me ... (the illness)

info ...
me ... (the illness)

ME {myalgic encephalomyelitis} is a potentially chronic and disabling neurological disorder, which causes profound exhaustion, muscle pain and and cognitive problems such as memory loss and concentration for which the cause is still unknown. Other symptoms that are common include sensitivity to light, noise and smell, disturbed sleep patterns and persistent headaches. Myalgic Encephalomyelitis means pain in the muscles and inflamation of the brain.

It can affect people of either sex, and any age or social group. Severity and duration, and the resulting disability vary considerably, but many patients suffer profound ill health, and greatly reduced physical and cognitive function, interfering with activities of daily living, employment and education.

The main symptom of ME is a severe fatigue and malaise following exercise, with weakness and pain in the muscles after use, and frequently muscle twitching. In the more recent past there were misconceptions that only certain social classes were affected and many people regarded the illness as a relatively mild condition – some even doubted its very existence. In fact, around 20% of sufferers are so severely affected that they are either house or bed-bound and have enormous difficulty performing even basic personal tasks unaided.

The clinical features that enable ME to be distinguished from other causes of fatigue are firstly the new onset of unexplained fatigue, lasting over six months, not related to ongoing exertion, and not substantially alleviated by rest, associated with a reduction in one’s level of activity by 50% together with a range of other symptoms.

The most important things your doctor can do is to make sure that you do not have another treatable condition causing your symptoms. Some general practitioners may refer you to a hospital consultant for a second opinion, although this is not essential.

Once a diagnosis of ME has been made, it is helpful to make a plan of management for the illness as soon as possible in order to reduce its duration and effect on your life.

Patients suffering from ME may show features of other syndromes, notably irritable bowel syndrome and fibromyalgia: and patients with these conditions may also have some of the characteristic features of ME This suggests that they may share similar pathogenetic, predisposing or triggering factors, perhaps representing a family of related disorders.


taken from the NHS condition website

Introduction
Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn’t go away with sleep or rest.

CFS is also known as ME, which stands for myalgic encephalomyelitis. There’s some debate over the correct term to use for the condition, but these pages will refer to the condition as CFS.

CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.

Who is affected?
It’s estimated around 250,000 people in the UK have CFS.

Anyone can get the condition, although it’s more common in women than men.
It usually develops when people are in their early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15.

How it affects quality of life
Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe symptoms. These are defined as follows:

  • mild – you’re able to care for yourself, but may need days off work to rest
  • moderate – you may have reduced mobility, and your symptoms can vary; you may also have disturbed sleep patterns and need to sleep in the afternoon
  • severe – you’re able to carry out minimal daily tasks, such as brushing your teeth, but have significantly reduced mobility, and may also have difficulty concentrating

Why it happens
It’s not known exactly what causes CFS. Various theories have been suggested, including:

  • a viral or bacterial infection
  • problems with the immune system
  • an imbalance of hormones
  • psychiatric problems, such as stress and emotional trauma

Some people are thought to be more susceptible to the condition because of their genes, as the condition is more common in some families.

More research is needed to confirm exactly what causes the condition.

How it is diagnosed
There are specific guidelines issued by the National Institute for Health and Care Excellence (NICE) about the diagnosis and management of CFS.

NICE says a diagnosis of CFS should be considered if you meet specific criteria regarding your fatigue – for example, it can’t be explained by other conditions – and if you also have other symptoms, such as sleeping problems or problems thinking and concentrating.

The diagnosis can then be confirmed if these symptoms are experienced for several months.

How it is treated
Treatment for CFS may be able to reduce the symptoms. Everyone with CFS responds to treatment differently, so your treatment plan will be tailored to you.

Some of the main treatments include:

  • cognitive behavioural therapy (CBT)
  • a structured exercise programme called graded exercise therapy
  • medication to control pain, nausea and sleeping problems

Most people with CFS improve over time, although some people don’t make a full recovery. It’s also likely there will be periods when symptoms get better or worse. Children and young people with CFS are more likely to recover fully.

