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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. starryeyes

    starryeyes Senior Member

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    Wow me agenda that is amazing work you're doing. You must not have much brainfog or else you have amazing powers of overcoming it. What you say is so scary. The psychiatrists are going to start psychologizing other illnesses like MS? Are they sick in the head? ;0

    Happy Christmas to everyone!
  2. Cort

    Cort Phoenix Rising Founder

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    It doesn't make me angry at all. If you think you have trouble getting doctors in the US who know about CFS try finding a doctor who knows ANYTHING about myalgic encephalomyelitis. How many do you think there are in the country - 10? At least you have a chance with CFS. What would you get by going around saying you have myalgic encephalomyelitis? A boot out the door. Lets not forget there are no treatments for it either - so that information does nothing good for doctors.

    Cheney et al refused to call this disease myalgic encephalomyelitis in their first paper because it wasn't all epidemic and it didn't fit all the parameters. If you didn't come down with your disorder in a epidemic fashion - with people all around you getting sick - then you don't fit the ME criteria. Thats what the CDC is saying and its true! All the published accounts of ME are epidemic in nature.

    You don't typically have an initial paralysis that resolves itself or strongly twitching muscle groups etc. either - which as I remember happened fairly frequently in those outbreaks.
    __________________
  3. Cort

    Cort Phoenix Rising Founder

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    The following is stating the facts. The fact that they do not accord with your or my desires is simply unfortunate. If CFS patients have a high level of depressive disorders then doctors need to be able to care for them appropriately. That sentence is focused on 'care' not cause - frequently complicate care of patients

  4. Cort

    Cort Phoenix Rising Founder

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    What is CFS? According to the CME:

    Note the course includes all the prominent theories regarding infection, cardiac problems, hormonal problems, CNS problems and yes, psychiatric disorders - since it is a theory.

    I notice the CME course does focus on post-exertional malaise

    Nothing the matter with of this - there is no hint at all that PEM is due to incorrect thinking or behavior. The fact that PEM is pointed out helps differentiate CFS from depression and other similar disorders where it is not a factor.
  5. fresh_eyes

    fresh_eyes happy to be here

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    Yes! Wanda Jones + Harry Reid = CFS Dream Team!
    (Reid shouldn't be too busy after the holidays, seeing as how they should be done with the health care bill - such as it is :rolleyes:)
  6. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    @ teejkay

    I'm a carer of a YPWME.


    In the New Year, I'll dig out the Chalder CBT and diabetes stuff.

    Have a look at some back issues of Creed's J of Psychosomatic Research

    http://www.journals.elsevierhealth.com/periodicals/psr/issues

    or some of the liaison psychiatry and psychosomatics conferences.

    ...and now I really am off.

    Peaceful holiday, teejkay.
  7. Martlet

    Martlet Senior Member

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    Absolutely right! I'm an anomaly in that I fell ill while in the US at a time when I lived in the UK. Diagnosed by an American USAF doctor, I was told "You have chronic fatigue syndrome. You English call it M.E."

    There was an outbreak in my area, but not exactly an epidemic. I did have the muscle twitching but no paralysis (If I had, I would have wondered about Guillain-Barre Syndrome) Still fairly classic M.E. although my doctor called me "a textbook case of CFS." So, what do I have? M.E. when I'm in Britain and CFS when I'm over here, because as you rightly point out, telling an American doctor that you have M.E. will get you a blank stare, at the very best. And whatever we call it, we are still all in the same boat. As yet, no known cause and no cure.
  8. Cort

    Cort Phoenix Rising Founder

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    We're in bad shape if the CAA can't quote legitimate research because of who did it.

    Since the CAA does report on all branches of CFS research they'll always be vulnerable to people who pick out those (few) instances when they mention CBT, etc. - and say see! The CAA is in the CBT lobby or the CAA doesn't believe the disease has a physiological basic or something like that. I would note that no mention was made of the other research noted in that CFIDS Link that was on postural tachycardia syndrome and neuro-immune modeling (by Suzanne Vernon).

    Dr. Vernons study demonstrated
    Not too much behavioral stuff in there.

