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IMEA-New M.E. Association

Discussion in 'General ME/CFS News' started by Ana, Mar 7, 2011.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Screenshots from ICD-11 collaborative drafting platform (the iCAT)

    Extracts from my Dx Revision Watch site June 2010 report:

    PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform: http://wp.me/pKrrB-KK

    For full notes that accompany these images, please see the report on my site.

    The information in this post relates solely to proposals for ICD-11. It does not apply to ICD-10-CM, the forthcoming US “Clinical Modification” of ICD-10.

    There are ICD-10 clinical modifications for ICD-10-AM [Australia], ICD-10-CA [Canada], ICD-10-GM [Germany], ICD-10-TM [Thailand] and ICD-10-CM [United States]. These ICD-10 modifications differ in their number of codes, chapters, and subcategories. Specific conditions are present in some but not all of the modifications.

    The most recent release of proposals for ICD-10-CM (release for 2011), both the Index and Tabular List can be downloaded from the CDC site here: http://www.cdc.gov/nchs/icd/icd10cm.htm


    ICD-11 screenshots from the iCAT drafting platform

    The iCAT drafting platform was taken out of the public domain in November. The platform may be available again, in May, if the Beta Draft is ready by then. ICD Revision has been discussing the pros and cons of postponing the Beta until later this year, or possibly even next year.


    Chapter 6 Diseases of the nervous system

    Note that existing ICD-10 codings between G83.9 and G99.8 are being reorganised and have been assigned the labels GA thru GN (some of which are parent categories with child and grandchildren categories).

    GN Other disorders of the nervous system is a parent to category Gj92 Chronic fatigue syndrome


    [​IMG]


    This iCAT Discussion Note for "Gj92 Chronic fatigue syndrome" records a Change in hierarchy for class: G93.3 Postviral fatigue syndrome because its parent category (G93 Other disorders of brain) is proposed to be removed.

    Note that the removal of the parent G93 Other disorders of brain will affect many other categories that were also classified under G93 in ICD-10, not just G93.3.

    Note that many categories in the G codes are undergoing reorganisation within Chapter 6 and have been assigned "Sorting labels". It is not known, at this stage, whether PVFS, CFS and ME will be reassigned the G93.3 code because of the reorganisation that is being undertaken within Chapter 6 and because of the removal of the parent term G93.


    [​IMG]


    [​IMG]


    Note that three External Definitions (which aren't all visible in the screenshot, below, but I have the text for them on file) were imported from other classification systems as part of the "Start-up" list that kick started the revision process. It is understood from key ICD documents, that these External Definitions would not display in the final print and electronic versions of ICD-11. All three volumes will be available online. Because the iCAT does not show all the categories, it is not yet evident whether (B)ME will be assigned its own ICD Title Description pages and/or whether (B)ME will be specified as a Synonym to, or Subclass of Gj92 Chronic fatigue syndrome.

    The full text for the External Definition that is party visible is:

    A syndrome of unknown etiology. Chronic fatigue syndrome (CFS) is a clinical diagnosis characterized by an unexplained persistent or relapsing chronic fatigue that is of at least six months duration, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction of previous levels of occupational, educational, social or personal activities. Common concurrent symptoms of at least six months duration include impairment of memory or concentration, diffuse pain, sore throat, tender lymph nodes,headaches of a new type, pattern, or severity, and nonrestorative sleep. The etiology of CFS may be viral or immunologic. Neurasthenia and fibromyalgia may represent related disorders. Also known as myalgic encephalomyeltis.

    Ontology ID UMLS/NC12007_05
    E




    [​IMG]


    This screenshot shows (B)ME specified as an Inclusion Term to Gj92 Chronic fatigue syndrome:

    [​IMG]


    I am including two screenshots from two other ICD-11 Chapters in order to show that "Postviral fatigue syndrome G93.3 -> Gj92 Chronic fatigue syndrome" is specified as an Exclusion to Chapter 5 F48.0 and specified as an Exclusion to R53 Malaise and fatigue (the latter being the R code Chapter 18, where it is proposed to code for Chronic fatigue syndrome NOS in the US specific, ICD-10-CM).

