News from Belgium

[ME/CFS Skeptic]

So there's some news from Belgium.

The government has extended its ME/CFS-convention until 2020. In parliament our Minister of Health said the assessment report of GET/CBT rehabilitation has shown to be highly successful. Patients however were not allowed to see the report...

The new convention does have some considerable changes compared to the previous one. While CBT is still central and reimbursed by the government, GET is acknowledged to be misguided. Instead the new agreement proposes physical activity within the patient’s personal limits.

So in short it seems like CBT-proponents have ditched GET to save CBT. So far only one center has signed up for the agreement: the university hospital at Leuven. They are known to favor a psychosocial view of ME/CFS (think Van Houdenhove, Luyten, Kempke etc.)

Although treatment should not be seen as curative, it’s still aimed at rehabilitation. The minister even claims that “work resumption difficulties are an important disease-maintaining factor….”

Regarding diagnostic criteria, the minister suggests following the CDC in using the IOM-criteria as these put more emphasis on post-exertional malaise.

In my view it seems that the minister has followed some of the advise of the Dutch Health Council. The new agreement takes off the (most controversial) edges of GET/CBT rehabilitation, but maintains its essence. The date 2020 (previous conventions were prolonged for 4 instead of 2 years) means they are looking forward to the NICE guideline before making any substantial changes.

The minister’s speech (In Dutch) can be read on MEgids: https://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-2085.html

Note: I've used the term 'ME/CFS', though the minister and all government agencies still use the singular term 'CFS'.

 

[Tijs]

Very good summary @Michiel Tack

 

[Esther12]

Thanks for the summary. Interesting.

Although treatment should not be seen as curative, it’s still aimed at rehabilitation. The minister even claims that “work resumption difficulties are an important disease-maintaining factor….”

It would be interesting to know how he she justified that claim.

 

[ME/CFS Skeptic]

It would be interesting to know how he justified that claim.

I think that information will be in the assessment report from the University of Leuven that I can’t seem to get my hands on. The minister (it’s a she by the way) claims the report is available online on the government website. But I and the people from ME-gids can’t find it. The patient organization I collaborate with, the Wake Up Call Beweging, has criticized the successful results of GET/CBT rehabilitation and pointed out that these are not in line with the scientific literature. In our correspondence with the minister we asked for the full report to be published so that it could be scrutinized before making any decision to extend the convention. Apparently that request has been ignored. There are two other ME/CFS patient organizations in Belgium but so far they have not said to have access to the full report. I’ve emailed them to ask what they know about it. I suspect the full assessment report will be published in the coming days and we’ll be able to tell something more about the claims of GET/CBT being effective and “work resumption difficulties” being “an important disease-maintaining factor….”

The last ME/CFS assessment report (2006) is the famous Belgian report that showed GET/CBT changed subjective perceptions of symptoms but not the actual physical capacity of patients. Employment status actually decreased. There was a ME/CFS professor claiming positive results for GET/CBT in the media before that report was published – claims which turn out to be false in retrospect. I’m kind of suspicious that something similar is happening now… But we’ll see. I’ll let you know when I’ve got hold of the full report and data.

I think the Belgian situation gives some clues on the direction ME/CFS guidelines might take in other countries. It seems to be more difficult to defend GET than CBT – The AHRQ and Dutch Health Council have both said there is no evidence for GET, while leaving some room for CBT. It also seems that case definitions without the requirement of post-exertional malaise are considered inadequate.

 

[Tijs]

It would be interesting to know how he justified that claim.

In parliament she already claimed that more than 90% of patients who have the perspective to be able to resume their work after their capacity is restored are also at work at the end of treatment (and that they are guided to it).
But it should be noted that on the website of the only CFS center there is a disclaimer that warns patients that they are not giving certificates for incapacity for work and all other stuff like that. So I wonder how they guide almost all patients to return to work...

The last ME/CFS assessment report (2006) is the famous Belgian report that showed GET/CBT changed subjective perceptions of symptoms but not the actual physical capacity of patients. Employment status actually decreased.

Since they don't do exercise testing anymore (I'm not 100% sure), I wonder which objective measures they used this time to evaluate the treatment. Next to the 90%-rate, she also claimed that 75% of patients end the treatment traject (15 sessions of CBT) with an improvement in general health and functioning. So I wonder how long the treatment period was and if they again did a long-term follow-up...

 

[Snow Leopard]

Maggie De Block, the minister mentioned, no longer holds the position of Minister of Social Affairs and Health, according to Wikipedia.

Google translate quote:

Then I have some statistical data regarding the operation of the center. That report can also be consulted on the RIZIV website. Between March 2015 and April 2018, there were 1 600 registrations. In 700 patients, the diagnosis of CFS was made on the basis of the multidisciplinary diagnostic examination. This means that many people suspect that they have CFS, while that does not appear to be the case. They probably have other issues. One hundred fifty patients have followed the full course of fifteen sessions of cognitive behavioral therapy, 250 patients are still working on it. Fifty patients have terminated the process early. Forty patients did not accept the offer to follow that therapy.

