Dutch Health Council on ME/CFS tomorrow on national news

Very nice. What country will be next?

 

And if it's cr*p then presumably it still will ... so as everyone says, fingers crossed.

 

Going to be honest. Pretty disappointed with the outcome.

The Dutch situation is eerily similar to the one in Denmark. In the Netherlands you have 'SOLK'. In Denmark you have the 'functionelle lidelser' or 'Bodily Distress Syndrome'.

Recently in Denmark the organisation of health authority and the leading psychiatrists have been talking about how severe ME/CFS is, and that the patients are not cared for well enough. They talk about lack of funding and also note that they have no problem with people calling the disease a physical illness. At the same time, the leading psychiatrists such as Schröder and Fink don't even believe that ME/CFS exists as a separate entity. In fact they don't believe that there is any difference between ME/CFS, irratable bowl syndrome or fibro.

What is even worse, they are moving towards a faux biological approach to ME/CFS. Where they state that, yes, the disease is indeed something biological. In fact it has something to do with the brain, which of course sounds very sciency. Problem is of course, this problem in the brain, for which there is no scientific evidence, can apparently be relieved by CBT and GET according to their studies. The faux biological approach which I am sure will be the future in The Netherlands for the psychiatrists is a lot more dangerous than the deconditioning / crazy ME/CFS patients theory because it sounds a lot more convincing to politicians or even health personel who do not have the time to reflect on the research critically.

Until health authorities come out and acknowledge CBT and GET for the moronic disgraceful bumpkin science that it is, the psychiatrists will easily be able to adapt for the next 10-20 years and be able to provide harmful treatments for patients, even after a biomarker has been found.

 

Exactly. Moreover not just ignored, but tacitly enforced - people not getting sickness payments etc unless they toe the party line.

 

Germany, please...

 

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.

 

Press release of Dutch patients association:

https://www.steungroep.nl/images/ME...ice Dutch Health Council znvdp 19-03-2018.pdf

 

@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.

 

Well of course it is a long story but:
1. A large number of academic physicians worldwide (including me) now consider that the basis for recommending CBT and GET for ME, especially the PACE trial, is worthless and has led to a false economy with diversion of resources into ineffective or harmful treatments.
2. NICE is reviewing guidelines and it is important that resources are diverted to the real needs of patients. The key factor in this is a recognition that CBT and GET do not have the sort of evidence base normally required for recommendation on the NHS and should be removed.
3. Health administrators in the USA have already made this change. In Holland a recent report has acknowledged that CBT and GET are not to be considered adequate treatments in line with normal medical recommendations.

 

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

 

It is interesting that the notice implies that in Holland GET does not really exist on its own. Again I have the impression that CBT and GET are actually inseparable and perhaps indistinguishable in the PACE form, which may be why they ave pretty much the same outcome. This is another problem with all the studies Cochrane reviewed for exercise therapy - it is impossible to know what component of the intervention did what - if anything.

 

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).

 

thanks, I used it to edit my post.

 

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.

Moderator note: Some following posts related to Cochrane have been moved to
https://www.s4me.info/threads/cochrane-review-and-the-pace-trial.2529

 

I have written letters regarding GET for ME/CFS to the CDC, Kaiser Permanente, Healthwise, California Department of Public Health, California Medical Association Medical Board of California, and California Department of Managed Healthcare.

The California Department of Managed Healthcare has been the most responsive so far. But the California Medical Association Medical Board of Calfornia is technically the one responsible for scope of practice issues.

 

Me too of course but Knoop and Rosmalen. 2 of the members are friends with the PACE authors, Per Fink, Crawley etc. So yeah it was kind of mission impossible as 4 of the 7 clinicians were BPSers.

CBT has indeed a GET component to it so GET is still around. Blijenberg his little creation.

Anyways, lots of work still to be done. Does it ever end...

 

Somehow that seems unlikely while ME/CFS comes under the umbrella of Cochrane's Common Mental Disorders Group.

 

It wasn't perfect. And we all know there is still a long way to go.
The psycho-babblers need to leave the scene 100%.

What I am happy about is the very clear message that went out yesterday:
ME/CFS is not imaginary, but a real, and very serious chronic illness.

And that message has been heard and seen on the 20:00 news by 2.196.000 of my countrymen. And another 1.387.000 on the 19:30 RTL news. (both broadcasts below)

Over 3.5 Million people have watched these news shows. Yes we're a small country ;-) But still.

This is a step in the right direction. We will be taken more seriously now.

Sorry no subtitles yet. Low energy.

NOS Journaal (dutch 20:00 news)

https://www.youtube.com/watch?v=180gKCvdXZY

Again well done @Lou Corsius and family !

RTL News 19:30

https://www.youtube.com/watch?v=1zG057WhdkY

And it's making front pages in all our major newspapers today:

https://www.nu.nl/gezondheid/518364...iekte-volgens-gezondheidsraad.html?redirect=1

https://www.telegraaf.nl/nieuws/1806635/gezondheidsraad-chronische-vermoeidheid-is-ernstige-ziekte

https://www.trouw.nl/home/chronische-vermoeidheid-deels-erkend-als-chronische-ziekte~a8ca6a20/

https://www.nrc.nl/nieuws/2018/03/19/gezondheidsraad-neem-chronische-vermoeidheid-serieus-a1596215

https://www.medischcontact.nl/nieuw...el/gezondheidsraad-maakt-draai-over-mecvs.htm

https://zorgkrant.nl/chronisch-zieken/8622-me-cvs-is-een-ernstige-chronische-ziekte

https://www.gezondheidsplein.nl/nie...diagnose-en-behandeling-van-me-cvs/item121603

(Add google translate to your browser to translate)

Add this to the 3,5 million viewers. That is a lot of exposure.

Yes, quite happy with this.

 

Chronische vermoeidheid deels erkend als chronische ziekte

Knoop version of events:

https://translate.google.fr/translate?sl=nl&tl=en&js=y&prev=_t&hl=fr&ie=UTF-8&u=https://www.trouw.nl/home/chronische-vermoeidheid-deels-erkend-als-chronische-ziekte~a8ca6a20/&edit-text=
https://www.trouw.nl/home/chronische-vermoeidheid-deels-erkend-als-chronische-ziekte~a8ca6a20/

HT @Grigor

 

With some of the patients that therapy works and it would be a shame if one would not start it again .

It seems that Dr Knoop is reduced to quoting clinical anecdote now.