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DSM5 - Ticket back to Reevesville

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

  1. Dreambirdie

    Dreambirdie work in progress

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    Hey Maarten--

    Just to clarify, that was NOT my letter that I posted, but rather the letter of a local therapist whom I know. He is not an official Jungian, but he does have a background that includes both Jungian and process oriented therapies. He is also an excellent mediation teacher.
     
  2. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    OK. But you are aware that these are public threads and they will pick up on Google?

    Suzy
     
  3. Dreambirdie

    Dreambirdie work in progress

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    Hey Suzy--

    I checked with him and he said it was fine to post it and publish it. Here's my note to him and his back to me:

    "Question: Is it okay if I post your letter (anonymously) on the CFS forum that I'm on.
    I think people would appreciate knowing that there are some "good" therapists out there,
    who actually have some empathy for sick people. So many of them have had CBT forced on them by jack ass idiots."



    "Sure. It doesn't even have to be anonymous. I'm happy to stand behind what I wrote."

    John Mizelle
     
  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    That's great, Dreambirdie, I appreciate you're discussing it with him and I'll add the response to my site, tomorrow, if you think it's implicit that he'd be cool with that.

    Suzy
     
  5. Kati

    Kati Patient in training

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    Here is my letter to APA regarding DSM5. You have my permission to use the same letter or to adapt it to your needs if you want. everyone should write a comment. The deadline to do so is on April 20th.

    To write your comments you need to go to the website :http://www.dsm5.org/Pages/Default.aspx and need to register a log in. then go to complex somatizing disorders and write your comments on that secion. Make sure you got your text copied somewhere else before you press send as sometime it doesn't get through.
     
  6. creekfeet

    creekfeet Sockfeet

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    I'm in the process of registering, to finally write my comment which will be necessarily brief. Not in top form today. But in the course of registering I noticed this:

    Has anybody checked that box? Wonder how they'd like the population here at PR to participate, eh?
     
  7. creekfeet

    creekfeet Sockfeet

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    Dang, that was harder than it needed to be. Their "captcha" system (copy the letters in the box) is severely stupid. It bumped me out 5 times on registration and once again on commenting. But I made it through.
     
  8. Kati

    Kati Patient in training

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    Here is my testimony...


    Your opinion counts... You have until April 20th to leave a comment!
    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368



    ETA Brain fog city!!! Never realized I posted this last night !!!!
     
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Invest in ME submission to DSM-5 draft proposals

    NB: I've been chasing Action for M.E. today as they have not yet published.

    Suzy

    ------------------------------------

    Invest in ME submission to DSM-5 draft proposals


    http://www.investinme.org/Article-420 APA DSM-V Submission.htm

    The American Psychiatric Association has recently called for comments to be forwarded regarding their draft proposal for DSM-V (Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system).

    Included in DSM-V is a section entitled Complex Somatic Symptom Disorders.

    Considering that psychiatrists in the UK have caused such harm to people with ME and their families over the past generation Invest in ME decided that input needed to be made to the APA regarding this section.

    Below is Invest in ME's response - submitted on 19th April 2010.

    [Content superceded by third draft May 2, 2012]

    http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368


    Submission - to the American Psychiatric Association on DSM-V

    Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (ME or ME/CFS), as defined by WHO-ICD-10-G93.3 - (also referred to as Chronic Fatigue Syndrome (CFS) - although in this letter we shall use the term ME/CFS).

    Even though we are not mental health professionals or represent people with mental health disorders we feel it important to comment on the draft proposal of DSM-V.

    This response should be seen against the backdrop of the devastation caused by some psychiatrists in the UK regarding their treatment of people with ME/CFS and their promotion of false perceptions about the disease to the public, healthcare authorities and government.

    When a generation of patients have been adversely affected by misinformation promoted by a section of psychiatrists in the UK and when the field of psychiatry has been brought into disrepute by these same psychiatrists then it is of paramount importance that the American Psychiatric Association are aware of the dangers inherent in establishing incorrect categories of disorders which are based on poor science, vested interests or which do not serve the patients for whom they must surely be priority in all healthcare provision.

