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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. Lisette

    Lisette My daughter and I

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    Wow-- so many posts since mine

    Whoa! Didn't mean to start a ruckus! Sorry about that. But please don't cyberscold me, all the same. ;)

    I wasn't trying to get this off topic, honestly. I simply saw a notion at the beginning of this thread that needed to be corrected. And I saw an opportunity to ask a question.

    I wanted to point out that there are many other groups that have fallen prey to the -- borrowing the terms from Erik Johnson of Incline Village-- "denialists, pscyhologizers and stressologists".

    My point was not about back pain, specifically-- it's simply what happened to me is why I had to respond. I have often seen the idea that other patient groups get treated well and we are the only ones who are plagued.

    The reason why I bring this up that point is because I want to ask-- can we find another group that has gone through a similar maligning of their issue and how did they prevail? We don't have the energy of wherewithal to re-invent our own unique advocacy, I fear.

    I just don't want us to stay stuck in "shocked and angered" mode, because we have been there for so long.

    I want to encourage us find out what to other patient groups that have found themselves in the same situation that we are have had to do to set things straight. Back pain is one of them, but that falls under the larger heading of "chronic pain".

    Nancy Klimas has said that most of the markers of our illness are inflammatory and cause pain-- the Chronic Pain group in this country is much better advocacy and support because they include so many different groups.

    Just for some information on me, so that you don't write me off--
    I had all the same things happen to me as Dr. Yes has had in his current situation with my back injury. The ligaments were slowly tearing away from my sacrum every time I moved or even rolled over in bed. The doctors kept saying, "it can't do that."

    So, all the PTs, nurses, techs, etc. were informed that I was a depressed drug-seeker with anorexia and I was sent down to the psychiatric unit. I do not even want to discuss what happened to me in there and what it took to get me out.

    I am simply trying to raise the point that the Wessley group has made much off of CFS, but there are other schools of psychiatry that are making just as much ground with all other illnesses. This onslaught is broad and deep by the psych lobby.

    I am suggesting that we should cast our net wider, to enlist the help of groups that might have more sensible advocacy in place, one that is not so conflicted with split intentions as the ones we currently have.

    Does anyone have a knowledge of MS history and advocacy? They have at least gotten treated better, but how did they get their disease moved out of psychiatric and into neurological?

    For instance, Reeves has argued that a psychiatrist is a logical choice to have on staff because this is a "neurolgical" illness in part. I don't see anyone saying, "then why do you not have a neurologist as an adviser?"

    That is all. Some people here know me from other forums, and they can attest to my oh-so-sweet and lovely personality.;)

    Truly-- I am on our side! I want to help-- I've just been shocked and appalled so many times that my "appaller" is busted. I'm glad for the people that can feel the righteous anger that is appropriate because I tend to get too complacent.

    Thanks,
    Lisette
     
  2. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ Dr Yes

    Hi Dr Yes,

    I have just responded to your last post, with several windows open at once, inadvertently clicked away from the post box and have lost the entire post.

    I will reconstruct my response tomorrow and in future compose on an email and then paste it in.

    Grrrrr!

    Suzy
     
  3. fresh_eyes

    fresh_eyes happy to be here

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    :eek: Wow, usually Wikipedia isn't *that* far off. Thank you!
     
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    It would not at all surprise me if the DSM-V Task Force is not ready to publish its alpha draft in January - or at least not for all sections of DSM-V.

    The timeline on the DSM-V webpages has now been updated to reflect the extended anticipated publication date, but there is no timeline up yet for the alpha draft, consultation period, field trials, beta draft. Nor is there any information up yet on the consultation process.

    Suzy
     
  5. spit

    spit Senior Member

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    Lisette -- for what it's worth, I do totally agree with you, though I think that what people were getting at earlier in the thread was more about the biases of doctors, who will suspect psychological disorders with scant or no objective evidence while insisting that other diagnoses -- but only some -- require leaping through hoops of flame to "prove" that they're valid. I don't think anybody meant to be calling other patients' problems less difficult or less valid.

    I think it's good to be reminded that other patients with other symptoms often have a lot of hard to deal with when it comes to stigma and blame, and I certainly will never judge anybody's symptoms, etc. I will always personally do my best to avoid any judgment or attempt to say something is worse or better. I completely agree with everything you've said here, honestly, and just didn't read the comments you were responding to the same way.
     
