ME=not "MUS" Please be one of the 1004 signatures we need to reach 10,000

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Indeed the document you refer to are the forms for declaration of (conflicts of) interests
https://www.gezondheidsraad.nl/en/node/4166/independence
https://www.gezondheidsraad.nl/sites/default/files/codedigital2012EN.pdf

According to its own code, the Dutch Health Council must publish these forms online after the start of the Committee. All the Dutch ME (and CFS) patient organizations have written to the Dutch Health Council because they do not agree with the MUPS/MUS influence in the committee and are seriously worried about conflicts of interests and the fact that the Dutch Health Council chose to ignore international ME expertise (they were asked before the comittee started to provide names of ME experts, some of them had already agreed to take part if asked), none of the patients organizations or the Dutch Citizen's initiative, provided/suggested MUS/MUPS experts in the committee, yet the Dutch Health Council thought it relevant to put 4 of them in the committee and ignored the names of international ME experts.

Rosmalen (who is on the advisory board of the Journal of psychosomatic research, the official journal of the EAPM together with White, Wessely, Fink etc) mentions a "grip op klachten" project, that is the 1.5 million MUS project, funded by innovation fund health insurers.
see: https://www.gripopklachten.nl/wie-zijn-wij/
and: innovation fund health insurers 2013 projects http://www.innovatiefondszorgverzek...verzicht-alle-gehonoreerde-projecten/101-2013 you will find the SOLK project under number 24 http://www.innovatiefondszorgverzek...ldoende-verklaarde-lichamelijke-klachten-solk (sorry is in Dutch)
Rosmalen mentions this project, but says there are no financial conflicts..... She mentions Knoop as co-project leader, Knoop does not mention this project at all. In fact he does not mention any conflicts of interest.......

Rosmalen and Knoop are/were both part of Eurasmus.net, a site which has been taken down. There is another thread about Eurasmus, which originated in 2010, here on the forum. A european collaborative including Creed, White, Per Fink !.

Both Knoop and Rosmalen have published with PACE authors like White...Knoop wrote the well known "where to pace from here" commentary (together with Bleijenberg) with the original PACE publication in the lancet, which includes incorrect interpretations of the conclusions, they have never corrected it, even though the editor at the time admitted it was incorrect.

this just goes on and on....
 
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If you can, please sign this very important petition.
https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

The Dutch are in a truely horrible situation. The Dutch Health Council, asked by Dutch Parliament, to write an advisory report on the state of the scientific knowledge about ME, selects a committee with half of its members who have been colleagues with PACE authors, Wessely, Creed, Per Fink (Karina!!) for years. Dutch patient organizations raised serious concerns about conflicts of interest and not adhering to the advisory report assignment (about ME! ICD G 93.3). The Dutch Health Council until now ignores it. These committee members in question clearly follow the wessely-school thinking/paradigm about ME as MUPS (medically unexplained physical symptoms); based on which they classify ME or CFS as functional somatic syndrome or undifferentiated somatoform disorder etc. in need of CBT/GET.

Please Help. Sign and share if you can: https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

Many ME experts signed (A. Whittemore, dr. Weir, Dr. Zeineh, Prof. Racaniello, dr. vanNess, dr. van Elzakker, Prof. Coyne, Janet Dafoe). please add your signature today. No more influence of old/unproven paradigms in health care policy / treatment recommendations for ME. CBT/GET is not an evidence based treatment, the biopsychosocial model does NOT apply tot ME, ME is a serious chronic multi-system disease. Putting professionals on an advisory committee who claim otherwise is unacceptable. Your help is appreciated.
 
