Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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The Strategy Behind Renaming and Redefining CFS

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Ember, Feb 13, 2015.

  1. Ember

    Ember Senior Member

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    https://www.facebook.com/jerrold.spinhirne?pnref=story

    The Strategy Behind Renaming and Redefining Chronic Fatigue Syndrome in 2015
    By Jerrold Spinhirne
    More...
     
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  2. Bob

    Bob

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    I wish people would read and consider the report and take time to reflect on the recommendations before leaping to condemn everything. Knee-jerk wholesale condemnations are being frequently posted before anyone else has had time to read, digest and reflect. I find it ironic that the new criteria are very similar to the CCC, yet many of those who wanted the CCC implemented aren't happy with the new criteria.

    Edited. My original post has clearly (unintentionally) caused offense, so I have amended the wording slightly.
     
    Last edited: Feb 16, 2015
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  3. Ember

    Ember Senior Member

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    By supporting the inclusion of ME with these errors, the IOM Report covers over the fact that ME has been defined as a separate disease: “In the World Health Organization’s International Classification of Diseases, Tenth Revision, which will be implemented in October 2015, the clinical descriptions of ME and CFS are identical (sic)...” and “While all of the criteria make clear that they are describing the same illness (sic), some vary in the terminology used to refer to the illness or to specific symptoms.”

    In fact, ME and CFS are mutually exclusive diagnoses in ICD-10-CM. According to the AHRQ Evidence Report (December 2014):
    Indeed, the ME Primer recommends that patients who satisfy the ICC should be removed from the broader category of CFS: “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.” The IOM Committee misrepresents the ICC in its report. They apparently failed to review its 2012 Primer.
     
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  4. Ember

    Ember Senior Member

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    To me, your statement sounds closer to a personal attack than to an informed response. Indeed, many may not have read the full report and considered its potential implications so quickly. But some are prepared to sign a thank you card and aren't being challenged for that.

    Would you also accuse Jeannette Burmeister of jumping to conclusions?
     
    Last edited: Feb 13, 2015
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  5. Nielk

    Nielk

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    I don't think that this is a fair statement. How do you know whether this writer didn't read the full report? I happen to know him and I believe he did read the full report.

    Why do you not question the comments that sung the praises of the IOM report?

    How were they able to read it and digest it so fast to come to their conclusions? They are already in the planning of writing a thank you card for the job well done.

    You don't have to agree with the conclusions of this writer but it is not fair to question his integrity.
     
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  6. Ecoclimber

    Ecoclimber Senior Member

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    With all due repects to Jeannette who I greatly admire for her legal advocacy work, I disagree with various portions of her analysis in her post. She is not a trained medical doctor nor medical scientist or researcher.

    As to the blogger in post 1, those statements in his blog are his own personal conclusions and are mere speculation and conclusion not founded in fact. His earlier remarks are not conclusive of ME. Doctors are not going to perform lumbar punctures to determine if a patient has ME or not.

    See the posting by Dr. Charles Shepard on calling it Myalgic Encephalomyelitis

    http://forums.phoenixrising.me/inde...-myalgic-encephalomyelitis.35504/#post-557267


    As to the coding ICD coding issue: The United States is a sovereign not beholden to any organization unless by treaty or agreement approved by Congress. Given that point, the U.S. does make exceptions to the ICD codes as explained here in this blogpost IOM Unclassifiable Diagnosis from blogsite cfsfacts.org/2015/02/iom-unclassifiable-diagnosis.html

    What the IOM committee has done is to stumble upon a commercial website, ICD10Data.com, that adds clinical descriptions, gathered using software from various sources, to diagnostic terms.

    These clinical descriptions are added by the site owners - Alkaline Software - to help market use of the website to medical personnel to increase ad revenue:
    http://bit.ly/1CengwG

    The link given in the IOM report does not lead to the WHO "International Classification of Diseases, Tenth
    Revision," But to this unofficial, commercial version of the US ICD-10-CM.

