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Is it worth explaining the difference between ME and CFS to the public??

Discussion in 'Action Alerts and Advocacy' started by Tulip, Apr 9, 2011.

  1. WillowJ

    WillowJ Senior Member

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    All people with ME/CFS have CNS dysfunction, yes. That's not necessarily the same as MRI lesions or constant SPECT-viewable damage. There could be a test for it which hasn't been well-utilized yet.

    When I read the Ramsay descriptions, it looks remarkably like the CCC. I'm surprised you don't see the same remarkable similarity.

    Remember, we are not talking about Fukuda as written, or Oxford here. We all agree those are junk that don't define anything nor select any particular disease, especially Oxford and "Empirical". When we talk about "CFS" being the same as ME, we're talking the disease under the sloppy Holmes and Fukuda attempts--the disease Klimas studies with her modifications to Fukuda requiring PEM, the disease Mikovits studies with CCC: distinguished by PEM, cognitive dysfunction, low NK cell function, and oxidative stress.
     
  2. WillowJ

    WillowJ Senior Member

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    have you ever thought that perhaps people not fortunate enough to have proper investigations and a diagnosis of ME (or those who have "real CFS", not CF, but not hfme-approved ME, either), might find it offensive and hurtful to be told that they cannot join the exclusive ME club but instead actually must use the degrading term--the slave name--of CFS, in order to not be on the side of the evil oppressors?

    please stop and consider this for a while.

    ... I'll give you a few minutes to do that...


    ...

    ...

    ...


    ...


    ...


    who is the enemy here? who is the bad guy?



    ...


    the bad guys are the evil Wessely school, the complacent and sometimes complicit government officials, the lazy and sometimes complicit media. not other patents.

    please let's fight the real bad guys and not other patients.

    let's fight the real bad guys because we can do this, but only if we're not fighting each other. the prize is returning to the use of actual biomarkers, getting everyone a sensible and respected diagnosis of whatever disease they really have (ME, thyroid problems, MDD, vitamin D deficiency, Lupus, cancer, rare diseases, whatever they have that's causing fatigue that isn't being investigated or treated now), and getting our disease funded and studied. we can get there, together.
     
  3. SOC

    SOC Senior Member

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    Good luck, WillowJ. I've tried that argument to no avail, but you're better with the references, so maybe you'll have more success. :)

    Now that I see Ramsey suggested that any of a number of infections could cause ME, I'm again confused about why CCC-defined ME is not considered "real ME" by these folks. And here I thought I'd finally figured it out. Sigh.......
     
  4. WillowJ

    WillowJ Senior Member

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    Thanks, SOC.

    your post #39 was good. :)

    I couldn't figure out what PER stands for, though.

    I hope it works because I really think we're on the side of reason and science. There's definitely some support for dividing ME up into subgroups (or different diseases, but the difference between the diseases vs. subgroups is really semantics), but to say it's ME on the one hand and CFS on the other is over the top, IMO. The set of people defined by PEM, cognitive/neurological dysfunction, low NK cell function, and oxidative stress, have clearly-related conditions in any case.

    Even Dr. Hyde, although he has other preferences himself, won't speak against the Canadian criteria because, as he says, the scientists who developed that document are leaders in the field and have the most experience.
     
  5. WillowJ

    WillowJ Senior Member

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    oh, I figured it out: post-exertional relapse (more accurate than "malaise")
     
  6. Tulip

    Tulip Guest

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    No willow, not all people with CFS have CNS dysfunction. Yes there are people diagnosed with CFS who actually have M.E., but then there are people with "CFS" who have short lived post viral syndrome, idiopathic fatigue, poor lifestyles, over training syndrome, depression etc etc. These people do not have CNS dysfunction and should not be told they do.

    It isn't hard for an M.E. specialist and even a patient to work out that they have true M.E. rather than post viral syndrome or something else, M.E. is a unique entity with unique symptoms and seriously messes with your brain. I don't know why you keep going on about how it is not fair that people with M.E./CFS who haven't had spect scans are being excluded, it is completely ridiculous and not true. Before 1988 specialists and doctors managed to diagnose true M.E. without those specialised tests and they still can today. It's simply common sense!. And who on earth ever said the Jodi Bassett is an expert on this??? She has even said she isn't, she is a patient expressing her views.

