This petition still needshelp, Please help stop influence of non-evidence based paradigms/treatments

meisnotMUPS

Member
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
 

meisnotMUPS

Member
This Dutch petition can still use your help. https://petities.nl/petitions/me-is-not-mups-change-dutch-health-council-committee-and-adhere-to-the-advisory-report-assignment?locale=en

Please consider signing (will take just one minute, you can sign anonymous, and from all over the world, but don't forget to click on the confirmation link in your email after you sign). It will help so many.

Please help us send a clear message to the Dutch Health Council (currently writing an advisory report on state of the scientific knowledge aboutt ME), that it is unacceptable to have more than half of its committee members be proponents of the disproven (bio)psychosocial hypothesis, with vested interests in CBT/GET, still claiming these therapies are evidence based, can do no harm and are effective....
The other members on the committee are not ME experts at all, the Dutch health council refused to include international experts (several of which had already said they would be willing to participate/give advice before this committee was formed) yet chose BPS/CBT/GET proponents instead who are on record saying that CFS is a undifferentiated somatoform disorder....

Remember, the Dutch were the ones that provided (one of) the CBT protocols for PACE, Bleijenberg and Knoop (the latter now on the committee) wrote the famous PACE commentary "where to pace from here" which included false claims about recovery, The Dutch in the past did several CBT studies with Children, some of which are now being repeated (with the Dutch) in the UK (lFITNET).
David Tuller recently wrote about the Dutch influence and their flawed studies in his blogs. http://www.virology.ws/2016/12/02/trial-by-error-continued-the-dutch-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. It’s almost too easy to poke holes in these things. And yet the investigators appear unable to restrain themselves from making extremely generous over-interpretations of their findings–interpretations that cannot withstand serious scrutiny. The investigators always conclude, no matter what, that cognitive and/or behavioral therapies are effective for treating the disease they usually call chronic fatigue syndrome."

Please sign:

https://petities.nl/petitions/me-is-not-mups-change-dutch-health-council-committee-and-adhere-to-the-advisory-report-assignment?locale=en
 

Anne Ö

Member
The petition now has 79% of the signatures needed (10,000) - please sign to get them up to 100%! What happens in the Netherlands with affect the international development regarding ME.

https://meisgeensolk.petities.nl/?locale=en

Note that you have to comfirm by the email you recieve. Open the link in the email, write your name and place, and just press 'Werk mijn onderetekening bij'.
 

Remy

Administrator
The petition now has 79% of the signatures needed (10,000) - please sign to get them up to 100%! What happens in the Netherlands with affect the international development regarding ME.

https://meisgeensolk.petities.nl/?locale=en

Note that you have to comfirm by the email you recieve. Open the link in the email, write your name and place, and just press 'Werk mijn onderetekening bij'.
I just signed it...and it was all easy and in English. Maybe it selects the language by your IP? I'm the US. Either way, lets all sign it!
 

meisnotMUPS

Member
Can you please help the Dutch reach 10,000 signatures for their petition.
1794 more signatures needed, just few weeks left.

Please don't let ME be rebranded as "MUS"/MUPS (medically unexplained physical symptoms), based on a BPS model that has never been proven. Enough is enough, how many more decades before we have access to real care ? In Europe and the Netherlands there is none!

Please sign and share. https://meisgeensolk.petities.nl/?locale=en
 

meisnotMUPS

Member
Dear all, Dutch need your help. Please consider signing and sharing.

To stop BPS proponents/Dutch PACE colleagues from hijacking ME and rebranding it as MUS, functional somatic syndrome, BDS, SSD or whatever they come up with.
The influence of those BPS proponents is huge. Like in the UK, it are these people who again and again are in policy making committees/decision positions.
The Dutch Health Council has put several on a committee that is writing an advisory report to Dutch Parliament.

Please speak up on behalf of all of us.
These BPS proponents have huge conflicts of interests (and still claim CBT/GET are safe, and effective/evidence based).
We just want our lives back. That will not happen if those with vested interest are determining our future care...
We cannot continue to go without proper care and have BPS proponents spread what is basically an unproven hypothesis, that is hampering all progress.

Time for change, but we will need your help.
Please. spread this link, we need 1103 signatures to reach the goal of 10,000
Together we can do this, but we need your help!
https://meisgeensolk.petities.nl/?locale=en

(
you can sign anonymous if you want, from any country, but don't forget to click on the confirmation link in your email after you sign. once you have don that your signature counts)
 

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