Thursday, April 21, 2016

Sign the Petition: ME is not MUPS - Dutch Patients Need Your Help!

On March 29th 2016, the Dutch Health Council (the advisory body to Dutch Parliament) announced the names of the members of a newly formed Committee that has the important task to write an advisory report on the state of the scientific knowledge about ME for Dutch Parliament.

The idea for the Committee was initiated by ME patients themselves, who, after suffering decades of medical ignorance, requested acknowledgement by the government, as well as a scientific review of ME to support appropriate diagnosis and treatment.

As is often the case when a government has vested interests in maintaining the status quo, their efforts were co-opted. Half of the Committee members view ME as a psychosomatic illness. Some openly recommend GET and CBT as legitimate treatments for ME. Meanwhile, none of the international experts requested by Dutch ME patients has been included.

The petition “ME is geen SOLK”, which translates as “ME is not MUPS/Medically Unexplained Physical Symptoms” has been launched to redress the inequity of the Committee's composition:
The purpose of the petition is to support Dutch patients in their request for an accurate scientific review, untainted by biopsychosocial theories. 

Let the Dutch Health Council know that ME (ICD G93.3) is not MUPS, nor it is a somatoform disorder, neurasthenia, functional syndrome or unexplained fatigue.

Please sign the petition!!

Following is some background information. 

Reprinted with permission from the Dutch ME patient Group; ME is not MUPS (ME is geen SOLK).

For more information


Background info

That the Dutch Health Council was asked to take another look at the state of the scientific knowledge with respect to ME was a direct result of a well known Dutch Citizen’s Initiative “Erken ME”/Recognize ME. 

This group of very ill ME patients was fed up with (the status quo and) the total lack of care and lack of knowledge about this disease with health care professionals in the Netherlands, the total lack of
biomedical research in their country, as well as the huge influence of CBT/GET psychologists in the Netherlands (now joined by a growing number of psychologists who stand behind and actively promote MUPS diagnoses, theories and treatments for this patient group). 

ME patients really have no place to go for care, they are only referred to CBT/GET treatments. The Dutch Health Council report in 2005 did not help, it was one of the reasons the CBT/GET paradigm has become so strong in the Netherlands, (as it is in the UK), almost all reasearch funds after the 2005 Health Council report was presented to Parliament went to CBT studies from Nijmegen/Radboud University, who over the years have worked closely with the PACE authors. 

It prompted the Dutch Citizens’s Initiative (Burgerinitiatief) “Erken ME”/”Recogize ME” in 2011. It took more than 2 years. More than 56,000 signatures were collected and presented to Parliament in 2013. They were able (together with 2 ME experts, Prof. DeMeirleir and Dr. Klein, who are now not on the Committee) to convince Parliament members that something needed to change for ME patients in The Netherlands, that the scientific knowledge about this disease justifies a paradigm shift, in care and biomedical research. The result, an official request on April 9th 2015 from Parliament to the Dutch Health Council for a new advisory report on the state of the scientific knowledge with respect to ME.

Patient organizations and the Dutch Citizen’s Initiative urged the Dutch Health Council to seek international expertise for its Committee, as true expertise on this disease is lacking in the Netherlands. However, none of the international experts that were suggested to the Dutch Health Council were invited to join the Committee (even though these experts had already said to be willing to participate). 

Now almost half of the Committee members are professionals with a clear SOLK/MUPS and CBT background. One member is a well known Dutch psychologist/“PACE colleague” from Nijmegen/Radboud University, head of the NKCV (Nijmegen Expert Centre for Chronic Fatigue). 

