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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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    I apologize in advance for opening the discussion about whether we can call ME/CFS a disease or not. This topic is discussed sporadically in other threads and I thought it might be useful to make one for it, to collect our thoughts about it in a more structured manner. This subject may seem trivial, but it’s something that comes back a lot, in just about every advocacy move we do, whether you’re making a flyer, doing an interview, contacting a politician or just want to inform some friends.

    The prevailing idea is that it’s best not to use the term disease because that implies a reference to a specific pathological state, which is not yet known in ME/CFS. So other terms such as illness or syndrome might be more appropriate. There are others who take a different view, most famously the IOM-report. In the final speech at the NIH conference, Maureen Hanson said: “this is not a syndrome it's a disease.”

    I’ve just read this old article titled: “The confusion between disease and illness in clinical medicine.” The impression I’ve got from it is this: in the 19th century when great scientists like Rudolf Virchow were beginning to discover the organic basis of illnesses, they wanted a word for the pathological changes they discovered and a different word for the symptoms that might correspond with it. To me, that makes sense because research was mostly about how these factors relate to each other. In other words: do the symptoms relate to the biological abnormalities; can the former be explained by the latter?

    The way we currently use the term disease however is different and obfuscate this distinction, because we use it for both the pathological changes and the symptoms we think correspond with them. When we say multiple sclerosis is a disease we do not only mean the damage to the myelin sheath of neurons, but also the symptoms of muscle weakness or fatigue that are associated with it.

    So it seems that the term disease is now used to make a distinction between illnesses where a pathological state corresponds to symptoms (= disease) and others where no such pathological is yet discovered (= not disease). To me, that doesn’t make much sense. There isn’t a line you can draw there. I think that even in illnesses where a pathological state is known, it’s difficult to explain all the symptoms patients have. The fatigue in MS, for example, is still poorly understood and I suspect this is more the rule than the exception. Another problem is that the term disease versus the alternative term, syndrome is not used consistently within medicine. Down syndrome for example has a known pathology, so would be better described as a disease, while little is known about the pathology of Alzheimer’s disease or Parkinson’s disease, so perhaps these could also be described as a syndrome, depending on how you look at it. Depression is occasionally referred to as a disease but hardly ever as a syndrome.

    So I don’t think we make a big mistake or that any insight is lost in using the term disease for ME/CFS. It’s true that ME/CFS is probably quite heterogeneous, but perhaps the same is true of Alzheimer’s disease or Parkinson’s disease. The symptoms of lupus patients can vary widely and MS patients have different illness trajectories which scientists cannot yet explain. So these diseases might also be divided into subgroups based on a different underlying pathology somewhere in the future. It’s hard to name a disease where scientists aren’t trying to subgroup the patient population in the hope of better understanding and treatments.

    It’s also true that little is known about the pathology of ME/CFS but we do have some clues: observed cytokine aberrations that correspond to illness severity, metabolic changes that have been observed by multiple groups and abnormalities on exercise tests such as chronotropic intolerance or an earlier onset of the ventilatory threshold on a second CPET. None of these is certain, but we’re getting there.

    What we usually want to tell people, when we explain what ME/CFS is, is that it's a condition that keeps people terrible ill for decades. That some people suffering from it, are bedbound for years on end and that some parents affected by it are no longer to care for their children or even themselves. We want to say that many people are suffering from this condition and that they not only have similar symptoms, disability and prognosis but that in most cases it started after an infection from which they never recovered. We want to say that scientists are studying the molecular basis of this condition in the hope of finding a treatment.

    In my opinion, this description is not covered by the term ‘syndrome’. Most people would use the term ‘disease’ for what I’ve explained above. So if we as ME/CFS advocates emphasize that ME/CFS is not a disease, we might be causing more confusing instead of avoiding it. Also, as explained in this Wikipedia article: ill without being diseased describes a situation where a "person perceives a normal experience as a medical condition, or medicalizes a non-disease situation in his or her life." So by avoiding the term disease, we might give a misleading impression of ME/CFS.

    These are just some thoughts. Interested in what others make of this and whether they use the term disease or not for ME/CFS.
     
  2. jamari

    jamari Established Member (Voting Rights)

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    I'm unsure if there is an official criteria but I found this definition:

    With the current evidence for ME/CFS, I can see the justification to call it a syndrome. However, It wouldn't surprise me if it turned out to be a disease with real pathophysiological causes.

    Who knows, the name might change. Fingers crossed... as I don't think the label of "CFS" is useful. Some (or most) ordinary people hear that as "go to bed earlier syndrome"..
     
  3. lansbergen

    lansbergen Senior Member (Voting Rights)

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    In dutch we use the word ziekte. It covers everything.
     
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  4. NelliePledge

    NelliePledge Moderator Staff Member

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    I just say illness which isn’t scientific or medical but I’m not qualified to say anything scientific or medical. Just comment about my own experience and “general knowledge” so I can use standard language and terms.
     
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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    It certainly meets the common meaning (from wiki):
    Any argument against ME being a disease creates exceptions to the common definition. There should be good reasons for doing that and there simply aren't. "I disagree" has been the effective reason for decades. Wasn't good back then, still isn't today.
     
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  6. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Yes, that is actually one of the reasons why I'm asking. In Belgium CFS experts often say that you can't use the word 'ziekte' for ME/CFS, that it is a syndrome ('syndroom') instead.

    In English, it might not be much of a problem to avoid the term 'disease' because you still have the term illness which covers a lot of the content. But in Dutch we don't have a term like illness. So if 'ziekte' is not allowed, that means we have to use terms like 'condition' (aandoening), or 'syndrome' (syndroom) which are a bit confusing if you are explaining things to a lay audience.

