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

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

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Then, Ember, the point is that the comparison of migraine being a type of headache does not correlate to ME being a type of CFS.

    Headache is a symptom, not a syndrome or disease. So, actually, migraine is not a type of headache, according to the codes. (I checked, is same for ICD-10) Headache as a symptom is put in the R code. Migraine is a neurological disease put in same area of epilepsy. So, to be clinically accurate, migraine has headache as a symptom, according to the way the codes are set up. As you know, migraine has other symptoms.

    Of course, headache (pain in the head) is symptom of brain tumor and many other diseases, even MS.

    Maybe in world outside of medicine, we might say, "I have headaches." And then say the type of headache I have is migraine. But this would be comparable more to just chronic fatigue. And then the diagnosis is CFS or ME. So, headache is comparable to fatigue, not chronic fatigue syndrome. A person can have fatigue and end up having cancer. And maybe there is research into improving fatigue as a symptom, but the research that we are seeing to improve our lives is not research into fatigue into cancer, COPD, etc. but research into chronic fatigue syndrome.

    To follow that model, then chronic fatigue (the symptom) could be, and coalition agrees should be, left in the R code. And ME, as coalition also agrees, should be in the G code as it is now.

    But, that does nothing with chronic fatigue syndrome, which by definition is not just a symptom of another disease. It is a separate syndrome or disease, which is why it is getting researched as such. So, where would you put that based on research and practicality to the benefit of patients?

    As the ICD-10 shows, it is not appropriate to put CFS under R code as it is more than just a symptom that many diseases have. Just as fibromyalgia is a disease, not just the pain symptom. CFS is a set of symptoms that excludes other diseases. It is its own syndrome (or disease, as it is being researched and diagnosed). So, would you put CFS as a separate code from ME in the ICD-10-CM (and I guess the Canadian version)? Well, then the CFS research and treatments don't apply to ME patients.

    If CFS is the lead code for PVFS and ME, then CFS is a disease for which ME is a certain type. That means ME people have a form of CFS. As I said before, this would be like Migraine being the main illness, but a different code for those with aura or those with other types of migraines. This would further legitimize CFS term and Fukuda, and make it the primary name for many different types. This seems to be contrary to the goal of many researchers, including Jason and what patients want.

    Or, you can put CFS as a type of ME. That would have ME as the main illness with subcodes underneath, CFS being a type of ME. But in that case, for payment of treatments for research, we would all be getting the CFS diagnosis and not the ME diagnosis. Again, this would further legitimize CFS as term and Fukuda as criteria. ME would be lost. Just as people say they have migraines. They don't say, "I have migraines with aura," even if that is the code they are given.

    Migraines are not a type of headache. As code says, headache is a symptom of migraine. It can also be a symptom of other syndromes, psychological illnesses and other organic diseases.
    CFS and ME are not types of fatigue. Fatigue is a symptom of CFS and ME (or ME aka CFS). Fatigue can be symptom of many different diseases.

    Migraines have many different types and subtypes, which are largely not used in common reference to the condition. These subtypes are minimized and not relevant in most cases.
    So, does that mean CFS has many different types and we are going to keep CFS as the main heading, the lead term for all the different subtypes of ME and PVFS? This would minimize ME and PVFS.

    Tina
     
  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Neik, the goal is not to stop the push to change the name. Quite the contrary. By showing ME/CFS, as you suggest, we are leading to doing away with CFS, emphasizing ME as the correct term. Already, (and this is a little bit of public relations strategy) the CFSAC members are having trouble pronouncing "ME/CFS." Many were saying "ME/CSF." After a while, Lenny Jason said, "Since we are having so much trouble with the name, why don't we just call it ME." And so there you go. This will be a transition. It will take time to retrain the world, news media, physicians, etc. But we can eventually retire CFS if we say, as much research and the NIh says, CFs is another term for ME.

    But, CFS will be the prominent name, receive the research, have government agencies and a separate disability criteria as long as it is separate from ME. It will never go away.