    Seriously this isn't kindergarten, if people don't actually fit the criteria for M.E. or the CCC CFS, then they need to be mature enough to accept that and not sulk. This is exactly what has caused us to stay in the same place we have since 1988 and has caused muddled research findings.
     
  7. WillowJ

    WillowJ Senior Member

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    well, I just got through defining CFS, for the purposes of this thread, as CCC CFS, or Fukuda-CFS-with-PEM, which is basically the same (however, hfme rejects CCC as valid--did you miss that earlier on the thread?)

    I am not talking about Oxford-"CFS" or people who have completely different conditions such as "short lived post viral syndrome, idiopathic fatigue, poor lifestyles, over training syndrome, depression etc etc.". I have stated numerous times that including these people is crazy nonsense misdiagnosis. we all agree on that--that is not the issue at hand on this thread, and bringing it up now is a red herring.

    @ your red herring: not all people with the label CFS have CNS dysfunction, but all people who actually have ME/CFS do.

    not all of these people, however, who actually have ME/CFS, meet the specific hfme-approved particular ways of measuring CNS damage and have enterovirus as the infection (again required by hfme).

    on the diagnostics thread, there are some people arguing that you have to have a positive SPECT in order to properly have ME. The hfme contention is that you have to have an abnormal SPECT or an abnormal MRI (or maybe an abnormal neuropsych evaluation, but that one is iffy) in order to properly have ME.

    (I never once mentioned Jodi, BTW; hfme cites Dr. Hyde as the expert... while it's possible she may misinterpret him sometimes, I know she's a patient and not setting herself up as an expert)

    please try to understand what I'm talking about!
     
  8. SOC

    SOC Senior Member

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    Did you read what WillowJ and I wrote before you answered, Tulip? CCC-defined ME/CFS and the ME you are claiming appear to be the same thing. In what way are they not?

    Where did Jodi Basset come into this?
     
  9. floydguy

    floydguy Senior Member

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    Even I thought this was a bit harsh and I am accustomed to hard core politics boards. No, the problem isn't so much getting diagnosed with X, it's the way research cohorts are defined. I've posted many times on how there must be objective measures for research but I don't think it's necessary at this point to change the clinical definition. Don't blame other patients for this debacle! They could have a CFS label with something treatable!!
     
  10. WillowJ

    WillowJ Senior Member

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    substantial edits made to my post #47
     
  11. Tulip

    Tulip Guest

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    You mentioned HFME - which is Jodi - it is HER personal opinion that the CCC is not real M.E., not the consensus of the M.E./CFS community. "But" the problem is CCC also covers post viral syndrome and that is what people are annoyed at. That's when we hear of the miracle recoveries, which were always going to happen.. The CCC should have included more of the common M.E. symptoms and that would have eliminated PVS.
     
  12. WillowJ

    WillowJ Senior Member

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    now we are getting somewhere. I would love to eliminate the non-permanent post-viral diseases. (they make 10% or less, though, which is not real significant and while it does cause some anecdotal problems, those would continue to exist with "chronic fatigue" which is regularly confused with ME anyway and there is no way to undo the malicious history.... so really it isn't a super serious problem of the part we could fix today... but all the same it would be nice to exclude the self-resolving conditions from research)

    also, as before, I recognize that Jodi is a well-meaning patient.

    thanks for the admission that "CCC is not ME" is not a representative position, and comes from a patient. I think that's an important point to make, especially to persons who have questions about the meaning of all this, like TheMoonIsBlue.

    what specific symptoms, please?
     
  13. SOC

    SOC Senior Member

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    That was me, not WillowJ.

    I have been told more than once that CCC is not ME. None of them have bothered to explain why or how CCC is not ME, so I'm still confused about what their point is, exactly.

    And how do you define PVS so that it is not included in ME/CFS? What symptoms, specifically, would have eliminated PVS?
     
  14. insearchof

    insearchof Senior Member

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    Hi SOC

    To be clear, the distinction between ME CFS and PVFS is not, as far as I know HFME - it is my own - based on my own reading and research.


    I am afraid that if that is in fact the MESA position - that they have highlighted that as the defining feature of ME, then it is unfortunately wrong.

    It is not consistent with the literature.

