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!
Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
Discuss the article on the Forums.

the psych lobby strikes again: DSM-5 v. WHO's ICD in the US

Discussion in 'General ME/CFS News' started by fresh_eyes, Dec 22, 2009.

  1. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    I feel like I've been kicked in the teeth. I am so angry with the CAA, my blood is boiling. :mad: They are responsible for educating our doctors. No wonder we keep being treated like malingering idiots. :mad: Hillary Johnson went too easy on them. I wish she would blog about this!

    Btw, what is a CME?
     
  2. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    Hey Stuart

    From the second CAA 'sparks' link you provided:
    There are gut-wrenching contradictions, worse than those I had noted on other threads. There are a group of rather equivocal statements on CBT by Klimas, Lapp, Bell, etc., in which they try to distance "their" CBT from the "British" version of CBT, as you can see from Lapp's statement below:

    I wonder if Lapp and the others were aware that their comments would be followed by a great big "ON THE FRONTIER" sidebar with a gloriously happy-looking Peter White defending his "demonized" (his word) approach, with summaries of his "supporting research" kindly re-quoted at length by the CAA. Some of his quotes include:
    Reeeeeeeeeally?

    Plus this concluding statement:
    This section is much more prominent than the text preceding it. It is obscene that this was EVER on offer from the CAA, but especially that it still IS!! If I had known about this earlier, Stuart and teej, I would have been far more severe in my questioning of our PR members from the CAA (bjsmith and jspotila) a few days/week ago. This is sickening.

    (And I'm usually pretty laid back!)

    So that's one problem, closer to home. We can step up our pressure on the CAA to remove such material, since they tell us it conflicts with their current views. Fine - so REMOVE it!! Don't give this stuff to physicians (or new patients!)

    BUT the point of this thread is a much bigger problem that will require more than the CAA's help alone, and for which we have a very short (I think a two-month?) window in which to make a push. I don't think that gives us time for Levi's experiment...but who knows...

    From Levi:
    Uhhh...any volunteers? (Takes a step back).

    Been there, don't want any of us to go through that. I assume you mean hiring a journalist? A healthy patient advocate?

    BTW gracenote - you are the fastest web slinger in the West! :D
     
  3. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Thanks so much for the excellent research here. I'll look it all over carefully, but my first impression is, well, it's much worse than I thought re CAA. I'm frankly shocked.

    Which makes me feel like we're better off going over the CAA's head to communicate directly with the APA & WHO re the original topic. Seems like it will be harder, and less effective, to try get the CAA to move on it than to do it ourselves. Anybody disagree?

    Can anybody help me articulate what *exactly* we want to see happen re APA & WHO? Dr Yes? Once we get that clarified, we could, for example, start a petition. Perhaps under the imprint of the new org I'm starting, CFSOUT.org - I hope that it can serve as a platform to provide some organizational legitimacy to our grassroots effort (ie, 'This letter (petition, statement, etc.) is not just from me as an individual, it's from the patient organization CFS OUT').

    ETA The flaws in the toolkits and CAA materials cited by Stuart are very important and deserve closer examination. But for our purposes on this thread, all we need to know is that the CAA is unlikely to represent our interests re the WHO/APA issue. Right?
     
  4. starcycle

    starcycle Guest

    No, I'm not falling into any trap. ;) If something originates in the mind then it originates in the mind. It's as wrong to say that something that is psychogenic is actually physical as it is to say that something physical is psychogenic. In that case you do as much disservice to the person by making up a false cause as you do with the person whose pain or CFS or whatever is caused by physical reasons. :)

    The problem often comes when people want to apply some kind of value judgment to the idea of things being caused psychogenically, or in the brain. But that is just as much a legitimate cause of some problems as anything else is, and does not minimize, negate, or deny what the person is going through in any way. That is different from saying that something that is physically caused is actually just a psychological disorder as a way of negating it. See the difference? :)

    Psychogenic can include "brain" as well as "mind" (if we are going to quibble to that extent -- sheesh). But again, none of this is really relevant either to the topic or to the comments we were making, which were solely concerned with the medical establishment's bias, ideological assumptions, and contradictory approaches to different presentations. So once again I ask you respectfully if we can just forget about the psychogenic back pain and phantom limbs, etc. We weren't really talking about the patients but the doctors and their illogical and unscientific attitudes. :)
     
  5. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Dr Y, I would agree with this, except that in the UK they have the ME designation, and things are apparently even worse over there. How can that be??? Anyone have insight?
     
