1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

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

    Messages:
    1,819
    Likes:
    558
    UK
    Give up. There is a big glitch here and I cannot post the entire text of what I want to post. Grrrrr.
     
  2. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Screenshots from the ICD-11 draft revision platform (iCAT)

    Blanked - cannot post more than a few lines, although Preview displays in full.
     
  3. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Blanked - cannot post more than a few lines, although Preview displays in full.
     
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Screenshots from ICD-11 drafting platform (iCAT)

    OK, I've just tried to post using Firefox but there is the same glitch in both IE8 and FF. I'll try again later.
     
  5. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    154
    Essex, UK
    Thanks Suzy - the confirmation of the chapter 6 category is great.

    Thanks for all the work you've done on this. Obviously the new DSM 'somatic symptoms' categories has also massive implications for all people with somatic (bodily) illnesses, and your research here has been particularly invaluable.
     
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    If I can post the rest of that response, I will.

    Suzy
     
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    This is the rest of that response to Angela that I was previously unable to post:

    Blanked as cannot post beyond a certain number of lines.
     
  8. Otis

    Otis SeƱor Mumbler

    Messages:
    1,116
    Likes:
    116
    USA
    Suzy,

    Are you trying to post anything besides text? I ran a quick test and couldn't reproduce the problem. I made admins working on the upgrade aware of of your issue.
     
  9. Bob

    Bob

    Messages:
    8,920
    Likes:
    12,645
    South of England
    Suzy, I experienced a similar problem early on in the switch-over, but luckily it only happened to me once or twice.
    Have you tried editing an existing post, and inserting your text?
    It worked for me each time I did that.
    It might be worth a try, if you are still trying to post.
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    I have been on mecfsforums.com for a few months. The environment is more rough and tumble than here, but I like it mostly because of that. There are plenty of things said there that i think are too extreme, but i like that people are able to say these things and debate them, unlike here.

    I recognize three people from that forum in IMEA: Patricia Carter, Keith Baker and Gethin Price (if he is Gerwyn Morris) and I respect them all. I am in general agreement with the positions of Patricia and Keith and those posts of Gerwyn's that i understand (i am not a science person). I am fully behind all of the positions listed on their website. It is certainly the org that i most agree with and I think they represent pwME better than the major US orgs.

    Patricia, Keith and Gerwyn (i don't know who the others are) are quite intelligent and are fully aware of the issues surrounding the nomenclature of the disease. They represent pw ME, which is called "CFS" in the US, not what is called "CFS" in the UK. They support CCC, not Fukuda or Oxford.

    WillowJ: I don't understand the objections to Gerwyn's being a lawyer and scientist since this along with his study of ME, involvement in the ME 'community' and intelligence make him extremely knowledgeable and qualified to advocate for us. Bad spelling and punctuation doesn't negate these positive attributes.

    "Director" is a legal construct reserved for directors of a corporation, who have specific fiduciary duties, as i understand it. If this is the case, IMEA must stop calling these people directors. I'd also like clarification on who Gethin is- Gerwyn or someone else?

    I agree with IMEA that the CAA biobank has done a bad job in that it didn't use CCC (they used Fukuda + PEM) and I want all studies to use CCC. Nevertheless, I would like to see that request to Unger dropped since we need to focus on the top priority problems.

    If i had my druthers, IMEA would have given a heads up to people before unveiling itself, clean up the website and be a bit more transparent and communicative. But at least for me these are not huge issues yet, since I am very confident in Patricia and Keith's ability to represent ME patients intelligently and effectively and I see they are working to remedy these issues which seem mostly to be a function of having to start slowly because of health issues. I am very glad IMEA is here and that they will be meeting with Unger.

    re Oxford definition: it is the POS to end all POSs and must be driven into the sea along with those who 'study' it.

    ETA: edit to reflect Gerwyn got ME in 2005.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    these links were shortened, so they don't work.
     
  12. Kina

    Kina Moderation Team Lead

    Messages:
    5,859
    Likes:
    4,758
    Ontario, Canada
    Justin -- I fixed the links.

    and you stated WillowJ:
    According to Gerwyn's profile on this site he has had ME since 2005, so unless he is 6 years old, he is not a "life-long ME patient" -- see http://phoenixrising.me/forums/member.php?982-gerwyn-morris
     
  13. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Suzy



    Bob's comment was not, as I understood it, a reference to the ICDs/ICD issue, but a general comment in reference to what I spoke up about - the IMEA's confusing use of the terms ME and CFS, as well as their proposed goal to have the term CFS changed and substituted with ME. Bob referred to a general thread on this issue, which makes me believe that the proposed change was a reference to the name change. He then stated that by contrast, he did not have a lot of knowledge on ICDs and their 'definitions'.
    You correctly pointed out, that there are no definitions of ME CFS or PVFS for the purposes of ICDS. But that was not the primary focus of Bob's issue or mine. Though I think it is useful and important to acknowledge.


    Thank you Suzy, I am aware of these matters.

