[Not sure if this is the right subforum, as it is technically not a scientific study.]
http://www.me-cvsvereniging.nl/sites/default/files/Rapport.pdf
I haven't read it yet (it's 50 pages), but Frank Twisk posted this overview of the results regarding CBT/GET vs pacing etc.
A Dutch newspaper already reacted to the results of this survey. It starts out ok, but as per usual they give the BPS crew ample opportunity to deny everything...
http://www.trouw.nl/tr/nl/39681/nbs...eniging-ME-CVS-raadt-gedragstherapie-af.dhtml
(I tried to create a Google Translate link, but their web cookies are too persistent...)
http://www.me-cvsvereniging.nl/sites/default/files/Rapport.pdf
press release through Google Translate said:Report "Care for ME" comes with shocking results
Press Release ----- -----
Utrecht - It is very bad for the care of ME patients in the Netherlands. This is clear from the report "Care for Me" presented today at Dianda Veldman, director of the Federation of Patients Netherlands in Utrecht. ME / CFS Association wrote the report to draw attention to the extremely difficult situation of care for chronic disease.
Care for ME gets of the Dutch patients a 2.3 rating. An astonishingly low figure - according to a major survey - mainly due to a lack of knowledge about the disease among physicians and lack of effective treatments.
Improper doctors
The experience of GPs and specialists are often very poor. Two-thirds of patients experience a significant lack of expertise in the field of ME by general practitioners and specialists.
Moreover, it often takes a very long time before it is diagnosed. Nearly half of the patients had more than four years waiting for a diagnosis.
Pathogenic treatments
Just as shocking are the effects of the standard treatments cognitive behavioral therapy (CBT) and graded exercise therapy (GET).
In 52% of patients CGT has a negative effect on their health. Combined with this GET was 63% even at the case.
Randomness for disability
Many patients are uncapable to work in a position or have to drastically curtail their hours. It is based on pure randomness if ME patients receive incapacity benefit. Half the bed bound patients receive no benefit. This is also true for patients with a mild form of ME.
Call for recognition
The patients expressed the same wish unanimously regarding care.
- Recognition of ME as a biomedical disease
- Funding for biomedical research into the causes and effective treatments
- Training of doctors
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a severe, chronic and complex multisystem disease. The disease creates serious limitations in daily life.
I haven't read it yet (it's 50 pages), but Frank Twisk posted this overview of the results regarding CBT/GET vs pacing etc.
Frank Twisk on FB said:Of the respondents who were subjected to CBT
37 (11,38%) qualified CBT as (very) positive
with regard to the effects on their health,
while the majority (171 patients, 52,62%)
rated the effect of CBT as (strongly) negative.
221 (50,80%) of the 435 patients
were subjected to the combination CBT and GET.
Of those patients only 7 (3,17%) reported benefits,
while 140 respondents (63,35%) experienced
a (very) negative effect on their health status.
Source:
Care for ME –
Survey of ME Patients
about their Experiences with
Health Care in the Netherlands, 2016
A. de Kimpe, B. Crijnen, J. Kuijper, ir. I. Verhulst, Y. van der Ploeg.
August 2016
A Dutch newspaper already reacted to the results of this survey. It starts out ok, but as per usual they give the BPS crew ample opportunity to deny everything...
http://www.trouw.nl/tr/nl/39681/nbs...eniging-ME-CVS-raadt-gedragstherapie-af.dhtml
(I tried to create a Google Translate link, but their web cookies are too persistent...)
Trouw said:ME/CFS patient organisation discourages CBT/GET
Patients with chronic fatigue are dissatisfied with treatments that are advised by the doctor. Yet they often do work, says an expert.
A survey of over 600 patients by the ME CVSvereniging shows little confidence in the treatments recommended in the guidelines for GPs.
(...)
"Behavioral and existing movement therapy are so far the only proven effective treatments for this disease. People have fewer symptoms, a minority even heal completely," Hans Knoop reacts by Dutch Knowledge Centre for Chronic fatigue.
In that center, attached to the Nijmegen Radboud University Nijmegen Medical Centre, 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. Apparently the patient organisation has spoken with other people, especially those who are dissatisfied.."
"Do not be silly'
Knoop 'regrets' that the patients' organisation discourages CBT/GET therapy. Some of the patients feel misunderstood, he notes. "They hear quite often: anyway just start moving, don't be silly. Or one has the idea that when you go in behavioral therapy, this means that the disease is your own fault.
But that is not correct: this is a serious condition that a large group of people severely limited in life. The estimates range from 30,000 to more than 100,000 Dutch. And it is a condition that also has a physical component in addition to behavioral factors. That we will certainly not deny, we include that in our own research. "
An examination of the patient also demonstrates that the disease means for many patients, loss of employment and income.
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