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Australia: MindFood: Misdiagnosing ME

Discussion in 'General ME/CFS News' started by Firestormm, Jul 23, 2012.

  1. Firestormm

    Firestormm Senior Member

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    MindFood: 16 July 2012: http://www.mindfood.com/at-health-wellbeing-misdiagnosing-me.seo

    Misdiagnosing ME

    Myalgic encephalomyelitis is often lumped with chronic-fatigue syndrome; 
however, medical specialists and frustrated sufferers worldwide are campaigning to diagnose and treat the disease independently.

    At 21, Josie Eldred Downes has been ill with myalgic encephalomyelitis (ME) for eight years. Throughout that time, the illness has devastated her young body: Every day, she contends with symptoms such as nausea, pain, headaches, and severe exhaustion, so that she spends most days in bed. Even taking a shower is a major effort. Yet the medical establishment has struggled to successfully diagnose or treat her.

    Diagnosis

    ME has become linked with chronic-fatigue syndrome (CFS) as though it were the same illness. For example, the Canadian Consensus Document defines ME/CFS using a certain set of criteria, which, according to Penny Abrahams, chief-executive officer of ME/CFS Australia, are the best protocols available for definition. Abrahams explains that an international team of ME/CFS practitioners and researchers with the combined experience of treating more than 20,000 people with ME/CFS drew up the consensus.

    However, according to Dr Byron Hyde, author and founder of the Canadian-based Nightingale Research Foundation, a charitable organisation dedicated to the study and treatment of ME and CFS, ME should be diagnosed distinct from CFS.

    “ME/CFS is a convenient term. It should read ME and CFS,” says Hyde. “CFS has become a garbage-bag diagnosis for too many doctors.”

    In his book Missed Diagnoses: Myalgic Encephalomyelitis & Chronic Fatigue Syndrome, Hyde defines ME distinct from CFS based on his own clinical experience. He points out that ME is a disease (as recognised by World Health Organization), while CFS is not. Hyde also explains the specific tools necessary to diagnose the disease; however, he asserts that ME is far from a simple diagnosis.

    Nightingale defines ME as a clearly defined disease process and documents its features and testable criteria. Hyde explains that it begins as an infectious-disease state that affects the central nervous system. As a result, patients experience brain dysfunction, such as severe headaches, major sleep problems, and muscle weakness. There are also hormonal issues and concerns with the heart, whereby this vital organ is unable to increase or decrease in speed and pump volume in response to an increase or decrease in physical activity. However, says Hyde, “fatigue was never a major diagnostic criterion of ME … Fatigue and loss of stamina are simply indications that there is something wrong.”

    Jodi Bassett, founder of the patient-advocacy group The Hummingbirds’ Foundation for ME (HFME), writes on the organisation’s website: “Despite the existence of the tests for ME … the unfortunate reality is that many people who suspect they have ME do not have access to the appropriate tests or to doctors who are able to make a diagnosis.”

    CFS: An Umbrella Term

    Currently, Eldred Downes sees Dr Richard Schloeffel, who specialises in CFS and has had great success in the diagnosis and treatment of many of his patients, with 50 per cent able to make a full recovery, he says. However, he views Eldred Downes as one of his “20 per centers” – he has been able to help relieve her symptoms but has been unable to find a cause for her illness.

    Schloeffel views CFS as an umbrella term, which includes a number of disease categories. He also asserts that it’s Chronic Fatigue Immune Dysfunction Disorder in America, it’s ME in England, and it’s CFS in Australia. “It’s all the same thing,” he says.

    Bassett disagrees. In her book, Caring For The ME Patient, she writes: “Just as you can’t research diabetes by looking at groups of patients that have broken legs, the flu, rashes, and headaches, you can’t research ME by using vague ‘CFS’ patient groups that may or may not happen to contain a small percentage of actual ME patients.”

    Bassett believes that the medical community should stop using the CFS label altogether. “The bogus disease category of ‘CFS’ must be abandoned completely, along with all the other similarly vague, misleading, and unhelpful umbrella terms, such as ‘ME/CFS,’ ‘CFS/ME,’ ‘ME-CFS,’ ‘CFIDS,’ ‘Myalgic Encephalopathy,’ and others.” She goes on to explain that it has nothing to do with her wanting a fancier or scarier-sounding name for mere fatigue. “It is about a severe neurological disease being covered up by a fictional and vague ‘fatigue syndrome,’ ” she writes.