  9. starcycle

    starcycle Guest

    It's interesting how they can use salivary cortisol measures to make their bogus psych claims, but when I walk in with test after test of salivary cortisol consistently showing dysfunctional cortisol/dhea, etc. over literally years they patronizingly smirk and suddenly don't seem to know what saliva or cortisol even are. :rolleyes:
  10. fresh_eyes

    fresh_eyes happy to be here

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    Hey, everybody - the debate about what the CAA is or isn't doing is important, but I'm afraid it's taking over this thread and I want to make sure that we don't lose track of planning what to do re the DSM & WHO. There are already plenty o' threads for CAA debate. Hope I'm not being too controlling here. Thank you! :eek::)
  11. Dr. Yes

    Dr. Yes Shame on You

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    I agree fresh eyes (still unsure about "freshie" :confused:),

    This information in this thread is complicated enough without diversions about unrelated topics.. Criticisms of the CAA are going to pop up on any given thread, but any ensuing debates should be moved to a CAA-dedicated thread (of which there are now at least three) unless they actually are relevant to the original thread's purpose.

    Maybe one of the mods could move posts unrelated to this thread into another? Or maybe Cort could start a thread for answering criticisms of the CAA? ;) :D

    That said, I think Cort's first post here raised questions about ME vs. CFS that are relevant here, since this thread is concerned with international classification and definitions of this disease (which are of great significance). So, I'll answer some of Cort's points in this post..

    First of all, Cort, I haven't yet cyber-thanked you for creating and maintaining this fantastic forum...So thank you!:) (and, by the way, I subscribed to your blog before I even knew about this place!) Sorry we have to cyber-meet in a bit of an argument, but you must be used to that by now...:p

    I assume you meant "no cures" for ME, because of course there are treatments for ME -- the same ones there are for (the mostly synonymous) CFS... that's why you have a 'treatments' section on this forum. Just no established cure or clearly understood cause. But that goes for a lot of well-accepted diseases, as Lisette and others have pointed out. Doctor ignorance about ME in this country is thanks in large part to the CDC. If you replace an accepted name for a disease with another, and then expand its definition to include more diseases, and then say the original disease's definition is "something else", then of course no one will end up knowing jack about it. And research using the new disease definition will become useless.

    All the published accounts of ME epidemics are epidemic in nature. But the reason ME is called ME in the UK and elswhere, regardless of whether it is epidemic or not, is because the definition DOES NOT include epidemic nature as a criterion. What disease definition does? It would be horribly unscientific and an even worse public health mistake to think that any disease can only occur in epidemics. Many transmissable diseases that can occur epidemically also occur endemically (geographically and temporally scattered, unrelated cases). Some fungal and bacterial infections, for example, can be passed rapidly through a population but also occur in single or scattered cases, often due to vulnerable biologies in those individuals, or to isolated exposures to the pathogen.

    What the CDC is saying is NOT true. They have been obscuring the history of ME research for two decades. It is no surprise, then, that the current US version of the ICD is the only one in the world that does not clearly recognize either ME or postviral fatigue syndrome. (Though so far the plan is that they will catch up with the rest of the world in that respect at least in the upcoming version).

    I'm afraid you may need to re-read about ME outbreaks.. and definitions and case histories. 'Initial paralysis' is by no means a frequent symptom in the general ME epidemic literature. In some of the cases in some of the epidemics what was reported was loosely defined as paralysis that affected patients when they tried to initiate movement after a period of remaining still (especially after sleep). Twitching muscles is a well-documented symptom in CFS literature, as well. And even if there had been more frequent cases of more severe neurological symptoms, it would not be surprising; pathogens in epidemics are often more aggressive in their attack, particularly of the nervous system, than they are in endemic form.

    As for Cheney avoiding the term ME, that is a more complicated (and controversial) issue that will take us outside the range of this thread...but what should matter now is that he was part of the Name Change Advisory Board (the other members: Drs. Peterson, Bateman, Bell, Lapp, Klimas, Komaroff, and Jason) that in 2007 agreed and publicly proposed that ME should be used for the term CFS, that the acronym ME should have two meanings: "myalgic encephalomyelitis" and the more diagnostically accurate "myalgic encephalopathy", and that (for now) CFS should be known as ME/CFS primarily in the United States. They agreed to hang on to the CFS label in ME/CFS only because "dropping CFS completely from a new name could cause problems with disability and medical insurance claims", and "to preserve continuity in research, which currently refers to CFS almost entirely."

    http://www.prohealth.com/library/print.cfm?libid=12597
    http://www.afairname.org/profile.cfm?ID=7774
    http://www.ei-resource.org/news/chr...igue-syndrome-name-change-plan-moves-forward/

    You can find a good little article about the preference for the term "myalgic encephalopathy" by Charles Shepherd here:
    http://azlezoo.com/index.php?option=com_content&task=view&id=223

    You can find debates about the naming issue all over the place, but the bottom line is that CFS is the worst of the bunch, and now comes complete with the vaguest definition, allowing psychologization of a clearly organic disease.