  6. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Re: the psychogenic question, I think there may be some confusion here with regard to the word 'psychogenic'. I looked it up, and was surprised to see that it refers to a disease having origin in the *brain*, not so much in the *mind* (not a quibble by any means, imo):

    http://en.wikipedia.org/wiki/Psychogenic_disease

    It seems like a poor choice of term for such conditions, but there you have it.

    At first I thought this discussion you guys are having was off-topic, but now I realize it may be relevant: couldn't the psych lobby say 'CFS' is psychogenic, per the definition above, even if its symptoms were caused by virally-induced brain damage? Do 'psychogenic' diseases fall under the purview of the American Psychiatric Association? Is that part of the problem here?
     
  7. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    @ fresh_eyes

    It needs to be pointed out that the "harmonization" commitment is a joint commitment between the WHO and DSM and is set out as such on the summaries of the meetings of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders.

    The DSM-V Task Force and ICD-11 Revision Steering Group have committed as far as possible to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria with the objective that the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM.
     
  8. starcycle

    starcycle Guest

    Yes, it can be both. For something originating in the brain I would probably prefer the term neurologic, or neurobiologic, neurohormonal, etc. depending on the actual process. But psychogenic can also mean in the brain. It almost becomes a philosophical issue of where you want to make that demarcation between brain/mind, brain/body, mind/body, etc.


    They probably could. I guess it's going to depend on how things play out with XMRV, what kind of significance gets attributed to that to become the "conventional wisdom," the politics of what "specialty" wants to treat it, etc.

    Right now, I think that if XMRV pans out for many cases of CFS *and they have success with a treatment,* it will be very hard to make any kind of psychogenic claim for those people. After probably even only a few years there will be widespread acceptance by most doctors: just do a test to detect XMRV, and if the person has it, give the treatment. That fits their pathogen model and they don't have to use or open their lazy brains anymore (or is that open their lazy minds? :p).

    The problems will come when 1) the person has a variant of CFS and does not have the virus, or 2) the person has the virus but is intolerant of the treatment they have. In those cases, the medical community will probably fall back on their psychologizing explanations, saying the person is malingering, somatizing the reaction to the treatment, etc. So even with XMRV being legitimized, we are nowhere near out of the woods yet, imo.
     
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    @ Dr Yes


    You've suggested that ICD-11 = ICD-10-CM.

    This is not the case.

    ICD-10-CM, which is scheduled for adoption in the US, in October 2013, is what's called a "Clinical Modification" of ICD-10 and it has been under development for some time.

    ICD-11 will be a revision of the version of ICD-10 currently in use in the UK and other countries but which is not currently in use in the US because the US is still using ICD:9.

    The UK will move from ICD-10 to ICD-11 sometime after 2014/15.

    We will not be usng ICD-10-CM in the UK because that will be specific to the US.

    Clinical Modifications may help inform the revision of ICD-10 to ICD-11, but ICD-10-CM and ICD-11 may well differ in their codings and classifications.

    ICD-11 has only recently begun drafting and has not yet reached the alpha draft stage. ICD-11 won't be disseminated until 2014/15 and will not be adopted in the US for many years.

    You need to establish who in the US is responsible for the CM that is being introduced in October 2013 specifically for the US because this will not be the same Revision Committee that has the purview for the ICD-11.
     
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    @ "Dr Yes"

    http://www.hfme.org/PDF/WHO_ICD_ME_and_CFS_Short.pdf


    This document that "Dr Yes" has flagged up, authored by Lesley Ben, is based on a longer document available from the same website. Both documents have been considered controversial by some UK ME and CFS patients for the opinions expressed within the "Recommendations" section.

    Would readers please note that although I am acknowledged in the "Long version" (29 pages) of the document as having been an advisor to the author for the section on the DSM revision and on the CISSD Project that the views and opinions expressed in the DSM, ICD and CISSD Project sections and in the Recommendations section of these two documents are the views and opinions of the author, Ms Ben, and not mine and that they are not necessarily reflective of the views of all UK ME and CFS patients.

    Please also note that in relation to the ICD and DSM revision processes that the document is no longer up to date.

