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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. fresh_eyes

    fresh_eyes happy to be here

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    ETA: Dr Yes has written a very lucid summary of this topic, and why we should care - it's so good, I decided to put it at the top of the thread:
    (My original first post is in blue, below.)


    Hi folks. Disclaimer fist: this thread is aimed primarily at Americans, though of course everyone is welcome, and please forgive my radical simplification of this complex topic.

    The American Psychiatric Association is lobbying the World Health Organization to "harmonize" their diagnoses, which for our purposes means they may want to have ME/CFS changed from its current classification under infectious diseases of the nervous system, to a classification under functional somatic disorders, and/or make it easier to add a functional somatic diagnosis along with any physical disease (OK, OK, you're physically ill - but you're also mentally ill.). Uh-oh.

    To my mind, this seems like a step in the direction we've been fearing, that the psych lobby is trying to reinforce their position in the face of the XMRV finding (and other findings that point to biological disease).

    There are activists keeping an eye on this for the UK, but there are important differences between the UK and US situations. Does anybody know if there is already US advocacy being done focused on this topic? Has the CAA, for example, issued any statements on this? I'd appreciate anybody pointing me toward any work already being done on this. Time is short.
  2. dipic

    dipic Senior Member

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    WTF, seriously!?
  3. fresh_eyes

    fresh_eyes happy to be here

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    @ dipic - I know, right? While this kind of thing is apparently (and shockingly) par for the course in the UK, I wasn't aware of it until I got on this forum.

    Got the info from this post:

    http://www.forums.aboutmecfs.org/showpost.php?p=26135&postcount=10

    The press release from the APA is here, as a pdf:

    http://www.psych.org/MainMenu/Newsroom.aspx

    MEAgenda, who specializes in the UK, suggested that we take the US issue to its own thread. If anyone knows any more than I do about all this, please chime in!
  4. Michael Dessin

    Michael Dessin Senior Member

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    Disturbing

    I don't know much about this, going to do more research.

    If this is the case, it's total bullshit and I'm fed up.

    I will write a 100 letters to both organizations, show up at there front door if I have too. If the WHO makes reform to the definition of ME, implying a psychiatric premise of this disease, it will be a absolute disgrace.

    Mike
  5. starcycle

    starcycle Guest

    It's almost amusing. If someone walked into a doctor's office and said they were "hearing voices," the doc would say "psychotic, auditory hallucinations," etc. But walk in and say you are fatigued beyond belief, and you are: somatizing, hysterical, malingering, etc.

    So think about it: they take the word of the person who by their own admission is psychotic, but they don't take the word of the person who is not psychotic!

    Bizarre.

    I asked one of these a-hole doctors once who was giving me a hard time, "oh btw - what's the lab test for schizophrenia again? What's the lab test for depression?"

    Oh, right - there isn't one. And yet those disorders are "real." :rolleyes:

    I asked him how he knew all the people who the doctors thought had schizophrenia weren't really just malingering to be able to collect disability. He said it was obvious from their symptoms what they had. I just left it there - sometimes you know it's just no use to argue with some of these idiots. :p
  6. Michael Dessin

    Michael Dessin Senior Member

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    Yes

    Good points...Also too, do they ever bother to consider the cause of the schizophrenia, many cases are chemical poisoning such as mercury, which can be resolved, they don't give a shit!
  7. Martlet

    Martlet Senior Member

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    Starcycle - That is exactly the point I was making to my husband last night. Exactly the same thought.

    If go in and tell the doctor Moses is talking to me, I will be taken 100% seriously and given the appropriate help. Yet there is absolutely no test for those voices, no test for biblical personages, demons or little green men from Mars. They would simply take us at our word.

    And this attitude extends to physical problems. My husband had a colleague with back pain. No tests ever showed anything wrong with him, but he got sympathy, months off work and sick pay, once again based on nothing but his word.
  8. starcycle

    starcycle Guest

    Lol - right, back pain is another one. And guess what? In a good number of those cases, back pain actually *IS* psychogenic!

    rofl, I can't take it. They get everything totally backward. :D (no pun intended :p)
  9. fresh_eyes

    fresh_eyes happy to be here

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    @ Mike - Thanks for your interest. Do let us know what you find out.