    Chapter 5 (V) Somatoform Disorders

    Inclusions and Exclusions for Neurasthenia:

    [​IMG]


    Chapter 18 Symptoms and signs

    Inclusions and Exclusions for R53 Malaise and fatigue:

    [​IMG]


    The Fields for Synonyms had not been completed at the time these screenshots were made (this was the case for most categories throughout all chapters). But Synonyms, Subclasses etc to ICD Title entities will be specified in ICD-11. Many of the Fields had yet to have their content authored and entered into the iCAT by last year. The sheer amount of textual material to be generated, reviewed and entered into the draft is one of the reasons why the Beta draft targets are slipping.

    From the information available, it is not currently possible to determine what the proposed hierarchical status of Postviral fatigue syndrome and Benign myalgic encephalomyelitis will be in relation to Chronic fatigue syndrome, and in relation to each other.

    What can be determined, at this point, is that all three terms are proposed to be classified within Chapter 6 and that (B)ME is specified as Inclusion term to CFS.

    It may be that PVFS will be subsumed under CFS, as PVFS will be losing its parent code G93, and that CFS will become the ICD Title entity (hence the "Change of hierarchy").

    (A request for clarification of these issues was made in late June 2010 to Dr Raad Shakir, Chair, Topic Advisory Group for Neurology, but a response is still awaited at March 2011.)


    So to recap, for ICD-11:

    All three terms, PVFS, CFS and (Benign) ME are proposed to be classified within Chapter 6 for ICD-11.

    "Gj92 Chronic fatigue syndrome" is proposed to be an ICD Title term, with a draft Definition (which may be subject to revision) and with other content fields in the process of being authored and entered into the drafting platform, according to a common "ICD-11 Content Model".

    (B)ME is specified under the "Gj92 Chronic fatigue syndrome" Terms parameter as an Inclusion term to Chapter 6 ICD Title term "Gj92 Chronic fatigue syndrome". ("Gj92" is a "Sorting label" not the ICD-11 code.)

    "Postviral fatigue syndrome G93.3 -> Gj92 Chronic fatigue syndrome" is specified as an Exclusion to Chapter 5 F48.0 and specified as an Exclusion to Chapter 18 R53 Malaise and fatigue (the latter being the R code, where it is proposed to code for Chronic fatigue syndrome NOS in the US specific, ICD-10-CM).


    Extract from ICD "DIFF File – Changes from ICD-10" [MS Excel doc. Retrieved 29.09.10; Not available on 01.10.10 as it was taken offline by ICD Revision]

    Field “A Type“ specifies: new; unchanged; decision to be made; retired; real retired

    [Note: ICD11 Alpha Codes may be temporary sorting codes; "FXC" against "G93.3" does not relate to the F Codes in ICD Chapter 5 (V); note also that Gj92 is an ICD-11 "Sorting label" not an ICD code.]

    Extract Spreadsheet:

    [​IMG]
     
  2. Ecoclimber

    Ecoclimber Senior Member

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    Every Legitimate Organization Requires the true Identity of its officers

    Apparently, someone else is not to happy about the situation and knows some behind the scenes information on the people involved.

    The lying, dishonest owners of ME-F

    Do these shadowy people who post under various pseudonyms and lie about their associations with made up institutions, is an indictment in and of itself to stay far away from this organization. Can you imagine other organizations using the same tactics? :eek:

    Eco
     
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Why all the negative comments?

    Because it does not appear that they have secured a meeting with Dr Unger yet or that Dr Unger will necessarily be prepared to meet with a rep for IMEA - an informal organisation, set up only a week or two ago with no history of advocacy.

    Because when folk set themselves up as an "organisation" and claim a mandate to represent other patients there is an expectation of transparency about who is speaking on behalf of patients. There has been a lack of transparency, here.

    Because patients and carers may want to donate funds. So they need to know who is behind this set up and what their backgrounds are and on what basis the organisation is operating and how and by whom any income will be managed and accounted for.

    Because they are using a name that is very similar to that of an existing UK organisation and they ain't too impressed, either.

    Because it is not an issue of how long people have been ill for. The issue was that Gerwyn states in his public PR profile that he has been ill since 2005. He claimed to me that he had had ME since before [Suzy] was born. Implying that he had been ill for a considerable time. So there was inconsistancy there.

