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IMEA-New M.E. Association

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

  1. Ana

    Ana *****

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  2. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Hi, thanks for posting. Is this connected to the UK's ME Association in any way?
  3. garcia

    garcia Aristocrat Extraordinaire

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    No, absolutely not!
  4. muffin

    muffin Senior Member

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    Sounds great!

    The more advocacy orgs we have fighting the same enemies the quicker the route to a CURE for those of us with ME/CFS and for those hundreds of millions that are infected with the newly discovered Retrovirus (and either have/had the diseases/cancers associated with it or will have them - and/or ME/CFS).

    Might I suggest hitting the UK first since the Weasel and the rest of the sociopaths have a lock down on all critical info going into the UK on ME/CFS and the Soviet-style psychological "brainwashing" attempts they call CBT/GET. I think many of us believe that the Weasel et al are really just trying to kill off the ME/CFS sick via GET - the ultimate death march for very sick people. Double up your fists and have a go at the UK system - it's beyond deplorable and the UK people need help from ALL areas and groups. Thanks - M.
  5. SpecialK82

    SpecialK82 Senior Member

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    Thanks for posting! I second hitting the UK first - they are in the spotlight now and maybe we could steal it if we could come up with an effective offense.
  6. Kina

    Kina Moderation Team Lead

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  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Death march is right. They are committing crimes against humanity. They see how we have been too sick and disbelieved to stop them, so the best strategy is to make us even more disabled and closer to death and more disbelieved with GET and the evil version of CBT.

    Best of luck to IMEA. Thanks for stepping up your fight even harder!!
  8. taniaaust1

    taniaaust1 Senior Member

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    kjm.. What does it matter what forum have started this new association....

    I think it sounds great and an International CFS association with these aims is needed.
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    If the UK "CEO" and the international "Directors" of IMEA are going to be posting on Phoenix Rising or on any other platforms then I hope that all of them will be doing so openly and transparently.

    If you go to the website of IMEA

    http://www.imeassoc.com/

    it is difficult to find any information about those who have created this new international advocacy organisation, which is already announcing that it is in the process of setting up a meeting with Dr Unger of the CDC and calling for topics for potential discussion.

    One week the idea of a new organisation was being floated on ME-CFS Forum, the next, this new org is announced. Understandably, some folk assumed that the org had been created as the public mouthpiece of ME-CFS Forum.

    But that is apparently not the case.

    It is the case that Patricia Carter is an admin for ME-CFS Forum, which is hosted by the pseudonymous Since - the forum owner previously known as CFS Since 1998. But the org was set up independently of ME-CFS Forum and without prior discussion, it would appear, with the members of ME-CFS Forum, to whom it came as something of a surprise. The members of ME-CFS Forum do not appear to have been consulted over this pseudo org's aims, objectives, management etc. It was sprung on them overnight.


    I've been involved in ME activism and advocacy since mid 2002 and have UK and international contacts. But apart from Patricia Carter, who has publicly posted about her background before she became ill, none of the others are known to me, at all, including the UK "CEO".

    The website gives no information, no bios, no profiles, no disclosures of affiliations etc of any of those involved. In fact, apart from a message from the CEO and Carter's name on the website (and a page of material by "Gerwyn" - not even prepared, evidently, to have his full name put to the material he has authored) the names of the other "Directors" are not given - though they were given in the announcement that was circulated earlier this month, viz:

    CEO: Louise Gunn, United Kingdom

    DIRECTORS:

    Keith Baker, United States

    Patricia Carter, United States

    Robyn Erland, United States

    I. J. Pedersen, Norway

    Gethin Price, United Kingdom



    Any group of people can register a top level domain, set up a website, call themselves "CEOs", "Directors" or whatever, of an "organisation".

    There is nothing on the website that states whether the group intends to register as a US 501c charity org or with the UK Charity Commission (although with an income under a certain level there is no longer a requirement in the UK to register with the Charity Commission and submit year end accounts).

    In the UK, charity trustees are also directors of the organisation and have legal responsibilities for how they conduct their affairs but are these "Directors" also trustees? If so, there is no information about how the committee is constituted and no copy of any governing document or Mem & Arts in accordance with which the org operates.

