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Next CFSAC meeting date has been announced for November 8, 2011

Discussion in 'Action Alerts and Advocacy' started by Andrew, Sep 30, 2011.

  1. WillowJ

    WillowJ Senior Member

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    Actually, I did not. I do not believe fatigue is an accurate descriptor of any of us. I referred you to a website which specifically and carefully explains this.

    Cheers.
     
  2. Jill McLaughlin

    Jill McLaughlin *****

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    No, actually you did. Provided the quote. Saying something and then sending them to a website to say that what I said is not what I meant isn't effective. Real world would say that if it is not fatigue then why would anyone call it that. So we have come to identify with a misdiagnosis. (Just rename it Stockholm syndrome.) If we have ME and NOT fatigue then call it and diagnosis it as ME, not a fatigue syndrome, which is what this proposal will do away with, which is why ME people are angry.

    So diagnosis is mangled and by combining CFS and ME as if they were the same, the US will adopt the NICE approach. Mixed cohorts and no biomarkers will be the outcome. Precisely what the proposal will do. Or, keep CFS and you will continue to be subjected to the treatments associated with it. What's the one about doing the same thing and expecting different results?

    So, do not allow this to happen. To oppose this proposal, contact: NCHS <nchsicd9CM@cdc.gov>, Donna Pickett <dfp4@cdc.gov> Deadline is Nov 18.
    Patients do not have to enumerate all of the scientific objections, or inaccuracies, just as stakeholders.

    Cheers.

     
  3. medfeb

    medfeb Senior Member

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    WillowJ is correct - there are exactly two options

    1) Go with the current draft of the ICD-10-CM which places CFS under Chronic Fatigue in the Signs and Symptoms chapter.

    2) Move CFS to G93.3 in the Neurological Chapter - the same as is done in the ICD-10 and the ICD-10 clinical modifications used across the world - in fact used everywhere but the U.S.

    As WillowJ says "What we are supporting is the step of being moved to the neurology chapter and being coded G93.3 . The coding is the only thing we can change with the coding committee. The definition and name we need to change elsewhere, with other proposals."

    Some additional points
    • Placing CFS at G93.3 does not prevent doctors from using the ME diagnosis. They will still be able to use ME or PVFS as well. In fact, they could use the term ME today while ME and CFS have different codes. But they don't, at least according to the attendees at the Sept NCHS meeting. The lack of use of the term ME is clearly not related to what code it has and whether it shares a code with CFS.
    • The vast majority of literature uses the term CFS or ME/CFS, not ME. Yes, there are likely some 'CFS' studies that look at chronic fatigue or psychiatric issues but there are many, many, many studies that use the term CFS or ME/CFS and are assessing neuroimmune dysfunction and not general chronic fatigue. Even the recent Rituximab study uses CFS in its title. The disease being studied in this body of literature does not belong under the R codes at Chronic Fatigue.
    • The logic of the statement "the CFS cohort includes some patients that just have chronic fatigue so we need to classify all CFS patients under 'Chronic Fatigue'" is fatally flawed. If anyone said that 'a cohort of cancer patients includes some patients with just fatigue, not cancer and therefore we should classify all cancer patients under fatigue', we would all think it was ridiculous. Its no different here.



     
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  4. Andrew

    Andrew Senior Member

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    Except that is exactly what you are proposing. People stomped their feet about the CFS name for years. It never worked. So they decided to transition the incorrectly named CFS people back to where they belong, by first getting people used to the connection, and eventually phasing out the CFS name. What you proposed is what never worked in the past.
     
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  5. Jill McLaughlin

    Jill McLaughlin *****

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    Mary wrote: "WillowJ is correct - there are exactly two options"

    Actually she is not. Here's why:
    There may be 2 options but the Coalition 4 ME/CFS option is scientifically unsupportable.

    Mary wrote: "1) Go with the current draft of the ICD-10-CM which places CFS under Chronic Fatigue in the Signs and Symptoms chapter.
    2) Move CFS to G93.3 in the Neurological Chapter - the same as is done in the ICD-10 and the ICD-10 clinical modifications used across the world - in fact used everywhere but the U.S".