    Because Ms Gunn ("CEO") has made statements about ICD-11 that need questioning, which suggests that the organisation is not well informed around ICD, and that does not bode well, given that one of the topics IMEA may wish to discuss with Dr Unger (if they secure a meeting, which is by no means certain) is ICD-10-CM.

    Why settle for so little from those who are claiming a mandate to speak on behalf of others?

    Suzy
     
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Also, Patricia Carter is on record as having referred to a forum member as "insane" - that is not the kind of MO I expect to see from someone who has now assumed the role of a "Director" of an informal organisation that claims a mandate to speak on behalf of patients. Not what I'd expect from a former practicing lawyer, either, come to that.

    Suzy
     
  5. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    maryb, when I and several others challenged the wisdom of slogans like "CFS = XMRV = living death", and similiar, as in the list I posted earlier, I was ripped into by Gerwyn for allegedly "lecturing him" and he was extremely rude and hostile towards me; I was also called a "troublemaker" by the forum owner, which is one of the reasons I left.

    I suggest that you poke around on that forum and witness the level of ad hominem that the mods and admin allow to go unchecked.

    Several of those involved in IMEA are members, mods or admins of ME-CFS Forum.

    Many of the forums are public and some of these "Directors" of IMEA are not presenting themselves in a professional manner.

    They need to put their own house in order first.

    Suzy
     
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    maryb,

    kjm has provided evidence that strongly suggests that Gerywn Morris may well be "Gethin Price". We do not know whether either are real names.

    IMEA also has material on its site attributed only to "Gerwyn" - not even a surname. Why not?

    Gethin is calling himself a "Director" of an advocacy organisation that wants to be taken seriously.

    So it needs to start accumulating some credibility.

    Let's assume that Gethin is Gerwyn. Gerwyn can PM me and confirm this is not the case. He also has my email address, but thus far, he has elected to neither confirm nor deny.

    There is an expectation that representatives, spokespersons, trustee/directors and those calling themselves "Directors" but where there is no legal meaning to the word as there is in Company and Charity Law, will act in a manner that does not bring their organisation and their constituency of interest into disrepute.

    So assuming, for lack of denial, that Gethin is Gerwyn, we have a situation where this organisation is fronted by individuals who may or may not be using pseudonyms (all we know of Gethin is that he is said to be UK) but where one of those individuals is also posting on at least one forum, under another name, in a manner, that at times, could not be considered professional.

    Can you not see a problem here?

    Can you not see why I and Ecoclimber and others have concerns?

    If someone purports to be representing the interests of others, then as a carer and advocate, I want to know with whom I am dealing. I don't do clutching at straws.

    Suzy
     
  8. Bob

    Bob

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    Just for information, this is what Jennifer Spotila, of the CAA, had to say about the BioBank and the Canadian Consensus Criteria...

     
  9. Bob

    Bob

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    I'm not aiming my comments at justin here...
    I'm just using his post as a starting point for my general comments.


    Everyone has a right to campaign on issues that they wish to, and groups of people have every right to set themselves up as a patient advocacy group. I don't think that's an issue in this thread.

    The issue here is that if a group sets itself up to represent ME patients, then the ME community has a right to scrutinise the organisation.
    Just as the CAA is scrutinised by the ME patient community, so any other organisations that set out to represent ME patients, should be prepared to be scrutinised by ME patients.
    And as this group, the IMEA, or its supporters, are posting information about themselves on this forum, then they invite scrutiny.

    If the IMEA is proposing to set up a meeting with Unger, with the intention of representing ME patients or the ME community, then we all have a right to question what that organisation are intending to say, and to make our opinions known.

    From what I know about the organisers, sometimes I agree with their opinions and sometimes I disagree, and sometimes I am not certain what their opinions are. Areas of uncertainty and ambiguity need to be clarified.

    For example, there's the issue that I raised earlier...
    The IMEA wish to use 'strict' definitions for ME, but also get rid of the term 'CFS'.
    They say that at the moment they wish to advocate for the use of the Canadian consensus criteria (CCC). But not all ME patients are happy about changing to these criteria, at least not without a full consultation and discussion with the ME community. Are the IMEA proposing to use the CCC for research only, for a clinical setting only, or for both?
    If we are going to use a more exclusive definition for 'ME', then many current CFS/ME patients will not meet the criteria for an 'ME' diagnosis using the new definition. So what will happen to those patients who do not meet the 'ME' new criteria? What term will they be labelled with? The IMEA is advocating that the term 'CFS' get dropped, so would the patients not meeting the CCC then just get labeled with the term 'Chronic Fatigue' or idiopathic fatigue? That's not going to go down well with many members of the community.