    There is nothing about how any donations received will be handled or by whom.


    None of the above should be seen as an attack on IMEA or its objectives - these are purely statements of fact.

    If any group of people comes together, gives itself a name, creates a website, circulates a mission statement and claims a mandate to represent patients' interests and to represent patients' interests at meetings then I expect to be able to establish the above from the website and I cannot do that. Speaking as a former graphic designer, now a carer and advocate, the site and the set up and the lack of information does not inspire confidence.

    If I am engaging with any organisation reps or staff on forums or in the comment sections of media articles or on whatever platform then I want to know with whom I am dealing and what their responsibilities are within that org and to whom they are accountable.

    Why are so many people on forums so unquestioning?


    One of the "Goals" within the Mission Statement that IMEA circulated earlier this month is:

    * Until science provides us with a better name, we recommend the use of the name "Myalgic Encephalomyelitis" (M.E.) for this illness and elimination of the term "Chronic Fatigue Syndrome" (CFS)


    But in its announcement that IMEA is hoping to secure a meeting with Dr Unger (CDC), one of the suggested topics that might be raised is:

    * Does the CDC believe that it is right to reclassify CFS in ICD-10CM? And if no, what are they doing to actively stop the reclassification?


    For a start, it needs to be understood that is not the case that CFS is being "reclassifed" within ICD-10-CM.

    It is the case that for ICD-10-CM (the US specific "Clinical Modification" of ICD-10 that the WHO has authorized US agencies to adapt for US only use), that Chronic fatigue syndrome is proposed to be retained in the R codes (which will be Chapter 18 in ICD-10-CM, under R53 Malaise and fatigue > R53.82 Chronic fatigue syndrome NOS;

    whereas it is being proposed that for ICD-10-CM, the US will be adopt for the first time, the coding of PVFS and (B)ME in Chapter 6 Diseases of the nervous system, at G93.3, in line with the international version of WHO's ICD-10.

    So the retention of CFS in the Symptoms and signs and ill-defined R codes chapter for ICD-10-CM is a legacy from ICD-9-CM, which itself, was a US specific "Clinical Modification" of the long since retired WHO's international ICD-9.


    Secondly, there appears to be a disparity between the call for

    "...elimination of the term "Chronic Fatigue Syndrome"

    and

    * Does the CDC believe that it is right to reclassify CFS in ICD-10CM? And if no, what are they doing to actively stop the reclassification?


    So just what is IMEA's position on the long standing proposals for coding PVFS, ME and CFS for ICD-10-CM?

    For I do not see how, on the one hand, IMEA could support the inclusion of CFS at G93.3, along with PVFS and ME (as it is in the Canadian ICD-10-CA and in proposals for international ICD-11) yet at the same time call for the elimination of the term "CFS".

    Am I missing something? Or is IMEA pitching itself at both the "split CFS from ME and to hell with the collateral damage" camp and the "until the science has it sorted, it's safer for patients with a CFS Dx or who may still be given a Dx of CFS in the future, despite the new and unfamiliar ME coding, if CFS is coded along with PVFS and ME at G93.3, and not left to rot in the dustbin that is the R codes" camp?

    Suzy
  10. eric_s

    eric_s Senior Member

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    I agree with some things you say, Suzy, but i think we should give them some time to fix these things.

    There was some discussion on "ME/CFS Forums" about founding an international organisation some months ago, i think, and when i got the anouncement, i thought IMEA is the product of that discussion. But i'm not sure, because i don't read that forum much.

    This afternoon the names of the directors were mentioned on the website and they still are at this moment, plus there was some biography and statements.
  11. insearchof

    insearchof Senior Member

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    I think your view is valid Eric, but Suzy raises some very important issues indeed and I would like to know the answers to many of these questions also. I think these issues have become pressing because this group has thrown themselves directly into the lions den on an very important topic: ICD modifications. I would like to know who and what this group is on about. Are they going to do more harm than good? Do I want to support them or distance myself from them? Unfortunately, their decision to take such action now, does not, in my mind, afford them the luxury of time to attend to these matters/effectively communicating to the community they purport to represent.