    @ everyone - I know, it's so absurd it seems laughable - until I realize that in the UK people are actually being forcibly committed to psych hospitals on the basis of believing they are physically ill. How can this be??? What is this, the middle ages? Argh.

    Here's the very thorough post from MEAgenda:

    http://meagenda.wordpress.com/2009/...oom-series-four-dsm-v-what-do-we-know-so-far/

    I wish my mushy brain could truly make sense of all this, but so far I've only got the gist. Any and all input most welcome. It looks like the comment period on these proposed revisions begins in January and lasts for 2 months.
  10. Lisette

    Lisette My daughter and I

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    Let's not join the contemptuous

    I know that many people with other chronic issues-- especially chronic pain issues that are not found on x-ray or MRIs-- have had some of the same humiliating and unjust experiences that we have had with CFS. I'm one of those people.:(

    We think that if we had a "legitimate" disease that we would be treated more fairly. Perhaps.

    But I have seen people treat my friend with MS with just as much suspicion that perhaps he could avoid his symptoms altogether if he were to change his diet and exercise regularly. People don't say it this bluntly, but it does get communicated.

    Another friend has asthma, and people get irritated that she can't tolerate rooms full of tobacco smoke, perfumes or cat dander. I have seen people roll their eyes when she says she has to go outside, as if she were exaggerating for attention. She has nearly died twice!

    We should be united as fellow human beings, not just as patients of one specific disease. Anyone being treated unfairly causes harm to all of us.

    We might envious when we see how wide-spread the awareness of AIDS or breast cancer is-- but we would be grateful if someone we loved contracted these diseases.

    I know that what happens to us is horribly wrong, but the blame does not lie with other patients. They didn't ask for their problems, either.

    Sorry to sound preachy. I have had my own bouts of envy toward other groups. It always ends up making me feel more alone and helpless, and I don't want any of us to feel any more worse than we already do.

    I know about the Wessley school, and I am also horrified by all the ground that they have gained. It is truly an insult and a life-altering detriment to all patients everywhere who need treatment, and not analysis.
  11. starcycle

    starcycle Guest

    I think we were talking more about the doctors and the illogical and inconsistent attitudes they have than trying to malign anybody who is sick. Having multiple chemical sensitivities and asthma to smoke, perfume, gas and diesel fuels, new clothes, etc. I can completely empathize with anyone with that condition. As for back pain that's psychogenic, that's just as painful and debilitating as pain from actual physical causes, if not more. But that doesn't mean it's not psychogenic. ;)

    Again, the point is the doctors who will accept certain things on the face of it with no diagnostic tests or objective criteria whatsoever, but who won't do the same for people with CFS (even though ironically there are multiple objectively measurable abnormalities that could be found), or MCS, or basically anything they have made up their mind in advance is not "real." It's about their irrationality, bias and brainwashing, not about the people who are ill. ;)
  12. gracenote

    gracenote All shall be well . . .

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    how do we know this

    I think we need to be careful here. How do we know that just because the cause of this back pain has not been measured by conventional means that it's psychogenic? I think the same thing is happening to some chronic pain issues as to CFS. I would hesitate to make a statement such as this.
  13. starcycle

    starcycle Guest

    No, it's just a fact that some back pain is psychogenic, just like it's a fact that there are disorders like phantom limb pain. That doesn't mean it's not real, and it doesn't minimize the pain or the debility.

    But again, it's about the attitudes of the medical establishment in accepting that particular things like back pain or schizophrenia are "real" without any objective measures, and not other things (that they have been indoctrinated against accepting) even with objective measures.
  14. Dr. Yes

    Dr. Yes Shame on You

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    For those who were as Confused as I was...

