Reaksjon og innsigelse fra: IACFS/ ME med flere – Statement på DSM-5 Somatic Symptom Disorder

Reaksjoner og innsigelser på innføring av ny diagnose DSM-5 Somatic Symptom Disorder begynner å komme. Denne saken følger vi opp da det er flere der ute som ikke innser konsekvensen av disse nye tilleggene i denne psykriatiske diagnosen.

Innsigelser fra IACFS/ME:

IACFS/ ME Statement on DSM-5 Somatic Symptom Disorder

 Dear Members and Colleagues:

I have submitted the comments below to the DSM-5 Work Group on Somatic Symptom Disorders.  We are very concerned about the proposed new diagnosis, Complex Somatic Symptom Disorder, and its potential influence on physicians who see patients with CFS/ME.

Thank you.

Fred

Fred Friedberg, PhD

President

IACFS/ME

www.iacfsme.org

*To the DSM-5 Somatic Symptoms Disorders Work Group:*

On behalf of the board of directors and the membership of the International Association for Chronic Fatigue Syndrome (IACFS/ME), I would like to express my deep concern about the proposed new category of Complex Somatic Symptom Disorder (CSSD) in DSM-5 scheduled for release in 2013.

The Work Group’s well-reasoned points about DSM-IV somatoform disorders — that they are little used, confusing, and pejorative – do call for a re-evaluation. The question is: What should replace them? The new inclusive CSSD category attempts to offer a simplified and more inclusive diagnosis that may be more user-friendly to physicians and other health practitioners.

Our major concern is that the logic behind the new CSSD category is not informed by empirical data that directly examines the utility of this diagnosis in medical practice.

As stated by your Work Group: “A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably. …Predictive validity of most of the diagnostic proposals has not yet been investigated.”

Given the absence of scientific validation of the CSSD diagnosis, the potential for unintended consequences is a serious concern.  One such consequence is the possibility of over-diagnosis that may selectively affect patients with illnesses that are already not well understood such as CFS/ME.  If the treating practitioner is skeptical about the severity or even existence of CFS/ME, then the new criteria can be used to diagnose CSSD without reference to an underlying illness.

For instance, the CSSD criteria of (2) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms. and (3) Excessive time and energy devoted to these symptoms or health concerns, would allow practitioners skeptical of CFS/ME to diagnosis the illness as an Axis I psychiatric disorder. This new psychological diagnosis may then narrow the physician’s focus and reduce the possibility of more effective management of the CFS/ME illness. Furthermore, the CSSD diagnosis may result in additional stigma for already marginalized patients with CFS/ME.

Over-diagnosis with CSSD may also arise from the broad generality of the new criteria and the absence of clear thresholds for patients to meet the criteria. As with somatization/somatoform disorders, when different criteria are used population prevalence varies from less than 1% for somatization disorder to an astonishing 79% for undifferentiated somatoform disorder (cited from Work Group online document). Arguably, the generality of the criteria for both undifferentiated somatoform disorder and CSSD suggests that CSSD may become a much more common (and potentially misapplied) diagnosis than the somatic symptom disorders that it replaces.

Finally, the CSSD diagnosis will not inform the clinician of CFS/ME-specific issues such as adverse reactions to treatment that are more likely in this hypersensitive population.  By contrast, the CFS/ME diagnosis is useful for an array of illness-related concerns that will assist the clinician in providing care for these medically under-served patients.

Given the above considerations, we ask that the CSSD diagnosis be omitted from DSM-5.  Only when the proper validation studies are done that consider vulnerable populations such as CFS/ME can we know if the use of the CSSD diagnosis has clinical value.  In its current form, we believe that the new diagnosis will do more harm than good.

Thank you.

Fred Friedberg

Fred Friedberg, PhD

President

IACFS/ME

www.iacfsme.org

*****

Given the above considerations, we ask that the CSSD diagnosis be omitted from DSM-5.  Only when the proper validation studies are done that consider vulnerable populations such as CFS/ME can we know if the use of the CSSD diagnosis has clinical value.  In its current form, we believe that the new diagnosis will do more harm than good.

*****

European ME Alliance submission to DSM-5 draft proposals Submission – to the American Psychiatric Association on DSM-V Complex Somatic Symptom Disorders category (og ME-foreningen):

The European ME Alliance consists of 11 European national charities/non profit organisations campaigning for better diagnosis and understanding of myalgic encephalomyelitis (ME or ME/CFS) as defined by WHO-ICD-10-G93.3.

This response should be seen against the backdrop of the devastation caused by the misinformation within the medical profession regarding ME/CFS and the promotion of false perceptions about the disease to the public, healthcare authorities and government.

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. It is the patients who must surely be the 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 imply that anyone who has a chronic or incurable illness with somatic symptoms and ‘misattributes’ their symptoms could be given this label.

