Call for a Correction – Chronic Fatigue Syndrome is Not ‘Chronic Fatigue’

To the Editor of Consumer Reports:

You ran a very useful article in the February 2007 issue, "Get better care from your doctor." Much good advice. However, the writer referred to Chronic Fatigue Syndrome as "chronic fatigue." This indicates that Consumer Reports does not understand the illness variously known as Chronic Fatigue Syndrome (CFS), Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalopathy (ME), or, as it is coming to be known more often now, ME-CFS.

This complex, multi-organ, life-destroying illness is not ‘chronic fatigue.’

This is an illness that has been plagued for decades both by the lack of a diagnostic marker to definitively indicate one has CFS/ME, and by the name itself: Chronic Fatigue Syndrome. Both have contributed to its being disparaged by the medical community and receiving very minimal funding – given the great number of people who suffer with it – by comparison with other better known, better understood, but not more serious illnesses.

Common responses are that:

  • Almost everyone thinks they are fatigued at some time. Believe me, they are not decimated as they are with CFS/ME.
  • Or "oh, you look well." Patients generally do not show outward symptoms.
  • And disbelief. Probably the majority of physicians still believe this is not a true physical illness but a psychological one. Untrue, as thousands of studies, including brain scans, have shown definitely.

Progress is being made in research to identify a marker or markers. Progress is being made in the medical community, slowly, as more doctors begin to understand the illness correctly. Progress will be made when the name is no longer Chronic Fatigue Syndrome.

Eight of the country's preeminent CFS/ME doctors met recently at the International Association for Chronic Fatigue Syndrome conference, and collectively chose to change the name in general use to CFS/ME: Chronic Fatigue Syndrome/Myalgic Encephalopathy (not encephalomelitis). Here is a link to that information:

The National CFIDS Association and the Centers for Disease Control are also collaborating to raise awareness of the seriousness of this illness. For more information, please go to and

Those with ME/CFS would appreciate a correction in one of your future issues stating that you really meant 'Chronic Fatigue Syndrome,' also called 'Chronic Fatigue Syndrome/Myalgic Encephalopathy' (CFS/ME or ME/CFS), or 'Chronic Fatigue and Immune Dysfunction Syndrome' (CFIDS).

Thank you very much.

Billie Moore [ME-CFS patient]

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One thought on “Call for a Correction – Chronic Fatigue Syndrome is Not ‘Chronic Fatigue’”

  1. Keybard says:

    Conundrums and Corrections – a chat with the like-minded

    Thank you for writing this article Billie. I agree entirely and you saved me the effort of writing EXACTLY what you did. I am committed to CFS (and FM) science education personally and as the Assistant to the Science Director for the National ME-FM Action Network in CAnada. ( I have a Physical THerapy degree, as well as 20 years of bad experience with ME-CFS and FM. I agree entirely with the points you made. One of the huge problems we are up against in terms of public perception and doctors’ understanding of CFS is this spin/ignorance caused by this common, incorrect “short form” some writers. Even people with CFS use the term all the time and I roll my eyes. I wonder sometimes if they think they are being “cool” or sounding like insiders, when really they are just spreading misconceptions. ugh.

    While the public domain is a hotbed of misunderstanding, I think the problem is best nipped in the bud at medical schools. Until doctors are already primed as students in med school to accept, anticipate and acknowledge the severity, frequency and the existence of recent ME-CFS scientific research and the nature of ME-CFS as a whole, people with this life-sapping, soul-searing illness will continue to have the experience of dismissal and ignorance on all levels of life. (Such education of doctors is not (yet)happening as a rule in Canadian universities, how about in the States?)

    Important attributes of CFS all but a handful of doctors typically miss, downplay or simply disbelieve are that disabling in CFS:

    1. PEM – and i wish it were called post-exertional rebound, not malaise, which sounds so frivolous. YOu miss this concept and you miss the core principle of CFS, as far as i am concerned.
    2. POTS/COI/NMH – and the concomitant mobility and other problems that spin off from them. Automonic and endocrine problems abound in the worst stages of CFS and are often downplayed as “getting older” and other rubbish.
    3. MCS – which i wish were called multiple chemical reactivity, since sensitivity sounds like the person is precious and picky; (Newsflash – see Canadian Human Rights website – MCS is now a supported diagnosis of disability!!)
    4. The fact that there are at least 3 stages of severity (Paul Cheney’s work) each with its own expected clinical picture and best management strategies
    5. that there is a CFS biomarker based on gene impairments and it has shown evidence that there are at least 6 subtypes of CFS and each of these subtypes could rationally be expected to manifest differently from the others.
    6. The total illness burden of the whole picture, day in day is crucial to proper understanding of the illness
    7. This illness is more common than MS, lung cancer, Parkinson’s and many other illnesses taken seriously by government bodies; for CFS, there is no treatment publicly available which directly addresses the underlying pathology (yet)- this is worse in Canada where we don’t even have any clinical trials to participate in.
    8. It is apparently not possible for everyone with CFS to get better and those who cannot are not necessarily doing something (or anything) wrong. The desperation to try anything and to improve does not mean the patient is “overfocusing on the illness” and just needs to forget her problems and get a life. THe severely ill CFS patient does not have the Functional Available Metabolic Energy to “get a life”(My term I coined to try to help explain this – FAME)- that is the chief complaint that brought them to the doctor in the first place. However, laypeople and uninitiated doctors often get this backwards and forget the patient is focusing on the illness because they have experienced that if they don’t, no one will, not even the doctor whose medical responsiblity it is to know these things.
    9. There are at least 7 entrenched conundrums associated with the personal, social, medical and governmental (mis)management of ME-CFS. These conundrums perpetuate themselves, feeding into each other almost seamlessly. All of the problems, injustices, public misrepresentation and spin/ignorance in the media related to CFS come back to these conundrums and finding a chink in the “armour” of this Knight from Hell is crucial.

    The situation, from the public/media CFS name botch-ups to the lack of medical school curriculum covering CFS appears to be the same all over the world. Until these points spontanteously come out of the physician’s mouth instead of the patient pushing or pleading for them to be recognized during a short and usually futile (dis)appointment, we are facing the same merry-go-round of lack of access to proper health care and lack of justice/human rights.

    Awareness takes time, and unfortunately it also takes the efforts of the likes of us, sick members of society who should optimally be convalescing, instead coming forth at cost of personal health and becoming the educators of the well. But that is just one of the conundrums…

    All the best and thanks again for your article.

    Linda MacDonald
    Sherwood Park, alberta, Canada

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