    House keeping matters and addressing these fundamental public issues for a new org are important I think, to establishing credibility and support in the general ME community. Right now, I think youhave to be able to win the support first and fore mostly of your community. Political heavy weights like the CDC, have ben around a long time and will politely dismiss them out right, if they do not have strong peer support. The CDC knows who the key groups and players are.

    I think a new org needs first and foremost to doing a good sell job to their potential supporters, before it runs off to attend to business. It needs to be able to tell them clearly who it is, what it stands for, the issues it will address and where it stand on them and why the community should get behind it and support it. To do anything less is kind of arrogant-there is almost an assumption that the community will simply endorse them and any activity they deem appropriate. Once upon a time that might have been acceptable, but right now, there are lots of people disillusioned with certain gropus and organizations causing people to look more closely at these orgs and what other are doing.


    In another thread, there is some excellent discussion on this and the current fragmentation/division existing between these divergent groups and individuals and how this is undermining the ability to unite the community in a strong powerful and effective way. So, one, at this juncture might have good reason to ask the questions Suzy raised and indeed consider whether we need another organization? If yes, what does this one have to offer that other existing orgs don't? What is their unique selling point or point of key differentiation?

    Unfortunately, given that this new group is intent on meeting with the CDC now, allegedly representing you and I, I think we have a right to answers now. If they are professional and a competent organization, they will have had already attended to these house keeping issues. If they have not, then it is in the interests of those they claim to represent, to know this also.
  12. Kina

    Kina Moderation Team Lead

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    Good question. I guess it comes down to who you want to represent you. The administors of this new association have alienated most of the other advocates that try to do good work for people with ME/CFS and researchers who are looking for answers. They have outright insulted anybody who dares to question XMRV regarding what role it plays in ME/CFS. I mentioned the forum because before people put blind faith in those who are supposed to be represenatative of us, they might want to check out how these people treat others. If they are checked out by organizations who might want to listen to them, if the organization traces them back to the forum, they may have serious reservations. If you don't believe me, go join the forum, and search for Miller, Cort, Phoenix Rising, PANDORA, Marly Silverman etc. Gerwyn Morris, probably aka Gethin Price constantly attacks people, on and off the forum, including retrovirologists who have vastly more knowledge and experience than he does. So basically, it does matter, because I personally would not want people representing me whose sole aim is not to get along with all the other advocates that are trying to work with us. It's about credibility and respect. Hope that makes sense.
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    No, Eric, IMEA was sprung on the members of ME-CFS Forums, despite the discussions which had been taking place over the past few weeks. This is an independent venture.

    It is looking likely that IMEA "Director" "Gethin Price" is "Gerwyn Morris".


    I note from Co-Cure, today, further concerns about this "organisation":

    ******************************************

    From: "Pat Sonnett"
    To: <CO-CURE@LISTSERV.NODAK.EDU>
    Sent: Tuesday, March 22, 2011 2:55 PM
    Subject: [CO-CURE] ACT: Write to the IMEA


    The International ME Association (IMEA) is in the process of scheduling
    a meeting with Dr. Elizabeth Unger at the CDC and is soliciting patient
    input regarding questions to be answered during the meeting. One of the
    questions posted on the site at

    www.imeassoc.com/IMEA_to_meet_with_CDC.html includes the sentence

    "Patients do not want the CAA biobank samples used in studies."

    Regardless of how one feels about the CAA, its BioBank is composed of
    ME/CFS patient samples from Dr. Lucinda Bateman, Dr. Stephen Gluckman,
    Dr. Nancy Klimas and Dr. Charles Lapp, highly respected pioneers in the
    ME/CFS field. These patient samples could provide valuable information
    for research and to specifically ask that they not be used would be a
    disservice to the ME/CFS community. We all want to get well and
    excluding these samples would only serve to impede our progress.

    Please write to the IMEA at info@imeassoc.com and ask that the statement

    "Patients do not want the CAA biobank samples used in studies." be
    removed from the questions/statements to Dr. Unger and the CDC.

    Pat Sonnett

    ******************************************

    Suzy
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Well put, insearchof.

    Suzy
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I am advised that there are now bios published on

    http://www.imeassoc.com/Page_2.html

    There is no bio for "Gethin Price".