    Codes match to the definitions. CFS is what it is defined to be. It is a symptom syndrome. You cannot change this by changing codes.

    CFS does not define a neurological illness and there are those with CFS who do NOT have ME, so at least it should be invalid.

    If you wanted to code it as neurological there are plenty of neuro categories available. Wouldn't be accurate but wouldn't have really cared. You can recode or reclassify CFS all you want but not interfere with a discreet neurological illness by throwing it with the vague fatigue mix.


    Mary wrote: "As WillowJ says "What we are supporting is the step of being moved to the neurology chapter and being coded G93.3 . The coding is the only thing we can change with the coding committee. The definition and name we need to change elsewhere, with other proposals."

    This is not a step, it is or it isn't. Like being a little pregnant.

    Definitions change first then it should be coded accordingly. Codes should match the definitions. Seems you have it backwards. It does not work this way.


    Mary wrote: "Some additional points. Placing CFS at G93.3 does not prevent doctors from using the ME diagnosis. They will still be able to use ME or PVFS as well. In fact, they could use the term ME today while ME and CFS have different codes. But they don't, at least according to the attendees at the Sept NCHS meeting. The lack of use of the term ME is clearly not related to what code it has and whether it shares a code with CFS."

    They can use the term ME but will be synonymous with CFS. ME will no longer be an actual diagnosis but combined with CFS.

    Actually they do use ME as a diagnosis. The fact that the, what, dozen or so people on this committee has not seen it is NOT the basis to say it does not exist. And not nearly as many will have ME as the broad inclusive vague diagnosis of CFS, so it's not a #'s game.


    Mary wrote: "The vast majority of literature uses the term CFS or ME/CFS, not ME. Yes, there are likely some 'CFS' studies that look at chronic fatigue or psychiatric issues but there are many, many, many studies that use the term CFS or ME/CFS and are assessing neuroimmune dysfunction and not general chronic fatigue. Even the recent Rituximab study uses CFS in its title.
    The disease being studied in this body of literature does not belong under the R codes at Chronic Fatigue."

    Hmmm. Then apply your own logic. Lots of CFS studies do not include those with ME or any neurological illness so should NOT be coded to ME OR classified under neurology. This is how it works.

    Literature should use the terms correctly for whatever they are describing so this is meaningless. This IS the problem which you are perpetuating rather than solving.


    Mary wrote: "The logic of the statement "the CFS cohort includes some patients that just have chronic fatigue so we need to classify all CFS patients under 'Chronic Fatigue'" is fatally flawed. If anyone said that 'a cohort of cancer patients includes some patients with just fatigue, not cancer and therefore we should classify all cancer patients under fatigue', we would all think it was ridiculous. Its no different here."

    Probably. But yours is just as flawed. Two wrongs do not make a right. (see above)

    Thus we have the right to make the same objection to what you are doing. Even if a cohort of ME patients had fatigue they shouldn't be classified as CFS.

     
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    ok, then all the studies that use Fukuda does not apply to ME, according to some thoughts here. So, WPI study, doesn't apply. It was Fukuda and later researchers said it was Canadian Consensus folks, which are ME/CFS. No ME patients and that study doesn't apply.

    Rituximab study, used CDC criteria patients. So that doesn't apply to ME patients.

    The Light study that shows biological abnormalities from exercise, that was CFS patients. So it doesn't apply to ME patients.

    If this is the way some want it, then I can imagine CFS-diagnosed patients saying, "Don't be hijacking our illness to say our studies apply to your illness. Only studies that use ME criteria patients (before ICC) applies to ME patients." And by the way, how soon do you think the ME-ICC will be used for criteria in research? We all want it to be, but the CCC never took hold either. (See above.)

    Is this really the way ME patients want? For their illness to not benefit at all from the large amount of CFS research showing biological abnormalities? Do they not want to benefit from any of the research in US? And do we really think that these CFS studies are not studying those who fit ME criteria also? If there are two diseases, then CFS research is on CFS patients and ME research is on ME patients. Is this really the case?