    ME And CFS: Not The Same Thing

    The issue is twofold: A diagnosis of ME/CFS doesn’t validate ME as a distinct disease, as Hyde suggests it should be, and a diagnosis of ME/CFS doesn’t mean that a patient has ME. That is, CFS and ME are not the same thing; the names are not synonymous. “The definitions of each are quite distinct,” says Bassett. “It’s not just about names. It’s about definitions being wrongly mixed up and misused.”

    There have been suggestions to change the name CFS to ME. “This does not seem to me to be a useful initiative,” Hyde writes in Nightingale’s documents defining ME. “It would simply add credence to the mistaken assumption that ME and CFS represent the same disease processes. They do not.”

    Finding The Right Treatment

    Eldred Downes feels the treatment advice she received when she first became ill made things worse (read her story at right). Her health practitioners recommended that she keep to her routine, do physiotherapy, and focus only on the positives in her life – not on her symptoms.

    Indeed, one of the treatment protocols for people with CFS is graded exercise (physical activity that starts very slowly and gradually increases over time) and cognitive-behaviour therapy (CBT), but you use these only when patients are in recovery, says Schloeffel.

    Bassett believes that a graded-exercise program is probably the single-most inappropriate treatment that a doctor could recommend to an ME sufferer.

    “Exercise or exertion intolerance is one of the many things that separates ME … from various postviral fatigue states or other illnesses involving ‘chronic fatigue,’ ” she writes on the HFME website.

    She also references a paper written by Dr Melvin Ramsay, an ME researcher and advocate. Ramsay writes, “Those patients who are given a period of enforced rest from the onset [of ME] have the best prognosis.”

    According to Schloeffel, the problem is that “we are all writing different protocols, and we’re not getting around the round table enough to establish definitions.”

    Bassett, on the other hand, feels that the facts and definitions for ME already exist and that they simply need to be listened to and not ignored.

    The HFME website, which recognises ME as a distinct disease and not synonymous with CFS, lists numerous articles and research on ME. The evidence seems overwhelming. Why, then, aren’t people listening?

    Living with ME: Josie Eldred Downes, 21
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  2. Enid

    Enid Senior Member

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    Good article - thanks Firestormm.
  3. justy

    justy Senior Member

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    Thanks Firestormm for posting this - it adds to the discussion on definitions in a way that is easy to understand. My one concern is that as CFS is used so often, many PWME are not captured as having M.E - it's all a terrible mess.

    I would think the way to go forward would be for all GP's etc to use the Canadian criteria and the newer ICC for diagnosing and for research. Then i suppose everyone would have to be re- diagnosed. The problem is it's hard enough getting any kind of diagnosis, especially in the UK - took me 17 years and its still not completely 'official' I consider myself to have M.E - because i meet the criteria, but my neighbour believes she has CFS, because that is what her doctor calls it. I can plainly see we have the same illness - but yet she didnt understand that they could be interchangeable terms depending on the politics of the situation.

    Justy
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  4. Ember

    Ember Senior Member

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    This is no disagreement here. The authors of the CCC and ICC would agree with Dr. Hyde that "ME should be diagnosed distinct from CFS."

    ME/CFS (CCC) has always been an ME diagnosis, never a CFS diagnosis. As Marj van de Sande explained to Cort, the term 'ME/CFS' was used only for the purpose of patient recognition in the US:
    Dr. Carruthers, lead author of the CCC and ICC, explains that the CCC separates ME from CFS: “The results of Jason et al’s studies have confirmed that the Canadian Definition of ME/CFS had clearly separated cases who have ME...from those who have CFS....” He emphasizes this separation, calling it urgent:
    As for the name, the ICC panel advises us not to use the hybrids “ME/CFS' and 'CFS/ME:'
    The disagreement is with the NICE Guidelines, which followed the CMO 2002 recommendation “that the composite term CFS/ME is used and that it is considered as one condition or a spectrum of disease.” The ICC states that patients with ME “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”

    So Dr. Bassett is right when she says that CFS and ME are not the same thing; the names are not synonymous: “The definitions of each are quite distinct.... It’s not just about names. It’s about definitions being wrongly mixed up and misused.”
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  5. Snow Leopard

