Discussion in 'Latest ME/CFS Research' started by Dr. Yes, Apr 26, 2010.
Hah, if you ask me it's one letter too long, trying removing the "D".
Unbelieveably stupid...... beyond comprehension
Who is this guy ?
Think he invented the wheel or what?
" I will now attempt to regroup all types of human disease and call it the feeling sick syndrome" "This will help facilitate research and delivery of evidence based care"
I don't know if it is a lost in translation type thing from Danish to English, but that name is simply awful.
Notes from EACLPP Workgroup meeting in Budapest July 2011
As this EACLPP Workgroup meeting has been flagged up in this thread, I am posting these notes from the meeting here:
From Suzy Chapman for
Dx Revision Watch
22 January 2012
The Journal of Psychosomatic Research (JPR) is the official organ of the "European Association of Consultation Liaison Psychiatry and Psychosomatics" (EACLPP).
The current JPR Editors are A.F.G. Leentjens, Department of Psychiatry, Maastricht University Medical Centre, The Netherlands and J. Levenson, Department of Psychiatry, Virginia Commonwealth University School of Medicine, Richmond, USA.
Michael Sharpe is a JPR Associate Editor. Francis Creed is a former JPR Editor (1999-2011) but currently appears not to be on the JPR Editorial Board in any capacity, though he was listed as Co-Editor, in December.
James Levenson, Michael Sharpe and Francis Creed are all members of the DSM-5 Somatic Symptom Disorders Work Group.
Francis Creed, Peter Henningsen and Per Fink are key players in the EACLPP and its MUS White Paper out of which has resulted the publication: "Medically Unexplained Symptoms, Somatisation and Bodily Distress" .
The European Association of Consultation Liaison Psychiatry and Psychosomatics was founded in 1997 - a European organization of psychiatrists and psychsomaticists working at the interface of Medicine, Psychiatry and Psychosomatics with the objectives to promote the clinical, scientific and educational activities of Consultation-Liaison Psychiatry & Psychosomatic Medicine.
Notes from EACLPP Workgroup meeting in Budapest July 2011.
Report from Working group meeting on MUS/somatisation/bodily distress, Budapest July 1st 2011
(Ed: Like Per Fink, Professor Creed prefers the use of the term "Bodily Distress Disorder" over the term proposed by the DSM-5 Somatic Symptom Disorders Work Group - "Complex Somatic Symptom Disorder". Per Fink considers that Fibromyalgia, Multiple Chemical Sensitivity, Sick Building Syndrome and Chronic Fatigue Syndrome are all manifestations of the same condition and that the construct "bodily distress syndrome" succeeds "in capturing 10 diagnostic categories of functional somatic syndromes and somatoform disorders" .)
Text of PDF:
Peter White reported on the experience of Chronic Fatigue clinics in UK. These were set up with government funding for 3 years. Most have continued as their funding has been assimilated by local healthcare funders.
Initial assessment revealed that 42% of patients did not have CFS but had a medical or psychiatric disorder that led to fatigue.
The management of CFS in the clinics consists of CBT and Graded Exercise Therapy with appropriate medical care. Results show that in most clinics there is evidence of improvement particularly in reducing fatigue, but less so on SF-36.
In the future the clinics may extend to treat patients with fibromyalgia and fatigue secondary to physical illness (eg cancer)
Heribert Sattel presented briefly on the German National Guidelines for Functional and Somatoform/Non-Specific Symptoms. These are evidence-based guidelines for health care professionals, patients and their relatives, researchers, representatives of health policy, media representatives
They are based on prior evidence-based guidelines Somatoform Disorders (Henningsen et al 2002) with an extensive systematic literature review (2000-2010), focusing on RCTs in the field PLUS structured consensus among experts (representatives of the medical professional associations) of many different medical fields on the resulting evidence based recommendations and statements
The following major German Medical Professional Associations were involved: Psychosomatic Medicine / Psychiatry / Psychologists, General Practitioners, Internal Medicine, Neurology, Orthopaedics, Sports medicine, Pain medicine, Surgery, Rheumatology, Occupational medicine, Preventive medicine, Cardiology, Gynaecology and obstetrics, Urology, Otolaryngology, Dentistry, Paediatrics
The Major aims of the guidelines are to transfer relevant diagnostic and therapeutic knowledge to all physicians who are in charge of these patients. Our Planned dissemination includes: participation in conferences and preparation of publications in the different medical specialties
Per Fink presented a new knowledge center that is under construction at his department. The centre is funded by a grant from a Danish foundation that is focusing on functional disorders. The center is run by a primary care physician and also includes a social worker and a secretary. So far the focus has been on working out a strategy for the centre in terms of who should we target and how do we target such different groups as the general public, administrators, doctors etc. A website will be the central element of the knowledge center.
