A Cognitive Behavioral Therapy (CBT) Bastion
The Netherlands has long been a bastion of CBT – only the U.K.’s been able to match its tenacious pursuit of the therapy. Over the past five years, Dutch researchers have published no fewer than 20 CBT/pyschological papers. The two countries, the Netherlands and the U.K., have dominated CBT/GET research in ME/CFS for years, pouring tens of millions of dollars into it.
The reason CBT/GET studies get traction while other treatment possibilities languish is simply because these studies have received more money. The disparity between the attention behavioral therapies like CBT/GET and other treatment possibilities get in chronic fatigue syndrome (ME/CFS) is enormous.
When non-behavioral studies do get funded they tend to be small, lack rigor and are underpowered. Of the six drug trials in ME/CFS from 2013 to 2015, for instance, only two had over 30 participants and two had less than five. Compare that with the number of participants in behavioral studies during the same period of time (n=44, 204, 142, 169, 112, 261, 120+, 481, 641, 389, 1643, 9)
When a slim portion of the possible treatments for a disease gets outsized attention, that treatment gets an undue focus in the media and with doctors, and both doctors and patients miss possibilities for effective treatments.
Advocacy Makes the Difference
ME/CFS advocacy makes a difference again. It was a citizen’s initiative which prompted the lower House of the Dutch Parliament to task the Dutch Health Council (DHC) with bringing it up to date on ME/CFS matters. The DHC appears to be Netherlands’ counterpart to the U.S.’s Institute of Medicine (now called the Health and Medicine Division); i.e. it’s an independent Dutch scientific advisory group the government relies on for advice on scientific matters.
The committee consisted of experts from various fields and patient representatives. Different views on ME/CFS were represented. A couple years in the making, the report was highly anticipated by the ME/CFS community there.
The Report
The federal report made a strong call for more ME/CFS research…
Some of the conclusions are stunning. By asserting that treatment cannot address the causes of ME/CFS and emphasizing that more research is needed, the ME/CFS Committee effectively threw its weight behind more pathophysiological research and away from behavioral research. The Committee’s assertion that “little is known with certainty about the pathogenesis of the disease” made it clear that for them research is a priority.
The Council didn’t directly hammer CBT – a majority believed it was an option while a significant minority disagreed – but the takeaway was that more research, not more CBT, is what’s needed. The Committee made the limitations of the therapy clear when they highlighted in the executive summary the fact that 75% of ME/CFS patients in the Netherlands are highly dissatisfied with their treatments.
Stating that “Treatment(s) cannot address the causes of the disease”, the entire group – CBT proponents and opponents, surprisingly – agreed that CBT/GET was not getting at the cause of ME/CFS.
Recommendations – More Research, Less CBT/GET
If the report’s recommendations are followed, expect more physiological research in the future.
When it came to recommendations, the theme was research. The first sentence in the Conclusions and Recommendations section was “Scientific research on ME/CFS is needed to serve patients better”.
The Committee recommended that the Minister of Health, Welfare and Sport commission “a long-term, substantial research programme on ME/CFS“.
We get some good research out of Holland now – see a recent Dutch paper on thyroid dysfunction that is making waves – but if Dutch funders follow the Health Council’s lead (as they should), we should expect more in the future.
A Serious Disease
It became clear the Committee was on a mission to convince its readers that chronic fatigue syndrome (ME/CFS) is a “serious chronic disease” which substantially limits functioning. One recommendation was that the government institute health care provider training which “highlight(s) the serious, chronic, multisystem (nature of the) disease ME/CFS.”
Note to Dutch Insurers
The Committee also called on insurance and health care providers to recognize that “ME/CFS is a serious disease that is accompanied by substantial functional limitations”. No longer should providers be allowed to compel ME/CFS patients to undertake CBT/GET or face losing support. That directive, if implemented, could save many ME/CFS patients from getting worse on GET.
The Beginning of the End of CBT/GET?
Is this the beginning of the end of CBT/GET’s dominance? Probably not. Until federal funders support other treatment efforts, and as long as the U.K. remains committed to these therapies, they’re probably going to remain dominant in the treatment literature.
Still, it seems to be getting harder, not easier, for the CBT/GET crowd. CBT/GET has been hit by problems with the PACE trial, the lackluster performance of the FITNET Trial, and the IOM and the AHRQ reports, which came to the conclusion that more research, not more CBT/GET, is what’s needed.
Even in the best of cases, CBT/GET studies are not impressing. When the AHRQ panel included Oxford criteria studies in their analysis of CBT/GET studies – studies which almost surely contained depressed patients who would benefit from exercise and psychological therapies – they were able to provide only a mild recommendation for CBT/GET. After the Oxford Criteria studies were removed, the federal panel couldn’t provide any recommendations for CBT/GET. Similarly, note how ineffective the remarkable attempts to puff up the PACE trial results were. Even with them the trial failed to produce an impressive result.
