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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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ME - Syndrome or Disease?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by nanonug, May 6, 2012.

  1. xchocoholic

    xchocoholic Senior Member

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    Thanks. Didn't I see that our govt is moving to make a diagnosis of cfs / me ? quicker so they can hopefully catch the pathogen ?

    Isn't it odd that we patients know this stuff better than the medical community ? I'm really tired of hearing that I should feel sorry for them because they're overworked. These "geniuses" need to get a grip. Lol ..

    Tc .. X
     
  2. Ember

    Ember Senior Member

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    Here's Gordon Broderick's suggestion: "Unfortunately, the name CFS and its hybrids ME/CFS and CFS/ME have been used to refer to both ME and general chronic fatigue. The best way to end the resulting confusion is to only use the name ME for those who meet the more restrictive ICC criteria for this very serious disease, which is consistent with the WHO ICD neurological classification" (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full).
     
  3. hixxy

    hixxy Woof woof

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    The is the most horribly formatted and paragraphed criteria I've ever seen.

    My disease addled brain can't compute those huge blobs of characters.
     
  4. nanonug

    nanonug Senior Member

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    No idea! The problem with these neurological syndromes is that one never knows what the root cause is.
     
  5. hixxy

    hixxy Woof woof

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    Same goes for a lot of health problems. once susceptible almost always susceptible.
     
  6. SOC

    SOC Senior Member

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    The ICC criteria work for me as a definition of ME. Does that leave anyone who fits Fukuda but not ICC as CFS patients? As currently written, people who meet the ICC criteria also fit Fukuda. Does that make ME a subset of CFS? Logically, I suppose so, but I don't think that's correct medically/scientifically. It's still a big freakin' mess. Until the CDC gets itself together about ME/CFS and rewrites it's definitions so that either CFS no longer exists, or Fukuda (or whatever they use as an official definition of CFS) excludes ME, it is impossible (in the US) to distinguish -- officially, that is.

    Are there any patient groups that don't agree with using the ICC criteria for our illness? Are there any patients who feel strongly that they have the illness we are discussing who don't meet the ICC criteria? In other words, who are we leaving behind as CFS patients?

    Let's hope the powers that be get it together sufficiently to get the ICC criteria accepted in the US.
     
  7. Mark

    Mark Acting CEO

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    Actually, a consideration of the variations within multiple sclerosis may well be informative when considering the issues around diverse forms of ME/CFS and whether the subsets belong together or not. Four main subtypes of MS have been classified: relapsing remitting, secondary progressive, primary progressive, and progressive relapsing. The graphs under Classification here demonstrate the difference in disease progression:
    http://en.wikipedia.org/wiki/Multiple_sclerosis

    There is no dispute, on the wiki page at least, that "MS is a disease", and the recognition of MS is based on the unifying feature of damage to the myelin sheaths around the axons of the brain and spinal cord. But despite that unifying diagnostic feature, there is a considerable difference between the primary progressive form (which a friend of mine has) and the other forms. For primary progressive MS, there is still no treatment (just a vaguely promising small-scale trial with LDN) and the prognosis is really quite grim. For the other forms, there are a variety of new and emerging treatments, and the variation in response is such that it seems quite believable that some people with some forms of MS may be able to treat themselves successfully with dietary solutions.

    When I think of the situation of my friend with primary progressive MS, looking at people recommending diets to cure other forms of MS, I am reminded of the situation of people with severe ME hearing about treatments that help some people with ME/CFS. It's understandable that such people would want to make a clear distinction between their own disease and that of people with a different form, but equally the example of MS does illustrate that a single disease can also have subtypes, with different disease progressions.

    As I suggested before, the classification game is always somewhat artificial and depends on the current state of knowledge. The four types of MS might in future be recognised as more distinct conditions, with four different causes, which happen to share a common symptom. Maybe when we know more, they won't really "belong together" in the same way as they do now. ME/CFS might conceivably be divided into the same four sub-types, based on the same understanding of the interaction of genetic, autoimmune and environmental factors, and we might in future come to realise that the subtypes of MS and ME/CFS really have more in common with each other, and with subtypes of other diseases, than the family resemblances within MS and within ME/CFS - and then the whole classification system could be rewritten completely. Or more straightforwardly, it's very likely that at least some ME patients have a disease that is more properly considered as a type of MS...and possibly most ME/CFS patients belong in the same broad family of illnesses as MS. Until we understand all these diseases much better, we really can't know how the classification should work.

    That's why I don't think it's a good idea to hold hard and fast to any assumptions about the appropriate classification system for ME/CFS; CCC ME may well turn out to have further subtypes, and those may belong in the same family with much of non-CCC 'ME/CFS', there may be a family of related conditions or there may be multiple completely unrelated conditions within the definition (and the broader the definition, the more likely this is to be true). And we may classify all this quite logically now, and then in 50 years time when the diseases are all thoroughly understood, those classifications might again seem old-fashioned. For now, it's all just vague guesses really, though I do believe we should take ICC ME as the starting point for research, not least because that is the definition most likely to deliver a well-defined cohort with a single disease, and thus the most likely to lead to an understanding that might illuminate the whole field.
     
