the joints, as does rheumatoid arthritis and osteoarthritis. Most patients with FMS say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with FMS, but it shows up in people of all ages.

Musculoskeletal pain and fatigue experienced by FMS patients is a chronic problem, which tends to have a waxing and waning intensity. There is currently no generally accepted cure for this condition According to recent research; most patients can expect to have this problem lifelong. However, worthwhile improvement may be obtained with appropriate treatment, as will be discussed later. There is often concern on the part of patients, and sometimes physicians, that FMS is the early phase of some more severe disease, such as multiple sclerosis, systemic lupus erythematosus, etc. Long-term follow up of FMS patients has shown that it is very unusual for them to develop another rheumatic disease or neurological condition. However, it is quite common for patients with “well established” rheumatic diseases, such as rheumatoid arthritis, systemic lupus and Sjogren’s syndrome to also have FMS.

It is important for their doctor to realize they have such a combination of problems, as specific therapy for rheumatoid arthritis and lupus, etc. does not have any effect on FMS symptoms. Patients with FMS do not become crippled with the condition, nor is there any evidence it effects the duration of their expected life span. Nevertheless, due to varying levels of pain and fatigue, there is an inevitable contraction of social, vocational activities which leads to a reduced quality of life. As with many chronic diseases, the extent to which patients succumb to the various effects of pain and fatigue are dependent upon numerous factors, in particular their psycho-social support, financial status, childhood experiences, sense of humour and determination to push on.

Physicians who aren’t familiar with FMS may do extensive testing to determine what is wrong. This creates frustration and seldom yields a diagnosis because, at this time, there are no routine blood tests or X-rays that show abnormalities in FMS.

However, FMS can be diagnosed with some certainty by informed physicians who will look for a history of chronic symptoms of at least three months’ duration along with reports of pain in all four quadrants of the body.

Physicians will also perform a simple physical exam of the 18 specific points. The American Rheumatology Society has been instrumental in defining the diagnostic criteria for FMS. They deem it to be present when at least 11 of the 18 points are tender or painful to pressure. While physicians specializing in Rheumatology or Physical Medicine have often diagnosed and treated FMS, many GPs are also knowledgeable about this syndrome. The best physician for you will be one who works with you to find the most helpful treatments.

Patients can find themselves unable to work in their chosen professions and may have difficulty performing everyday tasks. As a consequence of muscle pain, many FMS patients severely limit their activities including exercise routines. This results in their becoming physically unfit – which eventually makes their FMS symptoms worse.

taken from the NHS conditions website

Fibromyalgia, also called fibromyalgia syndrome (FMS), is a long-term condition that causes pain all over the body.

As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • fatigue (extreme tiredness)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as “fibro-fog”) – such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS) – a digestive condition that causes stomach pain and bloating

If you think you have fibromyalgia, visit your GP. Treatment is available to ease some of its symptoms, although they’re unlikely to disappear completely.

What causes fibromyalgia?
The exact cause of fibromyalgia is unknown, but it’s thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body.

It’s also suggested that some people are more likely to develop fibromyalgia because of genes inherited from their parents.

In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as:

  • an injury or infection
  • giving birth
  • having an operation
  • the breakdown of a relationship
  • the death of a loved one

Who’s affected?
Anyone can develop fibromyalgia, although it affects around seven times as many women as men. The condition typically develops between the ages of 30 and 50, but can occur in people of any age, including children and the elderly.

It’s not clear exactly how many people are affected by fibromyalgia, although research has suggested it could be a relatively common condition. Some estimates suggest nearly 1 in 20 people may be affected by fibromyalgia to some degree.

One of the main reasons it’s not clear how many people are affected is because fibromyalgia can be a difficult condition to diagnose.

There’s no specific test for the condition, and the symptoms can be similar to a number of other conditions.

How fibromyalgia is treated
Although there’s currently no cure for fibromyalgia, there are treatments to help relieve some of the symptoms and make the condition easier to live with.

Treatment tends to be a combination of:

  • medication – such as antidepressants and painkillers
  • talking therapies – such as cognitive behavioural therapy (CBT) and counselling
  • lifestyle changes – such as exercise programmes and relaxation techniques

Exercise in particular has been found to have a number of important benefits for people with fibromyalgia, including helping to reduce pain.

Support groups
Many people with fibromyalgia find that support groups provide an important network where they can talk to others living with the condition.

Fibromyalgia Action UK is a charity that offers information and support to people with fibromyalgia. If you have any questions about fibromyalgia, call the charity’s helpline on 0844 887 2444.