  6. spit

    spit Senior Member

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    Also, thanks to the folks talking about the Rosenhan experiment back in the thread; I hadn't read the full publication before.

    It's off topic, but I have actually considered how awesome it would be with narcolepsy, another very hard to diagnose disorder of accepted physical origin, to conduct something semi-similar -- essentially, to send out a bunch of people to random doctors, describing, in exact language, the exact symptoms of moderate narcolepsy, just to see how many would be misdiagnosed and how long it would take them each to get to the actual diagnostic testing for it.
     
  7. Dr. Yes

    Dr. Yes Shame on You

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    :eek: I'm so sorry, Suzy! That is the most aggravating thing, I know... happened to me the other day. I just gave up. Thanks for trying again...:D
     
  8. Michael Dessin

    Michael Dessin Senior Member

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    Yikes

    Looking at this thread, looks like were trying to make amendments to the new health care bill! :)

    I just wanted to thank Dr yes, Fresh Eyes and the others for providing this material and discussion.

    The fact is...The CDC had made ME and CFS interchangeable.

    ME has been classified as its own disease for decades

    It's like throwing MS into the CFS wastebucket diagnosis, after it has been identified for decades as well.

    CFS is a spectrum of illness, ME is a distinct neurological illness, unfortunately intertwined as one by the CDC.

    The CDC needs to identify all of the various conditions in the CFS spectrum...1st being, seperating ME into it's own identity, as it was before being thrown into the CFS bucket.

    All of these conditions need to be taken as serious.

    Thanks--Mike

    OH one note...ME has an official code which can be used for disability....it's on my paperwork.......If you are diagnosed with ME, always try and get your disability that way, instead of with CFS...They do take it serious now, and chances of getting approved are greater.
     
  9. jspotila

    jspotila Senior Member

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    I think this is an excellent point. Lisette wondered about the history of MS. I don't know the story of how MS went from psychological to neurological, but I was very interested to read that the National MS Society was started in the 1950s. A US Senator had a daughter with MS, and so he helped secure a Congressional resolution on the topic of MS in the 50s or 60s. So they had backing from a Senator 50 years ago!

    I did a small bit of searching on the ICD-10 process here in the US. The National Center for Health Statistics is responsible for maintaining and updating the ICD. Interestingly, they have a Coordinating Committee that is the forum for proposals to update the ICD-9. The Committee's website has a summary of the proposals presented at the September 2009 meeting and more:
    http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

    I am wondering if the CFSAC is a good place to start on this issue? Dr. Jones would certainly be able to provide information on how to make proposals re: CFS. It would also make a lot of sense for IACFS/ME to be involved or even take the lead. The American Medical Association seems to be heavily involved in the process. For example, the AMA met with former DHHS Secretary Leavitt and pushed for the delay in implementation of ICD-10-CM to 2013.
     
  10. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    In case this is the last message I post before the holiday, I would like to wish everyone here a peaceful time and better health in the New Year. I'd also like to thank Cort and his mods for all the work they put in maintaining these forums.

    @ Dr Yes and fresh_eyes

    It is perverse that the US is shifting from ICD-9 to an ICD-10 Clinical Modification in 2013, rather than shift onto ICD-11 in 2014/15, in step with many other parts of the world. This extension to the timeline is being sold by the APA as providing more time for public review, field trials and revisions and in order to better link DSM-V with the US implementation of ICD-10-CM codes for all Medicare/Medicaid claims reporting.

    The APA's 10 December press release also states:

    See: http://www.psych.org/MainMenu/Newsr...wsReleases/DSM-5-Publication-Date-Moved-.aspx

    For the past six months, there has been an interesting dialogue unfolding on the website of Psychiatric Times between professionals in the field, some of those working on the current revision and Task Force members from previous revisions, like Drs Frances and Spitzer. There has been no commentary published since the APA's announcement of a revised publication date, but it will be worth keeping an eye on the Psych Times site in January, in the run up to this anticipated release of a first draft and once the draft has been released.

    There has been a good deal of criticism from professionals and those who worked on earlier editions of DSM about the lack of transparency in general, around the Task Force's MO, and particularly around the drafting of proposals and lack of detail within the very brief reports that have been published since the 13 Work Groups were convened - and some very snarky rebuttals from current DSM-V Task Force and APA board members.