They, for example, provided the protocol for CBT that was (partly) used in the PACE trial, and wrote the well known “Where to PACE from here” commentary that was published together with the original PACE study in 2011 in the Lancet. This commentary included some false/exaggerated “recovery” claims, which was pointed out in a recent letter from more than 40 experts to the Lancet 

The 3 other members that patients are concerned about have a clear MUPS background. CFS, Fibromyalgia and IBS are mentioned as examples of MUPS (SOLK), by them. MUPS is becoming a new “diagnosis”, claimed by psychologists. MUPS “diagnoses” and treatments are linked to the well
known underlying biopsychosocial model for MUPS (and CBT), which means patients need CBT and are referred to Mental Health Institutions to get those treatments. A nation wide project is set up (funded by health care insurers) to implement this on a large scale. The SOLK (MUPS) multidisciplinary and Somatoform Disorders guideline in the Netherlands, as well as a SOLK (MUPS) General Practitioners’ Standard (one of the Committee members was involved in writing both), lists CFS as an undifferentiated somatoform disorder (ICD F45). The Dutch “CVS”/CFS Guideline (now considered part of the SOLK guideline) was based on the NICE UK Guideline for CFS. 

Patient organizations have refused to authorize it, yet CBT is promoted as the first choice of treatment for ME patients in the Netherlands. Other professionals with a SOLK (MUPS) background sometimes refer to CFS as a functional syndrome. The NKCV/Expert Centre for Chronic Fatigue (head Hans Knoop, a Committee member) also in several documents describes CFS as an undifferentiated somatoform disorder. The underlying theory of treatment options suggested by these professionals (CBT/GET), the biospychosocial model, is a theory that has never been proven, yet MUPS/SOLK/CBT professionals in the Netherlands claim that it is evidence based and often curative. Besides 4 MUPS/CBT members there are 4 other doctors on the Committee, only two have some experience with ME patients, others don’t.

This is why in the Netherlands patients feel so strongly about using the appropriate name and ICD classification for their disease; ME, ICD G93.3. There is a need to get ME out of the CFS umbrella, as suggested by the ICC authors in 2011 and the CFSAC (chronic fatigue syndrome advisory committee) in its recommendations to the HHS in 2015 (recommendations that were based on the IOM and NIH/P2P reports). 

The name CFS is linked to inappropriate classifications for this disease and therefore gives a misrepresentation of what this disease is, i.e. the state of the science says. In their last report in 2005 on “CVS”/CFS the Dutch Health Council Committee also made a clear reference to both ICD F45 (somatoform disorders) and F48 (neurasthenia) as possible classifications for CFS (page 37). But then made the argument that too much focus on the issue of classification was not that important or helpful with respect to relevant treatments.
On page 37 of the 2005 Dutch Health Council report it states: “The Committee argues, however, that the place of CFS in a classification system says nothing about the nature of the illness and that the CFS case definition is no more than a description of a pattern of symptoms that cannot have any bearing on a discussion about whether it is ‘neurologic or psychiatric’. Furthermore, the Committee does not consider such a discussion to be helpful as far as the treatment of patients is concerned.”. An all too familiar argument still heard today by MUPS/CBT/mental health professionals working with CFS patients: it does not matter if this disease is physical or psychosomatic, they have a treatment that works, so let’s focus on that; …. CBT/GET.

The new report of the Dutch Health Council will be highly influencial with respect to health care policy for ME patients in the Netherlands in the next decade (and patients really were hoping for change to get the care they need an more biomedical research so that in time there might be a cure!). For ME patients in the Netherlands it is unacceptable that 10 years after the 2005 Health Council report, with all the available scientific knowledge about this disease and the clear assignment from Parliament to write an advisory report on the current state of the scientific knowledge about ME, for the Dutch Health Council to select a Committee with members that still stand behind the MUPS/CBT (biopsychosocial) theories (and classifications of CFS as MUPS, somatoform disorders etc.) when dealing with this neurological, chronic complex multisystem disease (ME, ICD G93.3).
Hence, the petition “ME is geen SOLK” (ME is not MUPS) was launched.

Patients cannot wait another decade for change! Time to put the biopsychosocial model behind us. We hope you will help Dutch patients by signing and sharing the petition (link).

If you have already signed, thank you, we hope you will continue helping us by sharing the petition link and the concerns of the Dutch patients (a topic relevant to all ME patients worldwide) on your
website or via social media.
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