The charity also has a network of local support groups you may find helpful and a online community, where you can find out about news, events and ongoing research into the condition.

Another support group you may find useful is UK Fibromyalgia.


Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.

The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy – as if someone just “pulled the plug”.

Fibromyalgia is a common illness. In fact, it is more common than rheumatoid arthritis and can even be more painful. Prevalence of Fibromyalgia: A Survey in Five European Countries (see for details) put the prevalence of FM at between 2.9 and 4.7%. People with mild to moderate cases of fibromyalgia are usually able to live a normal life, given the appropriate treatment.

If symptoms are severe, however, people may not be able to hold down a paying job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain.

symptoms & associated syndromes ...

Pain – The pain of FMS has no boundaries. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively. People with FMS suffer chronic widespread pain, which can be described as burning, throbbing, shooting, or stabbing. Painful areas often include the upper back, shoulders, neck, the lower back, and other areas around the joints.

Fatigue – This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as “brain fatigue” in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating. Most people with FMS complain of fatigue. It can be profound, interfering with all daily activities.

Sleep disorder – Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that FMS patients could fall asleep without much trouble, but their deep level {or stage 4} sleep was constantly interrupted by bursts of awake-like brain activity.}. The sleep pattern for clinically depressed patients is distinctly different from that found in FMS or CFS.

Irritable Bowel Syndrome – Constipation, diarrhoea, frequent abdominal pain, abdominal gas and nausea represents symptoms frequently found in roughly 40% to 70% of FMS patients.

Chronic headaches – Recurrent migraine or tension-type headaches are seen in about 50% of FMS patients and can pose as a major problem in coping for this patient group.

Temporo-mandibular Joint Dysfunction Syndrome – This syndrome, sometimes referred to as TMJD, causes tremendous face and head pain in one quarter of FMS patients. However, a 1997 report indicates that as many as 90% of FMS patients may have jaw and facial tenderness that could produce, at least intermittently, symptoms of TMJD. Most of the problems associated with this condition are thought to be related to the muscles and ligaments surrounding the joint and not necessarily the joint itself.

Multiple Chemical Sensitivity Syndrome – Sensitivities to odours, noise, bright lights, medications and various foods is common in roughly 50% of FMS or CFS patients.

Other common symptoms – Painful menstrual periods {dysmenorrhea}, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin sensitivities, dry eyes and mouth, frequent changes in eye prescription, dizziness, and impaired coordination can occur.

Aggravating factors – Changes in weather, cold or draughty environments, hormonal fluctuations {premenstrual and menopausal states}, stress, depression, anxiety and over-exertion can all contribute to symptom flare-ups.

possible causes ...

The cause of FMS and chronic fatigue syndrome remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection {viral or bacterial}, an automobile accident or the development of another disorder, such as Rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably don’t cause FMS, but rather, they may awaken an underlying physiological abnormality that’s already present in the form of genetic predisposition.

What could this abnormality be? Theories pertaining to alterations in neurotransmitter regulation {particularly serotonin and noradrenalin, and substance P}, immune system function, sleep physiology, and hormonal control are under investigation. Substance P is a pain neurotransmitter that has been found by repeat studies to be elevated threefold in the spinal fluid of FMS patients. Two hormones that have been shown to be abnormal are cortisol and growth hormone.

In addition, modern brain imaging techniques are being used to explore various aspects of brain function–while the structure may be intact, there is likely a dysregulation in the way the brain operates. The body’s response to exercise, stress and simple alterations in position {vertical versus horizontal} are also being evaluated to determine if the autonomic nervous system is not working properly. Your body uses many neurotransmitters, such as noradrenalin and adrenalin, to regulate your heart, lungs and other vital organs that you don’t have to consciously think about. Ironically, many of the drugs prescribed for FMS/CFS may have a favourable impact on these transmitters as well.

diagnosis ...

taken from the NHS conditions website

If you think you have fibromyalgia, visit your GP. Diagnosing fibromyalgia can be difficult, as there’s no specific test to diagnose the condition.

The symptoms of fibromyalgia can vary and are similar to those of several other conditions.

During diagnosis, you’ll be asked about how your symptoms are affecting your daily life. Your body will also be examined to check for visible signs of other conditions – for example, swollen joints may suggest arthritis, rather than fibromyalgia.

Ruling out other conditions
If your GP thinks you may have fibromyalgia, they’ll first have to rule out all other conditions that could be causing your symptoms. These conditions may include:

  • chronic fatigue syndrome (also known as ME) – a condition that causes long-term tiredness
  • rheumatoid arthritis – a condition that causes pain and swelling in the joints
  • multiple sclerosis (MS) – a condition of the central nervous system (the brain and spinal cord) that affects movement and balance

Tests to check for some of these conditions include urine and blood tests, although you may also have X-rays and other scans. If you’re found to have another condition, you could still have fibromyalgia as well.