    We are especially concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to lump together many illnesses. It cannot be helpful for clinicians or researchers to have such a variety of patients under one category especially when very little is known of the pathophysiology of these conditions placed in this category.

    In the CSSD Criteria B there are terms used which are subjective and not measurable - such as “health concerns” and “catastrophising”.

    Based on our experience with the treatment of an organic illness such as ME/CFS our concern is that there is a great danger of mis- or missed diagnoses when looking at this category and its diagnostic criteria.

    Not all physical illnesses can be easily determined without extensive investigations and this category may allow clinicians to miss brain tumours, rare cancers and other illnesses which are difficult to diagnose.

    The criteria are very vague and allow too much subjectivity.

    In fact, ME/CFS could mistakenly be placed in this category if one were to ignore the huge volume of biomedical research and evidence which shows it to be an organic illness and if one were to use only the broad CSSD criteria to diagnose.

    Such an action would be a major and costly mistake.

    The patients we are concerned with suffer from Myalgic Encephalomyelitis which is a neurological disease but all too often these patients are being treated as if they had a somatoform illness.

    Parents of children with ME are restricted in visiting their severely ill children in hospital or worse still the children are taken away from their families as the healthcare professional believes it is the family that is keeping the child ill.

    Severely ill grown ups with this disease are denied usual medical care and threatened with sectioning if they are too ill to care for themselves and ask for help.

    This not only sets patient against healthcare professional but also is a waste of resources and of lives. In the UK the profession of psychiatry also suffers as psychiatrists are often derided as uncaring, unscientific and unprofessional. The possibility of litigation ensuing against psychiatrists who cause such damage should also not be forgotten.

    A broad unspecific category such as the proposed Complex Somatic Symptom Disorder does not help patients who need an honest and clear diagnosis. Any illness lacking a diagnostic test is in danger of being put into this non specific category which helps no one.

    We are at least thankful that the APA has not attempted to repeat the major mistake being made by prominent UK psychiatrists in attempting to classify Myalgic Encephalomyelitis in amongst Complex Somatic Symptom Disorders.

    Such a course of action would create another source of conflict between patients and the field of psychiatry and lead to unnecessary loss of health, potential loss of life and possible legal actions being taken against those professional organizations and/or individuals who use incorrect guidance for their diagnoses,

    Yours Sincerely,

    Kathleen McCall

    Chairman Invest in ME
    Charity Nr 1114035

    Invest in ME
    PO Box 561
    Eastleigh SO50 0GQ
    Hampshire
    England
     
  10. Dreambirdie

    Dreambirdie work in progress

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    Sent my letter to them this a.m. I hope that everyone else does this too.
     
  11. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Action for M.E. statement submitted to DSM-5

    (Well, they didn't exactly spend much time on that, did they?)

    Action for M.E.

    Statement to the American Psychiatric Association in relation to the possibility of M.E./CFS being classified as a psychiatric disorder (submitted last night):

    http://www.afme.org.uk/news.asp?newsid=812

    Complex Somatic Symptom Disorder
    20 April 2010


    Action for M.E.'s statement to the American Psychiatric Association in relation to the possibility of M.E./CFS being classified as a psychiatric disorder:

    Action for M.E. would like to thank the American Psychiatric Associations for the opportunity to comment on the the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5).

    We were gravely concerned and alarmed to hear of the possibility of CFS/ME being classified as a psychiatric disorder, based on comments made in their Work Group on somatoform disorders.

    As the largest by far CFS/ME charity in the UK, Action for M.E. would stress that CFS/M.E. is a long-term and disabling physical illness. M.E. is classified by the World Health Organisation in ICD 10 G93.3 as a neurological disorder. There is a large and growing body of evidence from scientific research and from clinicians which supports this position.

    We oppose any attempt to classify CFS/M.E. as a psychiatric disorder either explicitly or implicitly.
     
  12. Esther12

    Esther12 Senior Member

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    ?

    That is pathetic. It's just thoughtless. Why even bother?

    Saying that, I've not finished mine yet and it's the last day. Time for one final push.
     
  13. V99

    V99 *****

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    Action for ME response is a joke. Can they not be bothered to write a detailed explanation? What are they doing?
     