    The published consensus case definitions of ME and CFS are indeed very different. Based on this blunder, the IOM committee is recommending a new ICD code be added for their new "systemic exertion intolerance disease": A new code should be assigned to this disorder [sic] in the International Classification of
    Diseases, Tenth Edition (ICD-10) [sic], that is not linked to ""chronic fatigue"" or ""neurasthenia.""
    [Recommendation 1, page 7]
     
    Last edited: Feb 13, 2015
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  7. Scarecrow

    Scarecrow Revolting Peasant

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    I haven't read the full report but I have read the summary and am making my way through the rest. I don't welcome every aspect of the report and I've posted on that. I don't expect to get everything I want from life and I am prepared to settle for something less than what I consider to be absolute perfection.

    I don't need to read the whole report to decide whether it's progressive or not. I'm not really all that comfortable with 'the greater good' justifications, so with profound apologies to my 15-19 year old self who clearly did have ME but did not yet have PEM and didn't know it yet, and by extension all the patients to be who will find themselves in that precarious position, I welcome the report.

    I welcome it because it will take us forward. The IOM committee have given us a clear ME definition (provided your understanding of ME requires PEM). I understand why we did not also get the name. Does the name matter so much? (As long as it's not CFS).

    So when @Bob was stating:
    I'm assuming that he was referring to this part of what Jerrold Spinhirne wrote:
    How could Jerrold Spinhirne possibly think that the committee's definition is an updated CFS? If he does, then he must have read a different report to the one I did. I have a certain sympathy with his comments about the name although 'open to misinterpretation' seems fairer to me than 'trivializing'.

    The first three points in Jerrold's blog, I have no time for. It's his view and he's entitled to it but it doesn't address the contents of the report. Can we not just leave the past in the past and get on with it?

    What I would like to see is something similar to what @Nielk and Clark Ellis did in response to the draft P2P doc, separate pro and con stances so that everyone's views are represented. Perhaps two separate groups of like minded individuals could get together.

    As for the group card, it isn't intended as a critique of the document. It is merely a thank you.
     
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  8. Ember

    Ember Senior Member

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    The ICD has variations in each country. In the US, it's called ICD-CM. The post to which you refer is also by Jerrold, and it addresses the IOM Report's “significant errors and misrepresentations regarding the international classification of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS).”

    The IOM Report states, “In the World Health Organization’s International Classification of Diseases, Tenth Revision, which will be implemented in October 2015, the clinical descriptions of ME and CFS are identical (sic)...” The Tenth Revision that will be implemented in October 2015 is the ICD-10-CM. Contrary to the IOM Report's claim, ME and CFS are mutually exclusive ICD-10-CM diagnoses.
     
  9. Ember

    Ember Senior Member

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    In an earlier post, Jerrold writes, “The failure of the IOM ME/CFS committee to acknowledge the long-standing ICD code for myalgic encephalomyelitis as G93.3 in the diseases of the nervous system section of the WHO ICD means whatever disease the committee has defined, it is not ME.” As I noted in response to one of your earlier posts, “Jerrold explains the IOM Committee's errors concerning the IOM-10-CM classification. For the purpose of classifying their new definition, the Committee failed to acknowledge the relevance of the ME classification under ICD 10 G93.3.”
     
  10. Scarecrow

    Scarecrow Revolting Peasant

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    Yes, I remember, sorry for not responding clearly before.

    I don't think we are going to agree about this but this is my take on it: that classification is [i.e. will be] dead and buried along with the name. I do think we will have a clean slate and that ME/CFS (SEID) will be classified elsewhere. Since aetiology is unknown, I think that has to point to the new classification.

    The king is dead. Long live the king.
     
    Last edited: Feb 13, 2015
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  11. snowathlete

    snowathlete

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    Whereas I think it is healthy and helpful to try and read into things by digesting reports, evaluate the people behind them, their track record and what their intentions might be, it is very hard to accurately read into people's minds and determine their motives correctly.