    While the goal is to make ME prominent and make CFS fade away, along with the Fukuda, we don't want to lose the CFSAC, the CFS research, the upcoming CFS treatments, the disability criteria and that accomplishments made under CFS label and Fukuda. Having same code, as ICD-10 does, will bring us closer to that goal. We want ME and ME-ICC to replace CFS but include the important advancements of CFS. This is better than CFS and Fukuda existing side by side to ME and ME-ICC. All the institutional structure and research is in CFS, leaving ME-ICC to be in the same place as CCC. It will leave ME as rarely known and hardly ever diagnosed in US. It's a simple reality.

    I understand the fear that if you bring in good of CFS to ME, then you may be bringing the bad. But, the bad is also associated with ME, especially in UK. So separating does not solve that. Science, better criteria and changing perception of public and physicians will change that get the bad out of CFS. And, that is happening, at least here in US. That is why the NCHS embraced the idea of moving CFS out of the R code. They likened it to the pain conditions that once science showed was neurological, was moved there. While there still is a pain code for unexplained pain. Those folks in the ICD-9-CM C&M Committee, know that CFS is not psychological. That is why all those who commented agreed with putting it into neurological.

    Yet, all of them said they had never seen an ME code and didn't know anything about it.

    Tina
     
  3. Ember

    Ember Senior Member

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    Not living in the US or being an expert in disease codes, Tina, I've tried to keep my opinions to myself concerning where to put CFS in the ICD-10CM. (I don't even know how it's coded in Canada, medical insurance not being of any concern to us.) However, I can appreciate arguments for moving CFS out of Signs and Symptoms, even though I wouldn't base that move on the ICC's (supposedly) claiming CFS and ME to be the same. The ICC does distinguish ME from CFS, so attaching CFS in the same code directly under ME does worry me.

    Logically, CFS can't be called a type of ME. The hallmark of ME is PENE, and no CFS definition requires even PEM. Characterizing ME as a type of CFS, on the other hand, does make sense, given that ME is a subset of CFS.

    I agree with you that fatigue is a symptom both of CFS (by definition) and of ME. According to the ICC, The pathological low threshold of fatigability of ME...often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days. Doesn't fact that fatigue is a symptom of both make both, at least in common parlance, types of fatigue? Couldn't the same be said of the usual experience following chemotherapy? Chemotherapy patients often experience a type of fatigue.

    Until there's more research into the pathophysiology of CFS minus ME, I personally don't know whether CFS is a list of symptoms (including fatigue), a syndrome, a disease, or what to make of it. Apparently arguments in connection with the ICC publication may be made public as early as this week. Although for the most part, the scope of the ICC itself is limited to criteria of ME and their application, I'm hoping that arguments for the new definition will include some expanded discussion of its relationship to CFS-Fukuda.

    More research using CFS-Fukuda alone will leave us forever wondering what applies to CFS and what to ME.
     
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Intrigued of discussion of ME-ICC this week. I got a hint that not all researchers are big fans of ME-ICC. Dr. Klimas emphasized there should be a different criteria for research from one for clinical practice. She said it at the CFSAC and it not the first time I have heard her say that.

    Yet, she was one of professionals in ME-ICC.

    Ember, any way we can get reports on this discussion?

    In ICD-10, used by Canada and US, CFS is in the index listing of diseases and refers the reader to G93.3, code for PVFS and ME. There is no further separation. See top of page 316 for the Canadian clinical modification of the ICD-10. http://secure.cihi.ca/cihiweb/en/downloads/ICD-10-CA_Vol1_2009.pdf

    I certainly would not describe CFS or COPD as "types of fatigue." That would indicate fatigue is itself a disease. It isn't, it is a symptom. Now if I had breast cancer, I would say I have a type of cancer. I would also say that CFS patients have fatigue. COPD patients have fatigue. So, really, these should be in the list of symptoms of the criteria. But since COPD and CFS are diseases (or syndromes) then they should have a code.

