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What is ME?

Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS) or (ME/CFS), is a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems.

ME is classified as a neurological disorder in the World Health Organization’s International Classification of Diseases (ICD G93.3) since 1969.

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What are the symptoms of ME?

The International Consensus Criteria (ICC-ME), developed in 2011 by an International Consensus Panel consisting of clinicians and researchers, provides the most definitive formalized classification of myalgic encephalomyelitis (ME) symptoms. These criteria are, incidentally, the only criteria consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).

The ICC-ME defines ME as an acquired neurological disease with complex global dysfunctions. Pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport are prominent features.

Less specific symptom classifications, with a greater focus on fatigue and biopsychosocial-related illness are provided by the 2003 Canadian Consensus Criteria (CCC) for ME/CFS and by the 1994 Fukuda Definition for CFS.

A comprehensive symptom checklist for CFS, with less specificity, has been developed by Dr Katrina Berne.

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What causes ME?

ME can follow acute infection, such as glandular fever and upper respiratory infections; a flu-like illness; exposure to chemicals, environmental pollutants or heavy metals; immunisation; and severe physical trauma such as major surgery or a serious accident. There is also strong links with food malabsorption, food intolerance and gut dysbiosis.

ME frequently appears with other medical conditions, the most common being Fibromyalgia, and Multiple Chemical Sensitivity, a name given to those whose low-level exposure to everyday chemicals (like perfumes and deodorants, cigarette smoke, car exhaust) cause headaches or trigger asthma. These conditions contribute to the deterioration of the quality of life for people with ME, and contribute to severity of ME symptoms.

Who gets ME?

ME affects men, women and children of all ages, cultures and socioeconomic backgrounds. The prevalence of ME is also a contentious topic.

International studies conducted in recent years have put the prevalence of ME between 0.4% to 2.6% of the population (Jason, 2007) however varying definitions and classifications of ME have impacted on reporting and diagnosis of the condition. As awareness about ME among researchers, patients and health practitioners increases, prevalence statistics are also likely to be affected.

Where can I find a doctor to help me ?

Most doctors know very little about CFS and even less about ME and the failure of research and diagnostic definitions has contributed to a culture of skepticism among the medical community. As a result, those with the condition are frequently regarded as malingerers or hypochondriacs.

Quite often you will receive a diagnosis of CFS after clinic testing fails to reveal anything significant. It is very likely a a doctor will then refer you to a psychiatrist or recommend exercise-based programs which are shown to be ineffective and harmful.

A common response is to regard the patient as the problem, rather than acknowledge a failure of the medical system.

At present, mainstream clinical options are limited to treatment of some symptoms, eg sleep medications for insomnia, non-steroidal anti-inflammatories for pain and headaches,  and beta blockers for improving blood flow.

Depending on the country you live in, more complex treatment protocols are available from so-called cfs specialists and lyme literate doctors. These practitioners operate on the fringes, using unvalidated treatments, and operate at the whims of the prevailing medical/government consensus.

To find a new GP, whether for symptom relief or to try one of the many cfs treatment protocols, reach out to your local or national support group (google chronic fatigue syndrome support together with your location) or simply visit online forums and ask.

In some cases detailed up-to-date lists are provided by some support groups on request. Due to the potential for medical establishment harassment of these doctors, such lists may be handled ‘in confidence’.

It is also a good idea to go to your support local support groups or the forums for a referral to a ME/CFS-aware psychiatrist, as depression is frequently a secondary issue with the illness. Again be warned, treatment involving graded exercise is harmful, with serious and long-term effects commonly reported. Psychiatrists advocating this treatment should be avoided.

In the UK, ME advocate Janet Smart sends out a ME/CFS-friendly doctor list on request.

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Written by Russell Logan

Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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  1. I have ME and a specialist said I should be on the 25% group as it is very bad. I have off ill since 1972 with so called panic attacks but I believe now were atrial fibrillation , attacks due to the enormous thumps in the chest before the attack and pulse of 250+. I have very bad crashes after the tiniest of exercise (sitting up having a cup of tea ) The main problems though are inability to stand (weakness) and severe pains in all muscles. I am on Morphine and Paracetamol , with Codeine (Morphine again ). Sometimes the pains are beyond belief and no-one will help me , my doctor is 1/2 mile away but says she will see me die first before helping me by coming to visit. I have tried a pain clinic ,but was told to commit suicide rather than help me, once he heard I had ME. Surely this is out of order. I can assure you that my family were with me on both occaisons . Why cant I go onto a stronger pain killer. Surely I should be on some kind of assistance.
    I have put in formal complaints but my doctors lied about tests I have never had. My wife is at breaking point. I am thinking of suicide as suggested by my doctors , but I am frightened.

    • Hi Mit John. Your experiences and feelings are commonplace for people with ME. Although I can’t offer professional advice, as someone who has suffered from ME for decades, I urge you to seek alternative medical advice, for a number of reasons.

      Finding a doctor who is sympathetic to your suffering or more understanding should be a priority, and is certainly something you have a right to expect, even if it means travelling further.

      A number of symptoms you describe could indicate co-morbid illness, or another illness altogether. Eg, severe pain may be an indicator of another illness, even fibromyalgia (for which there is more acceptance and better treatment options). You have described heart problems and these should be investigated fully.

      You might consider stepping away from your diagnosis of ME, not because it may be incorrect, but because it may adversely affect your relationship with any new doctor or specialist.

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