The 12th Invest in ME Research Conference June, 2017, Part 2
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DSM5 - Ticket back to Reevesville

Discussion in 'Action Alerts and Advocacy' started by Khalyal, Feb 12, 2010.

  1. Khalyal

    Khalyal Guest

  2. MEKoan

    MEKoan Senior Member

    From CFS United:

    I strongly suggest everyone read the page at the above link.
  3. mezombie

    mezombie Senior Member

    East Coast city, USA

    I second Koan's suggestion! This is important!

    Khaly, thanks so much for not only blogging on this topic but putting it into the advocacy section!

    Your old friend,
  4. Khalyal

    Khalyal Guest

    Jeez, two of my favorite peeps in the whole world! Thank you, Koan and Zombie!

    What is our advocacy group doing about this?
  5. MEKoan

    MEKoan Senior Member

    This is a seriously fine piece of work, Khalyal.

    Everyone should read this. I'm going back to it again later.

    Many, many thanks to you!
  6. Gerwyn

    Gerwyn Guest

    The one symptom they cannot somatofy is post exhertional malaise if measured objectively The way they classify things type 1 diabetes is a somatoform disorder.We should also get on to the rheumatologists to say that the psycho,s are questioning their diagnostic ability! That should be fun
  7. oerganix

    oerganix Senior Member

    "Develop a zero tolerance for bullshit."

    This is exactly what we have been 'on about' over at the 'psych lobby strikes again' thread. There is a clear and present danger that, if this passes and becomes entrenched, anyone with our illness and whole lot of others, could be subject to 'intervention', a nice little euphism for being incarcerated in a mental institution for 'our own good', if we are unable or unwilling to accept 'treatments' that are abusive, ineffective or dangerous to us. There is no informed consent under these provisions. Whatever prejudiced or sadistic doctor in charge can prescribe anything s/he likes.

    Autistics have already hit the news with their protests against they way they would be re-classified. Where are our advocates voices on this?

    I also asked the Atlanta journalists who broke the story on Reeves' move to keep an eye on him at this new position, as I also don't think he's off our backs yet.

    'Make comments at the DSM5 website:
    Stand up and scream your loudest. Develop a zero tolerance for bullshit.

    Dont let your suffering be your cloak. Instead, let it be your shining spear of righteousness, your sword of justice. Use it without prejudice. Set your eye on the truth and do not waver.'
  8. Lily

    Lily *Believe*

    Totally agree, oerganix. This is not just our illness, but many others. There are many ways people may be effected by this. The good news (and the bad news) for those in the US is there is a big shortage of mental health facilities,(oh and no one to foot the bill) so we're not likely to incarcerated, but as others have discussed, your disability status can definitely be effected if it is perceived that you are not following a physician's recommendations.

    As for the Atlanta journalists, I hope they do continue to keep an eye on this. But if I am not mistaken, one of them (Walls?) made the comment that he would like to do more, but he really needed to get back to the job where he actually gets paid.:(

    Oh and I really like this:
    Maybe the thread should be renamed Zero Tolerance for DSM-V Bullshit!!!
  9. Min

    Min Guest

    Thank you for making this so very clear

    OMG we've been sold down the river.
  10. oerganix

    oerganix Senior Member

    They'll be taking public comments for a couple of months and the new DSM isn't scheduled to come out until next year. There is talk of it being pushed back even later. So, do not despair. This is just one more event in a long push in this direction, of pschologizing many more organic illnesses. Even the psych profession is divided over this, so keep hope alive!
  11. Khalyal

    Khalyal Guest


    Visualizing this.

  12. cinderkeys


    My DSM5 comment

    Thanks, Khalyal. I followed the DSM5 link on your blog and posted the following comment:

    How do you propose to differentially diagnose "complex somatic symptom disorder" and a disease with a biological cause? If it's CSSD whenever doctors haven't found evidence of physical causes, you have a problem. It means that any real disease that medical science doesn't have a handle on yet (like AIDS in the early '80s) will be labelled CSSD by default. Patients with a somatoform disorder known as hysterical paralysis used to be institutionalized. Turns out they had multiple sclerosis.