    So I tend to use the term 'ziekte' after all (the Dutch health council does so as well, so I'm not alone). I'm no linguist but I think 'ziekte' covers both illness and disease in English. Perhaps that explains why I don't see much of a problem in using the term disease in English as well (because I translate it into 'ziekte').
     
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  7. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Now that I think of it AIDS - acquired immune deficiency syndrome - is probably another example. We still use the term syndrome even though we know about the HIV virus. So disease might be a more suitable term.

    I think few people will think of this as a problem or that the name AIDS should be changed. So, it seems that this issue of nomenclature is taking more seriously in ME/CFS than in other areas of medicine.
     
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  8. JohnTheJack

    JohnTheJack Moderator Staff Member

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    Yes, I use 'illness' as well.
     
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  9. JohnTheJack

    JohnTheJack Moderator Staff Member

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    I really don't like 'condition' and would probably correct someone if they used it to me in real life. 'I don't have a condition. I'm ill.'
     
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  10. ladycatlover

    ladycatlover Moderator Staff Member

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    Back in the 90s when I was first ill, and then got online, patients used to call it the DD - "the Dread (or Damned) Disease". I don't see why it shouldn't be called a disease.
     
  11. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think 'a disease' has to imply that we know of some common causal process for all cases. That does not have to mean a common causal initiator. At the moment I don't think we can be confident that everyone with ME/CFS has some shared causal process. More people with ME/CFS may have higher TGF beta levels but we are not sure that everyone has high levels (they don't). So I don't think we are at the stage of ME/CFS being a disease.

    But that does not mean it is a not-disease. It just means we are not ready to say it is a disease. We are prepared to believe that maybe it is two or four diseases that seem very similar - like haemophilia A and B.

    I think syndrome is the right level for now. Syndrome does not just mean a collection of symptoms and signs. It means a collection of symptoms and signs that appear together consistently enough for people to think that there is probably some common process, i.e. a disease, or maybe two, behind the pattern. So having blue eyes and long fingers is not a syndrome but hyper dense bones and short big toes is (known as osteopetrosis, due to a single gene mutation).
     
  12. lansbergen

    lansbergen Senior Member (Voting Rights)

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    I can live with that
     
  13. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Jonathan Edwards

    I agree with your points about lack of knowledge about this illness, possibly many sub groups, and questions re shared causal process, however,
    despite, the term "syndrome" being accepted, and understood differently in the medical profession, I don't think this label does the ME community any favours when used in non-medical quarters, e.g. with the public, and the press.

    The word "syndrome" has negative connotations in other areas of life, e.g. when the media reports on actions of certain groups of people. People label many negative behaviours syndromes.

    I think this term has little respect from the public when applied to almost anything. If we stick with "syndrome", we're adding to our advocacy battle.

    "Syndrome" defined in the Pocket Oxford English Dictionary: " 1 a group of symptoms which consistently occur together: 2 a combination of opinions, emotions, or behaviour that is typical of a particular group of people."

    ETA: The word "syndrome" tends to be used in a pejorative sense.


    On a lighter note:

    I don't know what acronyms we can come up with, but if we used Myalgic Encephalomyelitis Syndrome or MES, that wouldn't be very good either.
     
    Last edited: May 1, 2019
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  14. NelliePledge

    NelliePledge Moderator Staff Member

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    Seems MEAssociation in U.K. use disease as well they have these posters with peoples pictures and quotes https://www.meassociation.org.uk/about/real-people-real-disease/real-me/ under the slogan
    Real people. Real disease. Real ME. Which in my opinion is a big improvement on their main slogan it’s real it’s physical it’s ME. I reckon they should ditch the latter and go with the new one.
     
  15. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    I noticed that Ron Davis refers to ME/CFS as a disease.
     
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  16. Annamaria

    Annamaria Senior Member (Voting Rights)

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  17. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    A lot of researchers do. This is from a quick search of abstracts on pubmed.

    Nacul et al. https://www.ncbi.nlm.nih.gov/pubmed/30974900

    Fluge et al. https://www.ncbi.nlm.nih.gov/pubmed/30934066

    Kerr. https://www.ncbi.nlm.nih.gov/pubmed/30918887

    Chu & Montoya: https://www.ncbi.nlm.nih.gov/pubmed/30805319

    Baraniuk: https://www.ncbi.nlm.nih.gov/pubmed/30666170

    Friedman https://www.ncbi.nlm.nih.gov/pubmed/30222036

    Lipkin: https://www.ncbi.nlm.nih.gov/pubmed/29968805

    Scheinbogen & EUROMENE: https://www.ncbi.nlm.nih.gov/pubmed/28747192

    Rowe & Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer https://www.ncbi.nlm.nih.gov/pubmed/28674681

    Jason et al. https://www.ncbi.nlm.nih.gov/pubmed/9461755

    Naviaux: https://www.pnas.org/content/pnas/113/37/E5472.full.pdf
     
    Last edited: May 1, 2019
  18. aza

    aza Established Member (Voting Rights)

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  19. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Most ME/CFS patients have a disease but this is not the same as CFS being a disease...
     
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  20. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am not sure that site is particularly well informed. It obviously assumes that CFS is a syndrome since it uses CFS as an example of syndrome. It also says that a syndrome can be a condition or several diseases... It doesn't fit very well with the usage I know and doesn't seem to explain why the terms are the way they are.

    A lot of syndromes are called that at a stage when there is no known cause - probably virtually all of them. A lot now have known causes and they are only still called syndromes because nobody has bothered to change the name. Down's syndrome is probably called trisomy whatever at genetics meetings but most people still think of the family up the road having a Down's syndrome daughter.

    I think 'condition' can be used to mean more or less whatever you like - a bit like illness.
     

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