The quantitative and qualitative results of the UZ Leuven center show a favorable evolution during and after the follow-up of CFS patients who follow cognitive behavioral therapy, for example in the field of fatigue scores and comorbid complaints. These are in line with previous findings. The majority of patients were also satisfied with the guidance and had a positive experience. Naturally, this therapy can never be imposed or required. One can also not pretend that there will be a cure for CFS by this therapy.

Work resilience problems are an important disease-sustaining factor. The worry is working on the people. More than 90% of patients who have the perspective to be able to resume their work after their capacity is restored are also at work at the end of treatment. It must also be said that they are escorted there.

It is therefore important to reach patients who are still working or have not been home for too long.

The general conclusion is that more than 75% of patients end the treatment program with a positive result, as shown by the improvement of general health and the decrease in symptoms, a healthier daily routine, improved functioning, an increase in the number of hours that one can be active one day and the decrease of the impact of the emotional load or return to work.

For me, regardless of the work that has happened, it is encouraging that more and more scientific research is being done, because people have not been interested in this for a long time. They were long in the dark when it came to the causes.

 

[ME/CFS Skeptic]

Since they don't do exercise testing anymore (I'm not 100% sure), I wonder which objective measures they used this time to evaluate the treatment.

Not sure either, but after the previous report, they concluded that exercise capacity measures are not "relevant" for evaluating treatment effects because these did not show improvement...

One hundred fifty patients have followed the full course of fifteen sessions of cognitive behavioral therapy, 250 patients are still working on it. Fifty patients have terminated the process early. Forty patients did not accept the offer to follow that therapy.

So 50 patients dropped out and 40 did not want the treatment. That's 90 patients in total, a large amount compared to the 150 who did complete the treatment.

the minister mentioned, no longer holds the position of Minister of Social Affairs and Health, according to Wikipedia.

Wikipedia is wrong, she still is. There has been some political turmoil in Belgium. As one political party stepped out of the government De Block enlarged her portfolio by taken over the secretary of Asylum and Migration but she maintained the ministry of health. Recently the government has resigned but the ministers are still in charge until there is a solution to the political crisis (such as new elections). I think the English term for this is a "caretaker government". Sorry for the complex explanation - this is the land of surrealism.


EDIT: deleted the figure of 60% (90/150) which is a bit misleading.

 

[alex3619]

I would want to know what objective outcome measures show CBT is effective. I have no big issues with classical CBT, my big issues are with ME-centric CBT. I think classical CBT might help some milder patients cope better. Symptom denial CBT is something else entirely. What do we know about which is used, in general, in Belgium?

 

[ME/CFS Skeptic]

What do we know about which is used, in general, in Belgium?

It's the bad type. The previous guideline explicitly said that CBT provided to ME/CFS patients should be following the model of Bleijenberg and Chalder. The government would only reimburse this model because it's 'evidence based'. Do not have information about the new guideline yet.

 

[Tijs]

Not sure either, but after the previous report, they concluded that exercise capacity measures are not "relevant" for evaluating treatment effects because these did not show improvement...

Yes that was indeed a very wrong paper. But the bad results (in the famous report) were attributed to the fact that patients were on average already too long sick so the 'treatment' was too late to get positive results. So in my opinion, they had to do the same evaluation with physical capacity testing to proof their claims.

So 50 patients dropped out and 40 did not want the treatment. That's 90 patients in total, a large amount compared to the 150 who did complete the treatment.

Yes that's indeed a very large amount. But reading those figures again, I noticed that a large amount of patients are missing in her overview.
So 1600 patients thought they had CFS and 700 patients get a diagnosis of CFS
She said 150 patients had followed CBT, 50 patients dropped out during treatment, 40 patients did not want to start treatment and 250 patients are currently still in treatment. So that means that 210 patients are missing... What happened to them?

 

[ME/CFS Skeptic]

that means that 210 patients are missing... What happened to them?

Good point. Either these patients ran away after getting their CFS diagnosis (and the BPS explanation that goes with it) but before being offered treatment. Or the CFS centre only offered GET/CBT to a selected group of CFS patients - the group where they think the treament would be most beneficial.

 

[Snow Leopard]

Not sure either, but after the previous report, they concluded that exercise capacity measures are not "relevant" for evaluating treatment effects because these did not show improvement...

This is true, simply because deconditioning is not a perpetuating factor for CFS, so increasing exercise capacity is not necessary, nor effective.

 

[eva luna]

@Michiel Tack Do you really believe the policy in the UZ Leuven has changed?

I don't get why the speech of the Minister (new criteria, no GET anymore) doesn't fit with the website of the UZLeuven itself (cf https://www.uzleuven.be/nl/fysische-geneeskunde-en-revalidatie/cvs, update 19/06/2018), where I read the same stuff I got myself more than 10 years ago...

The Minister was giving a reply in the Parliament about a evaluation report of the UZLeuven, after a pilot phase, before the extension of the convention. So she was talking about what was happening now and in the recent past in the excellence center, I guess.