    Personally, I discard the most extreme interpretations that enter my thoughts as I don't believe they have much chance of being correct. My reading of the above blog is that it is an extreme interpretation. My view of the report, definiton and name is that it is pretty good, and might bring about the kind of change we need. I think that is a much more likely scenario than the one put forward in this blog.

    I think the situation we have been put in as patients has bred a situation where there are a fair number of people out there who share this kind of view and are drawn to stuff like this, but although everyone is of course entitled to their opinion, my opinion is that it is not a very reasoned one, and I dont think extreme views like these actually help the community. I think they just confuse other people who haven't got the time and health to take a look at all the data themselves and reach their own conclusions, and to the outside world makes the community look a bit off the wall.

    Time and again I see extreme views like these and the people behind them like to get these views out there as loud as they can. They are pretty much stock responses to ME/CFS topics where the opinion is rigidly in place and nothing is going to influence it. People with more balanced views tend not to shout about it so much - less shout and more substance, and come across as more convincing as a result, I feel, but their opinion tends to take longer to form as they contemplate the material for longer.

    Why do I say that? Because I see it. Although this particular blog/thread may not be a good example, it sounds like @Bob has spotted the exact same thing I have (though I may be mistaken), which is that when a report like this comes out, the negative opinions are always the first to be aired, and very vocally, and always supported by the same crowd of voices. And then as time goes on, more balanced, and in my opinion more carefully considered, viewpoints get raised by others.

    One of the strengths of Jeannette Burmeister's, in my view, is that her arguments are carefully considered, well thought out and communicated and even though I don't agree with her all the time, her arguements don't come across as extreme and shouty, they come across as if she has balanced them in her mind and contemplated them properly. That's why I read her blog - and crucially why she can sometimes influence my viewpoints. If she wrote a blog like the one that started this thread then I wouldn't read it. I'd find it a big turn off. So, what I'm trying to get at is that I don't feel like the blogs of Jeannette Burmeister and Jerrold Spinhirne are comparable - they are very different.

    When I read Jeannette's blogs, I find her message is often insighful and raises important and genuine points that need to be tackled, which if we do so, stand a chance of resulting in a better outcome in matters. That's what I want to read, not extreme interpretations that fail to mention positives and opportunities, but focus entirely on the negative.
     
    Last edited: Feb 13, 2015
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  12. Ember

    Ember Senior Member

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    We don't yet know where the IOM proposes to have SEID added or whether they propose to have any other codes(s) deleted. The ICD-10-CM goes into effect on October 1.
     
  13. Scarecrow

    Scarecrow Revolting Peasant

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    Agreed.

    [Edited to add that I've just realised why you picked me up on this. It was my poor English in the bit you've quoted. I've edited it without destroying the evidence!]
     
    Last edited: Feb 13, 2015
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  14. Ember

    Ember Senior Member

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    At issue was whether anyone can have properly considered the IOM Report's potential implications so quickly.
     
  15. snowathlete

    snowathlete

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    And this is pretty important. Where the code is is probably even more important than what the name is. We need to keep an eye on developments, though I have little idea where we need to be looking so that it doesnt creep up on us too late to allow us to influence the decision.
     
  16. lnester7

    lnester7 Seven

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    Well I have never seen the CCC report or the FEKUDA, nor the ICC report....., when time passes all u are left with is the definition and the name. So I can see the user's point of view.
     
  17. Bob

    Bob

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    @Nielk @Ember I have absolutely no problem with considered & thoughtful critiques of the IOM report. But I do have a problem with knee-jerk reactions, esp the type that condemn or praise the entire report and the IOM's conclusions without careful consideration of the report and of the potential implications of the recommendations. So I don't have any problem with negative critiques. If my comment came across as personally insulting to your friend, then I apologise for any insult to personal feelings. However, I find the blog to be ill-informed and possibly harmful to my own interests, and I think my criticism is justified.