    Suzy, I began my research of the ICD's back in 2006/7. I did so as a person with a severe case of ME. Being largely bed and house bound during this period I was reliant on the internet. During this time, I found the WHO search engine to have a number of problems. I remember one point in time where the terms CFS and ME returned nothing at all under the ICDs. I ended up collaborating with a couple of other researchers in this area, and they reported the same problems. However, due to these hiccups I had no other alternative than to source material from other places, and had to scrutinize it.

    Enquiries later made with my own State library indicated they only had one volume. I found that I might be lucky to find a complete set at the Australian National Library - but chances of ever getting there were about the same as flying to the moon.

    With the assistance of my state library, I found that the current ICD volumes were reportedly available at one of the large med faculty libraries in my state, but on enquiry with that library was told, no - they definitely did not keep them. A major university associated with a teaching hospitals library was the only place in my state that appeared to have copies of all ICD volumes/indexs required. However, it was not freely and readily accessible to members of the general public.

    From collaborative efforts, I was able to cross reference and check the accuracy and understanding of the material I found and having read your writings on the subject, I can report that my research in terms of its accuracy, pretty much accords with your own findings, despite all the obstacles I personally encountered along the way.

    I might add, at that time, there was little in terms of wiki pages (though some appeared later I think) for me to rely on, and no blogs of your ilk or papers on the subject matter, that are now available online.

    The experience was not a cake walk and it produced a number of crashes in my health along the way.


    This is what I had to work through which I found confusing:


    1. Divergent and historical ICDs which were confusing coming in cold to the subject.

    This is because coming in cold, I was unaware that of the following:

    *ICDs are issued by the WHO every 11 yrs or so and must be adopted by member countries.

    I subsequently learnt that some WHO member countries adopted and were using some versions ie ICD 10 whilst others had not (ie USA) and remain on earlier versions ie ICD 9. I learnt that whilst the UK, Canada and Australia for example, had adopted ICD 10 and had been using it for many years, (Australia adopted it 1998 or thereabouts) the USA had not. It was still using ICD 9 (CM) but without this knowledge and understanding why it was so, it was confusing.



    * some countries are permitted to make modifications to the origional WHO version.

    Whilst I would find that some material would refer for example to ICD WHO10, and other documents or sources (in retrospect, American sources) ICD 9, some also referred to ICD 9 CM. I learnt that ICD 9 CM meant ''clinical modified' version and it applied to the USA. Set against the above knowledge, it made sense. Without it, it was confusing with my wondering was ICD 9 the correct document, or ICD 9CM? and why did the UK and Australia reference ICD 10 AM? etc, etc.

    2. Documents refer to ICD material in the context of mental health, mortality, stats and processes.

    This added to confusion, until I learn that the ICDs are a set of volumes - not just one and they cover subjects other than classification of diseases for diagnostic purposes.

    3. ICD documents made reference to divergent terminology

    For example in Canada it is called ICD 10 CA. This is referred to as an extension which some countries add to distinguish it from the origional WHO version ie ICD 10Then you might come across this ICD 9 CM a reference to the clinically modified version of the WHO origional ICD by the USA. I have already touched on this, but again, initially it added to my confusion.

    4. Interpretation and application of the diagnostic codes

    Then, there was a learning curve on how to give meaning to and interpret the documents ie: tabular body, alphabetical index, and tools to aid in understanding how the classifications might be used and read.


    The community is very fortunate indeed to have your wonderful contribution on the subject. I wish it had been available to me a few years ago. My point made to Bob, was that it has, for a long time, remained confusing and largely inaccessible to the community - for the very reasons I expressed. I acknowledge however, that today - it is not as inaccessible. All the same, it is not light reading, which would probably deter most people.


    ISO
     
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    @ Otis and Bob

    Thank you Otis for alerting the admins. I haven't tried yet, today, with a longish post, but will do so shortly.

    It was happening to posts with all text, and also a mixture of text and images grabbed from my site. It was happening with both a fresh post and with edits to an existing post. As I say, the Preview displays all the post but when it is uploaded only a few lines will display.

    I'll try again shortly.

    Thanks,

    Suzy
     
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Do you not consider that Gerwyn should have been transparent about whether he is IMEA "Director" Gethin Price, especially given that the IMEA site has material attributed to "Gerwyn" on it?

    The statements by Ms Gunn (IMEA "CEO") around ICD-11 needed challenging. I have received no response from her as yet.


    If Gerwyn has a law degree, in the UK, that does not make him a "lawyer" - not unless he is licenced to practice law. "Lawyer" has a specific meaning in the UK and is not applied to everyone who has done a basic law degree, which is quite a common degree to take at university, but has not gone on to qualify to practice as a lawyer.

    In the UK "Company Director" has a legal meaning. In the UK, charity trustees are also the organisation's Directors, with certain legal responsibilities. Calling oneself "Director" of an organisation may mislead the public into assuming that the organisation is a limited company registered in the UK with Companies House or with the UK Charity Commission (Ms Gunn is UK).

    I would also like Gethin Price to clarify whether he is Gerwyn, especially as the name "Gethin Price" is being used to respond to journal papers using text that mirrors material authored by Gerwyn and given that material by "Gerwyn" is published on the IMEA website.