    Ms Ben also states that:

    "There is concern among many people in the M.E. and ‘CFS’ communities that the revision process may result in ‘CFS’ (and possibly M.E.) being classified as mental disorder in ICD-11."

    I should like to make it clear that I do not consider that the WHO is intending to classify either "CFS" or "ME" as mental disorders and that I have not expressed this view in any of the material that I have published since the beginning of this year.


    If you read the Recommendations section, you will see that Ms Ben calls for the separation of PVFS and ME, and also for the separation of ME and CFS, or for CFS not to appear in ICD-11, at all.

    Since most research into ME and CFS is published under the term "CFS" (including that of the WP Institute); since many patients in the UK and US are diagnosed only under the term "CFS" and since many of our UK NHS clinics and GPs only use the term "CFS", the recommendations within these two papers have been considered controversial.

    One further point, Jody Basset for whose website these two documents have been produced, and who holds very robust views around the use of the term "CFS" has spoken out most negatively on her own Yahoo! message board against the study published by the Whittemore Peterson Institute as having no relevance whatsoever to patients diagnosed with "ME", a view which I do not support, myself.


    Extract from "Short version" of Lesley Ben document:

    Page 7

    10. Recommendations for Future


    The classification for M.E. should be G93.3 Myalgic Encephalomyelitis under Diseases of the nervous system.

    The name currently given first at G93.3 in ICD-10 and ICD-10 CM (USA), ‘Postviral fatigue syndrome,’ should be removed. It is not correct: M.E. is not a syndrome. Fatigue is not a defining symptom of M.E.; it is frequently but not necessarily present, and when present it may be only a minor symptom.

    Fatigue following viral infection is not a neurological disease and should be classified elsewhere as appropriate.

    The current term ‘Benign’ should be deleted from before ‘Myalgic encephalomyelitis.’ It is not correct.

    The term ‘benign’ (meaning ‘not fatal’) was originally introduced in the context of the WHO’s efforts to categorise epidemic diseases, and indicated that a disease did not kill more than a certain percentage of its victims.
    However, this usage is not consistent throughout the ICD.
    The term misleadingly obscures the fact that M.E. can be fatal.

    The term also contributes to the public misunderstanding of M.E. Some people interpret ‘benign’ to mean that M.E. is not a serious illness. This is unfortunate considering the degree of severe disability and suffering which may be experienced by M.E. patients.

    There should be no ICD listing for ‘CFS’ as a valid disease term. ‘CFS’ does not exist and should not be given the status of a real disease.

    However, many patients are diagnosed with ‘CFS’ and need the protection of an ICD listing.

    ‘CFS’ could be classified in the ICD within a new category containing invalid disease terms. This would acknowledge that while patients are in practice diagnosed with the term, it is not valid.

    The ICD-10 already accepts that patients are in practice diagnosed with ‘imprecise and undesirable term’ for ‘ill-defined conditions,’ in that such terms are given in the index.

    A category of invalid disease terms would make explicit what is already implicit in categories such as ‘Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified’: not that the disease is not real, but that the patient requires a better diagnosis.

    Failing the proposal above or similar, ‘CFS’ should not be classified in the ICD.

    The false disease category of ‘CFS’ does not serve the best interests of patients. All patients would be better off with an accurate classification of a real disease, whether they suffer from M.E. or from another condition. Accurate classification would facilitate not only insurance and welfare claims, but also appropriate treatment.

    ICD classification of ‘CFS’ as a valid disease is not the way forward; it harms M.E. patients as well as those suffering from undiagnosed conditions who have been falsely classified with ‘CFS.’

    The fault in the online search facility for ICD-10 should be corrected so that the default ‘full search option’ which is supposed to include a search of the index, should indeed find terms in the index.

    All rather than only part of the WHO ICD should be published on the WHO website. The WHO should publish the Alphabetical index of the current ICD-10 online. If this is impossible for some reason, the WHO website should call attention to its omission. All of the future ICD-11 should be published online.

    If the WHO ICD is truly to serve its worldwide constituency, it must be available online in its entirety.
     
  11. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    @ ME agenda - Do you mean that in your view it's equally likely that the DSM will be changed to remove CFS?

    @ starcycle - I agree with all this. That's why this kind of lobbying of the WHO and APA etc. is still very much needed.
     
