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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. Jill McLaughlin

    Jill McLaughlin *****

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    But it has been viewed as or combined with CFS. We have CDC separating them and the ME-ICC, an updated ME def, so we go backwards and combine them officially via ICD codes. So we wonder why there is no progress, take what has not worked for the past 20 yrs and make it official policy.

    QUOTE=Andrew;221416]The term Myalgic Encephalomyelitis has been around longer than that. And it's not exactly setting the research world on fire. :D[/QUOTE]
  2. Andrew

    Andrew Senior Member

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    Wrong. ME ICC is an updated ME/CFS def. It is the result of the very kind of strategy you oppose.
  3. Jill McLaughlin

    Jill McLaughlin *****

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    Wrong. ME-ICC is an ME definition. The Coalition misinterpreted and misrepresented this (also). It clearly rejects the use of ME or fatigue or the combination term using fatigue; thus ME/CFS. The ME-ICC is the antithesis of this proposal to make them the same via ICD codes.

  4. Jill McLaughlin

    Jill McLaughlin *****

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    My husband actually wrote. Gotta hand it to him. He explains it very well.

    -----

    November 17, 2011

    Donna Pickett RHIA, MPH
    Medical Classification Administrator National Center for Health Statistics -?
    CDC 3311 Toledo Road
    Hyattsville, MD 20782
    Via email: Donna Pickett <dfp4@cdc.gov>
    cc: NCHS <nchsicd9CM@cdc.gov>

    Re: ICD-?10 CM & ICD-?9 revisions for CFS (Chronic Fatigue Syndrome)


    Dear Ms. Pickett:

    I am a physician with 20 years experience treating patients with ME, CFS and FM.

    Although there are some similarities, they are dissimilar enough that they
    should be considered three separate entities. FM is mainly a muscucloskeletal
    pain condition; CFS is profound fatigue substantially reducing functional
    capacity. ME is a disease with primarily neurological challenges, dysautonomia
    and CNS disturbances. For the most part, the primary providers for FM are
    Rhumatologists; for CFS, internal medicine; for ME neurologists/ID specialists.
    The providers are appropriately different as it should be because the most
    effective treatment protocols are quite different.


    ME has a clearly defined disease process while CFS by definition has always been
    a syndrome. A syndrome (for example CFS) is defined by symptoms. A disease (such
    as ME) is defined by symptoms plus objective and measurable findings. Evidence
    based medicine requires an appropriate treatment plan which must correspond to
    the patients diagnosis. Each ICD code represents a specific diagnosis, based on
    the corresponding definition. If a doctor fails to properly indicate the true
    nature of the patients illness through proper coding it will inevitably result
    in difficulty getting approval for appropriate treatment. Patients with a
    discreet neurological illness will not be properly identified and treated if
    diagnosed with a fatigue syndrome.


    For children with ME, a CFS diagnosis can be disastrous. Not only does the
    general public not get it, but if you look at the various department of social
    services guidelines for recognizing abuse and neglect, it includes many of the
    symptoms used to define CFS. Major red flags are fatigue, sleepiness in class,
    tardiness, decreased or erratic attendance. All you need is one over anxious
    teacher to misinterpret and parents have little recourse. It happens way too
    frequently. Children may be forcibly subjected to inappropriate or harmful
    treatments and forced to attend school, which can cause a great deal of damage,
    sometimes permanent. Or children may be taken into State custody. There are few
    pediatricians who understand ME so it is difficult to find support or backup. No
    one who cares about children should allow kids with ME to be diagnosed with CFS
    or in any way connecting or combining them as this proposal by the Coalition 4
    ME/CFS would do.


    For years persons with CFS (or CFIDS) have been subject to ignorance and
    derision from the medical profession, educators and the general public. Mention
    CFS often elicits an oh yeah, I was real tired too. I think I might have had
    that.


    Understandably, people with CFS are frustrated. The initiative to link ME with
    CFS may simply be a desperation attempt to get more respect. From the medical
    perspective, this is the wrong move. If you look at all the definitions of
    these illnesses it includes a huge array of signs and symptoms. It is absurd to
    think that there is one cause and one cure for the people with such diversity of
    complaints and problems. Throwing ME and CFS together into one heading or one
    diagnosis is the last thing that should be done. The only way to establish
    better diagnostic and treatment protocols, or for basic and clinical research to
    make any sense is to have well established and well circumscribed cohorts, which
    this will not provide. This is what, for the most part, has been
    done, and the results for patients in terms of diagnosis or effective treatment
    have been abysmal. This must stop.


    I feel the frustration of persons with CFS but it does not make sense to link up
    CFS with ME anymore than CFS with MS or with anything other distinct diagnosis
    that may share the vague symptom of fatigue. To dredge up an old idea, CFS
    should have a more appropriate name. One that is taken seriously, but it should
    be one that stands alone, and one which would not be automatically confused or
    mis-referenced as "chronic fatigue." People with CFS deserve this. CFS could
    certainly and deservedly be renamed or redefined as appropriate; however,
    misappropriating or linking to another disease is not the answer.