    The Psych Times DSM-V pages are here: http://www.psychiatrictimes.com/dsm-v

    The APA's DSM-V pages have now been updated to reflect the revised publication date but there are no details yet on a firm date for the release of a draft or around the consultation process. As I've said to fresh_eyes, I'm not holding my breath.


    You've written:


    In my opinion there is no evidence for the Ben statement, "the revision process may result in ‘CFS’ (and possibly M.E.) being classified as mental disorder in ICD-11".

    I think it might be helpful to set out briefly how the ICD revision is going being carried out:

    The ICD Revision Steering Group are promoting their revision process as an open and transparent one. Style Guides, Content Model Guides and key documentation (some of it still undergoing preparation) is being posted on a website and can be accessed and downloaded by anyone.

    ( https://sites.google.com/site/icd11revision/home/documents )

    The revision of ICD is being carried out by a number of Topic Advisory Groups (TAGs) who report to the Revision Steering Group (chaired by US Mayo Clinic, Dr Christopher Chute). The members of the various TAGs are scattered all over the world but are holding occasional face-to-face meetings in Geneva.

    The revision of ICD-10 and the development of the structure for ICD-11 is to be carried out via a wiki-like collaborative authoring platform - the iCAT.

    You can see how this will operate in these ICD YouTubes, here:

    iCAMP YouTubes on WHOICD11 Channel: http://www.youtube.com/user/WHOICD11

    The TAG Managing Editors (TAGMEs) will be networking for external reviewers with interest and professional expertise in the various categories they have been allocated to work on, to act as peer reviewers for content and proposals. So each TAG has a virtual working group which will draw on external reviewers, as required.

    The TAGMEs will be responsible for overseeing the population of content according to the ICD-11 Content Model Style Guide:

    https://sites.google.com/site/icd11...ContentModelStyleGuide.doc?attredirects=0&d=1

    Proposals for content or revision will be passed to the Revision Steering Group for approval, and thence to the classification experts for their approval and then entered into the draft. The members of the various TAGs are scattered all over the globe and many will be undertaking these responsibilities in parallel with day to day professional commitments - so much of this work will be being carried out electronically and via the iCAT platform.

    On the ICD-11 Google site, ICD Revision has published a Content Model with some populated examples. It isn't clear at this stage just how much information might be included within ICD-11 for the categories of importance to us but the issue of definitions and content is going to be of equal interest to us as the issue of future classifications and codings, see: iCamp Content Model Style Guide.doc at:

    https://sites.google.com/site/icd11revision/home/documents

    I've seen it suggested on a Wikipedia Talk page that because the revision is being carried out via a multi-layered wiki-like collaborative authoring platform that it will make it easy for "the psychs" to push their agenda - but the iCAT is not going to function like Wikipedia does.

    It is anticipated that the platform will be accessible beyond the WHO HQ staff, TAG Managing Editors and TAG members to all who register for access, but there will be internal and external review and various levels of interaction, editing authority and input into the authoring platform. It is understood that members of the public will have restricted input rights until after the release of the Beta draft.

    Each Chapter of ICD will have a "Start-up" list which will include current ICD-10 content, input from ICD clinical modifications and WHO affiliate organisations, proposals already received via the ICD Update and Revision Platform (for example, the recommendations of the CISSD Project) and proposals already received via other channels.


    I was advised by the Co-ordinator of the International Advisory Group (AG) for the Revision of ICD-10 Mental and Behavioural Disorders (Int AG MH) in September that proposal forms for Chapter V (Mental and Behavioural Disorders) and Chapter VI (Neurological) were going to be issued over a month ago, which anyone will be able to use to submit proposals, backed up by citations.

    These forms have yet to materialise, which makes me wonder whether ICD revision is also slipping behind schedule. The Alpha Draft is timelined for May 2010 but the ICD Steering Group has yet to publish an ETA for the launch of the iCAT. Because of the proposed structure and the very much increased potential for content to be written into this new version of ICD, and given that it is intended that ICD-11 will be capable of integration with other electronic systems, it is a very ambitious project.


    Because the iCAT has not launched yet, it's not yet known what content will form the "starting point" for existing G93.3 classifications or what proposals might already have been made, other than those evident from the Update and Revision Platform. (Currently only those of relevance are the recommendations submitted by Dr Richard Sykes on behalf of the CISSD Project, for which the Review paper published by the CISSD Project leads, in July 2007, is given as the citation.)