    I agree, especially since the concept of a website and possible org associated with ME-CFS Forums was under general discussion on that forum.

    I'm afraid I am not familiar with the meaning of "druthers".

    It is not clear whether IMEA has secured a meeting with Dr Unger; whether this will be a face to face meeting and who will be attending; whether this will be a conference call; or whether this will be as part of a meeting at which other advocacy groups are involved. All the notice says is that IMEA is in the process of setting up a meeting. Dr Unger may not consider that IMEA has sufficient credentials yet to warrant being given meeting time.

    Suzy
     
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Well, it looks as though my glitch has not resolved, this morning, at least not for new posts, though responding to the posts of others seems OK.
     
  17. In Vitro Infidelium

    In Vitro Infidelium Guest

    Messages:
    646
    Likes:
    280
    It's probably to do with the new forum software - a common problem across many forum hosts sees copy and paste not working from MS Word. To paste more than a single paragraph you may need copy from a NotePad or maybe Wordpad version, with the inevitable loss of formatting. Sometimes copying one para at a time from Word, will work, but even then any fancy formats - bullets etc tend to get lost.

    IVI
     
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    On one post, it's repeatedly stalling at the point of an acute accent on a name, it won't go beyond that point.

    But I am also having problems with a longer post that contains images and text, but where there is no accent on characters. I'll try posting a para, then adding the rest in bits, but if I can't make it work I'll have to stop posting altogether as much of what I post is pasted from emails or Word docs or from my text on my own sites.

    Suzy
     
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    (I'm posting this para by para.)


    ICD Revision Steering Committee (RSG) is discussing the potential for an additional Multisystem Chapter. There is an ICD-11 Discussion document here:

    http://sites.google.com/site/icd11r...m_diseases_20100818-1.docx.doc?attredirects=0

    Discussion document: Multisystem Chapter, authors: Aym(acute accented "e"), Chalmers, Chute, Jakob.

    "ICD has traditionally grouped diseases by aetiology and by affected organ system. For ICD-11 the creation of a new chapter for multisystem disorders has been proposed. The following text sets out the rationale for and the possible scope of a multisystem disorders chapter."

    [This document contains a Literature search reference at 119 to the Maes and Twisk paper, Treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a multisystem disease, should target the pathophysiological aberrations (inflammatory and oxidative and nitrosative stress pathways), not the psychosocial "barriers" for a new equilibrium. 2010: Ireland. p. 148-9.

    It also contains a Literature search reference at 118 to published response to Maes and Twisk paper by Luyten, P. and B. Van Houdenhove, Treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a multisystem disease, should target the pathophysiological aberrations (inflammatory and oxidative and nitrosative stress pathways), not the psychosocial "barriers" for a new equilibrium - Response to Maes and Twisk. 2010, ELSEVIER IRELAND LTD, ELSEVIER HOUSE, BROOKVALE PLAZA, EAST PARK SHANNON, CO, CLARE, 00000, IRELAND. p. 147-147.]


    ICD Revision Steering Committee (RSG) is also discussing the future of the R code chapter in this document:

    http://sites.google.com/site/icd11r...ningtochapter18ofICD110810.doc?attredirects=0

    Signs and Symptoms Considerations for handling categories and concepts currently found in chapter 18 of ICD-10, "SYMPTOMS, SIGNS AND ABNORMAL CLINICAL AND LABORATORY FINDINGS NOT ELSEWHERE CLASSIFIED", (R-codes), authors: Aym(acute accented "e"), Chalmers, Chute, Jakob.

    "Background

    "There have been requests from certain quarters to redistribute R-Categories to the relevant system chapters of linearized versions of ICD to increase their overall visibility and utility both for specialist use and for primary care. This document aims at addressing the different points around this chapter and to propose the way forward for ICD-11.

    "Rationale for Chapter 18
    The chapter was designed for circumstances in which no diagnosis is formulated and the only information available for coding is a sign, symptom, some laboratory finding, or a generally ill-defined description of the patient's illness. Also, sometimes such a condition presents a health problem in its own right and is recorded in addition to the known cause."



    Both ICD-11 Discussion documents can be accessed from this page on the ICD Revision Google site:

    http://sites.google.com/site/icd11revision/home/face-to-face-meetings/icamp2-2010/documents


    Suzy
     
  20. maryb

    maryb iherb code TAK122

    Messages:
    2,926
    Likes:
    2,064
    UK
    quote justinreilly
    'But at least for me these are not huge issues yet, since I am very confident in Patricia and Keith's ability to represent ME patients intelligently and effectively and I see they are working to remedy these issues which seem mostly to be a function of having to start slowly because of health issues. I am very glad IMEA is here and that they will be meeting with Unger'

    I agree totally, why not wait and see what comes out of the meeting, why all the negative comments? and BTW who really cares who,what,how long you've been sick for??? They aren't criminals or scamming con men.
    I wish people would just be a bit more positive about things like this, just let them get on with doing something that may have a good outcome.
     

See more popular forum discussions.

Share This Page