    Alright, enough pseudo-diversion...sorry for the length folks :eek:...back to the heart of the thread...
  12. Dr. Yes

    Dr. Yes Shame on You

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    Back to the future...

    Suzy - Thanks so much for clearing things up!...And for the exhaustive work you've put in. :) I do understand things better now (I hope!) And thank you for the expression "elf off". I may find it useful when I'm grumpy and tired on Christmas and someone shouts or sings a bit too loud...;)

    Based on all the info so far, for us folks in the US...

    Seems to me that in the upcoming ICD (American flavor), we need to push for CFS to be coded in G93.3 (and at the very least make sure it is not taken out of the 'organic' disease category, i.e. not put into the Mental Disease section (Chapter V)). And(/or?) make sure that ME is defined as broadly by the CDC, etc as it is in Europe (and is defined the same way in our upcoming ICD-10CM as it is right now in the rest of the world's ICD-10, as has thankfully so far been proposed) so the majority of us can get an ME diagnosis for the purposes Mike brought up.

    Btw, Mike, do insurance companies recognize the ICD code for ME, and do doctors diagnose according to the current US ICD regulation regarding ME, which sucks?

    In the very near future, as Suzy said, we have to make sure that the DSM-5 group does NOT include mention of CFS in the upcoming DSM, nor does it succeed in getting the ability to attach an "extra" psychosomatic diagnosis to any medical condition coded in the ICD's.

    We also need to put an end to this idea that "medically unexplained illness" means it's OK to attach a psychiatric diagnosis to it. That's where I think Levi's legislation idea can serve as a wedge. I'd be happy to let them meld "MUI"'s with "explained" illnesses as long as it was first established that BOTH are off-limits to "somatic symptom disorder" add-on diagnoses!

    Sarah G -
    Great point about the strange insistence on universal biomarkers in CFS... CAA et al, let's tell them that we have enough to take 'CFS' out of the "functional somatic" category! Help us fight those on the DSM revision group who think otherwise (not to mention CDC, etc etc)!

    Yes, and we need to get that straight in the CAA info (CMEs, etc) for doctors!!
  13. Dr. Yes

    Dr. Yes Shame on You

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    From Lisette:
    My guess? Because that was before psychiatric drugs became big business. Now that there are antidepressants du jour flowing out of drug companies, there can be vested interests and "lobbies" created within the psychiatric profession.

    This was brought up on Levi's thread, I believe... it's a good idea, BUT - remember that Reid and most other Congressmen are very tight with the pharmaceutical industries. Hence much of our health care probs in this country.

    :eek::eek::eek: WHAT?! No, please, don't!! My brain needs three vacations and a masseuse!


    from ME agenda:
    Similar ratio here in the U.S., I'm sure. My take: big void in advocacy for various reasons, huge vested interests against the advocacy we do have.

    Just a thought on MS advocacy - Back when I was in grade school, local schools had a thing called the "MS Read-a-thon" to raise money for MS research. That's how I grew up knowing about MS, and I guess we ended up being cute canvassers for MS, too. There are WAAY more CFS patients now than MS patients back then. Yet I can't think of a single public awareness program we have now that is even THAT effective.
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Current DSM-4 and ICD-10 equivs for Somatoform Disorders sections

    I thought it might be useful to have a comparative table setting out the current codings for "Somatoform Disorders" in DSM-4 and Chapter V of ICD-10.

    Perhaps someone in the US might locate and post a copy of the most recent proposals for:

    a) The Clinical Modification ICD-10-CM proposals for the Chapter V section for Somatoform Disorders;

    b) The Clinical Modification ICD-10-CM proposals for CFS, PVFS, ME codings;

    c) The date by which the ICD-10-CM codings are to be "frozen"


    (I'd like to have these for my own sites, as well.)