B) Group discussions and Actions arising
Education: One group emphasised the need to work closely with GPs paediatricians and medical students we need to design, develop and test and efficient interventions for patients with bodily distress (single term to cover medically unexplained symptoms and somatisation).
Can we develop one algorithm which shows how to assess and manage to and when to refer? In Denmark, the TERM model has been quite successful, and from 2012 all new primary care physicians will be trained in the treatment of functional disorders.
Another group: Educating medical students and nurses. Bodily distress is only taught in psychiatric settings. We must teach this topic in medical settings. We propose a common track for medical specialists with respect to functional disorders. (links to above)
Dont forget to include psychologists in our educational work Learning about bodily distress/functional disorders should be compulsory if its optional only a minority will learn about them.
Any way of teaching lots of medical professionals with less burden on the teacher would help (One participant commented that she is always teaching but there seems to be an endless demand for teaching on this topic)
Medical doctors fear discussing psychosocial issues with their patients as they feel that they have to solve them rather than simply acknowledge them.
Short sessions on how to diagnose and how to explain the diagnosis to the patients.
Action point: We need to have a small group to design, develop and test educational material for the management of bodily distress that is applicable to many different specialists in their own (i.e. not in a psychiatric) setting.
There is an Austrian network of psychosomatic medicine we need a similar network developed on a European scale
Can the proposed Knowledge centre in Denmark help to disseminate aspects of best practice? Can it be really close to clinical practice? Can it disseminate the evidence regarding cost effectiveness of treatments for functional disorders? A relevant Cochrane review is to be published soon.
Action point: We need better communication of best practice around EU. Could we use the EACLPP website to this end?
Organisation of services: Splitting or lumping? We are in danger of having separate clinics for chronic fatigue syndrome, chest pains, fibromyalgia etc etcwe need to develop best practice and join up these different clinics and get them more centrally placed on the agenda make them more visible to all specialists.
Alliance with patients the current emphasis of much research is our search for aetiology but there should be more emphasis on treatment so we can help patients more. This would be more pragmatic but we need more studies on how to develop effective treatments. Such research should include defining the optimal explanation that doctors and other health professionals can use routinely with their patients.
We should work together to identify recognised treatment centres for each geographical area of EU.
Create a common understanding of these disorders and develop a positive explanation for patients so doctors can be specific and positive about what is wrong.
It was suggested that a medical doctor and a psychiatrist could see the patient together,
Action point: Do we need a small group to take forward ideas about service delivery?
Specific actions: Participants agreed to will contact educationalists to develop better teaching and we will seek fuller co-operation between centres re bodily distress (and relevant teaching).
The German national guidelines should be disseminated (in English?). We should see whether the Danish material could be translated into English and prepared for easy access by both patients and doctors.
We need more user-friendly explanation to patients doctors should be able to tell people in simple terms what is wrong with them.
We should find out whether the WHO group for classification of somatic distress and dissociative disorders will provide a better diagnostic system for these disorders.
We should examine the possibility of a small meeting to discuss developing educational materials that could be disseminated and used widely.
Future meeting, Aarhus June (27-30th).
Review progress over the last year
Confirm that the group wishes to continue
Find new leader(s)
 J Psychosom Res. 2010 May;68(5):415-26. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. Fink P, Schrder A.