Criteria for diagnosing fibromyalgia
For fibromyalgia to be diagnosed, certain criteria usually have to be met. The most widely used criteria for diagnosis are:

  • you either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas
  • your symptoms have stayed at a similar level for at least three months
  • no other reason for your symptoms has been found

The extent of the pain used to be assessed by applying gentle pressure to certain “tender points”, where any pain is likely to be at its worst. However, this is less common nowadays.

Diagnosing other conditions
It’s also possible to have other conditions alongside your fibromyalgia, such as:

  • depression
  • anxiety
  • irritable bowel syndrome (IBS)

If your symptoms suggest that you have another condition as well as fibromyalgia, you may need further tests to diagnose these. Identifying all possible conditions will help to guide your treatment.

taken from NICE guidelines website

There is no test to diagnose CFS/ME – doctors diagnose CFS/ME based on your symptoms.

The symptoms of CFS/ME are similar to the symptoms of some other illnesses, and to find out what is wrong (make a diagnosis), your doctor will need to do some tests. There is no specific test that can identify CFS/ME, so the diagnosis has to be based on ruling out other conditions that could be causing your symptoms.

Your doctor should consider CFS/ME if you have disabling tiredness (fatigue) that is new or started suddenly, lasts a long time or keeps coming back and cannot be explained by other causes. CFS/ME should be considered if the fatigue means you can’t do the things you used to, if it gets worse after activity or gentle exercise such as a short walk, and if you also have some of the following symptoms:

  • sleep problems
  • pain in the muscles or joints
  • headaches
  • sore throat or sore glands that aren’t swollen
  • problems thinking, remembering, concentrating or planning
  • flu-like symptoms
  • feeling dizzy or sick or having palpitations (irregular or fast heartbeats), or
  • exercising or concentrating on something makes your symptoms worse.

Your doctor should consult a specialist if they are unsure about the diagnosis, or if you have severe symptoms.

Because CFS/ME has symptoms similar to many common illnesses that get better on their own, doctors should consider whether a person has CFS/ME if they do not get better as quickly as expected. On the other hand, some other serious illnesses may also have the same symptoms as CFS/ME. So your doctor should take special care to rule these out, particularly if you have any of the following:

  • symptoms such as double vision or blackouts that suggest a problem with your nervous system
  • painful, swollen joints
  • chest or heart problems
  • weight loss
  • signs of stopping breathing for short periods while asleep (called sleep apnoea)
  • persistently swollen glands.

Before making a diagnosis of CFS/ME your doctor should ask you questions about your medical history, do a thorough physical examination, and assess your mental health. They should carry out tests to rule out other causes of your symptoms. These will depend on your symptoms but will include urine and blood tests. Your doctor should consult a specialist if they are unsure about the diagnosis, or if you have severe symptoms.

While you are waiting for a diagnosis or a referral, you should be given advice and help to deal with (or manage) your symptoms so that your everyday life and activities are affected as little as possible.

If a child or young person under 18 years old has symptoms of possible CFS/ME they should be referred to a paediatrician (a specialist children’s doctor) within 6 weeks of first seeing their doctor about the symptoms.

If you have new and/or distressing symptoms at any time, you should talk to your doctor about them.

common treatments ...

Traditional treatments are geared toward improving the quality of sleep, as well as reducing pain. Because deep level {stage 4} sleep is so crucial for many body functions, such as tissue repair, antibody production, and perhaps even the regulation of various neurotransmitters, hormones and immune system chemicals, the sleep disorders that frequently occur in FMS and chronic fatigue patients are thought to be a major contributing factor to the symptoms of this condition. Medicines that boost your body’s level of serotonin and noradrenalin–neurotransmitters that modulate sleep, pain and immune system function–are commonly prescribed. Examples of drugs in this category would include Lentizol or Tryptizol {amitriptyline}, Sinequan {doxepin}, Seroxat {paroxetine} and Dutonin {nefazodone}. A low dose of one of these medications may be of help, they can improve the quality of sleep and may reduce pain perception. Routine use of most sleeping pills should be avoided, as they are habit forming. Newer sleeping medications such as Stilnoct {Ambien} might prove useful in some cases.