    Basically, the way I am learning the ICD code book is, R codes seem to mainly be unexplained symptoms. This would include unexplained headache, which is in R code. But if person has migraine, then their symptoms is explained as it is part of disease, migraines.

    So it is with pain. You can have doctor put down an R code for pain and where the pain is. http://www.findacode.com/icd-10-cm/icd-10-cm-diagnosis-codes-R10-group.html But if person has fibromyalgia, then they are given M79.7 code as it is considered a disease of the musculoskeletal system and connective tissue, other soft tissue disorder.

    And so it would seem with fatigue. If you have fatigue of unknown disease, then you would get R53.82. But if you have fatigue from cancer, you get the code for that. If you have fatigue from COPD, you get the code for that. And if you get fatigue from ME, you get the code from that. The point is that CFS should not be just "fatigue but we don't know why," so it shouldn't be in the R code.

    Tina
    Tina
     
  5. Ember

    Ember Senior Member

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    Are you referring to Dr. Carruthers' talk at the MEFM Society's AGM yesterday? He gave a presentation on case definitions, answered our questions and handed out his article: "Definitions and etiology of myalgic encephalomyellitis: how the Canadian consensus clinical definition of myalgic encephalomyelitis works" (2007). Sorry, I haven't read the article yet! Many of us took notes. Perhaps the Society will put out a newsletter summary later.

    (The link you posted, by the way, seems to take me to a section on the eye. Am I missing something?)

    Responding to your edit, so long as CFS includes ME, I agree with you that CFS doesn't belong in the R Code. However, should the ME cohort ever be removed from CFS, I'm not sure what would remain of CFS. Perhaps that unresolved question is at least part of the reason that these conversations can get so unfriendly.

    To learn more, we need more research, and not just more CFS-Fukuda research, re-branded as research in ME.
     
  6. Ember

    Ember Senior Member

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    Was she suggesting that change needs to happen more cautiously in clinical practice, because use of insurance and disability considerations?
     
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I was referring to your statement above. I was saying I am interested in seeing this if and when it goes public.

    I think almost all, even researchers, but the CDC agree Fukuda falls short. So why is it still the one used? I don't know. Possibly publications will not publish studies using others? Possibly can't get funding for a study using another criteria? I don't know.

    If you have an idea to get researchers to use the ME-ICC, I would love to hear it. For some reason, the CCC never caught on in research either.

    I wonder, again, if as long as CFS is considered a disease (syndrome) and it has its own code and separate definition, then that is where the research will go. So getting it phased out and replaced with ME and different criteria will solve that.

    What Dr. Klimas was saying is that when you are researching an emerging or little-understood disease, especially if you are looking for the cause, you must use a very narrow criteria for defining the cohort. She gives the examples of AIDS in early days. They eliminated 25% of the people dying from the disease from the research because they needed to be very narrow, to increase the chances of finding the common denominator. She said it was only men of a certain age who were dying of small list of viruses.

    The criteria used for research would not appropriately apply in clinical practice. Research criteria, by nature, would exclude many who have the disease. She said the ME-ICC will also exclude some who have the disease. (maybe that is why it suggests "atypical ME")

    Once the narrow cohort is used to find a biomarker, then you define who has the disease by the biomarker. Or, when a treatment is tried on the very narrow cohort for efficacy, and it works, then it can be said to be an effective treatment for the disease. But with all treatments, it doesn't always work on every patient. So it can be tried on the broader criteria to see if it works.

    You can see this discussion on the videos of the CFSAC meeting.

    Tina
     
  8. Ember

    Ember Senior Member

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    Dr. Unger's statement to David Tuller, published this week, makes me believe more strongly than ever that patient groups need to insist, with one voice, that the ME-ICC be used in all future research.