    Although I hate the name and the baggage with it, I embrace the research of CFS as done by Klimas, Komaroff, Montoya, Natelson, Mikovits, etc. as applying to my illness, the neuroimmune disease as their research shows. And although ME has a stricter criteria, it also has some bad PR baggage. Both have been corrupted.

    If you think the research of these researchers applies to your illness, then do you want that illness, the one labeled "CFS," the patients they studied, to be in the neurological chapter or the "chronic fatigue unspecified" chapter?

    Tina
     
  7. Sing

    Sing Senior Member

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    Thank you, Willow and Andrew, medfeb and Tina, for explaining well. I can follow you. Jill, I wish I could follow your thinking but I can't. Either it is my brain or the logic you use, but I get lost in how you put things with so much abstraction, vague reference and backwards or negative constructions. Once I could have followed you (I want to!) but now I can't. Would you please write more simply, concretely and clearly for those of us with neurological symptoms (ha ha)?
     
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  8. WillowJ

    WillowJ Senior Member

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    Maybe you thought I intended the "us" and "our community" to include all of Fukuda-CFS and all of Oxford-CFS? This is not what I meant. I meant us--people with neurological disease. Most of whom are diagnosed with CFS, but fit CCC and ICC, or ICC for atypical ME.

    Further than that, I will not continue to argue with you. Good day. :D
     
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  9. Jill McLaughlin

    Jill McLaughlin *****

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    It is not really about what I want or what you want, it's about what is.

    We do not know which studies apply or not. The majority do not specify what criteria were used. It would be better to know. But this proposal would officially prevent it.


    Tina - "If this is the way some want it, then I can imagine CFS-diagnosed patients saying, "Don't be hijacking our illness to say our studies apply to your illness. Only studies that use ME criteria patients (before ICC) applies to ME patients."

    I don't know what you mean here. This is how it is for most illnesses. Studies on ME apply to ME. We wouldn't know if they applied to other illnesses unless they were conducted on other illnesses, so not sure what you're getting.


    Tina - "If there are two diseases, then CFS research is on CFS patients and ME research is on ME patients. Is this really the case?"

    But there aren't 2 diseases, CFS is not a disease but a heterogeneous syndrome, so no it's not the case. It's not yes or no, it's that we do not know what it applies to.

    If I think research applies to ME then I would like it to be called ME, not CFS. ME has mainly been corrupted by CFS. I think it should stop. But it's not nearly as bad as the trivializing, demeaning derogatory CFS diagnosis.


    Tina, - "The Light study that shows biological abnormalities from exercise, that was CFS patients. So it doesn't apply to ME patients."

    Again we do not know. We do not know what definition was used. So we do not know if it does or doesn't apply. Or what the biological abnormalities were. Other things other than ME may have abnormalities (like mitochondrial diseases, but not all mito illnesses are ME).


    Tina, "Although I hate the name and the baggage with it, I embrace the research of CFS as done by Klimas, Komaroff, Montoya, Natelson, Mikovits, etc. as applying to my illness, the neuroimmune disease as their research shows."

    OK which illness? Assuming we can't call it Tina disease, you have ME but do not want it called ME? All neuroimmune illnesses can have disabling fatigue, but no neuroimmune would be readily recognized based on fatigue and a few minor non-specific symptoms as the main diagnostic benchmarks. If they use an ME definition then they should publish on ME.

    (Sing, I've tried to break it down with quotes and direct responses, so not sure how else to do it.

     
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Some of them do say what criteria. And if I took more time, I bet I could find the definition for the others I referred to. However, it isn't ME criteria as the studies said it was CFS patients. And if you say CFS studies are not ME studies because a different criteria, then that leaves lots of ME patients with very little research into their disease, none in the US. Most of it from UK.

    So, if nothing is changed, then as Jill says, that is the way it will be because that is the way it is. But if I had ME, I would say all this research showing abnormalities in the brain (Natelson and Komaroff), immune system (Klimas and more) and more is my disease. Otherwise, last research done in ME alone (not CFS and not ME/CFS), as is being said here, is over a decade ago.

    The Coalition 4 ME/CFS wants to change that so that it is known that all that good CFS research that shows biological abnormalities applies to those who have the label of ME. And also, that it does not apply to those who have "chronic fatigue unspecified."