    Then there are the diseases that have been catalogued by medical science, but are rare, and are unknown to many doctors. Are you prepared to take responsibility when when a misdiagnosis of CSSD delays effective medical treatment, possibly leading to the patient's death? Are you prepared to deal with the lawsuits?

    In retrospect, I wish I'd condensed this a little. The important bits are at the end. It may not have occurred to the psychologists who want to include CSSD that they could *possibly* make a wrong diagnosis, but they'll hear the word "lawsuits."
  13. cinderkeys


    Seeking clarification

    I went back to the Proposed Revision page for CSSD, and something occurred to me. Is this actually worse than what we have already?

    Don't get me wrong. I don't like the proposed "complex somatic symptom disorder" one little bit, for all the obvious reasons. But it seems like the new category is just a consolidation of a lot of already existing categories. CSSD includes previous diagnoses of:

    * Somatization Disorder
    * Undifferentiated Somatoform Disorder
    * Hypochondriasis
    * Pain Disorder Associated With Both Psychological Factors and a General Medical Condition
    * Pain Disorder Associated With Psychological Factors

    Is it really worse to be slapped with the CSSD label than, say, "somatization disorder"?

    I'd love to hear from somebody who understands the current DSM designations better than I do. If CSSD really is worse, I want to know why so I can do better advocacy. If it's superficially different but not worse, we can be less fearful, but still use this as an opportunity to make people aware of why psychologizing diseases is so dangerous.
  14. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    Comments I sent to DSM5:

    "I'm going to have to add to my previous comments, included at the end.

    Re: Criterion B

    One can satisfy criterion B by meeting 2 of the 4 options, thus criterion B is satisfied if the patient has both (1) a high level of health related anxiety and (5) health concerns that play a central role on his life.

    This is patently ridiculous. If a patient has ME/CFIDS, AIDS or MS, the fact that one has a high level of anxiety and that health concerns play a central role in one's life obviously does NOT mean the patient is somatisizing. Perhaps this patient has an adjustment disorder.

    These criteria seem tailored to target those who have serious diseases and are abused by some psychiatrists (causing iatrogenic anxiety) and patient activists opposed to some psychiatrists (for whom health concerns pay a major role in their lives).

    The fact that some members of this committee have been active in the war on ME patients does not seem to be a coincidence.

    Re: Rationale

    In the "rationale" section, you say:
    "Some patients, for instance with irritable bowel syndrome or fibromyalgia would not
    necessarily qualify for a somatic symptom disorder diagnosis."

    The words 'some' and 'necessarily' imply that many people with so-called "MUS" disorders like fibromyalgia are somatisizing. Obviously, this is untrue. This has to go.

    My previous comment:

    This looks very good!! I have ME/CFIDS and was very concerned that "CFS" was going to be named. I was pleasantly surprised to see this language in the rationale: "It clarifies that a diagnosis of CSSD is inappropriate in the presence of only unexplained medical symptoms. Similarly, in conditions such as irritable bowel syndrome, CSSD should not be coded unless the other criterion (criterion B—attributions, etc) is present." Your thoughts here are mine exactly! Please be sure to include this language prominently in the final product.
    I have previously criticised Dr. Sharpe strongly. I am very glad to see such good work here.
    Thank you, Justin Reilly "
  15. flex


    London area
    This is such an important thread and is totally under commented on. It shows me many people are really walking into a second, maybe even biggest disaster without realising it.
    This discussion is going on at another thread that I posted.

    So much hidden nonsense is in the proposals for the new DSM. What many have failed to realise is that if a doctor has a bullshit diagnosis at his disposal he will use it. This is because he doesn't have to think or get the wrong physical diagnosis. This is a complete set up by the medical profession because they can just say "the patient met the criteria for CCSD". That is them off the hook. Doctors really have no legal responsibility to get things right. If you tick the boxes the game is over and they can "diagnose you".

    This is like the car mechanics union coming up with the term "under performing car" then billing you for it and having no obligation to fix it. Doctors love this new approach to medicine because all the governing bodies are behind them and there is really no one to complain to. Its a kangaroo court situation. I'm afraid this is the future of modern democracy.