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

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

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, or be unaware of, 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 and would not serve the patients or the healthcare communities.

In our experience specialist ME/CFS clinics get as many as 40 % of patients referred with a ME/CFS diagnosis who turn out to have other very serious and sometimes fatal illnesses.

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

Parents of children with ME/CFS 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 by having ‘wrong illness beliefs’.

Severely ill grown ups with this disease are denied normal medical care and threatened with being placed in mental hospitals 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.

 We hope and request that the APA listens to patients and avoids creating a category of mental illness that is meaningless.

Yours Sincerely,

The Chairman, Board and Members of the European ME Alliance

http://www.euro-me.org

Les hele her

*****

ESME sin innsigelse til DSM-5 Complex Somatic Symptom Disorder:

ESME Statement Submission to DSM-5

av ESME European Society for ME den 15. juni 2011 kl. 08:31

The board of ESME (European Society for Myalgic Encephalomyelitis) wishes to express its concern over the proposed category of Complex Somatic Symptom Disorder.

Myalgic Encephalomyelitis (ME), is a potentially severe and chronic multi-system illness, commonly triggered by a virus infection, of which a key symptom is post-exertional malaise. It has been classified as a neurological condition by the WHO since 1969 and carries the code G93.3. Since the 1980’s, ME has also been called Chronic Fatigue Syndrome and it is under this name, that ME has commonly been mistaken for a somatoform disorder. It is our experience that giving an ME patient a psychological diagnosis of somatoform disorder, or functional somatic syndrome, has severe consequences for the patient, as their biological illness is then ignored. This also leads to patients being treated with psycho-pharmaceuticals, exercise therapy and other inappropriate and potentially harmful treatments.

The parents of children with ME are often blamed for the child’s illness by doctors and psychiatrists who do not understand the biological basis of ME. We feel that the category of Complex Somatic Symptom Disorder would only increase this problem as it takes focus away from the child’s physical symptoms and places them on the reaction to the illness. The diagnosis of Complex Somatic Symptom Disorder can be given if the parents of a young child express:

Excessive thoughts, feelings, and behaviors related to these somatic symptoms or associated health concerns: At least two of the following are required to meet this criterion:

(1) Disproportionate and persistent concerns about the medical seriousness of one’s symptoms.

(2) High level of health-related anxiety

(3) Excessive time and energy devoted to these symptoms or health concerns

If a doctor or psychiatrist does not understand the biological basis of a disease, it then becomes very difficult, if not impossible, to determine what amount of worry is disproportionate or excessive.

The board of ESME feels that the adoption of the umbrella term, Complex Somatic Symptom Disorders, would increase the risk of ME patients receiving a psychological misdiagnosis, therewith increasing the risk of neglect or direct physical harm to this patient group. We therefore strongly advise against the creation of the vague category, Complex Somatic Symptom Disorders.

Sincerely yours,

The Board of the European Society for ME

post@esme-eu.com

www.esme-eu.com

 *****

The Danish ME/CFS Association’s comments on the draft proposal of DSM-V.

av ME/CFS Foreningen – Danish ME/CFS Association den 16. juni 2011 kl. 07:52

The Danish ME/CFS Association would hereby like to comment on the draft proposal of DSM-V.

In Denmark, psychiatrists are already incorrectly using the terms somatoform disorder and functional somatic syndrome as synonyms for ME/CFS, Fibromyalgia, IBS, whiplash, migraine and others. In fact it has been proposed that these illness and 5 others be placed under a single category. We are therefore extremely concerned that the proposed category of Complex Somatic Symptom Disorder could become a catch-all category for these illnesses that will encourage doctors to give a psychiatric diagnosis and thus ignore the biological basis of these diseases.

As a patient group in Europe, we wholeheartedly support the comments submitted by the European ME Alliance (EMEA) to the American Psychiatric Association on DSM-V Complex Somatic Symptom Disorders category: http://www.euro-me.org/news-Q22011-003.htm

Three quotes from EMEAs statement that we would like to emphasize are:

We are especially concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to imply that anyone who has a chronic or incurable illness with somatic symptoms and ‘misattributes’ their symptoms could be given this label.’

‘ME/CFS could mistakenly be placed in this category if one were to ignore, or be unaware of, 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 and would not serve the patients or the healthcare communities.’

‘We hope and request that the APA listens to patients and avoids creating a category of mental illness that is meaningless.’

On behalf of the Danish ME/CFS Association board,

Sincerely yours,

Rebecca Hansen, chairman

reh@me-cfs.dk

www.me-cfs.dk

*****

DSM-5 Submission on behalf of The Young ME Sufferers

av ESME European Society for ME den 8. juni 2011 kl. 13:52

PLEASE ENTER OUR COMMENTS BELOW INTO YOUR REVIEW PROCESS

We wish to express concern over your new classification of Complex Somatic Symptom Disorder.