  14. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    It barely differs from the brief "holding statement" that Action for M.E. published a few weeks ago. Given the review exercise has been 10 weeks long, there would have been time for AfME to have used its Facebook site to consult with its members over what issues and concerns might be raised within a response from Action for M.E. - so it's disappointing that AfME has not invested much time in this response and that they have not addressed any specific issues within the proposals.

    Action for M.E. was provided with all the relevant links and PDF copies of the two key documents (the full proposals and rationale document) so there was no excuse for not having scrutinised the material.

    Esther - you don't have 20+ staff and a CEO on 70K at your disposal - AfME does and it has been aware of the DSM-5 revision since early last year, when I first started raising awareness.

    But then it has known about the revision of DSM-IV since mid 2002 when it agreed to take on the administration of Dr Richard Sykes' CISSD Project, when AfME absorbed Westcare UK.

    Suzy
     
  15. alphahusky

    alphahusky

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    My letter:

    In the previous century, people suffering from Multiple Sclerosis were sent to psychiatrists and given a diagnosis of "Hysterical Paralysis," or deemed to have "Faker's Illness." Scientific advances were able to prove the existence of a serious disease.

    People with ulcers were instructed, 20 years ago, to drink milk and get away from stress. Some gave up their careers in order to keep their stress levels down. H. pylori was discovered, and Dr. Barry J. Marshall one of the researchers who discovered the bacteria, finally resorted to having his stomach scoped to prove it was disease free, and then drinking a vial of liquid laced with H. pylori to prove it existed. Until then, he and his colleagues were scorned by members of the psychiatric community as well as the medical community. After drinking the vial of laced liquid, Dr. Marshall had his stomach tested again and it was proven that H. pylori had already begun to cause an ulcer in his stomach. A scientific advance and a courageous researcher proved that ulcers have a physical cause that comes from outside the body- they are not caused by stress. Other studies also showed that some NSAIDS can lead to stomach ulcers.

    Interstitial Cystitis was once believed to be caused by "anxiety" and again, the treatment was to see a psychiatrist. Currently, testing using hydrodistention to inflate the bladder and then using a scope to examine and biopsy the bladder walls has proven that IC has a physical cause. Anxiety was created by psychiatrists who insisted that sufferers were imagining symptoms, or that the symptoms related to childhood sexual abuse.

    The list goes on. Parkinson's was once considered a hysterical disease. Again, advances in science were able to prove that Parkinson's is a very real, and devastating, disease.

    It is arrogant to believe that we know everything about the human body and brain, and that mental health professionals have the ability to diagnose and treat illnesses that science has yet to catch up to. In my training as a counselor, we were always told that the first step with a new client is asking them to get a full medical checkup. Of course, this can still miss more complex illnesses that research has yet to catch up to. But the answer is not to treat sufferers as if they have a mental disease. MS will not be cured by antidepressants or talking therapy. Neither will ulcers. The true cure may be pushed further and further into the future when a disease continues to be classified as mental in origin.

    When an illness is poorly understood, a patient may be forced into the position of being their own researcher, to an extent. This might include focusing a lot of attention on the illness. This proposed category of mental illness, Complex Somatic Symptom Disorder, essentially includes anyone who has a disease that is yet poorly understood by researchers and clinicians. It would rope in ME/CFS, a disease the WHO has already categorized as neurological. It would include Fibromyalgia. While there are many more sophisticated lab tests that can show abnormalities in both of these cases, your definition would include anyone who has concerns about their health or searches for more information, and in a disease that is poorly understood as of yet, or that has not had the kind of advocacy work around it like MS and Parkinson's.

    It is poor science on the part of the mental health profession to declare that, essentially, if medical research cannot pinpoint the cause or the exact progression of a disease as of today, then it must be a mental disturbance. History has shown that the mental health profession has been wrong countless times, and has caused enormous suffering, when it comes to illnesses that are as yet poorly understood. Indeed, the involvement of mental health workers helps to create that poor understanding, by trying to claim as their own any illness that is not yet very well understood to be organic. Do not make this mistake again. By 2010, we should have long ago stopped classifying individuals with organic diseases as mentally ill.
     
  16. frenchtulip

    frenchtulip Senior Member

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    Sent mine

    I sent my comments over the weekend.
     
