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Can we call ME/CFS a disease?

Discussion in 'General Advocacy Discussions' started by Michiel Tack, May 1, 2019.

  1. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    What about Parkinson's disease and Alzheimers' disease? As I understand it, in both cases there is an observable and objective pathology that ME/CFS does not have, but a common causal process seems to be missing in those illnesses as well.
     
  2. aza

    aza Established Member (Voting Rights)

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    @Jonathan Edwards Thanks Prof. I guess Wikipedia is not well informed either but I agree with its definition:

    A syndrome is a set of medical signsand symptoms that are correlated with each other and, often, with a particular disease or disorder.[1] The word derives from the Greek σύνδρομον, meaning "concurrence".[2] In some instances, a syndrome is so closely linked with a pathogenesis or cause that the words syndrome, disease, and disorder end up being used interchangeably for them. This is especially true of inherited syndromes. For example, Down syndrome, Wolf–Hirschhorn syndrome, and Andersen syndrome are disorders with known pathogeneses, so each is more than just a set of signs and symptoms, despite the syndromenomenclature. In other instances, a syndrome is not specific to only one disease. For example, toxic shock syndrome can be caused by various toxins; premotor syndrome can be caused by various brain lesions; and premenstrual syndrome is not a disease but simply a set of symptoms.

    If an underlying genetic cause is suspected but not known, a condition may be referred to as a genetic association (often just "association" in context). By definition, an association indicates that the collection of signs and symptoms occurs in combination more frequently than would be likely by chance alone.[3]

    Sorry, I am on the phone and can’t quote it properly.
     
  3. Webdog

    Webdog Senior Member (Voting Rights)

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    In the United States, the National Academy of Medicine, CDC, NIH and NY State Department of Health all refer to ME/CFS as a "disease".
     
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    There are well established common causal processes for these as I understand things. In true Idiopathic Parkinson's Disease there is depletion of dopaminergic cells in the substantial nigra. In Alzheimer's Disease there is an increase in amyloid proteins in the brain and neurofibrillary tangles, not to mention cortical shrinkage. It is true that the causal pathway is not worked out in either case but at least some of these features look to be causally linked to clinical features (dopamine deficit especially) and even if these are epiphenomena they provide pretty good circumstantial evidence for a common causal process being involved.

    You might say we have the equivalent for ME/CFS but sadly I do not think we yet have anything firmly enough established.
     
  5. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Just tell them to call back.
     
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  6. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    No need for an apology. If the Thought Police show up, spray them with Brain Fog.
     
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  7. aza

    aza Established Member (Voting Rights)

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    The CDC website under "Diseases & Conditions A-Z Index" calls CFS/ME an 'illness' and Fibromyalgia a 'condition'. Note: There is no entry for Migraine...
    The NHS Scotland website A to Z common illnesses and conditions calls CFS/ME a 'condition', Fibromyalgia a 'condition' as well as a 'syndrome' and Migraine a 'health condition'.
    The New Zealand Ministry of Health website don't list any of them under 'Diseases and Illnesses'.
    The Public Health Agency of Canada website used to call CFS/ME an 'ilness' but the entry has been ARCHIVED. Fibromyalgia is a 'syndrome'. No entry for Migraine...
    The NHS England Health A to Z website calls CFS/ME an 'illness', Fibromyalgia a 'syndrome' and 'condition', Migraine is a 'health condition'.

    Looks like a real mess to me.
     
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  8. sea

    sea Senior Member (Voting Rights)

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    A doctor once said to me that what I had was an illness - and by that he said he meant he accepted that I didn’t feel well, not that there was something physically wrong with me. I never know when a doctor uses the term illness, condition, disease or syndrome what they actually mean by it. It seems they can choose their own definitions as it suits them.
     
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  9. TrixieStix

    TrixieStix Senior Member (Voting Rights)

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    I think my illness "Relapsing Polychodritis" is a good example to use in this "disease" vs "syndrome" debate.

    Relapsing Polychonditis (RP) has no known biomarker, and is currently thought to be a syndrome that is autoimmune in nature. The etiology of RP is unknown.

    Even with all these unknowns RP is still a respected diagnosis in the medical commmunity and considered very "real". RP is being researched by autoimmune research institutes around the world including the NIH which has on ongoing RP research program involving patients. One of the NIH doctor's heading up the NIH RP research program is an RP patient herself (with quite severe symptoms).

    The syndrome is taken very seriously by doctors as it is often progressive in nature and can result in death. For many most RP'ers the pharmacologic treatment involves long-term corticosteroids in conjunction with DMARDs and/or biologics.

    Just wanted to give an example to show that it can be done by the medical community. They can recognize and respect the serious nature of a condition (in this case a syndrome) in which so little is known about it and for which there is no biomarker.
     
    Last edited: May 2, 2019
  10. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    This recent news story might be of interest to this discussion:

    "Researchers define Alzheimer's-like brain disorder. LATE symptoms resembles Alzheimer's disease but has different cause."
    https://www.sciencedaily.com/releases/2019/04/190430121800.htm
    I hope we'll be at that stage of defining subgroup within ME/CFS, within the next decade.
     

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