    They may use different criteria or names, according to nationality, but that does not mean it is a different disease. Just because the study uses CDC criteria for CFS does not mean those patients didn't meet the criteria for ME in these studies. But it won't apply unless it is understood that it is the same illness.

    Tina
     
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  11. Jill McLaughlin

    Jill McLaughlin *****

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    Tina - "Some of them do say what criteria. And if I took more time, I bet I could find the definition for the others I referred to. However, it isn't ME criteria as the studies said it was CFS patients. And if you say CFS studies are not ME studies because a different criteria, then that leaves lots of ME patients with very little research into their disease, none in the US. Most of it from UK."

    We now have the ME-ICC, which has been updated for research. And we have lots of CFS research that has no bearing on ME.


    Tina - "So, if nothing is changed, then as Jill says, that is the way it will be because that is the way it is. But if I had ME, I would say all this research showing abnormalities in the brain (Natelson and Komaroff), immune system (Klimas and more) and more is my disease. Otherwise, last research done in ME alone (not CFS and not ME/CFS), as is being said here, is over a decade ago."

    Changing the codes won't change it, only an appropriate and specifically used and applied definition will change this. ME and CFS have been coded together in other countries and there has been NO improvement in research or basic recognition. A paper published a survey of a large group or neurologists and over 85% did not view CFS as neurological, and noted *despite the WHO coding.


    Tina - "The Coalition 4 ME/CFS wants to change that so that it is known that all that good CFS research that shows biological abnormalities applies to those who have the label of ME. And also, that it does not apply to those who have "chronic fatigue unspecified."

    That's nice, we keep hearing about all the good research, but what about all the bad research that is published on CFS. Still pollutes the literature and becomes part of the evidence base.


    Tina - "They may use different criteria or names, according to nationality, but that does not mean it is a different disease. Just because the study uses CDC criteria for CFS does not mean those patients didn't meet the criteria for ME in these studies. But it won't apply unless it is understood that it is the same illness."

    Actually it can, and CFS is not a disease to begin with by ANY of the CFS definitions. Yes if they use CDC criteria it (?perhaps) doesn't mean they didn't meet the ME criteria but doesn't mean they did either, thus they are not the same.

    Sorry but you should have done more homework on this one.

     
  12. BobM

    BobM

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    Nielk,

    That skit was the idea of Lori Chapo Kroger from CFS Solutions of West Michigan.
    It was simple, but very effective.

    llewelyn King retaped that skit and it should be on Youtube soon.

    Here is a Link via youtube with videos from the Demonstration plus one that is an interview by llewelyn King from PBS.

    His Me/CFS videos are titled ME/CFS Alert.

    http://www.youtube.com/results?searc...c protest&aq=f --- Demonstration Videos

    http://www.youtube.com/watch?v=-pyEvoLc1n8 ---- llewelyn King Interview



    Bob Miller
     
  13. Jill McLaughlin

    Jill McLaughlin *****

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    It's nice that we have skits on Youtube or even interviews. This will not take the place of a valid diagnosis with
    recognizable diagnostic criteria. The mythical ME/CFS, which is medically unsupportable or even harmful,
    may have some entertainment value but not much else.

    May be great acting or artistic merit but then we can't complain or act surprised when no one gets it or takes it seriously.

     
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  14. Andrew

    Andrew Senior Member

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    Jill: But there aren't 2 diseases, CFS is not a disease but a heterogeneous syndrome

    Wrong. CFS is a name mistakenly put on ME in the United States, and a name mistakenly put on IF in the UK


    Jill: ME has mainly been corrupted by CFS.

    Not really. Colin McEvedy corrupted ME. He claimed it was all hysteria, not CFS.


    I don't understand why you don't want this problem solved, and insist that people who are DXed with CFS can't have ME. I read Ramsey, and his description of ME is exactly like what I have.
     