    I would suggest that the MESA have made it their defining feature, but for medical classification and diagnostic purposes this is not the defining feature of ME. It is only a part of the illness. I suggest the reason they have erroneously elevated this to the defining feature of ME, is to incorporate persons who might have an ME or PVFS like illness without clear evidence of CNS dysfunction ie think CCC.
     
  15. insearchof

    insearchof Senior Member

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    Hi Willow




    Thank you Willow. I am well aware of that, but unfortunately that is not the evidence I am looking for. That is why I subsequently posted this:

     
  16. WillowJ

    WillowJ Senior Member

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    that's true! but many people who actually have ME, are diagnosed with CFS. There has not even been an ICD code for diagnosing ME in the USA for a number of years--you cannot legally be diagnosed with ME here, it just has not been possible (as we are adopting ICD-10-CM it will again be theoretically possible, but doctors still won't know how to do it).

    again, the bad case descriptions are bad case descriptions. we have other case descriptions and codes for mono and chronic mono and all the other things that get mis-classified as ME/CFS.

    the thing the CDC was supposed to be investigating, the thing NIH is supposed to be funding, under the name of CFS, is ME. The thing that we have (we who have PEM/PER, neurological dysfunction, low NK cell function, abnormally high and strong oxidative stress) is ME, even though it's falsely called CFS. (there are other people misdiagnosed with CFS but, again, that's beside the point of this particular discussion)

    but a bad case definition, does not a new disease make. there is no such thing as a-disease-or-syndrome-of-CFS-that-isn't-ME. (remember, the misdiagnoses are not a syndrome, because a syndrome collects people who have one unique profile--a hodgepodge based on one or a few vague symptoms is not a syndrome).

    the only possible way you & ISO can argue there are some that don't have ME, is to restrict ME to enterovirus only, but you still can't stick the others with a CFS label. they don't have mono which will eventually resolve by itself or, low vitamin D, or any other not-related-to-ME disease. it would be ME-like disease from some other infection, not CFS.
     
  17. WillowJ

    WillowJ Senior Member

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    In what way is it inconsistent? what literature? Please provide citations and quotations. Thanks.
     
  18. insearchof

    insearchof Senior Member

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    Willow quoted:

    Of course, this is one of the elements required for a diagnosis. Not in issue. It is not however, the key distinguishing crtierion of ME, but it is an important diagnostic element. However to elevate it as the key diagnostic criteria denotes a failure to appreciate the contextual setting within which ME lies in general medicine.
     
  19. insearchof

    insearchof Senior Member

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    I am not here to educate you Willow, but I do suggest you read more widely. Why not start by buying Hydes text with over 750 pages on the subject matter? I dont know that I really want to go through that and my own private papers and compile an article on how that is so. I might consider doing such in my own time and submitting to HFME though.

    Anyhow, I'm still on page 4 of this thread - attempting to answer matters sequentially. I will see how I am faring when I get back to this point and energy depending, I might provide a brief summary.

    But perhaps you could address my post #55, which I note you have skipped twice now?
     
  20. WillowJ

    WillowJ Senior Member

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    Do you have a specific reason for rejecting Hyde and other experts' opinions (by Hyde's report) that these people had ME?


    As far as I know, Cheney and Peterson did not know what it was or what the infectious agent was (that's why the called the CDC, to identify the infectious agent) but they never believed it to be mono/EBV.

    I have no knowledge of what communications they may have had with CDC, and I do not have a copy of Osler's Web to see whether this information might be published there. That would be the main means I might have, of having information directed to some other person besides myself.

    What I do know, is that I have generally read that physicians familiar with ME and ME/CFS, including some whom Dr. Hyde considers to be experts on ME, generally consider that the outbreaks leading to the name of CFS and the prior ones considered epidemic neuromyasthenia, were most likely, or were indeed, outbreaks of myalgic encephalomyelitis. I have given you one example and you rejected that without explanation.

    You now seem to indicate the thing that will satisfy you, is if Cheney and Peterson, had, at the time of the Incline Village outbreak, a knowledge of ME that they probably did not then have, and on the basis of information they probably did not then know, wrote to the government asking them to acknowledge that the outbreak was ME. This is an impossible criteria.

    Maybe you would like me to mention that, by 1992, they were describing MRI abnormalities and low NK cell function in their patients (actually NK cell function came in 1987)? http://www.ncbi.nlm.nih.gov/pubmed/1309285
     

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