Dutch ME-Community Appeals for Global Help: Sign Petition

Guest Blog submitted by  the ME Global Chronicle staff
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MUPS (Medically Unexplained Physical Symptoms)

This is a guest post by ME Global Chronicle, a bi-monthly international online magazine, covering news on myalgic encephalomyelitis from all over the world.  They are currently featuring a petition to the Dutch Health Council calling for the replacement of panel members to a government advisory committee who have a psychogenic bias of the disease.

 

Dutch Citizen Initiative to Recognize ME as a Biomedical Disease - Including Petition

An appeal for help from the Dutch ME-community with a single, simple action: signing its petition to show your support.

The petition can be signed by anyone reading this. (You don’t need to be Dutch to sign.)

The Dutch myalgic encephalomyelitis (ME) community has started a petition to the Dutch Health Council to change the current composition of its Health Council of the Netherlands panel reviewing the state of science resulting in an advisory report on ME. The reason for the petition is the concern from the patient community that some of the current panel members are biased toward the psychogenic view of the disease.  This, they say, is incompatible with the state of the scientific knowledge of the neuroimmune disease, ME (WHO recognition ME 1969, ICD G93.3).  

ME is not medically unexplained physical symptoms (MUPS), as some of the panel members propose. The petition calls for the adjustment of the composition of the Dutch Health Council Committee with the guidance of the patients. They want the inclusion of international ME experts and are calling for the Council to heed its advisory report assignment.

History of Events

The Dutch Ministry of Health has been and is currently using a chronic fatigue syndrome (CFS) guideline for practitioners which was issued in 2013. This guideline recommends Cognitive Behavior Therapy (CBT) and Graded exercise Therapy (GET) as the only effective treatments for the disease.

In the Fall of 2011, a group of ten independent patients, calling themselves the Groep ME Den Haag (Group ME The Hague), started a petition requesting the Dutch Ministry of Health to: recognize ME as a biomedical neuroimmune disease (separate from CFS); disseminate information about ME to medical practitioners and in medical education; use the ME ICC criteria for diagnostic purposes; increase ME biomedical research. They successfully collected 56,000 signatures and delivered the petition to the Dutch Ministry of Health. (They only needed 40,000 for a responsive action.)

In 2014, in response to the successfully completed and delivered petition, the Dutch parliament commissioned the Health Council of the Netherlands to evaluate the current state of knowledge about ME with special attention to:

  • definition and criteria for diagnosis

  • origin, progress and prevalence

  • ability for prevention and treatment

  • impact on the quality of life; environment and social

  • organization of treatment and support

  • current scientific developments and perspectives  

The Groep ME Den Haag wrote to the Health Council, before the start of the commission to review the state of science on ME, requesting that they should be extra critical regarding the subject of CBT and GET, taking published criticisms into account. In addition, because of the lack of local ME experts (due to the long decades of stigma), the group urged the Health Council to include foreign ME experts.

The following International ME experts wrote to the Groep ME-Den Haag pledging their support:

Prof. Alan Light, the late Dr. M. Lerner, Dr. A. Kogelnik, Prof. Mady Hornig, Dr. Nigel Speight, Prof. Leonard A. Jason, Prof. P. Powles, Dr. Spurr, Dr. Lucinda Bateman, Dr. Byron Hyde, Dr. Ellie Stein, Dr. Dan Peterson, Dr. John Chia, Prof. Gordon Broderick, Prof. Patrick McGowan, Prof. Kenny DeMeirleir, Prof. Jarred Younger, and others.

Yet, in March 2016, the Health Council appointed a highly biased panel, with three out of the ten members favoring the MUPS theory of the disease and the promotion of CBT and GET. The Council dismissed the Groep ME-Den Haag’s warning against panel members who are proponents of the psychosomatic beliefs of the disease and cautions about the dangers of CBT and GET.   

Panel Members

The following three members of the panel are proponents of the medically unexplained physical symptoms (MUPS) belief of the disease:

Dr. Hans Knoop - the present head of the Nijmeegs Kenniscentrum Chronische Vermoeidheid (NKCV, CFS knowledge center in Nijmegen). He and his predecessor Prof. Gijs Bleijenberg and others from the NKCV published extensively together with Profs. Simon Wessely, Peter White, Trudy Chalder, Michael Sharpe and others.

Prof. Rosmalen -  head of a project Grip op Klachten (Grip on Complaints www.gripopklachten.nl, only Dutch) which has been subsidized for 1.5 million euro by the Innovatiefonds Zorgverzekeraars (Innovation Fund Health Care Insurance Companies) to disseminate the benefits of CBT in ME (which is explained to be the same as CFS or MUPS, Medically Unexplained Physical Symptoms)  and to train as many health practitioners as possible in applying CBT with people with ME. The NKCV plays a crucial part in this project.

Dr. olde Hartman -  publishes and disseminates CBT as being the preferred therapy to be given by GPs for people with ME who he proposes suffer from MUPS.

In addition, the panel includes four specialists with very little ME research experience and two patient representatives.

The Health Council dismissed the Groep ME Den Haag’s and the parliament’s insistence that this investigation is about the disease ME - not CFS, CF or MUPS, and named the panel ME/CVS (ME/CFS) instead.

Dutch ME patients are concerned that this doomed course will result in the conclusion that it’s best to leave things as they are - meaning that the present CFS-guidelines (which are almost a copy of the British NICE-guidelines) are the be-all and end-all of the present state of knowledge of ME.

The day after the publication of the names of the panel, Dutch patients started the current petition against the choice of problematic panel members and urging the Health Council to replace them with experts on different aspects of the disease, instead of representatives of the MUPS-school of thought.

Petition

The petition to protest against MUPS-members of the panel of the Health Council of the Netherlands in support of the Dutch ME community can be signed by anyone reading this. (You don’t need to be Dutch to sign.)

Click on this link to sign the Dutch ME-community's petition:

https://petities.nl/petitions/me-is-geen-solk-wijzig-gezondheidsraadscommissie-en-houd-u-aan-de-adviesopdracht?locale=en                                             

We

Myalgic Encephalomyelitis (ME) patients and all those who recognize the severity and nature of this biomedical disease

Observe

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.

And request

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!


Showing 2 reactions

  • commented 2016-06-19 16:08:46 -0400
    Thank you for your comments. The comment period has expired. However, if you still wish to comment, please do so on our MEadvocacy.org Facebook page. Thank you for your interest.
  • commented 2016-04-28 07:32:23 -0400
    You can seek a judicial review in the high court in Netherlands to have 4 persons removed from this panel. Lawyer and some doctors who are me experts will be required. Some foreign doctors willing to skpe to provide court testimony. You defeated the Nazis by fighting, and you will need to keep fighting. Freedom is not free