    Snow Leopard Senior Member

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    ME is a subset of CFS. Chronic fatigue associated with RA, post-cancer etc are all subsets of CFS.
  6. Firestormm

    Firestormm Senior Member

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    Hi,

    You know back in the day when the ICCME were published? Did we ever get to the bottom of whether the authors meant to replace 'CFS' with 'ME' or for it to be a sub-category? I admit to having lost the plot, but this article doesn't gel with me I am afraid, and I'm sure the main author of ICC (can't at this moment recall his name) was also an author of CCC ME/CFS, and he had commented to the effect that 'ME' was indeed meant to be a replacement i.e. a preferred and the correct term. Ah balls. I suppose I'd better try and back all that up :eek: Not again...

    Still waiting for the physicians guide I think re: ICC. And to my knowledge nobody has determined (is these are indeed now being deemed as separate) how existing patients with a written diagnosis of 'CFS/ME' 'ME/CFS' or 'CFS' will be 're-evaluated'.

    And without wishing to unearth all the 'debate' this topic inevitably results in - I suspect for 'most' people out there, their physician/doctor simply records one of the acronyms as a diagnosis believing 'they are all the same thing' which is after all the official stance - at least over 'ere in the good old UK.

    Long way to go (perhaps it will never get there) to re-label 'a' illness let alone convince physicians to do the time-warp, and that not only do we have a distinct disease (we know how hard that has been) but within said disease - or separate to it - exists another essentially the same....maybe. Especially without any objective testing.

    Sorry to be 'Dan the Downer' but I read this article as rather fantastical thinking. I am rather amazed that after all this time Hyde hasn't come up with a 'test' or properly explained the aetiology/epidemiology of the condition.

    Edit:

    And if they do come up with a 'test' who's to say you or I don't pass the damn thing? And chances are they will never be a single 'test' for this (or either) disease. Nope. Chances are you'll have (I don't know) one for muscles, one for mitochondria, one for depression-linked inflammation etc. etc. And we assume I think that a 'test' will mean a 'pill'...

    End of Edit!

    What I think has happened is that the names have become kerfuddled - for several reasons you all are probably aware of and not all of them are incredulous - but that at the end of the day and in the absence of objective testing (which is not necessarily a positive development either - depending on the form these tests take) WE ARE TALKING ABOUT THE SAME THING :)
  7. Ember

    Ember Senior Member

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    Yes, we got to the bottom of it. The authors describe ME is a separate subset of CFS. You can read Dr. Broderick's “Response to 'A controversial consensus'; By the International Consensus Panel,” published on December 30, 2011 (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full) and Dr. Carruthers' “The New International Consensus Criteria for M.E.- content and context” published by the Journal of IiME in early June, 2012.

    Dr. Carruthers' article includes the text of his presentation at last September's conference (http://investinme.org/Documents/Journals/Journal of IiME Vol 6 Issue 1 Screen.pdf).
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  8. peggy-sue

    peggy-sue

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    Can I take it that this use of the word "subset", refers to the fact that there are loads of conditions which give rise to CFS symptoms and ME is just one of them?
    So cancer treatment would be a subset, thyroid problems would be a subset, diabetes would be a subset, anorexia would be a subset, etc.
  9. Ember

    Ember Senior Member

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    Dr. Carruthers describes some CFS subsets here (emphasis mine):
  10. peggy-sue

    peggy-sue

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    I did think it was all quite clear - but now I'm completely confused.
    What on earth are "which includes the minority of the specific natural kinds we are calling ME plus a majority of fatigue kinds that are secondary to other diseases" ?

    ME is ME.
    CFS is a syndrome (a set of symptoms) which can have many causes.

    What on earth are "which includes the minority of the specific natural kinds we are calling ME plus a majority of fatigue kinds that are secondary to other diseases" ?
  11. Ember

    Ember Senior Member

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    Doesn't Dr. Carruthers' statement support yours? Like him, you suggest that CFS includes ME and a whole lot more, mostly fatigue kinds that are secondary to other diseases. Dr. Carruthers hasn't named other subsets though. Naming them would likely be a matter for future CFS research.