  12. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    fresh-eyes

    You've written:

    I'm not sure what you mean by this.

    CFS is not currently coded in the current version of DSM, which is DSM-IV.

    As I have set out in my most recent report on my site here: http://wp.me/p5foE-2wV

    until the DSM-V Task Force publishes its alpha draft proposals (scheduled for publication in January 10) we will not know what the latest proposals are for the section in DSM currently known as "Somatoform Disorders".

    They will be out for consultation for two months.

    There have been no published proposals so far to code specifically for "CFS" in DSM-V.

    The issue is how CFS, IBS, FM and other diseases/disorders/conditions which are currently bundled under the umbrella term "Functional somatic syndromes" or "Medically Unexplained Syndromes" may be accounted for in DSM-V.

    If you skim through my report - the most recent proposal (in June) was this:

    The conceptual framework the Work Group were proposing, at that point:

    …will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome.


    At that point they were talking about the potential for a dual-diagnosis for all diseases - general medical conditions and FSSs on a separate Axis but with the potential for an additional Dx of "somatic symptom disorder".

    That could have changed since June. We will not know until they publish an alpha draft what they are currently proposing.


    I think it is important to understand that the "harmonization" commitment is something which both the DSM and WHO have agreed to work towards, where possible, across the entire DSM and ICD Chapter V (Mental and Behavioural Disorders).

    It is not specific to the sections that concern us.

    Both the DSM and WHO accept that there may be areas where it will not be possible to achieve congruency between the two systems.
     
  13. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    And will be in the future.

    Thanks for getting the thread back on topic too Dr. Yes. I got completely sidetracked.

    I AGREE and I am very pleased to see that you and others here want to take action.

    Thats a great idea. Are you going to start a website?

    Absolutely.


    Yes I do. ME is being changed to CFS in the UK in order to make it fit the psychiatric view of it. Also, Wesseley et al have done their best to brainwash the public and get them to think of ME as cf.

    ME agenda - I'm glad you're here helping us. :)
     
  14. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    Website is in the works now, should be up in a couple weeks.
     
  15. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    @teejkay

    teejkay,

    You are correct to say that Wessely et al use the terms "ME" and "CFS" and "Chronic Fatigue" indiscriminately; some of our UK NHS CFS Clinics make little distinction between "CFS" and "Chronic Fatigue" and some of the clinics which ME and CFS patients are referred to are called "Fatigue Clinics".

    However, NICE still uses the dual term "CFS/ME", as does the Department of Health, as does the WHO Collaborating Centre, based in the Institute of Psychiatry (which, note, is not the same as the WHO Geneva).

    WHO ICD-10 does not use the dual terms "CFS/ME" or "ME/CFS" and I do not use the dual term either, and when talking about classifications and codings in the context of ICD-10 and ICD-11, I use only PVFS, ME and CFS.
     
  16. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK

    To date, the DSM-V SDD Work Group has published two reports on its progress and one journal editorial. You can access them here:

    The November 2008 report of the Somatic Distress Disorders Work Group can be read here:

    http://tinyurl.com/DSMSDDWGNov08

    The April 09 progress report of the Work Group can be read here:

    http://tinyurl.com/DSMSDDWGApril09


    None of the proposals that the DSM-V SDD Work Group have published so far have referred to "CFS/ME" or "ME/CFS" or "ME" or "CFS".

    The only reference to date is in the Editorial here:

    The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV a preliminary report

    http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

    This is the reference to "chronic fatigue syndrome":

    The conceptual framework the Work Group were proposing, in June 09:

    That is the only proposal so far that has mentioned "chronic fatigue syndrome".

    I keep saying it, but I will say it again - until the alpha draft is released we do no know what their most recent proposals will be or how they might define what they already consider as FSSs or whether they will list these by name.
     
  17. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    For ME agenda...

    From ME agenda:
    I never intended to suggest that, Suzy! Sorry if it came out looking like that; I knew when I wrote one particular line that it might look that way due to clumsy (tired!) phrasing, but plunged ahead to the rest of the point. I've fixed that sentence and hopefully it's clear now to everyone...thanks for pointing it out , as I wouldn't want to add to the confusion here..;)

    Also, I agree with you about the bias in the Ben document I posted a link for, but I figured they stated their bias at the outset (admitting that their recommendations are controversial), and anyway the main point was just to have a simple rundown of the WHO ICD coding, etc differences between the UK and US versions, since most of us were unaware of them. As you said, it only touches on the DSM revision issue, which you have covered far more thoroughly, but the whole ICD business was confusing everyone so I hoped (and still hope) that the article could clear that up.