Nonsteroidal, anti-inflammatory drugs {NSAIDs} like ibuprofen are not particularly helpful. See Phamaceutical

Rehabilitation Treatments
Graded rehabilitation programmes must be individualised for the patient’s symptoms, level of disability and personal circumstances. They should also encompass more than physical exercise; as emotional and mental activities also need to be paced.

Adjustment to the illness, and a behavioural response limiting its impact, while maximising the extent and rate of recovery, is crucial. As with other illnesses, cognitive behavioural therapy, tailored to the patient’s needs, can substantially reduce secondary distress and optimise rehabilitation. Sadly, many perceive cognitive behavioural therapy as treatment for psychiatric disease, rather than a means to assist adjustment and recovery.

Patients with less severe illness can generally be managed by GPs and physicians, but those with more severe and protracted illness or with adjustment difficulties may benefit from more structured input from a team including, for example, physiotherapists, occupational therapists, clinical psychologists, dieticians and social workers.

Alternative Treatments
Many ME patients turn to complementary practitioners for help with an illness for which allopathic medicine has few answers, and surveys indicate high levels of appreciation.

It is important to consult practitioners who are properly qualified. Patients need to understand that no one therapy is likely to provide a magic cure. Many expend large amounts of money or energy looking for an instant cure only to be disappointed.

Acupuncture may help pain and insomnia. Massage with essential oils {e.g. lavender} seems to reduce pain and muscle spasms. Homeopathy and osteopathy have been found helpful by many patients. Relaxation and meditation techniques can be beneficial for those well enough to learn them. Their practice encourages mental as well as physical rest.

Acupuncture, acupressure, nutrition, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or a gentle exercise program. Therapeutic massage, heat or hot baths, ice massage, biofeedback and other relaxation techniques, stress reduction, behaviour modifications, body mechanics, posture training, cognitative behaviour threapy and meditation.

A program of stretching and gentle exercise is essential for FMS patients. A physical therapist or exercise physiologist can help you put together a program that will be beneficial in maintaining muscle tone and a reasonable level of aerobic fitness. Walking, stationary exercise equipment, pool therapy, and stretching seem to be the most suitable activities for the FMS patient. The key is to start slowly and increase your exercise time and level carefully.

There is increasing evidence that a regular exercise routine is essential for all FMS patients. This is easier said than done because increased pain and fatigue caused by repetitive exertion makes regular exercise quite difficult. However, those patients who do get into an exercise regimen experience worthwhile improvement and are reluctant to give up. In general, FMS patients must avoid impact-loading exertion such as jogging, basketball, aerobics, etc. Regular walking, the use of a stationary exercise cycle and pool therapy utilizing an Aqua Jogger {a flotation device which allows the user to walk or run in the swimming pool while remaining upright} seem to be the most suitable activities for FMS patients to pursue. Supervision by a physical therapist or exercise physiologist is of benefit wherever possible. In general, 20 minutes of physical activity, 3 times a week at 70% of maximum heart rate {220 minus your age} is sufficient to maintain a reasonable level of aerobic fitness.

Some research has suggested that eating foods with low sugar content can help FM sufferers. The easiest way to do this is to consult a Glycemic index.

useful tests ...

coming soon …

self help ...

The treatment of FMS can be frustrating for both patients and their physicians. It is important for people with FMS to become active participants in their own health care, not just recipients. By learning self-management techniques, they will be able to handle their symptoms more effectively. Education is essential for this process. Local support groups and educational seminars can be very beneficial in gaining greater understanding. Use the Symptom Diary to monitor your condition.

Most FMS patients quickly learn there are certain things they do on a daily basis that seem to make their pain problem worse. These actions usually involve the repetitive use of muscles or prolonged tensing of a muscle, such as the muscles of the upper back while looking at a Computer screen. Careful detective work is required by the patient to note these associations and where possible to modify or eliminate them. Pacing of activities is important; we have recommended patients use a stopwatch that beeps every 20 minutes. Whatever they are doing at that time should be stopped and a minute should be taken to do something else.

For instance, if they are sitting down, they should get up and walk around or vice versa. Patients who are involved in fairly vigorous manual occupations often need to have their work environment modified and may need to be retrained in a completely different job. Certain people are so severely affected, that consideration must be given to some form of monetary disability assistance. This decision requires careful consideration, as disability usually causes adverse financial consequences as well as a loss of self esteem. In general, doctors are reluctant to declare FMS patients disabled and it is worth seeking specialist help.

ME or FMS ...

taken from the hummingbirds foundation for me (Permission is given for this document to be freely redistributed by e-mail or in print for any not-for-profit purpose provided that the entire text (including this notice and the author’s attribution) is reproduced in full and without alteration.)

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.

Note: 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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