And if it's cr*p then presumably it still will ... so as everyone says, fingers crossed.I feel this one is very important for all of us. Like David Tuller said if it's any good then it could have an effect on the rest of Europe and world
Exactly. Moreover not just ignored, but tacitly enforced - people not getting sickness payments etc unless they toe the party line.Sorry to be cynical but the U.K. NICE guidelines currently say patients are free to choose but that is ignored in practice.
Germany, please...Very nice. What country will be next?
https://www.steungroep.nl/images/ME...ice Dutch Health Council znvdp 19-03-2018.pdfThe organizations of ME - and CFS - patients support the recommendations of the Health Council regarding ME (1). Improvement of the situation of ME-patients is urgently needed. Concrete measures are now required.
Today, the Health Council concludes that ME is a serious, chronical illness which substantially affects patients’ functioning and quality of life. Care for ME must improve, and The Netherlands is way behind on scientific research, the Advice notes. An estimated 30.000 to 40.000 ME-patients live in the Netherlands. The patients’ organizations advocate the energetic execution of the measures listed below.
It seems pretty luke warm to me, although at least concerns are raised.
I would have preferred them to say there is no justification for recommending CBT or GET (which according to Wessely and Chalder 1989 are actually the same thing - each includes the other).
I think a much more definitive change in wording is needed if new NICE guidelines are to have any impact.
@Jonathan Edwards I now have the ear of my MP who went to the recent debate and asked a question. Do you have any thoughts of what I need to ask or tell him? My last email to him was copying @Sasha 's letter asking him to go.
Sorry this is off topic I but don't know where to ask. Please move if necessary.
Some perhaps.3. Health administrators in the USA have already made this change.
thanks, I used it to edit my post.Executive summary of the guidelines in English (translation by the Health Council itself, so I guess this is the official translation?) https://www.gezondheidsraad.nl/en/t...as-of-activity/optimale-gezondheidszorg/mecfs
Some perhaps.
But as one of Kaiser Permanente's 13 million members, I can assure you that they still recommend GET and CBT for ME/CFS.
Edit: I've come to understand that, in the United States, GET and CBT for ME/CFS are considered a "scope of practice" issue. Scope of practice issues are decided by states, not the federal government. The only state I'm aware of that has taken a position against GET/CBT is New York (thanks to Mary Dimmock).
I have written letters regarding GET for ME/CFS to the CDC, Kaiser Permanente, Healthwise, California Department of Public Health,Interesting. Thanks for sharing. I had not heard the "scope of practice" point before. But I know that Uptodate, online guidance used by doctors nationally, as well as Healthwise, which provides guidance to Kaiser and a number of other medical organizations, still recommend CBT and GET. So do a number of American medical societies and major journals. Still a battle to get it changed, especially with Cochrane still recommending it.
IMO, we need Cochrane to do what AHRQ did - reevaluate the evidence after eliminating the Oxford studies because Oxford includes patients with other conditions.
It seems pretty luke warm to me, although at least concerns are raised.
I would have preferred them to say there is no justification for recommending CBT or GET (which according to Wessely and Chalder 1989 are actually the same thing - each includes the other).
I think a much more definitive change in wording is needed if new NICE guidelines are to have any impact.
Somehow that seems unlikely while ME/CFS comes under the umbrella of Cochrane's Common Mental Disorders Group.IMO, we need Cochrane to do what AHRQ did - reevaluate the evidence after eliminating the Oxford studies because Oxford includes patients with other conditions.
Psychologist and therapist Hans Knoop stepped a week before the presentation from the committee because he could not find himself in the advice. "There are good things in it, such as that you have to take patients and the disease seriously and that extra money goes to research," says the professor of medical psychology at the Amsterdam AMC and head of the Dutch Knowledge Center for Chronic Fatigue. "But the use of cognitive behavioral therapy is doubtful and the possible drawbacks are mentioned, which is not in accordance with the current state of science.With some of the patients that therapy works and it would be a shame if one would not start it again . "