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This petition still needs a lot of help....so please consider signing and sharing. Help us reach 7500 signatures. It is so important. https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

For more background info see: http://www.meaction.net/2016/04/06/petition-me-is-not-mups-medically-unexplained-physical-symptoms/

As long as we have proponents of the biopsychosocial model involved in health care or policy making for ME (and more/new - biomedical - research), things will not change ...
Half of the Dutch Health Council committee on ME consists of Dutch PACE colleagues, proponents of the biopsychosocial model, these members have clear vested interests (2 of committee members are projectleaders of a 1,5 million Euro MUS project, funded by health insurers, goal: implementing CBT/GET in Dutch mental health care for ME and CFS).....they continue to claim CBT/GET are effective and safe treatments.....(despite PACE reanalysis, despite the AHRQ addendum)
They equate ME and CFS with undifferentiated somatoform disorders, functional somatic syndromes, have lumped CFS (together with Fibro, lyme Pots, IBS) into a made up "diagnosis" of Medically unexplained (physical) symptoms (MUS/MUPS)....(that is based on de BPS model) ....in need of CBT/GET....

In a recent newspaper article in September Hans Knoop (Note: he is currently on the Health Council ME committee writing advisory report on ME to Dutch Parliament, that will influence care for Dutch pateints for the next decade!!!) is quoted as saying:
"Behavioral and existing exercise therapy are so far the only proven effective treatments for this disease. People have fewer symptoms, a minority even recovers completely" According to the psychologist, more than half of the patients benefit from cognitive behavioral therapy. "You can see that reflected in research and it is a safe therapy. Anyway, it cannot hurt. Apparently the patient organisation has spoken with other people, especially those who are dissatisfied "
Note: the ME/cvs vereniging published a report showing the marjority of patients reported that CBT has had a negative effect on their health (52%), combined with GET this percentage increased to 63%.

On Sept 28 th 2016 in national newspaper: Prof dr. Gijs Bleijenberg, former head of the leading Research Centre for Chronic Fatigue in Nijmegen, gives the biopsychosocial rethoric that is the basis for MUPS/CBT/GET proponents. He "finds the distinction between mental and physical obsolete. ,,Every illness has biological, psychological and social aspects. Without a doubt CFS / ME has a physiological basis, that, however, we do not know yet.'' But he finds cognitive behavioral therapy the best treatment method" If there are physical defects, it does not mean that CBT is not the right treatment. The one does not exclude the other''
“The Knowledge Centre, that, each year treats more than 500 ME patients, is based on research involving the effectiveness of behavioral therapy compared with alternative treatments and with no treatment. ,,Every time it shows that people are less tired and limited after CBT'' said Bleijenberg. ,,The majority benefits and have no or fewer symptoms. About a third does not benefit. "And does he also know cases/patients who got worse, as described by Visser? "No. Sometimes people report more symptoms during and after treatment. But that happens just as often when people do not get treatment ''

Knoop and Bleijenberg are both well known for their "where to pace from here" commentary in the Lancet, published next to 2011 PACE article. In which they, as David Tuller and others have pointed out, make a false/exaggerated interpretation about the PACE "recovery' results.

Please Help, and share the petition link. We cannot move on, things will not change, if the influence and non-evidence based claims of proponents of the unproven biopsychosocial model continues

https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en
 
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David Tuller in his latest blog discusses the Dutch CBT/GET studies (Dutch and UK CBT/GET proponents have been working closely for years). http://www.virology.ws/2016/12/02/t...ch-studies-again-and-an-esther-crawley-bonus/

"Wow, the research from the CBT/GET crowd in The Netherlands never ceases to amaze. Like the work of their friends in the U.K., each study comes up with new ways to be bad."

"The Dutch branch of the CBT/GET ideological brigade has been centered at Radboud University Nijmegen, home base for many years of two of the movement’s leading lights: Dr. Gijs Bleijenberg and Dr. Hans Knoop. Dr. Knoop recently moved to the University of Amsterdam and is currently a co-investigator of FITNET-NHS with Esther Crawley. Dr. Bleijenberg, on the occasion of his own retirement a few years ago, had this to say about his longtime friend and colleague, PACE investigator Michael Sharpe: “Dear Mike, we know each other nearly 20 years. You have inspired me very much in the way you treated CFS. Thanks a lot!”