    I note that the "CEO" states that:

    "The other pressing issue is the USA's diagnostic manual, ICD-10CM. Though there is disagreement about the relationship of CFS and ME, the proposed reclassification of CFS to "R53.82 Chronic Fatigue, unspecified" cannot be allowed to happen. This change would also have ramifications for the WHO's ICD-11, and the world wide population with this disease."

    I have already set out that for the forthcoming US "Clinical Modification", CFS is not being "reclassified" it is being proposed to retain it in the R codes as a legacy from ICD-9-CM.


    I should also like to know what evidence Ms Gunn has for her statement

    "...This change would also have ramifications for the WHO's ICD-11 and the world wide population with this disease..."


    ICD-10-CM is being developed from ICD-10 by US agencies. These agencies are authorised by WHO Geneva to develop an adaptation of ICD-10 for specific US usage called a "Clinical Modification" of ICD. Canada and Germany, and a few other countries, are also authorised by the WHO to adapt "Clinical Modifications" of ICD.

    ICD-11 is being developed independently of ICD-10-CM by an international Revision Steering Group that is accountable to WHO, Geneva.

    Proposals for ICD-11 are that all three terms are classified within Chapter 6 Diseases of the nervous system, where CFS is proposed as an ICD Title entity with (B)ME specified as an Inclusion term [1].

    So I shall ask her on what evidence she bases her website statement.


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


    Suzy
  16. eric_s

    eric_s Senior Member

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    I see things a bit differently, but no problem, my view is only mine and i respect that yours might be different.

    I agree about the sentence "Patients do not want the CAA biobank samples used in studies." though, they should say "a number of patients" or something like that.

    I think anybody can start a new org if that person feels like it and should do so, if he thinks it's the best thing to do and i don't see a need to go look around and win support first. I think it's actually a good approach to start up, go to work and then, if people in the community like what you are doing, they will rally behind that org. So i liked the news that they will go to see Dr. Unger.
    It's another question if we don't already have enough organisations, of course. I also think too much fragmentation will hurt us. But if a new organisation is needed (i'm not sure about that) then i think it's ok to start one and maybe another one will disappear. I think it's a natural process and also necessary, what matters, in my view, is that we can bring the weight of our entire community into our effort to get to have good treatments available (and in a reasonable timeframe, we don't want anymore delay) in one way or another. That everybody is behing some organisation or at least supporting research and that then those forces coordinate and cooperate with each other, if possible.
    In this regard it would of course be problematic if the people behing IMEA don't want to cooperate with anyone else, if that is true... But i guess in this case, if the other orgs do a good job, IMEA will not be able to win much support and so they would also not matter very much.

    One thing i fully agree with, they need to be a "real" association, foundation, whatever, in the legal sense, registered (if that's required by the local law) and the identities of the people behind it have to be known. Anything else can't be taken seriously by the people we need to convince or work with and also could not be trusted to support financially. I also hope they will work on their website a bit more, but it's very new, so they will most certainly do that.

    I can't say much about the ICD issues because i don't know much about that and don't have time to really get into it at this moment.

    I don't think there's much to lose if they get to meet people at the CDC. As long as they don't take away a "slot" for another, better organisation. Even if they would not achieve anything or even leave a bad impression, as long as there are other groups also meeting with the CDC, i don't think that would hurt very much. I think it's a chance and there's no big risk.
  17. insearchof

    insearchof Senior Member

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    Hi Eric

    You raise valid points. It is a fast moving point in the general comunities history, with lots of momentum. The old and ineffective will certainly give way to the new and more effective. My main point I guess is, that they should have their house in order if they want to inspire confidence and credibility. That said, I would also like to see details about their agenda and what they are proposing re ICD in particular, given that seems to be a priority.
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Email to Ms Gunn, "CEO" of IMEA

    I have written to Ms Gunn about her understanding of proposals for ICD-10-CM.

    I have also said:


    About ICD-11, you have stated:

    "The other pressing issue is the USA's diagnostic manual, ICD-10CM. Though there is disagreement about the relationship of CFS and ME, the proposed reclassification of CFS to "R53.82 Chronic Fatigue, unspecified" cannot be allowed to happen. This change would also have ramifications for the WHO's ICD-11, and the world wide population with this disease."