Chronic Fatigue Syndrome has commonly been mistaken for a somataform disorder. There are concerns in the UK that it may now be allocated a place under the umbrella of Complex Somatic Symptom Disorders.

In the UK the term Myalgic Encephalomyelitis has been used for half a century to define a potentially severe and chronic multi-system illness triggered commonly by the enterovirus family, of which a key symptom is post-exertional malaise. This name is still in use by the UK Government alongside CFS (as CFS/ME) and it received a categorisation from the WHO under neurological conditions many years ago, before the term CFS was invented.

Enough confusion has already been caused by the unhelpful invention of the name Chronic Fatigue Syndrome under which ME then became trapped.

Any possibility that classic ME, already subsumed under CFS, could be mistakenly classified by default as a Complex Somatic Symptom Disorder would be nothing short of disastrous. It would also be a scientific error of some magnitude which would surely be best avoided for your own sakes as much as that of the patients.

 We would be grateful to receive an acknowledgment of our submission.

Best regards,

Jane Colby FRSA

Executive Director The Young ME Sufferers Trust

Holder of The Queen’s Award for Voluntary Service:

The MBE for Volunteer Groups

PO Box 4347 Stock, Essex, CM4 9TE, Tel 0845 003 9002

*****

Letter to the DSM-5 Task Force

Letter available for use to the public for submit to the task force. You can also view the letter submitted from Fred Friedberg, Presiedent of the IACFS/ME here.

To:         The DSM-5 Task Force and the Somatic Symptom Disorders Work
              Group
Subject: Response on the Proposal for Complex Somatic Symptom Disorders
             and Simple Somatic
Date:     June 10, 2011

As the Coalition 4 Fibromyalgia, we wish to comment on the proposals for DSM-5 and particularly on the newly created category for «Complex Somatic Symptom Disorder» (CSSD) and the category “Simple Somatic Symptom Disorder” (SSSD).

We are very concerned about the real harm that can come to patients through the misuse of the SSD and especially the CSSD in clinical practice. This is especially true for patients with fibromyalgia or other diseases like ME/CFS, Gulf War Illness and IBS that are misunderstood, misdiagnosed and mistreated by the medical community at large. And while the DSM-5 proposal itself does not call out any specific disease, there is additional concern for fibromyalgia patients because of discussions over time that have mentioned fibromyalgia specifically in the context of “somatic presentations of mental disorders”.

The biggest concerns are:
1.Continued stigma for fibromyalgia: Despite ample evidence of the pathobiology of fibromyalgia, patients are still subject today to the insistence by their doctors that there is nothing wrong and they are ‘just depressed’. Establishing the CSSD framework that includes hypochondriacs and yet could also be easily applied to patients with real and serious medical diseases like fibromyalgia only exacerbates the stigma and mistreatment that these patients have suffered for years.

2.Misuse and misapplication of the category: The highly subjective nature of the criteria, especially when applied to real diseases that are poorly understood by the practicing physicians, will lead to misuse of this category and the incorrect diagnosis of a psychological disorder. The “Justification for Criteria – Somatic Symptoms” (3) acknowledges that ‘A key issue is whether the guidelines for CSSD describe a valid construct and can be used reliably.” Unfortunately, the document does not provide a satisfactory explanation. There are severity metrics proposed for CSSD but these do little to allay concerns when the benchmarks for normal response include healthy volunteers on the one hand and hypochondriacs on the other. How will these instruments be validated for fibromyalgia, which has recently been reported to have “a greater impact on functional status and well being than other chronic diseases such as cancer”

This is a huge issue for patients with diseases that are poorly understood. Every day, people who are very sick with real diseases like fibromyalgia, ME/CFS, Lyme disease, Gulf War Illness and IBS are told that there is nothing wrong with them. It is not hard to imagine that their unwillingness to accept that diagnosis could be judged as ‘disproportionate and persistent concerns about the medical seriousness of one’s symptoms’ by their medical doctors. Once the physician applies a mental health label by diagnosing CSSD (whether as the primary diagnosis or as a secondary diagnosis), there will be profound implications for the patient for diagnosis, treatment, disability and insurance.

3.Inappropriate Treatments and Withholding of Needed Diagnostics: The “Justification for Criteria – Somatic Symptoms”, in explaining the creation of CSSD, states that “treatment interventions are similar in this group of disorders” and describes the use of antidepressant medications and CBT for “the identification and modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors and promote more effective coping.” It further states that “all of these disorders benefit from specific interventions with the patient’s non-psychiatric physician (e.g. scheduling regular appointments as opposed to prn appointments, limiting testing and procedures unless clearly indicated)”. We only need to look to England and the NICE Guidelines to understand the disastrous effects of such standards. In the hands of a doctor truly knowledgeable about fibromyalgia, CBT and anti-depressants may sometimes be part of an effective treatment plan. But all too often, the treatments are misused by doctors who don’t understand the disease and instead believe that the real problem with the patient is his false illness beliefs or that he is just depressed. Suggesting that doctors focus on these as treatments and limit testing and procedures in such a scenario could have a disastrous impact on the patient’s life.