Different terms for the condition

  • chronic fatigue syndrome – often used and preferred by doctors as there’s little evidence of brain and spinal cord inflammation, which the term ME suggests; ME is also thought to be too specific to cover all the symptoms of the condition
  • myalgic encephalomyelitis (ME) – preferred by those who feel CFS is not specific enough and doesn’t reflect the severity and different types of fatigue, and implies that fatigue is the only symptom (myalgic encephalopathy is sometimes also used)
  • systemic exertion intolerance disease (SEID) – a new term suggested in a 2015 report by the US Institute of Medicine, which implies that the condition affects many systems in the body (systemic); the word “disease” highlights the serious nature of the condition in some people

Most people with the conditions prefer the name ME as it describes their symptoms better.


NICE GUIDLINES

CFS/ME is a long-term illness with a broad range of symptoms. The prominent symptom for most people is feeling extremely tired (fatigue) and generally unwell (malaise) after minimal effort, which can make it hard to do everyday tasks and activities. People with CFS/ME can also have headaches, sleep problems, muscle pain and problems concentrating. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day. Some people have relatively mild symptoms, while others have a serious illness that severely affects their everyday lives and their families. The illness may last a long time.

People with ‘mild’ CFS/ME are generally able to carry on everyday activities, such as their work or education, or housework, but with difficulty. To achieve this, they may have given up hobbies and social activities and need to rest in their spare time.

People with ‘moderate’ CFS/ME can’t move around easily and have problems continuing normal levels of daily activities. They have usually had to give up their work or education, may need to sleep in the afternoon and rest frequently between activities, and have problems sleeping at night.

People with ‘severe’ CFS/ME are only able to do very basic daily tasks such as cleaning their teeth, or may need help even with these. They may be housebound or even bedbound most or all of the time and need a wheelchair to get around. They have problems with learning, memory and concentrating, and are usually very sensitive to noise and light. It may take them a long time to recover from an activity involving extra effort, such as leaving the house or talking for too long.

There is no one way of managing CFS/ME that helps everyone but there are several options to try.

symptoms & associated syndromes ...

Fatigue – The predominant symptom of ME/CFS is usually severe fatigue and malaise following mental or physical activity, the full extent of this exhaustion often becoming apparent only 24 to 48 hours after the activity {assuming, of course, the person was not already in a ‘recovery period’ from a previous activity}.

Muscle symptoms – Include exercise intolerance and post-exertional malaise {i.e. feeling shattered the day after undue physical activity}, pain/myalgia {present in around 75% of people} and visible twitching of the muscles which sometimes includes eyelid twitching.

Brain and Central Nervous System Symptoms – Include cognitive dysfunction {problems with short-term memory, concentration and maintaining attention}, clumsiness, disequilibrium likened to ‘walking on rubber’, and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension {e.g. fainting}.

Immune System – Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings.

Irritable Bowel Syndrome – Constipation, diarrhoea, frequent abdominal pain, abdominal gas and nausea represents symptoms frequently found in ME patients.

Fibromyalgia – A widespread musculoskeletal pain and fatigue disorder for which the cause is still unknown. Fibromyalgia means pain in the fibrous tissues in the body.

Other common symptoms – Other symptoms which frequently occur in ME/CFS include sleep disturbances, alcohol intolerance, emotional lability or mood swings, features of clinical depression as time goes on, cognitive or memory impairment, palpitations, muscle pain, joint pain {without signs of inflammation}, sore throat, tender lymphadenopathy, headache, postural or rotational dizziness, altered temperature sensation, parathesiae and sensitivity to light and sound.

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 ME and chronic fatigue syndrome remains elusive, but there are many triggering events thought to precipitate its onset. It is estimated that around two-thirds of all cases are preceded by a viral infection of some kind. A substantial proportion of patients relate the onset of ME to an infection. It has also been seen after other herpes viruses, retoviruses, spuma or foamy viruses, enterovirus, Epstein-Barr virus and hepatitis infections and nonviral infections, such as Q fever, toxoplasmosis, salmonellosis, brucellosis and Lyme disease.

Whether infections act simply as a trigger in predisposed individuals or have a specific role in triggering the continuing illness is unclear. There is no consistent evidence of abnormal viral persistence. The pattern that is emerging is a chronically activated immune system, an immune system engaged in some kind of chronic war against some kind of thing that it perceives as foreign. A healthy immune system responds to an enemy virus, or viruses, by releasing chemicals, called cytokines, to fight the invaders. However, when the emergency is taken care of, the production cytokines normally ceases. But in ME patients the immune system apparently fails to shut off. So it is not the virus that makes a person feel sick, he feels ill because his body cells are producing cytokines, which cause the fever, achiness, and fatigue. These cytokines remain and begin to damage the the host until ultimately we see the profoundly bedridden patent.

