Reprinted with the kind permission of ME Action.
Dutch ME patients strongly disagree with the composition of the Dutch Health Council ME Committee and start petition “ME is geen SOLK” (ME is not MUPS).
On March 29th 2016, the Dutch Health Council announced the names of the members of a newly formed Committee that has the important task of writing an advisory report on ME for Dutch Parliament. It was not long after these names became known to the public, a petition “ME is geen SOLK”, which translates as “ME is not MUPS/Medically Unexplained Physical Symptoms” was posted online on a Dutch Petition site.
Dutch ME patients could not believe that 4 of the 10 Committee members were professionals with a clear SOLK/MUPS and CBT background. One member is a well known Dutch psychologist/“PACE colleague” from Nijmegen/Radboud University. Nijmegen has always had a strong connection to the PACE trial. 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 David Tuller and others have pointed out repeatedly, for example in a recent letter from more than 40 experts to the Lancet.
That the information and conclusions made by Bleijenberg and Knoop were not accurate was acknowledged by the editor of the Lancet at that time, yet neither the Lancet, nor the authors (Bleijenberg/Knoop) ever corrected their commentary article. The 3 other members that patients are quite concerned about have a clear MUPS background (CBT is seen as an effective treatment for MUPS by these professionals). Moreover, CFS, Fibromyalgia and IBS are often mentioned as examples of MUPS. 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). Other professionals with a SOLK (MUPS) background sometimes refer to CFS as a functional syndrome.
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. 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.”
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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.
For ME patients in the Netherlands it is unacceptable that 10 years later, with all the available scientific knowledge about this disease and the clear assignment from Parliament to write an advisory report on ME, for the Dutch Health Council to select 4 members on its Committee who still stand behind the MUPS/CBT theories (and their classifications of CFS) when dealing with this neurological, chronic complex multisystem disease (ICD G93.3). It seems almost redundant to state, that, of course, according to the official rules of the ICD classification system, a disease cannot fall into more than one classification category.
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 or “Recognize ME”. This group of very sick 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 (the 2005 Health Council report did not help in this respect. It is one of the reasons that the CBT/GET paradigm has become so strong in the Netherlands. Almost all reasearch funds after the 2005 Health Council report was presented to Parliament went to CBT studies from Nijmegen/Radboud. It prompted the Dutch Citizens’s Initiative (Burgerinitiatief) “Erken ME”/”Recogize ME” in 2011. It took more than 2 years, but a total of more than 56,000 signatures were collected and presented to Parliament in 2013 (if one collects more than 40,000 signatures the topic has to be discussed in Parliament). The Citizen’s initiative members were invited to talk with members of the Dutch Parliament Health Committee, which consists of representatives of each political party. They were able (together with 2 ME experts who are now not on the Committee) to convince Parliament members that something needed to change for ME patients in The Netherlands. The result, an official request on april 9th 2015 from Parliament to the Dutch Health Council (the official advisory body of Dutch Parliament) for a new advisory report on the state of the scientific knowledge with respect to ME.
This gave Dutch ME patients hope that this time round, with the knowledge and expertise that is now available, and with high hopes for a Committee consisting of relevant ME experts, things could change for the better. During the time between the official request from Parliament on April 9th 2015 and the announcement of the Committee members and the first meeting of the Dutch Health Council Committee in March 2016, the Citizen’s Initiative and other patient organizations were asked to provide names of ME experts (and other relevant info), which they did. Because there is little knowledge on ME in the Netherlands many names of international ME experts were suggested (who had already agreed to participate). None of the above mentioned organizations suggested SOLK/MUPS or CBT professionals as ME experts. Yet, to patients’ utter surprise, not one international ME expert was invited to be a member on the Committee and almost half of the Committee now consists of people with a SOLK/MUPS and CBT background.
Hence, the petition “ME is geen SOLK” (ME is not MUPS) was launched. More than 1000 people have already signed the petition since it was put online on the evening of March 29th 2016.
The Petition Text
ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment
Among ME patients there is no public support for a Dutch Health Council Committee with members denying ME as a chronic, complex, multisystem disease (ICD G93.3) or equating it to “MUPS”, (Medically Unexplained Physical Symptoms), a functional syndrome, a somatoform disorder (ICD F45), neurasthenia (ICD F48) or unexplained fatigue (ICD R53).
Myalgic Encephalomyelitis (ME) patients and all those who recognize the severity and nature of this biomedical disease
That the Dutch Health Council Committee composition is incompatible with the state of the scientific knowledge, of which the Dutch Health Council is aware (WHO recognition ME 1969, ICD G93.3, the Institute of Medicine refers to a chronic, complex, multisystem disease with symptoms that can be explained by objectifiable physical abnormalities as described in thousands of scientific publications),
- nor does it fit the advisory report assignment given by Parliament (an advisory report about ME),
- ME is not MUPS! The Dutch Health Council should select the best available expertise, relevant to this disease, but fails to do so.
To adjust the composition of the Dutch Health Council Committee. Input of patients should be taken as the guiding principle. After all, the Citizen’s Initiative “Recognize ME” was the direct reason for the advisory report assignment. They together with the patient organizations have submitted, at the request of the Dutch Health Council, names of (international) ME experts, who are willing to participate (none of them from the MUPS/Mental Health Care field!). The fact that the Dutch Health Council nonetheless prefers irrelevant MUPS and Mental Health Care professionals, that were not suggested to them, over international ME expertise, is unacceptable. The Dutch Health Council must adhere to its advisory report assignment!
Visit and sign the petition here! Share it with friends and family and let’s force the Dutch Parliament to give this council and its members the further review that it requires.
Source: Dutch ME patients
More info available via @mecvsnieuws and @me_gids