    David Tuller quotes Dr. Unger: We are planning to collect standardized data on all the domains of illness included in the Canadian Consensus Criteria of CFS/ME, the 1994 CFS definition and the newly proposed International ME definition, she wrote. We anticipate that this data will assist researchers and clinicians in considering further refinements of the case definition. With regards to the name of the illness, she wrote: Opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities. However, we are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.

    I want to see the Coalition4ME/CFS update its vision statement to advocate for the adoption of the ICC.

    I'm delighted by the position that ESME has taken, recommending that: Researchers use the ICC exclusively and call the disease ME in all written documents about their research. Government agencies/foundations give research grants to scientists using the ICC. Government agencies/institutions officially adopt the ICC and post them on official websites. Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients. Advocates/patient associations speak with one voice by agreeing to call the disease ME.

    I'm even encouraged by the National Alliance for Myalgic Encephalomyelitis' website. But you probably know better than I do what needs to be done to persuade other advocacy organizations to take a similar stand for us.

    As for the ICC discussions being made public, if they haven't popped up on the internet by week's end, I'll follow up.
     
  9. Dolphin

    Dolphin Senior Member

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  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Correcting misinformation about Suzy Chapman (ME agenda and DSM-5 and ICD-11 Watch)

    November 30, 2011

    Once again I find it necessary to correct misinformation about me on the internet in connection with the issue of the coding of CFS in ICD-10-CM.

    It is still being claimed that I am working with or helping out the Coalition 4 ME/CFS.

    As has been set out already on this forum and in statements on my sites and on Co-Cure, this is a false statement.

    I have had no involvement with the development of the Coalition 4 ME/CFS's submission on ICD-10-CM coding to NCHS in July, or with the presentation by Mary Dimmock and Marly Silverman at the September NCHS meeting, or with the preparation of any documents associated with that meeting or with the preparation of any documents associated with the Coalition's campaign around the ICD-10-CM coding issue.

    My input into the Coalition's initiative at any stage of its development has been nil.

    It is the case that:

    a) I collated a number of proposals for ICD-10-CM in one post in a thread on this form for ease of reference by all readers of the thread and that Mary Dimmock thanked me on this forum for that post.

    b) I posted information in a thread on this forum which clarified the difference between Excludes1 and Excludes2 in the context of ICD-10-CM and Mary Dimmock thanked me for that information which again, had been posted for the benefit of all readers of the thread.

    Being thanked for providing information in a post or posts on these forums does not equate with working with or helping out the Coalition 4 ME/CFS.

    To imply or state otherwise misrepresents both me and the Coalition 4 ME/CFS, Marly Silverman, Mary Dimmock and their colleagues within the Coalition.


    It has also been claimed, recently, in the context of other claims about me and the ICD-10-CM coding issue, that the CAA have acknowledged and thanked me.

    It is the case that the blog admin of the CAA's blog had thanked me for providing information in the blog comments section (dated October 18, 2011) about the arrangements for the CFSAC meeting, provided to me by Mr Emmett Nixon, via email, on behalf of the CFSAC Committee team, in response to my enquiries about the fall CFSAC meeting arrangements. That post and the comments to that post can be read here: http://www.research1st.com/2011/10/05/cfsac/

    At no point have I and the CAA discussed the ICD-10-CM coding issue, either on a public platform or in private communications and the CAA have not thanked me, at any time, in relation to any matters or action in relation to the ICD-10-CM coding issue.

    Once again, misinformation about my relationship with the CAA is being promolgated.

    Having already published a statement of clarification on September 15, 2011, which can be read on my website here, it is deeply disturbing that misinformation continues to be posted on the internet.

    Any false statements or innuendo on any internet platforms about my relationship to the Coalition 4 ME/CFS, their ICD-10-CM coding initiative or my relationship with the CAA, will be referred to moderators and forum owners, website and blog owners for their attention.

    I trust this makes my position clear.

    A copy of this statement will be published on my sites and forwarded to the Coalition 4 ME/CFS for the attention of Marly Silverman, Mary Dimmock and other Coalition members, which includes Cort Johnson's Phoenix Rising.