Indeed. Dr. Bleijenberg and his Dutch colleagues appear to have learned a great deal from their PACE besties. Dr. Bleijenberg and Dr. Knoop demonstrated their own nimble use of language in the 2011 commentary in The Lancet that accompanied the publication of the first PACE results. I discussed this deceptive commentary at length in a post last year, so I won’t regurgitate the whole sorry argument here. But the Dutch investigators themselves are well aware that their claim that thirty percent of PACE participants met a “strict criterion” for recovery is preposterous."

And he also talks about the Dutch Health Council, that chose many BPS / CBT/GET proponents on its committee (among who Knoop) and is writing an advisory report on ME to Parliament as we speak.

"The studies from the Radboud University crowd and their compatriots all rest on the same silly, unproven hypotheses of dysfunctional thinking, fear of activity, and deconditioning, and are just as intellectually incoherent and dishonest. Should the Health Council produce a report recommending cognitive and behavioral treatments based on this laughable body of “research,” the organization could become an international joke and suffer enormous long-term reputational damage. "

After reading David's blog, please take a minute to sign the Dutch petition addressed to the Dutch Health Council. Dutch patients can use your help!! (you can sign with your name or anonymous, but don't forget to click on the confirmation link in your email after you sign). Thank you so much.

https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en
 
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Please don't forget to sign the Dutch petition. we seriously need your help to stop Dutch Pace colleagues/BPS proponents (on Dutch Health Council Committee writing advisory report to Parliament on ME) influencing health care policy for ME for the next decade.
We want to live, not be ignored and just exist.

https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

With your help we should be able to reach 6000 signatures by the end of this year (170 to go). (you can sign anonymous or with your name, but don't forget to click on the confirmation link in your email after you sign).

thank you so much.
 
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Please help us reach 7000 signatures (803 needed). https://petities.nl/petitions/me-is...sie-en-houd-u-aan-de-adviesopdracht?locale=en

The Dutch truely need your help, The Dutch PACE colleagues (yes the ones now involved in FITNET NHS, which is based on Dutch CBT studies in Children!) created a narrative of 'alternative facts' and hypotheses that is harming patients and progress, lets create some much needed change.

(you can sign anonymous, anyone from around the world can sign, but don't forget to click on the confirmationlink in your email after you sign)

Please sign and share.
 
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This Dutch petition still needs help :tulip::bouquet:
https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

Can you help us reach 6500 this weekend? 93 still needed.
Don't let ME become some sort of non-diagnosis like MUS (which is lumping together CFS/CF, Fibro, IBS, Lyme etc, it is happening as we speak, please speak up!), Don't let an unproven biopsychosocial model be the basis for care for ME.
It are these (Wessely-school) professionals' "alternative facts" actively being spread that hamper all progress.

Please sign and share (you can sign anonymous from anywhere around the world, but don't forget to click on the confirmation link in your email after you sign)
 
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This Dutch :tulip::bouquet: petition still needs help :redface::rolleyes:
https://petities.nl/petitions/me-is...e-to-the-advisory-report-assignment?locale=en

442 signatures needed to reach 7000

Anyone from any country can sign, it will just take one minute. You can sign anonymous or with your name. Don't forget to click on the link (for confirmation) in your email.

We need the help to have our voices heard by the Dutch Health Council, who put a majority of BPS proponents/Dutch PACE colleagues on their ME committee, a committee with the assignment to write an advisory report on ME to Dutch Parliament. These BPS proponents say ME is MUS/MUPS. the Dutch MUS guideline (one of the authors is on the committee) describes CFS as a undiff. somatoform disorder.....Others (Knoop/Rosmalen) have long standing relationships with the UK Wessely-school.

Please help...we can't wait another decade for change....we need a chance to get our lives back in our lifetime....