    The IMEA state on their website that ME is an HGRV associated disease.
    So what about any of us who have tested XMRV negative? What disease would those people be assigned by the IMEA?

    So, in short, I think it's right that we scrutinise any organisation that is set up with a mission to represent the ME community.
     
  10. Angela Kennedy

    Angela Kennedy *****

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    Thanks for this Bob.

    Mmn. The London criteria (or a watered down version of them) despite never having been published in ANY peer-reviewed journal, let alone a PubMed indexed journal, AND having at least two versions, was nevertheless used in PACE and published in the Lancet.

    Oxford was published in Journal of the Royal Society of Medicine, and is not available on PubMed as far as I can see, so doesn't look 'widely available' to researchers and clinicians.

    And we now have, since 2010, a research definition based on the CC, available from the American Journal of Biochemistry and Biotechnology no less, courtesy of Jason et al (which I believe IS Pubmed indexed?)

    Time for Jenny Spotila to make a new statement perhaps...?
     
  11. Bob

    Bob

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    I had meant to include this bit in my earlier post...

    This is the CAA's position on Fukuda:

    And just out of interest, this is what Jennifer Spotila, of the CAA, said about their position on a name change:

     
  12. Dreambirdie

    Dreambirdie work in progress

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    Excellent response.

    Thank you Suzy for all the work you do. Really! I so much appreciate your efforts.

    And P.S. I so envy your incredible brain. :hug:
     
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    oops, thanks for the correction.
     
  14. Wayne

    Wayne Senior Member

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    Gerwyn, extremely rude and hostile? Why who would have ever thunk it; just the last person you would ever expect to behave in such a manner. :rolleyes:;)

    Suzy, thanks for your continued posting on this subject. This connection between ME-CFS Forum and this newly and apparently hastily created organization calling itself IMEA needs to be fully exposed. I don't have the energy to do this, and very much appreciate yours and others' efforts in doing so.

    If somebody/organization is going to represent me, I would expect they have at least a modicum of interpersonal skills. Given your experience, and that of many others, I have absolutely no confidence that is the case. As such, not only do I think they have limited ability to help us, but I also feel there is high probability for them to do a great deal of harm. :(

    No thank you.

    Wayne
     
  15. Ernie

    Ernie *****

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  16. Dreambirdie

    Dreambirdie work in progress

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    What he said! ...especially the part I bolded... Though "at least a modicum" does not come close to describing the total lack thereof of the interpersonal skills of the fore mentioned parties.

    Remember what Julius once posted:

    Ditto there too!

    Any organization run by Gerwyn and Wildasiy--Patricia Carter (IMO) is bound to be a disaster.... for ALL of us.
     
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I've got to agree totally with this. If you google "Canadian Consensus Criteria MECFS" you get pdfs of the journal article at the top. I assume most scientists can gain access to the interwebs.
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    If I had my "druthers" means "If I had my way."

    Thanks for the info, didn't realize that. I believe in the US, lawyer means someone who has graduated from law school and passed the bar, but may or may not be currently practicing. That is the case with me. I once practiced, but am now disabled, but still call myself a lawyer. Attorney here might imply one is still practicing. Interesting the differences.

    I do agree that they need to clear up the Gethin/Gerwyn identity and if they are the same, it does concern me to an extent as well as the denomination of "directors". I understand why there is some questioning of IMEA given these and other concerns. Gerwyn and Patricia are banned here so they can't engage here personally and I there is a general denigration of Cort and PR's administration so I think they may not want to engage that much here. I think that is a mistake, if that is the reason, and not just that they are busy and sick, and that they should have a rep engage here.

    I think that when they talk about 'reclassification' they mean that a "NOS" was stuck on "CFS" and it was put under "chronic fatigue, unspecified" which it is not now under, though it is still in R.