    Also, Dr. Carruthers doesn't state categorically that "ME is ME." The ICC defines ME and invites further research into the disease.
  12. peggy-sue

    peggy-sue

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    It was me who said ME is ME, I suspect I simply can't make sense out of his statement.
    I'm also very suspicious of the notion of subsets. I very much subscribe to Byron Hyde's description of the situation.
  13. Ember

    Ember Senior Member

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    If so, then I think your quarrel should be with the NICE Guidelines and the Coalition 4 ME/CFS, not with the CCC and ICC panels.
  14. peggy-sue

    peggy-sue

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    I'm not quarrelling (except with nice guidelines and the "ME/CFS" conflation). I simply don't understand the use of the word subset (and I still can't make plain english sense out of the statement I quoted).
    It's like taking the symptom of "headache" and calling it a syndrome (with just one symptom, obviously), then calling all the things that can give rise to a headache, from a hangover to a brain tumor, a subset of a headache.
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  15. Ember

    Ember Senior Member

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    But using your headache analogy, isn't it also like saying that a particular subset of patients (with brain tumour, for example) should be removed from the mix because of the apparently distinct pathogenesis and treatment requirements of their disease and because they need to be studied as a separate cohort?

    Part of Dr. Carruthers' argument is that the issues themselves are complex:
  16. peggy-sue

    peggy-sue

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    Well I agree completely that brain tumour should not come under a headache category and is serious enough to merit them being removed from the mix of the headache syndrome; I also think that ME is serious enough to be completely removed from the CFSyndrome bucket.
    If you have ME, you will have "CFS" symptoms.

    CFS is a syndrome, not a disease or illness or any other entity. If somebody has CFS, they've got something-as-yet-undiagnosed causing it.
    There IS no confusion about whether you are talking about one or the other, they are obviously not mutually exclusive and CFS is absolutely not exclusively a "complementary" part of ME.

    I'm really struggling to understand what carruthers is saying at all in those quote boxes. I'm a bit foggy, too many embedded clauses!
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  17. Ember

    Ember Senior Member

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    And in practical terms, that's what the ICC does. It states that patients with ME “should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”

    Although Dr. Carruthers writes that ME and CFS are “complementary parts of a single disease concept,” he also goes beyond concepts to affirm that ME exhibits “a pathological causal structure present in the world apart from the mind that is observing it.” Someone who has CFS may, as you suggest, have something-as-yet-undiagnosed causing it. But according to Dr. Carruthers, CFS also includes “parts of the normal homeostatic activity-rest cycle designed by evolution, plus
    fatigue kinds constructed by the re-presentational observing/thinking and thus dualistic model-making mind.” His distinctions leave you free then to argue that “CFS is a syndrome, not a disease or illness or any other entity.”
  18. peggy-sue

    peggy-sue

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    CFS has always just been a syndrome - that's what the S at the end stands for.
    If somebody has ME, they will have several, if not all, of this bucket-list of symptoms.

    There is no "design" involved (a very bad word to use in the context of evolution) and
    "fatigue kinds constructed by the re-presentational observing/thinking and thus dualistic model-making mind." is just a load of meaningless garbage. I certainly don't know what he's saying.
    I do not subscribe to dualism; the "mind" is merely an illusion of consciousness.
    We act via emotions and motivations which are subconscious, then our language centres come along and give us a reasonable explanation for what we've done.
  19. Ember

    Ember Senior Member

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    As far as I can make out, you offer no substantive disagreement with Dr. Carruthers. I'm sorry that you take issue with his use of the word “design” in the context of evolution. I don't imagine that the word was used to offend anyone's theology or lack of theology.

    To say that you don't understand something is quite different from saying that a statement that you don't understand is “just a load of meaningless garbage.” A misunderstanding doesn't need to become a disagreement. In any case, you already seem to know that your not subscribing to dualism is no argument against its being involved when the mind creates constructs.
  20. peggy-sue

    peggy-sue

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    There is no mind. We do not "manipulate symbols" in our heads.
    Where do you get the notion that not subscribing to dualism is no argument against a "mind" being involved in "creating constructs" is something I "get". I can assure you, I do not!
    His reference to constructs such as "re-presentation" show he is subscribing to computer models of the "mind" - linguistics and cognitive psychology - which IS all a load of garbage.
    They are exclusively subserved by the language centres of the brain (which is what they consider to be the important "mind" stuff), leaving out the rest of it.
    I've never had any argument with the criteria he published - I'm just shocked to discover he's not up on science and subscribing to this sort of rubbish.

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