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  15. Ember

    Ember Senior Member

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    To their credit, Tina, the Coalition4ME/CFS did take a proactive stand on the Canadian Consensus Criteria. And the issue of patient selection hasn't been lost on researchers. The upcoming Lipkin/Hornig study is described as a hunt for CFS viruses, but Dr. Lipkin does stress the importance of the cohort issue here:

    The key to maximizing the outcomes of these tests is the criteria of the patients selected, according to Dr. Lipkin. He said this will give the greatest possibility of finding objective measures for monitoring and measuring the disease. University of Miami researcher and physician Dr. Nancy Klimas, who has been involved in several clinical definitions of ME/CFS, is in charge of the cohort requirement to draw 200 patients from five sites located throughout the U.S.

    ESME has taken an unequivocal position on the ME-ICC, and the National Association for Myalgic Encephalomyelitis is updating its website. (Thanks for the link, WillowJ!) I don't need to tell you that a defeatist attitude in an advocacy organization could become a self-fulfilling prophesy.

    The Coalition's Steering Committee has written, The release of the ME-ICC has tremendous significance to the entire ME/CFS community, as it is the first time that a truly international group of clinicians and researchers have come together to codify their understanding of the disease. They add, We fully support the direction and further evolution of the ME-ICC and the related clinical tools by this international team. However, practically, we realize that it will take time for this to be accepted, taught and put into use across the U.S. medical community, the research community, the insurance industry, government Medicare and Medicaid programs and in disability determinations.

    Through all this, the Coalition4ME/CFS nevertheless maintains its commitment to advocate for the adoption of the Canadian Consensus Document and to promote a new name for this illness that is more appropriate and does not trivialize or give misconceptions.

    I was coming to believe that the Coalition (among other orgs) was dragging its feet for fear of alienating the larger ME/CFS community. But most here seem to think that I'm wrong and that there is only one disease. Perhaps it's the prospect of changing its own name that holds the Coalition back.

    Do you have any other explanation for the Coalition4ME/CFS' failure to update its position?
     
  16. Jill McLaughlin

    Jill McLaughlin *****

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    Andrew, perhaps the name was put on an ME outbreak but it was not recognized or even described as what ME really is,
    which became CFS. CFS does not adequately define or describe ME in the medical lexicon and NEVER has.

    That one instance (McEvedy) was fairly isolated and contained and just an opinion piece by those who had never been involved or seen any patients. Even then it didn't carry much weight. CFS has completely undermined, trivialized and has been an absolute misdiagnosis
    for ME patients and utter disaster for more than 20 years. So hardly the same magnitude.

     
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  17. Hope123

    Hope123 Senior Member

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    Jill, you have repeated your arguments ad nauseum here and elsewhere. I have neither the energy nor the inclination to argue with you over these issues as I doubt you will be convinced with rational arguments anyway but let me say that what you are doing is not only emotionally stressful to multiple people on this board but destructive to what many advocates, patients, researchers, and clinicians are trying to do to solve/ advocate for this illness.
     
  18. floydguy

    floydguy Senior Member

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    With all due respect, I find the current situation of a horribly undefined disease, ie CFS, extremely stressful. Perhaps Jill is repetitive but it's extremely frustrating when the message does not sink in. "Fatigue" and 4 other ill defined symptoms is not working. It is critical pathway and must be resolved regardless of the "stress" that is involved in the process. I find it difficult to see how random cohorts can provide any insight whatsoever to the pathology of this disease or anything else for that matter.
     
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  19. Jill McLaughlin

    Jill McLaughlin *****

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    Ember, It they want the ME-ICC used, this is an ME definition. What they proposed will render it a moot point as ME
    will no longer be a diagnosis. If the Steering committee wrote this, who is this? Hard to believe there was anyone with any medical or professional background. So they are just saying it or do not understand the issues or ramifications. Either way it is disturbing.

    ME is a well established definition while otherwise people can pick and choose. It is sloppy and becomes meaningless as we never really know what group or patients were being studied. I and ME patients want out.

     
  20. Jill McLaughlin

    Jill McLaughlin *****

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    This illness? Which one. They repeated THEIR fallacious arguments to a federal agency behind our backs. So this put us in an unfortunate adversarial position. Much was based on misinformation, which patients may not understand but which they nonetheless used to rally support with well orchestrated non-stop PR campaigns, sample letters, petitions etc. Floydguy is right in that failing to correct this will be much more stressful in the long fun.

     

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