    I recommend that ME should remain as G93.3 under Diseases of the Nervous
    System. I recommend denying the request to classify CFS as G93.9. If CFS should be
    reclassified/redefined/renamed then do so without involving or interfering with
    any other illness, especially one for which a CFS diagnosis would be
    inappropriate or harmful. I disagree with NCHS Option 2. ME should not be
    moved or subdivided or put under a "chronic fatigue syndromes" category.


    Sincerely,

    Dr. Paul J. McLaughlin







    Ember, rlc and mon me like this.
  5. rlc

    rlc Senior Member

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    Hi Jill, thank you for posting the letter from your Husband, I hope that people will read this letter by someone who not only has the medically qualification, but also the clinical experience to properly understand the situation, as opposed to the misinformation being promoted by the medically unqualified Coalition, who are making it abundantly clear that they have no understanding of the situation or the scientific literature, and that people will hurriedly write submissions opposing the Coalitions proposal before it is too late and everybody in the USA with ME gets their lives ruined by the disastrous consequences that will follow if the coalition proposal is accepted.

    All the best
  6. rlc

    rlc Senior Member

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    Hi Medfeb, as I dont see an answer I repeat

    Going off at a slight tangent Medfeb I believe youre with Pandora? Could you please explain to me why it is that all the US patient orgs completely ignore the issue of misdiagnosis? That is caused by the woefully incomplete instructions found in the CFS definitions used in the States. I would recommend scrolling down to the bottom of this page and reading the article The myth of Chronic Fatigue Syndrome by Dr Shirwan a Mirza http://www.bmj.com/content/334/7605/1221?tab=responses In it you will find detailed instructions on all the common disease that cause the same symptoms as CFS that are not in the US definitions and how to test for them. Then print it out, and next time you lot are in contact with The CFSAC or NHCS, start demanding that they make these test mandatory for all CFS patients, so that everybody has to have these conditions ruled out before they can have a CFS diagnosis, its not a complete list of every disease that gets misdiagnosed as CFS but its the most common ones and a good start. It would give tens of thousands of miss diagnosed patients their lives back, and stop them being added to the mixed cohorts being research!
  7. Andrew

    Andrew Senior Member

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    What I was clarifying was that it is not an update of an ME definition. It is actually an update of an ME/CFS definition. It is Step 2 of Plan B. And it is based on research and clinical experience of ME/CFS experts from around the world.

    Too bad he believes everything the CDC says. Why don't you print out a copy of the ME-ICC and give it to him to read. Then he can get information from real experts. I gave you a link to it in one of my previous messages to you.
  8. Jill McLaughlin

    Jill McLaughlin *****

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    "What I was clarifying was that it is not an update of an ME definition. It is actually an update of an ME/CFS definition. It is Step 2 of Plan B. And it is based on research and clinical experience of ME/CFS experts from around the world."

    They updated the ME/CFS def and abandoned fatigue and the connection to or with ME; thus is the antithesis of ME/CFS. It, so this is a true ME definition. There's no step 2 plan B. It is or it isn't.


    "Too bad he believes everything the CDC says. Why don't you print out a copy of the ME-ICC and give it to him to read. Then he can get information from real experts. I gave you a link to it in one of my previous messages to you."

    Well he did read it and his conclusions were that this is good news in that we now have an updated ME definition that can be used which distances from the fatigue paradigm. He believes what he observes in his practice. ME was misnamed CFS and then redefined to something other than what ME is. This is sloppy and unscientific and should not be accepted, let alone made official by fudging ICD codes. Perhaps you should not have believed this "Coalition" of very small # of patients/lay pple who have no medical/scientific degrees or background or experience and no apparent understanding of the process which he uses and deals with on a regular basis.


  9. Ember

    Ember Senior Member

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    By what authority do claim that the ME-ICC is an update of an ME/CFS definition? If you want to say that the ICC took the CCC as it's starting point, then say that. According to the ICC itself, it is an ME definition.
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Not going to comment on some of the erroneous information here. Just going to say, thank goodness the deadline has passed and we all just have to wait now. I am sure many others share my sentiment that it has been very tiresome to continue to discuss this. Now, the NCHS will take all the comments and come back with a decision in December.

    For those who had a respectful tone, thank you.

    I have had a very hard week this week and now that we all have talked about it thoroughly and the deadline for comments is over, I going to check out. So whatever comes afterward, if people feel they have to have the last word, just know, I am not going to respond.

    I can't speak for anyone else, but I need a break from this issue for a while.

    Tina
    beaker likes this.
  11. Jill McLaughlin

    Jill McLaughlin *****

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    That's OK Ember. You are correct. It may have started as an update but then took it to the mat. It clearly rejects ME/CFS and the CCC was an ME/CFS def.

  12. Andrew

    Andrew Senior Member

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    And this is exactly what I was saying before. CFS is actually ME with a bad name and a bad definition.