    Suzy Chapman

    http://dxrevisionwatch.wordpress.com
    http://meagenda.wordpress.com
    http://www.facebook.com/MEagenda
    http://twitter.com/MEagenda
     
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    For ease of reference for the coding of CFS in ICD-10-CM issue at the fall CFSAC meeting:


    Day One, Tuesday, November 8, 2011

    Video:

    CFSAC November 8, 2011; 9:00 - 11:15 am http://youtu.be/uB8xnB69KaE

    Donna Pickett (NCHS) presentation is first agenda item.

    Donna Pickett's Presentation slides available here in PDF format: International Classification of Diseases Clinical Modification (PDF 91.8 KB)
    http://www.hhs.gov/advcomcfs/meetings/presentations/internatl_classification_20111108.pdf

    ---------------

    Day Two, Wednesday, November 9, 2011

    Video:

    CFSAC November 9, 2011, 1:30 pm - 4:30 pm http://www.youtube.com/watch?v=VclEVvfJYRg

    0:33 mins in from start Marly Silverman gives Oral Testimony on behalf of Michael Munoz on CFS coding in ICD-10-CM issue

    1:12 -1:16 in from start Steven Krafchick, CFSAC Committee member and attorney reads out proposed Recommendation, the wording of which restates and expands on the previous CFSAC Recommendation to HHS of May 2011.

    Motion to adopt Recommendation carried unanimously.


    Wording of Recommendation

    CFSAC considers CFS to be a multi-system disease and rejects any proposal to classify CFS as a psychiatric condition in the US disease classification systems.

    CFSA rejects the current classification of CFS in chapter 18 of ICD-10-CM under R53.82 - chronic fatigue, unspecified, chronic fatigue syndrome not otherwise specified. CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under Diseases of the nervous system at G93.3 in line with ICD-10, the World Health Organization, and ICD-10-CA, the clinical modification and in accordance with committee's recommendations of August 2005 and May 2011.

    CFSAC rejects the National Center for Health Statistics Option 2 and recommends that CFS remain in the same code and the same subcode as
    myalgic encephalomyelitis because CFS includes both viral and non-viral triggers.

    CFSAC recommends that an "Excludes1" be added to G93.3 for chronic fatigue R53.82 and neurasthenia F48.0*. CFSAC recommends that these changes be made in ICD-10-CM prior to its roll out in 2013.​


    *Note: I am advised that an amendment is being made to the Recommendation to substitute "F48.8" for "F48.0", "F48.8" being the discrete code for Neurasthenia in ICD-10-CM, according to the draft ICD-10-CM Tabular List as it currently stands.


    Lenny Jason's term as a CFSAC Committee member has now come to an end. I've already thanked Lenny for his work on this coding issue since spring 2011 but I'd like to thank him publicly, too.

    Suzy Chapman
     
  12. rlc

    rlc Senior Member

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    RE

    CFSAC considers CFS to be a multi-system disease and rejects any proposal to classify CFS as a psychiatric condition in the US disease classification systems.

    There was NO proposal whatsoever to classify CFS as a psychiatric condition in the US disease classification systems!!!!!

    There was nothing in the original proposal to have CFS classified as R53.82 that in anyway said that CFS was to be considered psychiatric, I feel really sorry for you US patients, when you have organizations like the CFSAC that cant or wont even get their facts right!!!!

    All the best
     
  13. Ember

    Ember Senior Member

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    Apparently, Tina, the reporting of the ME-ICC critique is entirely in the hands of the publishers. And I haven't seen any sign of it yet.

    Lenny Jason's publication this week does provide clarification, however, concerning the relationship between CFS-Fukuda and ME (albeit without using the ME-ICC): When applied to a population meeting the 1994 CFS case definition, both ME/CFS and ME criteria appear to select a more severe subset of patients (http://ehp.sagepub.com/content/early/2011/10/18/0163278711424281.abstract).
     

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