What I see, is a real gap between politics and reality. I don't have any inside information about what is happening in the center in the UZLeuven, but I don't have the feeling anything has changed.

 

[ME/CFS Skeptic]

I don't get why the speech of the Minister (new criteria, no GET anymore) doesn't fit with the website of the UZLeuven itself

True, but I think the minister was just making an announcement. We haven't seen the new convention or the assessment report from Leuven. So everything is still in an early phase I guess. So it's not that strange that the website of UZ Leuven has't been updated yet (I hope it will be asap).

I think we just have to wait and see...

 

[eva luna]

we just have to wait and see...

Yeah, let's hope this is a reflection of true Belgian surrealism: announcing a new policy while assessing and extending an existing convention.

Or is it a new convention, who knows, hard to tell without any publication open for the public!

 

[ME/CFS Skeptic]

The full assessment report about the ME/CVS center in Leuven is now available online (In Dutch only, no English summary): https://www.riziv.fgov.be/SiteColle...MnNRacaNqviRf9eP1D67XeTIbiV2yavQYOhx-HEiwSwr4

My first impression: as expected they only gave CBT to a subgroup of ME/CFS patients and improvements were very small (probably not larger than natural progression where an estimated 40% reports improvement).

The report also gives an overview of ME/CFS and international developments. Here I see some positive changes: they argue that the oxford criteria are flawed and that GET should no longer be advised. They want to replace it with exercise within personal limits. They also acknowledge biomedical research into ME/CFS and the shift that is occuring towards more biomedical research in other countries. Coming from the strongest BPS-stronghold in Belgium, I see this as a positive development.

Hope to come up with a summary of the report in the coming days.

 

[Liessa]

Still having some issues reading despite Dutch being my first language.. But I saw somewhere in the conclusion (p147):

Niemand pretendeert ook dat de CGT de CVS patiënten zal genezen.

Noone pretends/claims that CBT will cure the CFS patients.

In combinition with the shift from GET to "activity within the patients limits" these seem like important steps in a positive direction.

 

[Dolphin]

Still having some issues reading despite Dutch being my first language.. But I saw somewhere in the conclusion (p147):

Niemand pretendeert ook dat de CGT de CVS patiënten zal genezen.

Noone pretends/claims that CBT will cure the CFS patients.

In combinition with the shift from GET to "activity within the patients limits" these seem like important steps in a positive direction.

Many of the CBT promoters in the Netherlands say their form of CBT involves encouraging patients to see themselves as no longer having CFS so I find the claim that “no one pretends/claims that CBT will cure the CFS patients” very questionable.

 

[rvallee]

Many of the CBT promoters in the Netherlands say their form of CBT involves encouraging patients to see themselves as no longer having CFS so I find the claim that “no one pretends/claims that CBT will cure the CFS patients” very questionable.

Definitely an odd statement considering this is literally how this whole nonsense began, with the Wessely gang arguing that in their opinion, CBT is the cure for this "condition", then spending years failing to show evidence while continuing to claim that they just need more studies but also the evidence is already convincing even though the claims that it is "the" treatment were made before trials were done.

Since then it's been roughly the exact same study replicated (and failing) dozens of times over. Every one of those studies is in the framing of "is CBT a treatment for CFS?" and aiming for full recovery (aka a freaking cure). The only exceptions to this pattern are when they use modified pseudoscience like LP or shopping bags or whatever.

As part of the PACE media blitz this is what Sharpe said, that it is a cure for those who want it (but it is also not necessarily so, it is both, we report, you decide, don't ask me, I just work here, also give me awards for curing those poor helpless idiots confused by their own bodily senses). That's why those stories of recovery are so hyped, they do claim it is a cure, that's literally the whole point.

So is this deceitful? Or incompetent? Or both?

 

[Liessa]

So is this deceitful? Or incompetent? Or both?

I suspect it's a mix of confusion, saving face, and "we can't just do nothing, can we?". It's really hard for people to change course 180 degrees, it'd cause a lot of cognitive dissonance. And even if they would now be convinced the BPS approach is worthless, it's still a hard sell. So course correction rather than U-turn.
Still some important aspects got addressed: no GET, and individual limits on the amount of activity that is involved with the CBT program.


Something I noticed in my very quick and not too clear-minded skim:
There were references to various criteria. They mention SEID and how US and Netherlands adopted those and perhaps they should follow suit, but they also mention something about how patients in a CFS center - in Leuven?? have been checked against other criteria besides Fukuda: the ICC, or so I think, they call it the 2010 revised Canadian criteria. I thought it interesting that they are actually considering/investigating how the patients relate to these.

The list of references is quite interesting too (barely any Dutch needed for this part as publication titles are mostly in English).
Obviously there is a LOT of BPS on there - the British and Dutch usual suspects - but also several articles from the Health Psychology special edition on PACE, and a handful of notable biomedical studies. Obviously I would have preferred the balance shifted far more to the latter, but it does sound like progress.