    The tide could really be changing in the whole of medicine and ME could be a testing ground for complete corruption of medical policy for years to come. If they can get away with this they can get away with any thing. I feel sure they are at least trying to get away with it.

    The only thing that will help us is a cure or medication that relives all symptoms then we will have no need to participate in the bullshit. But modern medicine doesn't care for cures when they are aiming to blanket label everyone. Governments want reduced health care costs and reduced populations, they also do not want to see life expectancy rising at its current rate. Harsh but true. On top of all this is cover up due to previous incompetence.

    The Internet is our biggest tool and our worst enemy at the same time. Its our worst enemy because governments know we are using it to educate ourselves and that frightens them. This is why they are obsessed with new control strategies. The new strategies are to set up fake advocate groups, studies and hearings etc appoint their own people and just deny everything they don't want to hear or just ignore it. How do you talk to someone who is ignoring you.

    The idea of government is really a little deluded any way. We are really controlled by the establishment. All of this DSM and medical stuff is just a reflection of government/establishment policy.
  16. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    We already know Dr. Sharpe, one of the somatoform committee members, is committed to persecuting us with, inter alia, his public declaration that we are "the undeserving sick."

    Check out what another committee member, Dr. Barsky, has to say in his book Feeling Better:
    "Often, however, people avoid ... activities ... because they mistakenly believe that the physical discomfort indicates that the activity is harmful.
    For example, many CFS sufferers restrict their activities because they believe that exertion worsens their disease; but studies have shown this is incorrect. In fact, a gradual, sustained program of progressive exercise is the best approach to this condition. Inactivity only worsens the fatigue by allowing muscles to become weaker, decreasing exercise tolerance, and actually increasing feelings of fatigue and exhaustion."

    p. 155

    Let these charlatans know what you think about their DSM revisions:
  17. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    A spot-on post by Cate on CFS Un-Tied Blog

    By Cate, February 15, 2010 @ 8:11 am

    My contribution to DSM-5

    Complex Psychiatry Hoodwinking Syndrome (CPHS)

    Here are the criteria:

    Medical Doctors posit simplified unsubstantiated personal opinions and theories regarding a patients mental state and physical diagnosis with the absence of any supporting testing to confirm said opinions.

    CPHS is a deceptive, delusional state, whereby the individual believes they are superior in judgment, and that all there is to know about the human brain and body is now known, and that any symptom set that does not neatly fall into the currently assigned categories are Psychiatric in nature.

    Psychiatry is a subjective, collective belief system that attempts to claim some validity through the science of Neurology but it is unclear just where that validity lies.

    To meet criteria for CPHS, criteria A, B, and C are necessary.

    A. Somatic symptoms: Sitting behind desks, paper/chart shuffling, pencil playing, leg and arm crossing, lack of eye contact and often flat facial affect.

    B. Misattributions, lack of concern regarding patients physical symptoms and/or test results, and preoccupation with their own grandiosity. At least two of the following are required to meet this criterion:

    (1) High level of Anti Depressant prescription writing.
    (2) Abnormal bodily symptoms are viewed as personality traits and cognitive choices
    (3) A tendency to assume the least about their patients health concerns (minimizing).
    (4) Belief that anti depressants are not dangerous medications that should be prescribed with caution, despite evidence to the contrary.
    (5) Health concerns assume a minimal role in their practice

    C. Chronicity: Although any one symptom may not be continuously present, the state of an aggravated sense of self importance and recognition of their superiority without commensurate achievements chronic and persistent (at least 6 months, but often found throughout entire careers).

    The following optional specifiers may be applied to a diagnosis of CPHS where one of the following dominates the clinical presentation:

    XXX.1 Fifteen minute patient appointments, one hour Drug Rep lunches.

    XXX.2 Egotistical behavior (co-morbid, Narcissistic Personality Disorder.)

    XXX.3 Psychiatry Lobbying disorder.
    This classification is reserved for those individuals presenting with CPHS, who go
    beyond the scope of individual practice and seek to psychologize all misunderstood, baffling symptom sets within the medical community.