4.Alignment with ICD: While the DSM-5 is separate from the ICD-10 and is used primarily by mental health practitioners, there is an alignment between the two today. It appears that that will continue with ICD-11 although it is not clear at this time how that will be achieved. Instituting the CSSD in the ICD-11 would have negative implications not only for the US but also for all other countries.

We are not alone in voicing serious concern for the unintended consequences of the DSM-5 plans for SSSD and CSSD. Numerous organizations and individuals stated these same concerns in the April 2010 review cycle yet the CSSD category remains essentially unchanged. Even members of the psychiatric community, most prominently Dr. Allen Frances, the chair of the DSM-IV task force and Dr. Robert Spitzer, the chair of the DSM-III task force, have raised concerns with the process, content, direction and unintended consequences of the DSM-5 (4,5,6,). Dr. Allen Frances (the chair of the DSM-IV task force) raised this issue of the unintended consequences of the DSM-5, especially around a premature “paradigm shift”. In “A Warning Sign on the Road to DSM-5: Beware of Its Unintended Consequences” (4), he states “Part of the exaggerated claim of a paradigm shift in DSM-5 is based on the suggestion that it will be introducing dimensional ratings and that this will increase the precision of diagnosis… [But] Including an ad hoc, untested, and complex dimensional system in an official nomenclature is premature and will likely lead to similar neglect and confusion”.

We urge you to seriously reconsider the inclusion of this category. For fibromyalgia patients and for many other patients with other real but poorly understood diseases, those unintended consequences of implementing CSSD and SSSD could be disastrous!

Thank you.

Coalition 4 Fibromyalgia

References

1) Somatic Symptom Disorders, DSM website, May 29, 2011, (http://www.dsm5.org/ProposedRevision/Pages/SomaticSymptomDisorders.aspx)

2) “Somatic Symptom Disorders”, description published by the American Psychiatric Association, Draft 4/18/2011, (www.dsm5.org/Documents/Somatic/Somatic%20Symptom%20Disorders%20description%20April%2018,%202011.pdf)

3) “Justification for Criteria – Somatic Symptoms”, Published by the American Psychiatric Association, Draft 4/18/2011, (www.dsm5.org/Documents/Somatic/DSM Validity Propositions 4-18-11.pdf)

4) Dr. Allen Frances, MD, “A Warning Sign on the Road to DSM-5: Beware of Its Unintended Consequences”, Psychiatric Times. June 26, 2009. (http://www.psychiatrictimes.com/dsm-5/content/article/10168/1425378)

5) Dr. Allen Frances (DSM IV) and Dr. Robert Spitzer (DSM-III), Letter to the APA board of trustees. July 6, 2009. (http://www.scribd.com/doc/17172432/Letter-to-APA-Board-of-Trustees-July-7-2009-From-Allen-Frances-and-Robert-Spitzer)

6) Gary Greenberg, “Inside the battle to define Mental Illness,” Wired Magazine. Dec 27, 2010. (http://www.wired.com/magazine/2010/12/ff_dsmv/all/1)

*****

4 kommentarer om “Reaksjon og innsigelse fra: IACFS/ ME med flere – Statement på DSM-5 Somatic Symptom Disorder

    1. Hi Suzy😉

      Thanks for the links and your commitment in to this severe proposal. It will become very difficult for this patient group on this if the DSM-5 issue is resolved. These patients will become stuck and lose their rights to adequate medical assessment and treatment. This is already a big problem and this will make it even harder and dangerous for this patient group.

      Let’s really hope that common sense and objective scientific evidence that shows that this disorder is somatic conditional will conquer in this disastrous proposal!

      That this is of great significance to patients affected by neuro immune disease, and that our societies react strongly is very good. On the other hand, I hope that scientists, doctors and scientists in somatic disorders claimes their science and work back….
      😉 Thanks again and gives my best wishes to all of us!

  1. Tilbaketråkk: Psykosomatiseringen av ME/CFS pasienter har igjen ført til at liv kan gå tapt – Hvor mange liv skal egentlig straffes med døden før denne pasientgruppen blir tatt på alvor?? « ToTo NeuroImmunologisk Kurativ Behandling

  2. Tilbaketråkk: Moderne epidemier – helt sinnsykt! « ToTo NeuroImmunologisk Kurativ Behandling

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