    Hey all (and getting back to the subject of THIS thread, folks!),

    Here's the clearest explanation I've found about the ICD codes in the US vs. UK and the status of CFS and ME in each; it's called "The WHO ICD in relation to M.E. and ‘CFS’ – Short version" from the Hummingbirds' Foundation for ME:
    http://www.hfme.org/PDF/WHO_ICD_ME_and_CFS_Short.pdf

    It's important to see how the WHO treats ME (and what they call Post-Viral Fatigue Syndrome) differently from CFS. CFS isn't even listed in ICD-10 (the version everyone except the US uses), except in the index, which refers you to ME and PVFS but doesn't make clear what the relationship is.

    Unfortunately the US is still using ICD-9-CM, its own version of the older ICD-9; which doesn't clearly recognize ME or PVFS either, and classifies CFS as a vague set of symptoms, NOT as a disease per se.

    The proposed version for the US, ICD-10-CM, is supposed to finally recognize ME and PVFS as neurological diseases, but specifically EXCLUDES CFS from that category and still leaves the term "CFS" as a poorly defined symptomology rather than a specific disease. (They're probably right about that... but that means according to the WHO most of us should be diagnosed with ME or PVFS!)

    The problem is that the CDC specifically rejects ME as an alternate term for CFS, and states that THEY ARE NOT THE SAME DISEASE. (I don't know how the CDC defines "ME"; does it even have a definition for it? Does anyone know?) Also, as we all know, few if any doctors, and no insurers I know of, will give or accept the diagnosis of ME. All of us get thrown into the CFS bag, which is not defined as a disease by the WHO, and in fact will be explicitly excluded from the grouping of ME and PVFS in the upcoming ICD-10-CM. All this is no doubt the result of the CDC et al "modifying" the WHO definition to match their's.

    A quote from the pdf link I gave above:
    And now we have the revelation (to us folks, anyway) that the APA wants the WHO to 'harmonize' its upcoming ICD-11 (the version the UK, etc will be using; we backwards yanks will be using a different version called ICD-10-CM) with the DSM, which could apparently lead to CFS being defined as a somatoform disorder for the first time. I don't know it that will happen to ME too, but even if it didn't, that wouldn't help us in the US since none of our docs or insurance carriers know what ME is!

    Just when I was thinking the XMRV finding would make things better for us...

    One more thing from the link above:
    I think they need a "TAG" for more than just neurology dealing with our disease, otherwise it would be difficult to counter the TAG for Mental Health.

    I would guess that, besides focusing on the WHO, we here in the US need to bring pressure to bear on the APA on this issue.. MEAgenda's great posts include links to an article and an interview by Christopher Lane, who reports that there is already a "civil war" going on in the APA over the increasing ludicrousness of the DSM definitions of psychological disease. I also see a potential link here with Levi's proposed legislation (on its own thread) to prevent psychologization of unexplained medical illnesses...
  15. gracenote

    gracenote All shall be well . . .

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    I beg to differ

    I realize we're getting off-topic here and I hate to belabor this point, but I think this is important. I think you are falling into the same trap that the doctor's we criticize fall into — that a physical problem that is not easily supported by conventional tests in psychological.

    Phantom limb pain is not psychogenic. It is now believed to be a problem in the brain (rather than the mind). By understanding the underlying mechanism of this pain, appropriate treatment can occur.

    ---------------
    ETA:
    My apologies, Dr. Yes (and everybody else). I was writing this when you added your post.
  16. gracenote

    gracenote All shall be well . . .