Other triggers are reported, including some immunisations, chemotherapy and occasionally chemical exposure e.g. organophosphates. A familial component is possible. Events and stressors around the onset may influence the occurrence or maintenance of the altered state. In a recent community based study, about 60% of the subjects had no prior psychiatric diagnosis, though the illness itself appeared to increase evidence of psychosocial stress.

It is also common for many patients to report periods of stress during or before the viral infection took hold. However, there are a great many sufferers who are not able to give a precise moment when the illness took hold and recall feeling increasingly worse over a prolonged period of time.

Almost all practitioners now recognise that there is a strong physical causation involved in ME However, as with any long-term, chronic illness, there will be occasions where secondary psychological factors may contribute to the maintenance of the illness.

diagnosis ...

taken from the NHS conditions website

There’s no test for chronic fatigue syndrome (CFS), but there are clear guidelines to help doctors diagnose the condition.

It can take a long time for CFS to be diagnosed, as other conditions that cause similar symptoms need to be ruled out first.

You may be given some advice about managing your symptoms before a diagnosis is confirmed. See treating CFS for more information.

If you see your GP about persistent and excessive fatigue, they’ll ask you about your medical history and may carry out a physical examination.

You may have blood tests, urine tests and scans to rule out other conditions, such as anaemia (lack of red blood cells), an underactive thyroid gland, or liver and kidney problems.

NICE guidelines for diagnosing CFS
Guidelines released in 2007 from the National Institute for Health and Care Excellence (NICE) state doctors should consider diagnosing CFS if a person has fatigue and all of the following apply:

  • it is new or had a clear starting point (it has not been a lifelong problem)
  • it is persistent or recurrent, or both
  • it is unexplained by other conditions
  • it substantially reduces the amount of activity someone can do
  • it feels worse after physical activity

The person should also have one or more of these symptoms:

  • difficulty sleeping or insomnia
  • muscle or joint pain without inflammation
  • headaches
  • painful lymph nodes that are not enlarged
  • sore throat
  • poor mental function, such as difficulty thinking
  • symptoms getting worse after physical or mental exertion
  • feeling unwell or having flu-like symptoms
  • dizziness or nausea
  • heart palpitations without heart disease

This diagnosis should be confirmed by a clinician after other conditions have been ruled out. The symptoms listed above must have persisted for at least four months in an adult and three months in a child or young person.
For more information, read the NICE guidelines on CFS.

Chronic fatigue syndrome or PoTS?
It’s likely some people diagnosed with chronic fatigue syndrome actually have postural tachycardia syndrome (PoTS).
PoTS is an abnormal increase in heart rate after sitting or standing up, which typically causes dizziness, fainting, sweating and other symptoms.


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 ...

Pharmaceutical
Measures to suppress or alleviate distressing symptoms are important adjuncts to management, and are sometimes forgotten or under-utilised. Approaches can be behavioural or pharmacological, using measures established in other settings, but adapted to this patient group. Patients with ME seem to suffer adverse drug reactions more readily than others and may require care with dose and type of agent used.

Low dose tricyclic antidepressants may improve sleep rhythm in-patients with early morning waking or light dreamy sleep. The rationale must be explained.

Amitriptyline, doxepin or nortripyline, starting at 10mg or trazodone 50mg at night are useful; if excessive sedation or antimuscarinic adverse effects occur, alternatives should be tried. Short term, occasional, use of non-benzodiazepine hypnotics can help patients with major difficulties in getting off to sleep to re-establish a normal sleep pattern.

Tricyclic agents can also alleviate pain, especially if it has neuropathic quality, as can sodium valproate and carbamazepine. Regular analgesics are often of limited long term efficacy. Muscle pain associated with spasms or twitching can be reduced by baclofen or other muscle relaxants. Cognitive behavioural therapy and simple advice {e.g. avoiding caffeine and alcohol} can help both sleep and pain management.