    A little point: DSM appears to be using both 5 and V on its website, Twitter and Facebook. The monographs published by the APA publishing arm use DSM-V on their covers. The special webpages set up for "DSM Prelude site" used 5 in the URL. It's not clear whether APA intends to drop the use of Roman numerals in its forthcoming edition. Although ICD Revision are making their style guides publicly accessible, there is no DSM style guide to consult.

    ICD-11 is proposing to drop the use of Roman numerals. In its Style Guide, it sets out that the Chapters in ICD-11 will be styled "Chapter 5", "Chapter 6" etc. But I will continue to refer to ICD-10 Chapters as they are currently styled - that is as "Chapter V" and "Chapter VI".


    Table source:

    Somatoform Disorders: Time for a New Approach in DSM-V (Am J Psychiatry 2005; 162:847–855)

    Mayou, R, Kirmayer, L, Simon, G, Kroenke, K, Sharpe, M.

    (Full text free here: http://ajp.psychiatryonline.org/cgi/content/full/162/5/847 )


    [​IMG]


    See also:

    Diagnostic criteria for 300.81 Somatization Disorder

    http://www.behavenet.com/capsules/disorders/somatizationdis.htm
  15. Cort

    Cort Phoenix Rising Founder

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    I basically agree with you on all points Dr. Yes - rather shoddy arguments on my part. :eek: I know those extreme neurologic symptoms are not common in all the epidemic outbreaks. The twitching muscles, as I remember, were more like muscle spasms. My recollection is that even the outbreaks differed from each other to some extent. The end state of the outbreaks, though, was a very CFS-like condition - characterized by extreme fatigue, etc.

    I'm part of the Fair Name Campaign and I do think CFS should be referred to as ME/CFS.
  16. Martlet

    Martlet Senior Member

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    Not really Cort. The muscle twitching is more like when you have a twitching eyelid, except in larger muscles like those in the arms, legs or abdomen. It just starts twitching and stops when it's ready.

    Muscle spasms are a whole other thing. I get those in my hands and in my legs. They hurt, the twitching doesn't.
  17. annunziata

    annunziata Senior Member

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    I agree with you, Martlet. I have three rather distinct muscular problems, beyond the sensation of heaviness and exhaustion that accompanies effort. The twitching, which is most often in my hands, doesn't hurt, but there is a weird sort of 'buzz' that precedes it. It's certainly weird, and not very pleasant, to have your hand leaping about on its own. I also get muscle spasms and cramps, and they are painful. And pain that feels as if my muscles had been submerged in acid -- this usually follows pushing too hard, e.g., too long or vigorous a walk. It's always seemed to me that the 'myalgic' part of ME was very prominent. I'm sure there's variation from one patient to another, of course.
  18. fresh_eyes

    fresh_eyes happy to be here

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    Dr Yes, thanks so much for your excellent work summing up the issue at hand. I broke your earlier post down into a list in the hope that it will help me make sense of how to move forward. (Red is Dr Y, and black is me.) I numbered them according to what I see as their priority, a balance between importance, urgency, and the likelihood that we can do something useful. Hope this makes some sense!

    Top priority, IMO. Shall we draft a basic statement on these two, which are basically two facets of one issue? Per suggestions on this thread, shall we try to enlist help from Wanda Jones in getting our position to the right people?

    I am very enthusiastic about Levi's legislation idea, partly because I don't think it's been tried before and it might actually attract some attention (if I'm wrong about this, can anyone point me to where it's been tried?).

    IMO, it seems possible that we might make some headway here, with insurance companies in the US that apparently already recognize 'ME', per Mike. Mike, can you give us more specifics? And Dr Yes, can you expand on your objections to the existing ICD code?

    I put this one last just because we've gotten nowhere with the CDC, and though I do think we need to register our objections, I seriously doubt we will be able to affect any change there.

    One more thought, re enlisting help from Harry Reid:
    If XMRV pans out, we are a goldmine for the pharmaceutical industry. We haven't gotten very far just asking for justice - perhaps it will serve us to harness the inexorable power of corporate greed at this point. Big Pharma isn't going to let the CDC sweep XMRV under the rug if they stand to make gazillions off of us, so in some strange way, maybe they can serve as an ally.