The UK, though, does not appear to be done with CBT/GET. It recently funded the largest randomized control CBT trial ever for adolescents (n=734) and CBT studies continue to pour out of it and the Netherlands. Producing these studies has become an industry of its own but hopefully funders are tiring of throwing tens of millions of dollars at a treatment protocol which generally produces mediocre results. Surely we know enough about what CBT/GET can and cannot do by now.
This surprising report from the U.K.’s longtime partner in the CBT/GET effort will make some in the U.K. think again. CBT is not done in the Netherlands by any means, but if funders follow the report’s recommendations, we should see much more physiological research and much less behavioral research in the future. Dutch advocates will surely be watching closely.
Thanks Cort. Finally some change. Thanks to the US as well!!
At last ! In my part of the country (southern England) we have one clinic and the only treatment available for Chronic Fatigue is CBT. If that fails to help you then you’re on your own. As far as I know there are no medications on offer, my doctor constantly tells me that there is no current treatment. There are many,many people in the UK for whom CBT doesn’t help. Let’s hope that this Dutch research starts the ball rolling in a different direction and gives hope for those of us who have struggled for many years on our own 🙂
One reason that’s the way it is is that the UK has put a lot of money – tens of millions of dollars – into CBT while putting virtually nothing into non-behavioral treatments. You can’t get other treatments approved without studies.
“Is this the beginning of the end of CBT/GET’s dominance?”
Yes, I believe so. The Netherlands seem to have opted for the silent way out:
“All therapies are insufficient including CBT/GET. None of them improve the underlying disease. More research is needed.”
Can be interpreted as “We tried our best effort with CBT/GET. Don’t blame us. It’s as insufficient as everything else. There is debate on whether we should continue to support CBT/GET. Let us take no clear stance, we’ll leave it as an option but it should no more be forced.”
Can be interpreted as “Let us not start a trench war between pro and contra CBT/GET. Let us not plea guilty, we are responsible now you see? Allow both researchers and patients to choose to stick with it or walk silently away. No one will ever blame we continued pushing it after it became clear that the latest research on CBT/GET required unicorn science and scoffing at the worlds largest statistical organization. Let the British clean up their own mess. After all, it’s not “us” the Dutch that transformed weak research and evidence in malignant fraud.
IMO the UK is on its own and will take the full hit on its own when this piece of **** finally explodes in their face. For UK patients that’s an unfortunate situation.
For the UK government it is not. It is after all the same government that asked researchers TO LOWER the outcome of maximum recommended daily alcohol consumption (by fiddling with statistics!) as the result (of the study the government ordered) did not please them. It’s a documented case of fraud I read. Unfortunately I can’t find a link back as the Internet is flooded with those new “scientific” guidelines so links to the fraud are hard to find.
Yes they took the silent way out, nicely said 🙂
“We tried our best effort with CBT/GET. Don’t blame us. It’s as insufficient as everything else. There is debate on whether we should continue to support CBT/GET. Let us take no clear stance, we’ll leave it as an option but it should no more be forced.”
This is essentially Healthwise’s position in the US. Rejecting PACE, but still providing GET/CBT as an option for doctors who want to use it.
Healthwise provides medical content for many large health organizations in the US, including Kaiser Permanente with 13 million members.
Many CBT/GET researchers and practitioners are *very* much aware of the devastating effects their “therapy” has on a large portion of their patients.
So far they were safe: the strongest evidence of their therapy being dangerous was based one questionnaires. But Lipkin and Naviaux provided very convincing biological markers; you don’t end up in Science or Nature just like that. These magazines are the absolute top in sciences. Other researchers have added more good quality biomarkers.
Now the US ups biological research funding. Some of the approved projects will evaluate biological markers before, during and after exercise.
The prospect that the devastating effect of CBT/GET on a large portion of patients will soon be objectively quantified as very severe is getting real. Many in the CBT/GET crowd are aware of how bad those markers could turn out for them. There is a real change that no other conclusion will be possible then that the CBT/GET researchers and practitioners must have been *very* much aware that their therapy was unsafe.
That would raise two questions:
* How far did researchers go to “alter” research outcomes and did practitioners go to “alter” efficacy and safety reports many of them were required to make?
* How far did some push the lines to force patients they clearly knew got worse a lot from their therapy to push them even deeper? Did they cross “only” ethical lines or also legal ones?
Questions will be asked in parliaments and congresses. Audits will be done. Last one at the party will take the biggest hit. More and more will decide to take a run for it.
well said
You missed the part where they redefine ME as SEID, turning the whole report into something ugly. Btw note that this is an advice, nothing has changed yet.
Yes, we’ll see how the Netherlands responds. I know a lot of people don’t like SEID but I’m fine with it. Even though ME sounds better we don’t a lot of evidence for myalgic encephalomyelitis; until we do a more descriptive name like SEID is OK for me.