    The TAG for Chapter V: Mental Health and the TAG for Chapter VI: Neurology have issued no reports on their progress, and since the iCAT is not yet up and running and visible to the public - as far as ICD-11 goes, it is still early days and it will be at least four months until an alpha draft is released, though I would expect the iCAT to launch before the first draft.

    So there is currently no documentary evidence to support Ben's statement.

    Earlier this year, Dr Robert Jakob, WHO Geneva classifications expert, responded to an enquirer by quoting from a earlier response from the WHO's Dr Saraceno:

    "[...]The WHO ICD-10 Diagnostic and Management Guidelines for Mental Disorders in Primary Care, 1996, includes fatigue syndrome under neurasthenia (F48.0) but does not state or imply that conditions belonging to G93.3 should be included here. I would also like to state that the WHO’s position concerning this is reflected in its publications and electronic material, including websites.”

    adding that ...again, there is no evidence for any change of the above to be made for ICD-11.


    What Dr Jakob did not proffer was any clarification of whether TAG Neurology would be actively reviewing the current code to which Chronic fatigue syndrome is indexed, ie G93.3 (same as ME). There is nothing in the documentation currently available to us that suggests that this has been red flagged for review.

    And, as Lesley Ben notes in the Short Version of her 29 page document, the WHO has never set out the basis on which it indexed Chronic fatigue syndrome at G93.3 or what the WHO perceives the relationship between PVFS, ME and Chronic fatigue syndrome to be; or whether, in classifying PVFS and ME at G93.3, it views the two terms as synonyms, as alternative terms, a sub-entity to the disease mentioned in the title of the category or a "best coding guess", according to their own rules for terminology where more than one term is classified at the same code; or whether it views the terms ME and Chronic fatigue syndrome as synonyms.

    Since all three volumes of ICD-11 will be publicly available online and will be fully interactive with each other it seems unlikely that TAG Neurology would leave Chronic fatigue syndrome as an "orphan" in the Index without mapping across to Volume 2. TAG Neurology has the option of reviewing which chapter Chronic fatigue syndrome might be classified under (as it has the option for reviewing any existing coding or indexed term) and what code should be ascribed to it - so yes, there is the potential for a review of its present G93.3 index coding - but again, there is no evidence that the intention might be to place CFS under Chapter V.

    So I consider that Ben's statement is misplaced. Even without that informal statement from Dr Jakob I do not consider that Ms Ben could provide you with evidence to support the statement "the revision process may result in ‘CFS’ (and possibly M.E.) being classified as mental disorder in ICD-11".


    Given that the ICD revision has not yet reached the iCAT and Alpha Draft stage and given that the TAG Groups report to the Steering Group, which then passes proposals to the WHO classification experts, there is a case for arguing that Dr Jakob had no locus for issuing informal statements about specific future classifications at this stage in the revision process - nevertheless he has done so.

    You'll notice that I don't use the combined terms "CFS/ME" or "ME/CFS". I prefer not to use these combined terms, myself. But the WHO Geneva does not use them, either, in ICD-10. So when discussing CFS and ME in the context of ICD-10 revision it is meaningless to use either of these combined terms, so I will only ever talk around PVFS, ME or "Chronic fatigue syndrome" which is how it appears in Volume 3: The Alphabetical Index.


    A point I would like to emphasise, which will have been made in the Ben document, is that according to ICD taxonomy rules, a disease or disorder cannot be classified in two places at once. So if Chronic fatigue syndrome remains indexed and/or coded at G93.3, it cannot also be coded in Chapter V: Mental and Behavioural Disorders (or anywhere else).


    You have said:


    I assume you mean "she" as in islandfinn - not Ben?

    The extract that islandfinn has posted is from the posting on my site: The Elephant in the Room Series Four: DSM-V: What do we know so far?
    16 December (http://wp.me/p5foE-2wV )

    You've said:


    DSM revision does not talk about "ME" or "PVFS" - but then many in the field of liaison psychiatry and psychosomatics use "chronic fatigue", "chronic fatigue syndrome", "CFS", "CFS/ME", "ME/CFS" interchangeably - a fundamental issue but beyond the scope of these responses.

    The extract:


    is taken from the Editorial* published in Journal of Psychosomatic Research by Dimsdale and Creed on behalf of the DSM-V Somatic Distress Disorders Work Group, and refers to a proposal by the SDD Work Group, as it stood in April 09.

    It is using "chronic fatigue syndrome" in the context of one of the so-called "functional somatic syndromes".