    I have posted my initial reaction to this blog subject Khaly to provide a little comic relief regarding the very serious and threatening Complex Somatic Symptom Disorder diagnostic code, that if adopted, will affect EVERYONE with atypical forms of neruo immune disease, neurological or immune damage in general, or any patient presenting with chronic pain.

    My intent with this facetious response was to show the TOTAL subjectivity of such a diagnosis, and to question the current field of Psychiatry within similar subjectivity and opinion.

    ( I will post a more serious response shortly)

  18. Tammie

    Tammie Senior Member

    Woodridge, IL
    I do have a lot of knowledge about the DMS and how it is used/misused - I have an MA in counseling, and that required extensive knowledge of the DSM, among other things (& I was given the somewhat embarrassing nickname "the walking dsm" by classmates, bc of how well I knew it)......that said, I also have a very foggy brain going on rt now, and I have not actually used the dsm in a couple of yr bc I am on I am not up to thoroughly explaining rt now

    basically, though, as it currently stands, CFS does not fit into the somatic disorders criteria (of the DSM that is being used rt now).....there are similarities (if you ignore the real biomedical evidence of CFS), but there is enough criteria needed for a diagnosis that it is still hard to make a good case for putting anyone with CFS in that category....and as it stands CFS requires ruling out other illnesses, including psychological ones

    the proposed diagnostic category, however, is custom made to fit CFS, fibro, MCS, GWS, mold illness, and several other related illnesses into it.....and it changes things so that one could get diagnosed with CFS without ruling out mental illnesses

    two of the main Drs working on it are from the Wessley school of thought in the UK and have made clear statements that they believe that CFS, Fibro, etc are somatic illnesses, and they have also made far worse statements about patients.....and some of the language in the proposed category is taken rt from the UK's manuals

    plus, when it comes to getting a diagnosis from the DSM, unfortunately, what psychiatrists decide to label a patient with sticks and it generally unquestioned......other professionals further down the hierarchy cannot usually successfully question a diagnosis & get it changed, and the patient is never able to do so.....many psychiatrists are trained to view patients with mistrust (after all they are crazy, the thinking goes, so of course they are going to lie and distort the truth, etc)....I absolutely do not agree with this way of looking at things, even with patients who are seriously mentally ill, but I have seen it put into practice far too often....and the bias is even stronger when the patient is poor &/or not able to work (& how many wealthy and/or working CFS patients do you know?)

    further, there are no other psych illnesses that only require ONE symptom (as the proposed criteria for part A of this does....and somatic disorders esp have always required an abundance of symptoms, and those symptom have had to be from various body systems, neurological, pain, gastrointestinal, cardiac, etc, etc).....then there is the part B criteria, worded in such a way as to make it almost impossible for CFS patients not to fit at least two of those (if you have moderate to severe CFS it takes over your life, so of course you will be preoccupied with it, and if your illness is affecting every area of your life, it is awfully hard not to have some anxiety about it....the way that this is stated, it does not have to be excessive anxiety - they could easily say that ANY expressed concerns about your health would fall into this).....and criteria C - well to be diagnosed with CFS, you have to have had it for 6 months, so gee, I wonder where they came up with that one

    since I am not looking at the proposal as I write this, I cannot comment on everything listed under B, but the two that I mentioned were two that jumped out at my rt away, and it only takes two

    and as to the optional specifiers, well pain is pretty key in many of our cases, so that just helps to back them up further with this
  19. Dx Revision Watch

    Dx Revision Watch Suzy Chapman Owner of Dx Revision Watch


    Hi Oerganix,

    I hope you won't mind my clarifying that DSM-5 was scheduled for publication in May 2012, not 2011.

    In December, the APA announced in a news release that it was shifting the publication date forward by an additional year.

    The anticipated publication date is now May 2013.

    The PDF of the APAs 10 December News Release is here

    Short link:
  20. oerganix

    oerganix Senior Member

    I don't mind at all. You've done the hard work here and I really appreciate it. Thanks so much!

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