Speak for yourself. Systemic exertion intolerance disease describes this disease perfectly and moves us away from the ugly history of both ME and CFS.
Even if it was the worst name ever surely you understand that the fact they won’t subject people to damaging treatments any more is much more important than how they call it.
Hi cort,
I admire your blog but on this you are not well informed.
I am from Belgium, a country aside the netherlands and we speak also Dutsh (so the title is totally wrong) but here nothing has changed and it is also in the netherlands not all so good now, (if you can translate it with google translate) you see that hardly a physician is in the commité. it is from Frank Twisk, a suferer and an activist with his own blog in the netherlands. And Belgium is not the netherlands. I am 95 to 99% bedridden, totally alone and two services did not want to help me with food and cleaning. they said things like I had to go to a psychologist (as if I could leave my house and had then nothing better to do with the energy)and that I get my symptoms from reading on the internet and stuff like that!
And also with the netherlands, first see and then believe. they even did not say how much money they would spend on ME/cfs or SEID (from where comes SEID) of a sudden the hell, yes, it was a short time possibilility to name it like that in the US, just like NEIS (neuro endocrine immune dysfunction sydrome) a long time ago in the US.)…
http://www.hetalternatief.org/Gezondheidsraad%20Politiek%20Advies%20ME%20CVS%20SEID%202018%201442.htm
site from frank twisk from the netherlands, not from dutsh speaking belgium
Belgium spend millons also on cbt and get and there was a big evaluation of its results long time ago and it had ofcourse a negative outcome but they still keep beezy and going on. Taxpayers pay for nothing!yes, for making people more ill. they can simply throuw the money out of the window!
I’ve always had trouble with what’s Holland, the Netherlands and who the Dutch are! Someone sent me this link, though. It’s quite interesting 🙂 – https://www.tripsavvy.com/dutch-the-netherlands-and-holland-1456293
For you and the other patients there it will take time. The problem I assume is no or few doctors.
This report – from a federal advisory group – did strongly recommend research though – and that’s a good thing It’s up to the Netherlands now to decide what to do. As I noted a pretty big industry has been built up around CBT/GET and turning in another direction will not be easy. However, if this report does what the IOM report did for ME/CFS here then it will have done its job. It’ll be interesting to see how much things change over the next couple of years. Will we see less CBT/GET? I imagine that we will.
Cort, your title is not totally wrong. It is oke.
I don’t expect a lot of funding to go to real ME research in the Netherlands anytime soon. I’d like to, but it won’t happen.
But if this advice goes through, it’ll be the start of stopping force feeding CBT/GET to ME patients and crippling patients as a side effect. And it’ll start starving government funding for unicorn CBT/GET “science” in the Netherlands.
That should help dry up worldwide government funding for it pretty good, safe probably for the UK government that is in it to deep. The only other likely source of funding would be from private insurers.
Standing alone, they soon won’t be able to keep up appearances in light of the very clear “flaws” of the Pace “research” and loose worldwide support. Fewer and fewer will be willing to be associated with this toxic farce. Even Simon Wesley distanced himself from it a few years ago. Best thing he ever did in his entire career when it comes to ME ;-).
Baby steps it are, but needed ones. Hope you can hang on some little longer. Dawn is slowly coming.
and SEID is not the problem but it is suddenly a totaly other desease! and ME/CFS can be myalgic encefalomyelitis or myalgic encefalopathie. And what about the 100 definitions about cfs/me?
I know Frank’s done some great stuff but I have to disagree. The SEID criteria require PEM and are very close to the London M.E. criteria and were put together by Ron Davis, Dr. Bateman and other ME/CFS experts.
How could the criteria be bad given that? I think they’re a good criteria for this time and place.
I totally agree. The SEID criteria are the best for this moment. I don’t understand the protest from ME patiënts. You can even make these criteria more objective with tests.
When my son became ill with FM he was treated byDr Michael Maes a neuropsychiatrist who was working in belgium in his MCare 4U clinics (molecular psychiatry)and was also teaching at the university of Maastricht in the Netherlands.He was also connected with Vanderbilt University, Nashville
He claimed that many neurological deseases,CVS,FM etc were all connected with inflammation.
Then he received the “Kakadokus” price in the Netherlands t.i
a price for frauds : he was riduculized and chased from the university.He took his revenge: he went to Thailand to work and do research and now he is one of the leading autors in his field
The dutch medical society did not repent and I feel it was a very sad thing for his patients.
It is sad. Dr Maes was way ahead of his time with depression, ME/cFS and others and he got whacked for it. What a shame!
Wikipedia said IoM changed their name to National Academy of Medicine (NAM) https://en.wikipedia.org/wiki/National_Academy_of_Medicine, not Health and Medicine Division. Did they have yet another name change?