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
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
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / SEID / New Zealand] - YouTube](data:image/gif;base64,R0lGODlhAQABAIAAAAAAAP///yH5BAEAAAAALAAAAAABAAEAAAIBRAA7)