 In Press: Presentation of the Multidisciplinary Guideline Medically Unexplained Physical Symptoms (MUPS) and Somatoform Disorder in the Netherlands: Disease management according to risk profiles: Christina M. van der Feltz-Cornelis, Rob Hoedeman, Emile J.W. Keuter, Jan A. Swinkels DOI: 10.1016/j.jpsychores.2011.11.007
 Co-Cure posts from Suzy Chapman:
ACT: EURASMUS (European Research Association for Somatisation and Medically Unexplained Symptoms), June 08, 2011
ACT: NHS National Institute for Health Research, MHRN 2011 National Scientific Meeting (MUS, DSM-5, PACE, CFS), June 08, 2011
ACT: New book: Medically Unexplained Symptoms, Somatisation and Bodily Distress, Co-Cure, July 18, 2011
Please note that following threats of legal action from the American Psychiatric Association's publishing arm, on behalf of APA, the site formerly operating under the name "Dx Revision Watch" at the domain: dxrevisionwatch.wordpress.com now operates under the site title "Dx Revision Watch" at http://dxrevisionwatch.wordpress.com/
Coverage of the APA "cease and desist" legal threats v Suzy Chapman and resources for legal advice at: http://wp.me/pKrrB-1Bi
Interesting so they'll become "fatigue" clinics and people with ME, with their unusual response to exertion, will be a much smaller percentage of the patients.
They really don't understand the problem, do they?
Yes Dolphin, diluete then dismiss. Part of the problem, I am beginning to suspect, is that psychosomatic psychiatry is disconnected from mainstream psychiatry, though not as much as it is disconnected from neurobiology or other biomedical sciences. They are affirming each other, but ignoring criticism from outside their in-group, which looks very much like a cult to me. Here is the hard question that in nearly a century no psychosomatic proponent has ever answered: where is the hard object unequivocal data that psychosomatic illness even exists? If any MUPS is not physical because of no hard data of pathology (which is easy to dispute if they bother to crack open a few biomedical journals) then it follows that psychosomatic diagnosis are not valid, and therefore the diagnosis has no basis. They are hung by their own rope. If they argue from a consensus opinion that their view has validity, then we can argue from a consensus opinion from biomedical researchers on ME. If they argue that its all part of the mind body connection, and therefore it is reasonable to say the cause is mental, we can equally argue that therefore the cause is physical by parallel reasoning, that any mental issues if present are secondary. From a rational perspective, this is a no-win scenaio for them, and meanwhile the biomedical sciences are unravelling causality that will undermine the psychosomatic view, as it did for asthma, stomach ulcers, diabetes, mulitple sclerosis, rheumatoid arthritis and lupus. Bye, Alex
Do we have any other references by Peter White or others to the potential broadening out of the NHS CFS clinics' scope to include treatment of patients with "fatigue secondary to physical illness (eg cancer)"? BTW, Dolphin, I've put these meeting notes out on Co-Cure and ME Association FB.
Thanks for posting the notes around.
Not sure we have any other references but it always seemed a possibility - having generic "fatigue" clinics the way we have generic "pain" clinics.
I think Peter White doesn't like to practice medicine much e.g. likes avoiding having to do a physical examination, tilt table testing, etc. On the draft NICE submission, he was trying to say bowel symptoms were part of a separate condition (and hence wouldn't be the clinic's responsibility, I think).
If it was a fatigue clinic, he could more easily say that other medical matters/symptoms aren't his responsibility and he wouldn't have to worry so much about debates over CFS or ME.
bodily distress syndrome rofl
The original name for the DSM-5 Somatic Symptom Disorders Work Group (back in 2008 and 2009) had been "Somatic Distress Disorders" Work Group:
Work Group reports:
If you refer back to this post in this thread (January 24, 2011)
the paper I've quoted from discusses suitable names.
It's funny until you realise they're serious.
I attended one of these "Clinics" several years ago. They were limited to 10 sessions with around 15 attending each session. The way the sessions were organised I probably saw around 80 individuals in total.