    I agree with MEAgenda that the ICD-10 CM is a big issue. I think it is one of the two biggest issues (the other being the need to trash the fake definitions like Oxford and Reeves) for us. It may be set in stone as early as October and screw over Americans for years to come. The ICD codes are used in the US for insurance purposes and this makes them very important. It will also put/keep in doctors' heads that "CFS" is just 'unspecified CF". It's disgusting and very harmful.

    We need IMEA to come here and answer a lot of these questions. I PMd Ana yesterday. I have PMd Patricia just now.

    fwiw, my take on ME and "CFS", which i think is similar to IMEA is that the proper name for the disease is ME. It should be changed back to ME. Like with most diseases there is a spectrum and some actual cases will fall outside of most definitions as would be the case with CCC ME/CFS. I would just call those cases which are essentially ME, but have some atypical feature that makes them fall outside of CCC, "atypical ME", just as there is "atypical MS." Those people who have CF but don't have ME or any other known disease would be called what they have always been called: idiopathic CF. We can't include them in ME just to make their lives easier. We need to be absolutely clear and straightforward in all our dealings in order to counteract the mess that the charlatans have created. Putting pwICF in with ME just helps the charlatans and hurts pwME and ME science.
     
  19. insearchof

    insearchof Senior Member

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    I think both Suzy (posts #83-85) and Bob (at #89) nicely identify the concerns that are genuinely held with regard to the IMEA.



    .

    Hi Bob,

    I have taken the time to read the other thread you started on trying to reach consensus in the community of this issue. Having done so, I would encourage others interested in the points you make here, to read that thread.

    I believe that IMEA is not referring to classic/historical ME but simply CFS (CCC style perhaps) labelled as ME, a term that was coined prior to CFS and that belongs to the Ramsay/Hyde identified illness involving injury to the central nervous system as its key distinguishing feature as distinct from unremitting chronic fatigue for a defined period.

    I am not sure though, that anyone can say, that the traditional definition of ME is as ''exclusive'' as you would like to suggest, or that many existing patients would not fit the criteria.

    The simple fact of the matter is, we dont know that because:

    * the research and knowledge about ME and how to diagnose it (ie spect brain scans together with other criteria) and

    * published research on this area


    effectively died 25 years ago, when CFS arrived.

    For all we know, the opposite of what you state may hold true.

    Not many people would deny that they know little to nothing about classic ME. In fact many doctors today will tell you there is no such thing - that it does not even exist. And the above reasoning is why. It has been forgotten and burried under CFS. You do not go looking for what you believe does not exist, do you?

    Consequently, given the broad definitional operation of CFS, we dont know how many PWC are really in fact, ME patients denied a correct diagnosis.

    Whilst the point has been made elsewhere, that the growth in the number of PWC may be due to the failings of modern medicine with greater numbers of people ending up with the waste paper basket diagnosis of CFS, it may also be true that the growth in numbers of persons with CFS may in part, be due to the infectious spread of ME outbreaks, that are now going unchecked.

    Returning to the IMEA however, if it is calling for strict employment of terms, and they are calling for the removal of the term CFS and use of the term ME, then a strict use of term - on the basis of history, suggests that they are calling for the adoption of the Ramsay/Hyde/Nightingale ME. Yet the context in which they use this term suggests otherwise, and that perhaps they are interested in use of the name ME to plaster over CCC form of CFS. I say this, because for an ME group they seem overly focused on CFS issues and if they were promoting classic ME, they would for exmaple, be calling for a Ramsay/ Nightingale definition for research purposes, not the CCC one.

    Having said that, I do acknowledge it may be possible (though very difficult, I dont know) for a group to represent the interests of both classic ME and CFS. If though this is their intention, then the responsibility for transparency and clarity when using the terms ME and CFS, becomes much higher.

    However, it is by no means clear at this stage who they purport to speak on behalf of.
     
  20. Cort

    Cort Phoenix Rising Founder

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    That's true it did but it wasn't doing much good before that. If you look at the ME research published before CFS came on the scene - it amounted to very, very little. If you go to Pubmed and type in chronic fatigue syndrome and then go back to the first page...you'll see the ME research done..

    I'm not saying its not a good term - I like it better than CFS - but despite the fact that it is a better term - it never did much good in the UK. Ironically the 'discovery' of CFS in the US in the early 1980's is what got the disorder into the research agenda to the extent it has gotten there. Its kind of strange....
     

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