    I might yet decide that the IOM conclusions are potentially harmful, but very many of us are still working through its potential implications and grappling with very complex issues. I don't find superficial (i.e. lacking a considered critique and failing to present evidence) knee-jerk wholesale condemnations to be either fair or helpful to the rest of us. I think they are unfair.

    To be specific, it's the following text that I was referring to when I said that the blogger clearly hadn't read the report: "HHS wants to begin the cycle afresh by creating a new, updated version of CFS"

    I can't see how anyone could possibly come to this conclusion after reading the report. The report includes a huge amount of information, much of which we (people on our forum) submitted ourselves. e.g. the report cites the Lights' research and it includes an explanation of, and a recommendation of, two-day CPET testing. It includes a thorough consideration of much evidence in relation to 'ME'. I'm not yet sure how thorough, because there's so much to read. e.g. I haven't read the immunological section yet.

    They are not simply discussing chronic fatigue or Fukuda CFS. They are discussing evidence in relation to ME. (In my early opinion, they are discussing ME in general, but I accept that's a matter of debate and will probably divide opinion.)

    Furthermore, the requirement for PEM is something that many on this forum have been discussing for years. It's not to be sniffed at. It's not a required feature of Fukuda CFS, and it's not a feature of chronic fatigue. The inclusion of this criterion would be a fundamental shift for us, if the recommendations were to be accepted. And possibly even a paradigm change. But I think it's probably too early for any of us to predict how these recommendations might affect the field of ME/CFS.

    Also, the core SEID criteria are almost identical (but much better in my opinion) to the core CCC symptoms. I'm struggling to see how anyone advocating for the CCC can dismiss the new criteria outright, even if they are imperfect. (I haven't yet seen anyone explain, in any detail, why they consider the SEID criteria to be inferior to the CCC.)

    I think we need to keep in mind that, if we reject these criteria, as a community, then we might be left with the status quo and Fukuda CFS for another decade. Sure, that might not be a fair choice for us to be facing, but it's the reality of where we are. So we need to consider this, when condemning the new criteria outright. Nuanced critiques, focusing on specific points, would be more helpful in my opinion.

    Personally, I think the full report has an enormous amount of merit, and the recommendations are a vast improvement on our current position. I accept that the report and recommendations may not be perfect, and I'm still considering the detail and potential implications. I may yet decide that there are features of the new criteria that I strongly object to.

    I'd appreciate it if we all took a little bit of time to work through, and to carefully consider, the issues. This is too important for knee-jerk reactions. The report took a year in the making. We're going to need some time to grapple with it, and digest it.
     
    Last edited: Feb 14, 2015
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  18. Bob

    Bob

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    Eco, in my opinion your text (bolded) is irrelevant, and simply a misplaced appeal to authority. As patients, we can have very informed and insightful opinions whatever our formal training. Considering, for example, some of the recent posts on Medscape, then we'd do better without the opinions of many so-called trained medical professionals.
     
    Last edited: Feb 14, 2015
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  19. Ecoclimber

    Ecoclimber Senior Member

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    @Bob
    That's your opinion which I thoroughly disagree with and refused to be stifled by you in voicing my comments. Mentioning Medscape is a red herring attack. If medical professionals want to engage in unprofessional conduct by berating patients than there are effective remedies for that. People have agendas and just as rendering an legal opinion requires the understanding, background and experience in jurisprudence, so the same holds true for the understanding of science and medicine. thank-you. Since when did you take on the role of a moderator?
     
  20. Hope123

    Hope123 Senior Member

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    I agree with Ecoclimber though. Everyone is entitled to their own opinion on anything but whether that opinion is informed or realistically based is another matter. I am the last person to appeal to authority (as people who know me know; degrees, colleges, status, etc. don't matter that much when I judge someone's work) but I do appeal to knowledge and experience. For example I could write about my opinion of legal issues, not my field, but it will not have the background, knowledge, or applicability of my friends in the legal field if they were to write about the same issues. Similarly, I comment on politics/ business-related issues occasionally on another forum but someone who works in those fields will have more insight than I.
     

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