    * Free full text and PDF versions of the June ‘09 Editorial here: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext


    Where islandfinn writes:

    she/he appears to have not quite understood the proposal.

    The DSM SDD Work Group already considers that "chronic fatigue syndrome" comes under the umbrella of the "functional somatic syndromes" (a term Dr Richard Sykes also uses in the Review paper the CISSD Project leads published in 2007 and term widely used in psychiatry/psychosomatics). So there is nothing new in that.

    Until the draft is released we will not know how DSM is currently proposing to restructure the section that is currently known as "Somatoform Disorders"; we will not know what terms they are proposing to replace "medically unexplained symptoms” with - a term we know they would like to get rid of.

    In April (the last report they issued) they were giving consideration to a framework that would allow:

    "Functional Somatic Syndromes", ie "chronic fatigue syndrome", IBS, FM and possibly a number of others, not to be differentiated from "general medical conditions" thereby diminishing the interface between them, within a framework that would allow for an additional diagnosis of "somatic symptom disorder" for all diseases and disorders.

    My understanding is that what they were suggesting at that point, is that any disease/disorder/condition whether be it heart disease, MS, IBS, RA, CFS, cancer, diabetes, could be give an additional diagnosis (an add-on if you like) of "somatic symptom disorder".

    Clever, eh?


    They were also, at that point, considering the category “Psychological factor affecting a general medical condition” .

    The Editorial goes on to list a variety of different subtypes included within the diagnosis of “Psychological factors affecting a general medical condition” including a specific psychiatric disorder which affects a general medical condition; psychological distress in the wake of a general medical condition and personality traits or poor coping that contribute to worsening of a medical condition.

    You see why it's not possible to boil this down to a few lines?

    You've written:

    As above, in April they were suggesting dispensing with the notion of medically "explained" and medically "unexplained" in order to diminish the boundary between the two, in order that ANY disease/disorder/condition could attract an additional diagnosis of "somatic symptom disorder" (or whatever they are proposing to call it).

    Not "dual diagnosis" as in "CFS" is both "organic" and "somatoform". Or "IBS" is both "organic" and "somatoform".

    But do away with the divide between "organic" and "medically unexplained" - so there is no divide, but consider ALL illnesses/diseases/disorders as having the potential for a somatic symptom disorder "add-on" - as a result of the illness itself, or the patient's coping abilities or failure to "adjust" or personality etc.


    But they may already have ditched this and come the first draft, will be proposing something else.

    So the issues for me will be when the draft comes out:

    What structure are they now proposing?

    Will the "Functional Somatic Syndromes" sit on the same Axis as "general medical conditions" with no division between them but with ALL medical conditions having the capacity for an "add-on" diagnosis of "somatic symptom disorder" of various flavours?

    What will those flavours be?

    Or

    Would CFS, IBS, FM etc be subsumed under some other classification within this section of DSM-V?
    Would they be listed by name, per se?
    Would they be listed by name and given individual codings?

    (But if they were - that would make it very difficult to "harmonize" this section of DSM with the equivalent section in ICD-11 Chapter V, given that Chronic fatigue syndrome currently sits outside Chapter V and cannot be classified in two places at the same time, and it would also produce incongruency with ICD-10-CM.)

    I hope this answers some of your queries. We need to alert our advocates to the forthcoming draft and encourage them to participate in the consultation process - it's only two months. But in my opinion we simply cannot say, at the moment, "they are trying to do this" or "they are trying to do that" because a) we don't know yet and b) DSM don't seem to know what they are doing, either...

    Now I have to go and change into my elf costume.

    Suzy
     
  11. starryeyes

    starryeyes Senior Member

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    Oh yeah. The CAA will say this in one breath and then with another they put doctors on their pamphlets who state that we have to exercise to get well and that CBT does work for many CFS patients. The CAA even quotes Dr. White from the UK. The CAA is full of mixed messages but I get the gist of it. See my thread about the CAA Educational Pamphlet.

    Thank you mike! I had no idea.

    fresh eyes - you are joking that Wiki isn't usually that far off right? (See CFS Wiki Wars here at PR)

    That is brilliant thinking. :)

    Thank you so much for explaining all of this me agenda. How do you know all this stuff?

    How do we alert our advocates and who are they? lol Do we have any advocates?
     