    I have to say I'm still a bit confused about some key points, which you may be able to clear up for me (and others, I think):

    -You disagreed with Ben's concern that "the revision process may result in ‘CFS’ (and possibly M.E.) being classified as mental disorder in ICD-11". What are they basing this statement on, to your knowledge? And am I correct that you are basing your own contrary assessment on the lack of activity in that direction, and perhaps also on that statement by the WHO official you mentioned?

    -I think it's the quote from Co-Cure another member had posted that confused and concerned a lot of us; it's here at: http://www.forums.aboutmecfs.org/showpost.php?p=26135&postcount=10
    Where is she getting that from, in your opinion? (Is she confused? After all, in the text she quotes, there is only mention of the proposal for "dual diagnosis", but not outright revision of the ICD "organic" coding of CFS, let alone for ME ).

    - I see that you explained that the current DSM does NOT describe CFS as a 'somatoform' disorder, and so far none of the revising groups is proposing to...But there is the quote: "whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome". SO they've already defined CFS as a functional somatic syndrome; isn't that a term used interchangeably with somatoform disorder? And if they were to define CFS as a somatoform disorder, how can that definition co-exist with the CDC definition which remains (tenuously) physical?

    -If I am understanding you correctly, you're saying the major threat is the "dual diagnosis" proposition that part of the DSM revision group has come up with, right? Could you please clarify the meaning of "dual diagnosis", practically speaking? i.e. how can an illness be seen as both organic and somatoform, and how would such a revision impact any of us?

    Of course I don't expect you to answer all this stuff right away :eek: or at ALL, but whatever you can do would be helpful, as I think these are the sources of most of the ongoing confusion here (mine, at least!)

    (Man, I've been posting like crazy today! :eek: Got to get some more sleep.)

    ETA Sorry, didn't see your previous posts while I was writing; hope you haven't already responded to the earlier version of this post!
     
  18. jspotila

    jspotila Senior Member

    Messages:
    1,074
    Likes:
    609
    CAA materials

    While not on the topic of this thread (DSM-V, etc), I believe it is important to address a few side issues raised here.

    First, the CFIDS Association does not take the position that CBT or GET are a cure for CFS. From http://www.cfids.org/resources/CBTFactSheet.asp:

    Second, the CDC course for health care professionals was created in 2006 as part of the provider education contract. While the materials are listed as "renewed" in July 2009 through June 2012, the CFIDS Association ended that contract in 2008. We declined to bid on the contract renewal because we disagreed with the direction that entire effort was going. We pulled out because of the increasing focus on the psychology side. This is why we sought and secured a private donation to create the Medscape CME (continuing medical education) on CFS.
     
  19. fresh_eyes

    fresh_eyes happy to be here

    Messages:
    900
    Likes:
    5
    mountains of north carolina
    OK, thanks. We will expect that Jan 10.
     
  20. spit

    spit Senior Member

    Messages:
    129
    Likes:
    0
    To be honest, this is one of those places where I would trust wikipedia about as far as I could throw it (and given that I have no idea how one might throw a large collection of 0's and 1's, I'm sure that wouldn't be far at all).

    If you google "define psychogenic", and even only look at medical or biological sources, you always get some variation of "Produced or caused by psychic or mental factors rather than organic factors." (http://www.biology-online.org/dictionary/Psychogenic)

    Of course, trying to make a clear distinction between brain and mind is just about impossible, but it's exactly the way medicine has historically functioned, and so we wind up with situations in neurological disease where it is unclear, at least for a time, whether a disease arises from "body" or "mind". It's going to be a really constant problem for a long time yet, and it's especially troublesome for patients when medical folks tend to assume that anything they can't find an organic cause for must therefore be psychosomatic.

    I will say that I also find it incredibly funny that all of these "science-based medicine" folks don't seem to have any problem with sending patients off for psychological treatments based on nothing more than the completely untestable (and otherwise largely abandoned) theories of Freud and Charcot.
     

See more popular forum discussions.

Share This Page