    It's very simple. The title of the CCC is "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols." And the content reflects the title. I posted links to both documents before. I invite all people reading this thread to at least skim these both.

    And if anyone wants to read part of the history behind these two documents, here's an article.
  13. Jill McLaughlin

    Jill McLaughlin *****

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    Well if the definition is bad enough it is NOT ME. this is the case. You are saying it is supposed to be ME - but it is not. The ORIGiNAL CFS definition did not really describe ME, so really never was. Definitions have to describe or match what it is they are referring to. None of the CFS definitions describe ME, thus are not ME. It is NOT: what you have; what you think it is; what you think it was; what it is/was supposed to be. Not how it works.

    I think most have read the CCC. Would prefer a straight ME diagnosis. Even the Canadian def pile did this. Why do we need 2 names? Would AIDS people have accepted GRID/AIDS. The answer is no. Oh but: thisiswhatitiscalledandwecan'tchangeitandthereisgoodresearchand....
    Enough.

  14. Ember

    Ember Senior Member

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    Of course, it's not very simple, Andrew. If it were, people who are passionate about the issues that have been discussed here wouldn't likely be disagreeing with each other.

    I interpreted Jill's statement, ME was misnamed CFS... to mean ME was misnamed as CFS or ME was mistakenly called CFS. Her meaning seemed clear to me, and I hope you simply misunderstood when you characterized her statement differently. Your statement, CFS is actually ME with a bad name and a bad definition carries a different meaning. Can you hear that difference?

    Nobody has disputed the title of the Canadian Consensus Document, so your posting the document here makes me think that you have misunderstood what I've written as well. The issues are important enough in my opinion to make the careful use of language worth the extra effort, so I apologize if my question to you was confusing.

    I asked, By what authority do claim that the ME-ICC is an update of an ME/CFS definition? If you are using the ME-ICC as your authority, you'll notice that the document doesn't actually say what you've written. It doesn't say that it is an update of the CCC or of its ME/CFS definition. It says instead, The Canadian Consensus Criteria were used as a starting point, but significant changes were made. That's a different statement. But perhaps you're using another authority. You've posted Cort's article, and I'm looking to see if Marj van de Sande calls the ME-ICC an "update" of the CCC or of its ME/CFS definition. I can't see that she does, but if I've missed a direct quote, please point me to it.

    I'm sorry, by the way, that you haven't seen fit to remove the earlier comment that so shocked me. Perhaps you don't consider it to be offensive. I've now removed all reference to it from my earlier post.
  15. Jill McLaughlin

    Jill McLaughlin *****

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    Moderator: Insulting and inflammatory post removed.
  16. Jill McLaughlin

    Jill McLaughlin *****

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    Ember, yes, sorry, that is what I meant and you captured the different connotation. Just happy hour and a few glasses of wine...

  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
  18. Andrew

    Andrew Senior Member

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    To avoid just more "he said, she said," which is not very helpful --- I'll just refer people to the source documents and let them decide for themselves.

    Myalgic encephalomyelitis: International Consensus Criteria aka ICC. This is the international criteria many have been talking about. Please at least read the introduction. They explain its relation to CFS and the Canadian Criteria.

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols aka Canadian Consensus aka CCC. As you will see when you click the link. this was first published in the Journal of Chronic Fatigue Syndrome. It begins on page 7. Even though the ICC updates and replaces the CCC, it is worth seeing how important it was when it came out. It did more than provide a definition. It also gave doctors a list of medications that could be used for palliative treatment, and explained how good the research was for each. It also provides a brief literature review for doctors to get acquainted with the topic.

    Re-inventing CFS- the International Consensus Criteria for ME: the Marj Van de Sande Interview.This is an interview with an activist who played a pivotal role in bringing about the Canadian Consensus and International Consensus. You can also learn about the history, and what their strategy is for transitioning the CFS and ME names.

    Osler's Web. Written by investigative reporter Hillary Johnson, it is a narrative that covers the doctors, researchers, patients, and government activities from right before the Nevada/California outbreak and the next 10 years. When I read this I not only came to understand how we got into such a mess, but the information about various findings allowed me to understand my illness for the first time. This is not a short book, but I was able to read it little by little over many many months.

    Anyway, check out these sources and decide for yourselves.
    beaker likes this.
  19. Jill McLaughlin

    Jill McLaughlin *****

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    In medicine it is not about deciding or which you prefer, it is about what you have. If you do not have an accurate dx then you are sunk and will not get proper treatment. We have proven that. ME patients will not get proper care with a CFS dx.

    But these people have taken it upon themselves to prevent this from happening by officially making them the same.

  20. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Rlc,

    It's Complex Somatic Symptom Disorder - not "Complex Somatic Syndrome Disorder" as you have it.

    Under current SSD Work Group proposals all medical diseases, disorders and conditions have the potential for the application of an additional diagnosis of an SSD.

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