    OK, brain hurts. Hope - again - that I made some sense here!
  19. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    A few bits and pieces before I shoot off:

    1] The Editorial: “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report” published by Dimsdale and Creed, on behalf of the DSM-V Somatic Symptom Disorders Work Group, in the June ‘09 issue of the Journal of Psychosomatic Research is the most recent information we have on the SDD Work Group's recommendations as they stood in April 09.

    Free full text and PDF versions of the June ‘09 Editorial available here:

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

    Several Letters to the editor in response to this Editorial (including a response from Dimsdale and Creed) have been published in the January ‘10 edition of this journal, but these are not free access.

    All proposals so far published by the SDD Work Group have been published in purely narrative form, as two brief updates on the APA's DSM-V webpages and in the Editorial, above. The SDD Work Group has not set out in any detail, or in tabular form, any proposals for public consumption. It is not known how detailed the alpha draft will be.



    2] The Canadian Clinical Modifcation is ICD-10-CA.

    PDFs here:

    http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=codingclass_e

    ICD-10-CA and CCI tabular list and alphabetical index are available in downloadable, printable PDF. To access one of these documents, please click on the link below.

    Version 2009 ICD-10-CA Tabular List, Volume 1 PDF (4.9MB)
    Version 2009 ICD-10-CA Alphabetical Index, Volume 2 PDF (4.3MB)
    Version 2009 CCI Tabular List, Volume 3 PDF (6.1MB)
    Version 2009 CCI Alphabetical Index, Volume 4 PDF (2.1MB)


    http://secure.cihi.ca/cihiweb/en/downloads/ICD-10-CA_Vol1_2009.pdf


    Version 2009 ICD-10-CA Tabular List, Volume 1 PDF (4.9MB)


    [...]

    G93.3 Postviral fatigue syndrome

    Includes: Benign myalgic encephalomyelitis

    Chronic fatigue syndrome


    Excludes: fatigue syndrome NOS (F48.0)


    G93.4 Encephalopathy, unspecified


    Excludes: encephalopathy:

    • alcoholic (G31.2)

    • toxic (G92)


    -----------

    So Canada appears to have Chronic fatigue syndrome and Benign myalgic encephalomyelitis sitting under Postviral fatigue syndrome at G93.3 in these 2009 volumes.

    If anyone has a good primary source for the most recent proposals for the classification/codings for PVFS, ME and CFS in the forthcoming US ICD-10-CM (October 2013) Clinical Modification and the date by which these will be "frozen" please alert me with URLs and I will add this to my new DSM-5 Watch site (which is live but with nothing on it yet).



    3] Comment by UK social scientist Angela Kennedy:

    A word of caution about the word 'somatic'

    21 July 2009

    I've noticed for some time that various people have been using the term 'somatic' as if it signified a 'psychosomatic' or 'psychogenic' condition.

    This is incorrect. The OED definition of 'somatic' is "of or relating to the body, especially as distinct from the mind" (my italics) The word comes from the Greek 'soma' meaning 'body'.

    Even when proponents of 'psychogenic' explanations (it's in your mind, you're imagining it, misinterpreting it, faking it, caused it by your own beliefs etc. etc. etc.) use the term 'somatic illness' they actually do mean an illness of the body. They may then claim this somatic (or bodily illness) is caused by psychological dysfunction, but the word 'somatic' does not mean "illness caused by psychological dysfunction". It merely means illness of a body, or a bodily illness.

    It is important that this word is used correctly, especially when people write to the media, government, the medical establishment etc. Otherwise we are in danger of seeing apparent objections published, from advocates, to saying ME/CFS is a bodily illness, purely because someone has used the word 'somatic' incorrectly!

    By Angela Kennedy




    4] There is some general comment around the DSM revision here, in response to the APA's announcement that they are moving the publication date of DSM-V to May 2013.

    http://psychcentral.com/blog/archives/2009/12/17/dsm-v-suggestions-for-change/

    DSM-V: Suggestions for Change
    By John M Grohol PsyD


    17 December 09
  20. brenda

    brenda Senior Member

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    http://www.patient.co.uk/doctor/Somatisation-Disorder.htm

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