  17. Esther12

    Esther12 Senior Member

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    Thanks for all you've done. The 'Validity Proposal' doesn't seem to be available on their site anymore, but I was able to get it off yours. Great stuff.
     
  18. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Esther wrote:
    Some of the URLs for the two key PDFs have been broken on the APA's DSM-5 website since 10 February, when the proposals were first released.

    [Content superceded by third draft May, 2 2012]



    Suzy
     
  19. Esther12

    Esther12 Senior Member

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    'Somatic symptoms' - does this now mean 'psycho-somatic'?

    I thought somatic symptoms could include physical ones? (If you sprained your ankle - that would be a somatic condition). So do people with (for example) AIDS suffer from a chronic somatic condition?

    If anyone knows, please answer! Ta.
     
  20. Esther12

    Esther12 Senior Member

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    I am writing to explain my concerns about the proposed DSM-5 guidelines for ‘Complex Somatic Symptom Disorder’.

    The Validity Proposal recognises that basing diagnosis upon a negative is unpopular with patients, is not respected by practitioners and creates a high danger of misdiagnosis. However, the newly proposed guidelines contain weak safeguards to prevent CSSD becoming another diagnosis of exclusion, with the criteria easily fulfilled by patients suffering from poorly understood and purely physical conditions rather than from a psychiatric disorder.

    Sections A and C of the criteria would be met by most patients suffering from serious chronic health problems. Section B is designed to identify ‘misattributions, excessive concern or preoccupation with symptoms and illness’. However, a number of components of section B (only two of which need be fulfilled for a diagnosis to be made) could apply to patients suffering from a solely physical illness.

    Most worrying are numbers one and five, which seem to include normal responses to illness, and could even be concerning in their absence.

    (1)High level of health-related anxiety: Were a patient suffering from a disabling and poorly understood physical condition, a high level of health related anxiety would be part of a normal response.

    (5) Health concerns assume a central role in their lives: The health concerns of patients should be expected to vary depending upon the level and nature of their disability. In some instances it would be entirely normal and healthy for patients to give a central role to their health concerns.

    Numbers two and four would again seem to rest upon a negative, and presumption that we can consistently and accurately identify which health complaints are genuinely threatening and serious:

    (2) Normal bodily symptoms are viewed as threatening and harmful: Presumably, the patient would not believe that their bodily symptoms are normal, and the conclusion of the medical practitioner that they are mistaken would often necessarily rest upon a negative.

    (4) Belief in the medical seriousness of their symptoms despite evidence to the contrary: It is often impossible to be able to have compelling positive evidence to the contrary – with the absence of evidence of seriousness being used instead. To avoid basing diagnosis upon a negative a clear distinction between positive evidence that a patient’s symptoms are not serious and an absence of evidence that they are should be made. There is a danger here that simply disagreeing with your medical practitioner could be presumed to be evidence of a psychological disorder.

    While number three seems the criterion that would require evidence of distortions of thought, even here there is a danger that the health professional is mistaken, and the patient’s ‘catastrophising’ will be justifed.

    (3) A tendency to assume the worst about their health (catastrophising).

    If this diagnosis is not to be based upon the absence of an identifiable and clearly understood physical condition, and is to be consistently applied, then it should be recognised that most patients with chronic somatic symptoms are likely to fulfil the current criteria. It is my expectation that the diagnosis will only be applied to those suffering from health conditions which are currently medically unexplained, only now with the pretence that this is not a diagnosis resting upon a negative, but rather requires ‘misattributions, excessive concern or preoccupation with symptoms and illness’.

    To avoid creating a disorder that could include the majority of those suffering from chronic health problems it either needs to be made explicit that this diagnosis rests upon a negative and is likely to include patient suffering from currently unexplained medical conditions and who do not suffer from ‘misattributions, excessive concern or preoccupation with symptoms and illness’ or else section B needs to be significantly revised, with only part 3 currently being fit for purpose.

    The proposed criteria for Complex Somatic Symptom Disorder does not resolve the problems which were identified in the Validity Proposal, but has created yet more instead. Significant alteration will be required if this is to become a practical and useful diagnosis for patients and practitioners.
     

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