    ICD-11 is scheduled for implementation in 2014/15.

    ICD-11 is being developed independently of ICD-10-CM by an international Revision Steering Group that is accountable to WHO, Geneva. Proposals being developed by the various ICD Revision Work Groups and entered into the ICD-11 drafting platform are overseen and approved by senior WHO Geneva classification experts.

    ICD-11 is in the Beta drafting stage with a Beta draft scheduled for release in May, this year, though this may be delayed.

    Proposals for ICD-11 are that all three terms, PVFS, CFS and ME, are classified within Chapter 6 Diseases of the nervous system, where CFS is proposed as a Chapter 6 ICD Title entity with a Definition and other descriptive parameters and has ME specified as an Inclusion term.

    See this post on my site:

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


    The version of ICD that is used in over 110 countries is currently ICD-10. The US has been very slow to develop a "Clinical Modification" of ICD-10. When the majority of the world will be moving onto ICD-11, the US will continue to use the forthcoming ICD-10-CM for many years before it moves on to ICD-11 or a "Clinical Modification" of ICD-11.

    ICD-10-CM will be used only within the US. Retaining CFS in the R codes for ICD-10-CM, will place the US out of sync with the Canadian ICD-10-CA and with proposals for ICD-11.


    Would you please clarify on what documentary evidence you are basing your website statement:

    "...This change would also have ramifications for the WHO's ICD-11 and the world wide population with this disease..."

    which may cause confusion in readers of your site who are following the development of both ICD-11 and the US specific ICD-10-CM.

    I look forward to your responses.


    Suzy Chapman
    _____________________

    me.agenda@virgin.net
    http://dxrevisionwatch.wordpress.com
    http://meagenda.wordpress.com
    http://www.facebook.com/MEagenda
    http://twitter.com/MEagenda
  19. Cort

    Cort Phoenix Rising Founder

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    I agree with several of the items on their agenda (which I can't pull up now) but I think an effort really has to be made to divorce concerns about the CAA's approach to advocacy and their approach to research. The BioBank is now associated with Dr. Klimas, Dr. Lapp, Dr. Bateman and Dr. Peterson and is adding new doctors to the mix. I would not be surprised to see Dr. Cheney in there, Dr. Montoya and who knows who else.

    I would be surprised if Montoya doesn't end up in there - that sounds like the type of professional collaboration he would love to join. The Biobank would benefit enormously by having samples from pathogen positive patients.....what a great sample set that would be!

    Yet this organization is actually asking the CDC not to use the samples gathered from these doctors in their research...because they are... bad doctors???. If you can't trust these people who can you trust? One thing to consider is that all these doctors do trust the CAA and are happy to have their patients registered in the Biobank. Since Lenny Jason helped produce the questionnaires - its pretty clear that he trusts the Biobank as well.

    You could look at it another way....I trust Dr. Jason, Dr. Peterson, Dr. Klimas and Dr. Lapp - and they trust the CAA Biobanks - so I trust the CAA's Biobank program. IF its good enough for them it's good enough for me...

    I understand the angst about the CAA - but when it overflows into ripping a really good research program, which has, by the way, garnered several NIH grants - and those come along very rarely - I think its time to step back and hone ones approach so to speak.

    The answer to CFS could very well come out of that Biobank...By the end of this year I imagine quite a few physicians will be registered in it..I think they already have over 1,000 patient questionnaires... and researchers will want to use those samples.. We already had an example from the spinal fluid study and Dr. Vernon's comments that researchers could use the BioBank samples to look for the proteins found.

    I just don't get it....good physicians....opportunities to dramatically cut down the speed of research and reduce costs...having all these well documented samples together in one place....opportunities to finally subset patients....that seems like a great deal to me..That's what I want to have happen.
  20. SpecialK82

    SpecialK82 Senior Member

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    The biobank was put together so that researchers would not have to waste precious time waiting for samples. If there is a scientific reason why the biobank samples should not be used, please share that with the patient community and let us discuss it. If it is simply because some do not agree with CAA politics, what does that have to do with research?

    Please put patient welfare above politics so that we all can win!

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