  12. fresh_eyes

    fresh_eyes happy to be here

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    !:D:D:D:D

    Thank you for your work, Suzy, and I'm sure you look smashing in that elf costume. Happy, happy holidays to you too.

    @ jspotila - I really like the idea of getting Wanda Jones' take on this topic. After the holidays! Hope you have a great one too. Appreciate your being here - I imagine it's not always easy.

    To everyone: Merry Christmas to all, and to all a good night. :)
     
  13. sarahg

    sarahg Admin Assistant

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    The acceptance of MS as a legitimate disease was quite abrupt, scanning technology had finally advanced enough that researchers and doctors were able to SEE the lesions in the brains of MS patients. That pretty much changed it overnight. The cause of MS is not understood still, but there is something there that they can see...and that is what it took. Interesting to note that lesions are not seen in all patients or in all types of MS, so the insistent search for some sort of biomarker that will present in ALL CFS patients may indeed be a false one.
    We need a cause and we need a cure, but we don't need either to achieve legitimacy. We just need somebody to actually CARE about all of the physical abnormalities that DO show up in CFS patients. We need to INSIST that they be further explored and understood and taught to doctors. We need to get rid of the tired old notion of "no tests and no treatments"
     
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    PM me, fresh_eyes, when you're ready to launch your site and I'll add a link to my new DSM-5 Watch site and to the other site.

    I'll open a thread in the New Year for DSM-V and countries that will be moving on to ICD-11.

    [​IMG]
     
  15. Lisette

    Lisette My daughter and I

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    Thanks for bearing with me

    Because I had things happen to me that happen to ME/CFS patients, yet they occurred with another problem that was considered psychogenic, and then watched how that problem was legitimized as having somatic causes in just five years has made me ponder various "work-arounds" when it comes to large advocacy groups, etc.

    None seemed to be necessary-- it happened as a result of patients and doctors going down the same difficult path together and then realizing they had been misinformed for a long time.

    So, I have spent some time looking into other illness groups that have gotten more traction, but it has been limited.

    But I also meant to say, that even with these changes toward how "legit" diseases are perceived-- such as MS and asthma-- they still have to put up with public annoyance, but at least their doctors are not treating them that way.

    That is what we want-- we can't change everyone's mind on any issue. It's tantamount to the global warming debate when it comes to what the general public believes on any given issue. We now get to "vote" on science.

    MS issues did change with the brain lesions and spinal tap measures. We have lesions and substance P, and yet there was no abrupt change. That is what perplexes me.

    I should say, that what perplexes me is that MS must have been coded as a "neurasthenia" psychogenic type of malady-- this must have been firmly entrenched and yet-- I wonder why they had no Wessley type group fighting against that change.

    Perhaps it is pure luck, but it strikes me as curious-- how did the psychiatric lobby let something as huge as MS out of their grip, when they clearly have inveigled their way into other illnesses that didn't even start out with psychiatric classifications.

    The idea that a senator was instrumental in this leads me to wonder if the Senator of Nevada-- and all the others who stand to benefit in Nevada with the WPI's recent success might be more apt to listen to our complaints about all of this re-classification.

    Wanda Jones plus a Senator from Nevada... hmmm. Does anyone else see this as a potential good place to start probing?

    What do you all think?

    I will leave it to Dr. Yes and ME Agenda to do the wonderful work of getting our facts straight on what all is being proposed or not proposed with all of this.

    Perhaps Mike would be a familiar name with Dr. Jones since he had to face her at the CFSAC conference. If anyone can gain a few more minutes of airtime out of that lady, they must have superpowers. :)

    I remember writing to the Senator of Nevada when they were first deciding about funding the WPI, but now I can't remember if it's the same person or if a seat change has occured.

    I would guess that anyone with a vested interest in WPI would be equally alarmed at any sort of reclassification that did not lead to increased scientific research.

    Obviously, they must be very proud of the recent WPI victory, but would that institute and the leading politicians necessarily know what is happening with WHO?

    Have I made a faulty leap in my logic anywhere here? And also, I don't expect anyone to do anything that bubbles up out of my brain-- just brainstorming a little.

    If someone can direct me to a better thread for this, I'd be happy to move off of this one, so as not to irritate anyone further. Just trying not be an irritant can really be a full-time job in itself... I don't always succeed. :)

    Thanks,
    Lisette
     
  16. starcycle

    starcycle Guest

    I totally agree. Aren't there documented studies showing things like different brain blood flow patterns and oxygen/glucose uptake in CFS compared to normal controls? Not to mention different proteins in the cerebral spinal fluid, MRI studies showing the adrenal weight of people with CFS is up to 50% smaller, altered salivary cortisol/dhea functioning, or even now the Myhill ATP profile test? How are they going to "see" it if they won't even look at the right things? It's pretty maddening!
     