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    ME is not CFS

    Here's a quote I found.

    http://www.cdc.gov/cfs/cme/wb1032/chapter1/overview.html

    When I searched the CDC site using "what is myalgic encephalomyelitis" (in quotes) it took me directly to their study "Surveillance for Chronic Fatigue Syndrome—Four U.S. Cities." I could find no mention of "myalgic encephalomyelitis" in that study.
  17. Dr. Yes

    Dr. Yes Shame on You

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    Hi gracenote :),

    Yeah I saw that on the CDC site too. Thanks for posting the quote; that's what I was actually referring to. As you can see, they don't recognize CFIDS as a valid name (so what do they think of the CFIDS Association of America's name?) and refer to a separate "case definition" for ME, but I couldn't find one on their site. I have a feeling they don't have one, based on their previous (80's) commentaries favoring the name change to CFS. But at that time, if you read Holmes' own reasoning, they weren't saying that the two diseases were distinct, they just wanted to give "ME" a "more accurate" name, since they didn't see evidence of "encephalomyelitis" in their evaluation of the outbreak victims. (Of course, we all know how thorough that 'evaluation' was...)

    Over the years they've further separated the two and marginalized the history of ME so that they can now (unscientifically) claim the two are different diseases. The business about ME requiring "neurological" and "muscular" signs --- we all know CFS has neurological signs (what the hell do they think orthostatic intolerance/ NMH are?)... and since when did "sign" become a proper medical term? Did they mean symptom? ME has the same muscular "signs" or "symptoms" that have been described over and over in "CFS".

    Given all the issues we're facing, including this WHO thing, the DSM nonsense, psychologizing of a physical disease... I'm really starting to think that we should advocate for the reinstatement of ME as the correct term for CFS. The rest of the world uses it, and the WHO has listed it as a neurological disease for decades, which gives us leverage (and which is why the UK psych lobby has been trying so hard to get the WHO to drop ME altogether). The CDC opened the door for all of these problems with the invention of "CFS", and maybe the only way to fix things is to get rid of CFS entirely (not even settling for "ME/CFS").
  18. starryeyes

    starryeyes Senior Member

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    Great. So if you happen to live in the U.S. and you have CFIDS then you will be labeled with CFS which no doctor or nurse or any other medical professional should ever consider being the same as Myalgic Encephalomyelitis but instead should encourage you to exercise and get mind treatments. Clearly, we're all just a bunch of malingering idiots who have nothing really wrong with us. We're just tired.

    Does this make you angry? :mad:

    Where is the CAA???!! They're supposed to be our patient organization!
  19. gracenote

    gracenote All shall be well . . .

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    here's the article

    On Being Sane in Insane Places

    Science, Vol. 179 (Jan. 1973), 250-258.

  20. Stuart

    Stuart Senior Member

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    The Effect of CMEs, Toolkit, and Literature heavily citing CBT/GET

    Dang gracenote, you're just too quick! I was opening my copy of the CMEs and Toolkit to find just the paragraph you quoted.

    But you are missing something important - all three CMEs and the Toolkit had CAA members involved, each with Kim McCleary.

    All include CBT and GET or Exercise Therapy as a major feature of each CME or Toolkit so you wonder why doctors think the way they do? You can find many examples in the CAA literature as well were you will find the smiling faces of Peter White and William Reeves in a prominent sidebar column:

    http://www.cfids.org/sparkcfs/2008/toolkit4.pdf
    http://www.cfids.org/sparkcfs/clinical.pdf
    http://www.cfids.org/resources/CBTFactSheet.asp