Postural dizziness can improve as cardiovascular fitness improves, and does not require drug treatment. Cinnarizine or betahistine may alleviate rotational vertigo. Frequent or persistent headaches, especially those of a migrainous quality, may be helped by prophylaxis with low dose tricyclics, pizotifen or sodium valproate.

Selective serotonin reuptake inhibitors do not help ME patients without depression. If depression needs treatment, tricyclics can be useful, though slow dose titration is important. Selective serotonin reuptake inhibitors are less well tolerated, but of this group, citalopram and sertraline appear to be useful. Panic attacks and mood swings respond to behavioural management.

Recent studies of low dose corticosteroid treatment have given conflicting results and more data are needed before considering their use in clinical practice.

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.

Exercise
Activity should be managed to assist natural recovery and limit secondary problems, which are intrusive or may interfere with recovery, such as sleep disturbance.

Many patients attempt too high a level of activity until they relapse, leading to cycles of over and under-activity. Others overcompensate and avoid activity, fearing relapse but then develop symptoms of deconditioning {cardiovascular and muscular unfitness} or excessive awareness of physiological changes. It is essential therefore, to establish a base~line that does not provoke relapse and then build up by small tolerable increments slowly {‘pacing’}.

The benefits of graded exercise have been shown by randomised controlled trials. However they cannot be seen as a panacea. As with almost all research in the field, such programmes have excluded those who are most profoundly affected and surveys undertaken by the charities have found an equal number reporting they have been helped by graded exercise as have been made worse.

Diet
ME patients should be encouraged to adopt a healthy, fresh-food diet. It may be helpful to avoid alcohol, coffee, tea, sugar, processed and ‘junk’ foods.

Modifying fibre uptake, usually by reducing it, may help irritable bowel syndrome. Mebeverine or low dose tricyclics may reduce bloating, cramps and diarrhoea.

Some patients find that certain foods increase gut and other symptoms, but they may need guidance about some more radical dietary interventions suggested by other practitioners. A dietician can help manage these aspects and weight change, which may result from altered activity and eating patterns.

useful tests ...

coming soon …

self help ...

Pacing means alternating activity with rest, also alternating different activities e.g. mental work with physical tasks, stopping each before you become exhausted. Rest in the early stages of illness, but avoid complete bed rest unless absolutely necessary.

Given that the symptoms in ME generally fluctuate, it is good to take advantage of those days when you have more energy by doing some of the normal things you did before you were ill.

It is naturally tempting to want to cram everything into those good days – but the effects of such an approach can be damaging, leading to a relapse.

This is sometimes referred to as ‘boom and bust’ so be sure to keep some energy in reserve until you have established your baselines and limitations.

Cautiously experiment to determine the level of activity {physical and mental} you can manage without causing a relapse. Keep within those limits until several days have passed, then if still feeling better gradually increase them.

You may find it helpful to keep a diary or a chart, recording how much you have done and how you feel on each day. Remember to record all your activities, not just the physical. This can help to establish a ‘baseline’ from which you can experiment as you gradually take on more and more activities.

It is impossible to give precise guidance about how much you should do or how long your recovery will take. Every person is different, which is why pacing is a personal programme that each individual develops to establish how much they can do.

Most importantly, do not be disappointed if it takes time. Overdoing it in a rush to get better may well set your recovery back – and remember that most people significantly improve over time.

Do not be deterred by feelings of healthy tiredness {without nausea or prolonged pain}, which after unaccustomed activity/exercise is normal and positively beneficial, and should not deter you from moving your activity/exercise to the next level.

You should however stop if you experience feelings described by some as ‘flu-like’, or if prolonged pain recurs i.e. a flare up of your ME symptoms such as muscle twitching, severe malaise, nausea, loss of brain function, rather than healthy tiredness.

When you feel that these feelings are well past, start your activities again at a level you can cope with and gradually build up.

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.

Ms Denise Mijatovic ... (aka indigo ...)

Ms Denise Mijatovic ... (aka indigo ...)

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I am the owner and main author of me ... website. I want to keep this bit short and sweet so if you want to read more about me then please go to 'about me'.

All the situations in our lives,
from the insignificant to the major,
conspire to teach us exactly what we need
to be learning at any given time.
Patience, compassion, perseverance, honesty, letting go …
all these are covered in the classroom of
the teacher that is your life.

… Daily OM …

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