  17. starryeyes

    starryeyes Senior Member

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    Bay Area, California
    The CAA should have no problem finding info on biological abnormalities in CFS:

    http://www.jaapa.com/how-biological-abnormalities-separate-cfs-from-depression/article/124164/
     
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,819
    Likes:
    558
    UK
    Absolutely must be my last post before I elf off.

    @ teekjay

    I started researching DSM-V and ICD-11 revision processes as a result of initial research into the international CISSD Project, a project initiated by Dr Richard Sykes, PhD, administered by Action for M.E. between 2003 and 2007 and chaired by Prof Kurt Kroenke and Prof Michael Sharpe, several of whose workgroup members are now on the DSM-V SDD Work Group.

    The CISSD Project was funded by Dr Sykes' brother's Charitable Trust. Sir Hugh Sykes is a non executive director of a4e - the largest provider of Pathways to Work Schemes and has also authored political pamphlets for a right wing forum on Welfare to Work, Welfare reform, pensions and benefits.


    Lisette wrote:


    But they are working their way in...

    Over the last few years, Prof Trudie Chalder (King's College London) has been working in the field of CBT for diabetes patients and Chalder and Moss-Morris are both moving in on MS patients.

    They are currently joint PI's for this study which is being funded by a grant from the UK MS Society. (Which has 46,000 odd members from an estimated UK patient population of 85,000 - compare that ratio to Action for M.E.'s membership of an apparent 7,000 out of an estimated patient population of 250,000.)


    Abstract PubMed: http://preview.ncbi.nlm.nih.gov/pubmed/19698171

    PDF full journal text:
    http://www.biomedcentral.com/content/pdf/1471-2377-9-45.pdf


    Open Access Text:

    BMC Neurol. 2009;9:45.
    http://www.biomedcentral.com/1471-2377/9/45


    Study protocol

    Protocol for the saMS trial (supportive adjustment for multiple sclerosis):
    a randomized controlled trial comparing cognitive behavioral therapy to
    supportive listening for adjustment to multiple sclerosis

    Rona Moss-Morris1 , Laura Dennison1 , Lucy Yardley1 , Sabine Landau2 ,
    Suzanne Roche3 , Paul McCrone4 and Trudie Chalder5

    1 School of Psychology, University of Southampton, Highfield Campus,
    Southampton, SO17 1BJ, UK

    2 Department of Biostatistics, Institute of Psychiatry, King's College
    London, De Crespigny Park, London, SE5 8AF, UK

    3 Chronic Fatigue Unit, Maudsley Hospital, Denmark Hill, London, SE5 9RS,
    UK

    4 Health Service and Population Research Department, Institute of
    Psychiatry, King's College London, De Crespigny Park, London, SE5 8AF, UK

    5 Department of Psychological Medicine, Institute of Psychiatry, King's
    College London, Weston Education Centre, Cutcombe Road, London, SE5 9RJ, UK
     
  19. starcycle

    starcycle Guest

  20. Lisette

    Lisette My daughter and I

    Messages:
    25
    Likes:
    0
    Oops-- one more idea

    Jspostila had posted a link to the icd maintenance page. Sorry, I'm not yet familiar with how to do cut and paste on here. I'll figure it out.

    Anyway, I found the section that a chronic pain doctor had done on the strange diagnosis "Psychalgia".

    This is in the section under 2004 where this doctor/group has outlined nearly all of the same things that we need to address

    A challenge to the name itself as archaic, and a proposal to get rid of it/change it.

    A challenge to the dualistic way of diagnosing something as either somatic or pscyhogenic with exclusions of depression complicating the ability to diagnose someone as having a somatic disorder.

    And so on...

    This feels like CFS patients getting excluded in studies or in a diagnostic rubric if they happen to also have depression as a comorbid disease.

    I will see if I can figure out what happened as a result of this ICD change proposal. It would be interesting to see if it were part of chronic pain groups getting treated just a wee bit better.

    It was not long ago that they added pain as one of the vital signs.

    Progress can be achieved!

    Happy Christmas Eve Day to all of you!
     

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