Things that don't tie up with Peter Whites report:
- I met several people with FM (not ME) back then.
- We were all visited by psychologists before attending to ensure we were not suffering from any psychiatric disorder.
- The team leader was a psychologist who in my case firmly believed after meeting so many of us with the same symptoms that the illness could only be biomedical (unless as she put it - we were all transferring our symptoms telepathically).
- The illness management promoted by the clinics was based purely on Pacing, Diet & Sleep - CBT and GET were clearly ruled out as dangerous (I still have all the handouts from the meetings).
- The only improvement I and the others I met gained, was the ability to get out of the house and socialise, as the NHS provided the transport. Several of us asked if they could make the meetings permanent, but we were told that the local healthcare budget wouldn't allow it - so much for healthcare!
- I was visited by one of their team about a year later as they thought I was a prime candidate to show the effects of ME on a 'lone housebound sufferer' in an NHS video. I took the opportunity to ask if any of the others had improved, and was simply told "not really"!
Now either my group was exceptional, or Peter White is spinning
Its still funny nevertheless - funny with side orders of hypocrisy, irrationality and babble. Only to us it tastes of desperation, fear, loathing and persecution. Bye, Alex
Good thread - thanks to you all - totally agree with all said about the mumbo jumbo.
Recent posts on my Dx Revision Watch site around ICD-11 and ICD-11-PHC (Primary Care version) and proposed introduction of Bodily Distress Disorder; Bodily Distress Syndrome and Bodily Stress Syndrome as categories for these forthcoming classification systems:
July 2, 2012
Changes to ICD-11 Beta drafting platform: Bodily Distress Disorders (1)
Post #190 Shortlink: http://wp.me/pKrrB-2jB
August 2, 2012
Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. [JOURNAL ARTICLE]
Post #196 Shortlink: http://wp.me/pKrrB-2pp
August 2, 2012
Slide presentation: Per Fink: Somatoform disorders – functional somatic syndromes – Bodily distress syndrome (EACLPP lecture, June 2012)
Post #197 Shortlink: http://wp.me/pKrrB-2pN
July 26, 2012
ICD-11 Beta drafting platform: Update (2): Neurasthenia, Postviral fatigue syndrome (PVFS), Benign myalgic encephalomyelitis (ME), Chronic fatigue syndrome (CFS), Fibromyalgia (FM), Irritable bowel syndrome (IBS)
Post #193 Shortlink: http://wp.me/pKrrB-2mC
You're welcome, Esther12.
Potentially, across the three classification systems: DSM-5, ICD-11, ICD-11-PHC (Primary Care version of ICD-11):
[Complex] Somatic Symptom Disorder (SSD) (DSM-5) with a Pain Specifier and option for specifying Mild, Moderate or Severe SSD.
Bodily Distress Disorder (BDD) (ICD-11) three severities, Mild, Moderate or Severe BDD, all as yet undefined.
Body [sic] distress disorders (BDD) (ICD11-PHC) under which disorder group would sit
15: Bodily stress syndrome (BSS) with three severities, Mild, Moderate or Severe, Required symptoms published recently but subject to refinement following field trials.
Note: BDD not to be confused with Body dysmorphic disorder (BDD).
Ive only quoted a part o the whole thing but from it it appears they view CFS as bodily distress disorder and they plan to tell people with this in simple terms what is wrong with them?
I'd say how on earth are they going to do tell people whether it be in simple terms otherwise,, what is wrong with them when the cause of CFS is unknown?
I bet we can guess what these people are all going to be told!!
So they want to move CFS in WHO to where the classification for somatic distress and dissociative disorders is? so to get a better system for these disorders?
Im not sure if Ive taken that sentence in the right way or not..but it is one of the ways in what has been said can be taken.
By including those with fatigue who have things other then ME/CFS into those clinics.. those clinics then will be giving out more positive results from the clinics, enabling them to then go about quoting those bettered results for the "chronic fatigue clinics " and hence for us.
It would be just another thing which could be twisted and abused.. I can already see the media spin this is going to end up leading too.
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