    http://www.cdc.gov/cfs/toolkit.htm

    CFS: A Primer for Allied Health Professionals, Course WB3151 http://origin.cdc.gov/cfs/cme/wb3151/
    The following individuals are considered content experts for this activity:
    James Jones, MD, Research Medical Officer, Centers for Disease Control and Prevention
    Teresa Lupton, RN, BSS, Coordinator for Medical Opportunities, CFIDS Association of America
    Kimbery McCleary, BA, CEO, CFIDS Association of America
    William Reeves, MD, Branch Chief, Centers for Disease Control and Prevention
    Vicki Walker, BA, Manager, Research and Public Policy, CFIDS Association of America (formerly)
    The CME supports the Reeves Empirical Definition
    The International Working Group Case Definition of CFS (Fukuda et al., 1994) and clarifications published in 2003 (Reeves et al.) provide the current international standard for diagnosis of CFS in research studies and provide appropriate guidelines for clinical diagnosis. CDC has developed an empirical case definition that addresses diagnostic and assessment needs in both the research and clinical arenas (Reeves et al., 2005).
    The Assessment Tools use the Reeves Empirical Definition
    Use of this battery of tests follows the recommendations of the CDCs empirical approach to CFS definition (Reeves et al., 2005). Appendix A (PDF 149 KB) includes additional information on these assessment tools.
    Remember there are no tests or physical signs!
    CFS has no characteristic physical signs or diagnostic laboratory abnormalities.:confused:
    Anything that IS physical is definitely NOT CFS!
    CFS patients may report many other symptoms that are not part of the syndrome, such as allergies or sinus problems; numbness or tingling; feeling in a fog; dizziness and balance problems; sensitivity to substances and stimuli; and night sweats (Nisenbaum et al., 2004). Health care professionals should investigate the possibility of underlying medical and psychiatric disorders in those patients who report numerous symptoms not strictly associated with CFS and should remain alert to the development of new symptoms that require further evaluation.
    (If you look at the Katrina Berne Symptom Checklist you will see these other symptoms ARE part of CFS/ME http://www.wpinstitute.org/patient/docs/c1-berne.pdf and if I recall correctly may be in the Canadian Definition http://www.wpinstitute.org/patient/docs/CanadianDefinitionME-CFS.pdf).

    The following is not implying a psychiatric basis for CFS?
    Depressive disorders frequently complicate care of patients with CFS. Twenty-five percent of CFS patients suffer a major depressive disorder, and 50% to 75% have experienced a depressive episode during their lifetime (Afari and Buchwald, 2003). In comparison, 10% of American adults have a major depressive episode each year, and 17% have had at least one lifetime episode (Kessler et al., 1994).
    Course Two, WB1032, CFS: Diagnosis and Management http://www.cdc.gov/cfs/cme/wb1032/introduction.html
    This course was authored, reviewed and/or edited by the following individuals:
    James Jones, MD, CDC/NCID
    Teresa Lupton, RN, BSS, CFIDS Association of America
    K. Kimberly McCleary, BA, CEO, CFIDS Association of America
    William Reeves, MD, CDC/NCID
    Vicki Walker, BA, Graduate Certificate in Public Health Issues, formerly of the CFIDS Association of America
    As well as the Medscape CME - Chronic Fatigue Syndrome: From Diagnosis to Management http://cme.medscape.com/viewprogram/17442
    Marcia Harmon; Lucinda Bateman, MD; Charles Lapp, MD; K. Kimberly McCleary
    As late as 2008 CAA was citing CBT research from Wessely: http://www.cfids.org/cfidslink/2008/110702.asp
    One theory about the cause of this hypocortisolism is that it occurs well into the course of CFS due to factors such as inactivity, sleep disturbance, chronic stress and deconditioning. In this study, published in the Journal of Affective Disorders, researchers set out to determine if (CBT) therapy aimed at reversing those factors would result in increased cortisol output in CFS patients.
    Roberts A, Papadopoulos A, Wessely S, Chaldera T, Cleare A. Salivary cortisol output before and after cognitive behavioural therapy for chronic fatigue syndrome. Journal of Affective Disorders 2008
    The studies cited in these CMEs and Toolkit come from the mainstream CDC friendly crowd, they do not include the many research papers which discredit them or show clear physiological findings which would fly in the face of CFS has no characteristic physical signs or diagnostic laboratory abnormalities.

    I am tired of the where oh where did the CAA support the Reeves Empirical Definition, or that they didnt give much credence to CBT, it just is not true.

    That said, there was a turn in the CAA since 2008, the problem the past is still present and these materials were renewed this August and dont expire until August 8, 2012. No more straddling the fence!:mad: I would really like to see new CMEs, Toolkit, and glossy slicks (or PDF), that is citing the other research that the CDC likes to avoid; you know the physiological kind, with tests and physical symptoms. :cool:

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