    Wonko and SOC like this.
  8. Ember

    Ember Senior Member

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    Dr. Bruce Carruthers, co-editor of the ICC, has called ME a form of CFS.
     
  9. hixxy

    hixxy Woof woof

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    I find the way that those who may not fit the ME criteria are referred to or belittled as less sick or less disabled or as though they don't belong on these forums to be quite insulting for those people. To tell you the truth, I'm not 100% certain where I fall in the categorisation, but I suspect, that I am far more disabled by CFS/ME or whatever it is than a lot of people here.

    After all, the heading at the top of this forum does include CFS. There are many people who may not completely fit the ME ICC criteria, who are more disabled by their disease. Just as there are people who do fit the ME ICC criteria who are more disabled then others who don't.

    Even if these do turn out to be 2 or more distinct diseases. ALL of them deserve equal support and research.

    If you read Humming Bird Foundations listed of apparent world wide experts on ME, you will not see any of the names of the "celebrity" doctors that a lot of people on these forums see.

    Apparently these doctors are CFS doctors?

    It's almost as though some PWCs get up on their high horse when comparing symptoms. It's very annoying to see. Especially when they dismiss other's level of disability or suffering.
     
  10. Ember

    Ember Senior Member

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    The ICC authors agree with you:

     
  11. SOC

    SOC Senior Member

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    It's getting late here and I'm starting to suffer from brain fade, so bear with me....

    A clinical definition and a research definition are two different things. A research definition is by definition designed for research and is therefore more restrictive than a clinical definition which is used for diagnosis and treatment. Isn't the ICC a research definition, so it isn't necessarily good for diagnosing patients because it is more restrictive than one wants for clinical diagnosis? Wasn't there some talk of creating a clinical definition based on the ICC?
     
  12. Ember

    Ember Senior Member

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    The ICC does both, SOC. Here's the relevant quotation: "It is important to note that the current emphasis must primarily remain a clinical assessment, with selection of research subjects coming later. For this reason, the panel is developing Physicians Guidelines, which will include diagnostic protocol based on the International Consensus Criteria and treatment guidelines that reflect current knowledge."

    Patients not included in an ME diagnosis would be diagnosed instead using Fukuda for CFS (or the CCC for ME/CFS).

    Edit: I should have added the NICE criteria for CFS/ME. The ICC does specify that individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.
     
  13. hixxy

    hixxy Woof woof

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    The unfortunate thing is, that there are people who are far more neurologically affected by the disease than the Fukuda criteria specifies, but then don't quite meet the criteria of the ICC either.

    What you're saying by using just 2 criteria for diagnosis and research is that there are only 2 groups of patients, when in fact I'm certain there are far more.
     
  14. hixxy

    hixxy Woof woof

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    Have there been any online surveys done of the ICC guidelines by patients? I know this isn't accurate, but would be interesting anyway.
     
  15. Enid

    Enid Senior Member

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    I heard (Docs in the family) that syndrome is a classification of symptoms when the underlying mechanism is not yet understood. Triggers may differ but the essential aetiology (origin) producing common symptoms not yet fully known.
     
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  16. hixxy

    hixxy Woof woof

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    This is what I've thought as well. It's obvious when you look at a lot of illnesses that the medical community doesn't known when to call an illness a syndrome or disease either. Seems to be a complex subject.
     
    merylg and Enid like this.
  17. mellster

    mellster Marco

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    xchoco, I think most people here have gone to the doctors over and over again in case they missed something or they can find other ways to treat this, but come back with the CFS diagnosis. So IMO it is equally beneficial to spend a lot of time on this forum and exchange possible causes and treatments than going to the doctor. Truth is nobody knows in which category they fall and I have read now from many who transitioned freely through those categories that are supposedly so distinct.
     
  18. Enid

    Enid Senior Member

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    Appreciate your rant xchoc - had many of my own for the ignorance met through this illness. And there isn't any symptom described on PR I've not had too. So all ME then - anything else a question of degree or predominance of particular symptom(s) at any given time.
     
  19. nanonug

    nanonug Senior Member

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    Exactly! That is my understanding as well.
     
  20. lansbergen

    lansbergen Senior Member

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    I know that definition for more then 40 years but that does not make it less a disease.

    The WHO does it right. Headcategory disease. Disorder subcategory of diseases.

    G93.3
    Postviral fatigue syndrome
    Incl.: Benign myalgic encephalomyelitis


    http://apps.who.int/classifications/icd10/browse/2010/en#/G90-G99
     

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