News from Belgium

Sorry for the long delay. Here’s a short summary of the Belgian assessment report.

Part I

The first 60 pages give an overview of international developments and there are a lot of good things mentioned. The report says ME/CFS is a serious condition (can be more disabling than MS), recognized by the WHO as a disorder of the CNS and nowhere to be found in the DSM 5. It acknowledges the trend towards biomedical research in the US, Australia and Norway. It explains why the Oxford criteria are too broad and no longer accepted in ME/CFS research. And it explains that GET should no longer be advised to patients with ME/CFS as this can be harmful. Instead exercise within personal limits is proposed.

There’s also a section on PACE-gate where most of the problems with the PACE-trial are explained, even though they call it an “emotional and dogmatic discussion” (with lots of cartesian dualism) What’s interesting is that the authors think the PACE-trial has embarrassed the BPS model and research into CBT. The say that:

“PACE-gate has unintentionally and unjustifiably done a lot of damage to the credibility of CBT and GET as possible therapeutic options in CFS/ME and especially to the multidisciplinary, biopsychosocial research, diagnosis and treatment in patients with CFS/ME.” ​

They then go on to defend the BPS model and indicate it hasn’t been used in its normal meaning in ME/CFS.

“In the complex world of CFS/ME there has been a confusion of speech, whereby ‘BPS’ as an umbrella term came to mean a psychogenic/psychosocial etiology and a number of specific models that suggested a psychosocial/behavioural hypothesis of pathology." ​

One of these models, the Dutch model of CBT – is explicitly criticized in the report.

"The Dutch "deconditioning model" that is used in ME/CFS focuses very much on adjusting cognitions and behaviour and takes too little account of the specific situation of the CFS/ME patient (i.e., it is assumed that the symptoms are maintained by ineffective thoughts such as "I am tired and if I make an effort my fatigue increases, so I will just rest. According to this model this would lead to deconditioning and an increased attentional bias to physical complaints). To rebuild the physical condition there was, among other things, a forced build-up of activity, without taking into account PEM which is central to CFS/ME patients that led to a relapse, unless it was used on patients with a depression or idiopathic fatigue. The Dutch model was never used in Belgium within the framework of the CFS convention.”​

They also criticize the idea that CBT can cure ME/CFS and say this assumption has never been used in their ME/CFS centre. As an alternative they propose the stress adaptation model as this model is more in agreement with biomedical findings. It assumes that the stress response in ME/CFS stress is defect and that this can explain immune and endocrine abnormalities. In this stress adapation model psychosocial factors are not assumed to be driving symptoms but seen as merely ‘modulators’. You can learn more about it on the MEpedia page of Boudewijn Van Houdenhove – the former head of the CFS centre at Leuven who has promoted this theory. It places a lot of emphasize on childhood trauma (many reference s to Heim et al.), perfectionism and the idea that overdoing it leads to a “allostatic crash” that cannot easily be restored.

The report acknowledges some biomedical abnormalities in ME/CFS such as elevated cytokines, reduced blood volume and metabolic defects (there’s even reference to the Nakatomi et al. 2014 PET study). But they say that these are not specific to ME/CFS and found in other diseases as well. There hasn’t been a biomarker or pathological finding that is unique to ME/CFS and according to the authors this is partly because ME/CFS is a very heterogeneous condition.

A section also discusses the ICC, of which they are not a fan:

“the presumed common underlying pathogenetic/pathophysiological mechanisms do not justify the proposed categories.”
​

They argue that the ICC places too much emphasis on an infectious hypothesis. One section is particularly interesting, so I translated it in full:

“It is also important to emphasize that finding a certain degree of central inflammatory parameters, as is the case with ME/CFS, does not always indicate neuroinflammation. The term "Neuroinflammation" is currently reserved when 4 classical characteristics are present: (i) increase in proinflammatory cytokines (ii) microglial activation (iii) infiltration of peripheral leukocytes (iv) secondary neurodegeneration.”​

They argue that the last two have not been demonstrated in ME/CFS. The authors seem to prefer the IOM-criteria in diagnosing ME/CFS, even though they acknowledge that these are not intended for research.

PART II

So that was the long introduction, now on to the actual data.

Even though the authors (mostly psychiatrists and psychologists) acknowledge the flaws with GET, they still defend CBT. Although they say it should not aim at full recovery, they call it rehabilitation (with the aim of restoring enough of the patients’ health so they can go back to work). This approach is now being evaluated in the assessment report. Because a government agency (RIZIV/INAMI) was paying for the treatment and diagnostic investigation, it wanted a 4-year assessment report to see how things are going.

The last time such a report was published was in 2006. This is the famous Belgian report that showed that employment decreased and disability payments increased after GET/CBT. Instead of realizing that these treatments are inappropriate for ME/CFS patients, it was argued that some small adjustments would make things ok and bring the results in agreement with those reported in scientific studies.

GET and CBT would no longer be offered in group format (which was the case before 2006) and primary care became integrated in the treatment of ME/CFS. The patient should get an individualized treatment from a trained psychologist (CBT) or physiotherapist (GET) in his neighborhood. The CFS centre is only there to make the diagnosis and coordinate things. Most CFS-centres in Belgium did not agree with this approach (they didn’t think it was realistic or they wanted to treat the patients in their centre themselves). So only one CFS-centre signed up for the agreement: the largest one at Leuven. They focus mostly on CBT.

The data the CFS-centre at Leuven offers in this report is a bit confusing because they do not simply show the results of patients who have been through all the assessments and finished the treatment. Data of patients who are still in treatment are added as well, which makes it hard to compare outcomes from baseline, assessment 1, 2 or at the end of treatment. In the graph I will show below, you often see a large drop in the number of patients who provided the final outcome measurement. These do not all present drop-outs but simply patients who are still in treatment and haven’t reached the final outcome measurement yet.

Despite that, the attrition rate was in fact quite large. 12% of patients to whom the treatment was offered, refused. Another 13% dropped out during treatment. It also seems that CBT treatment was not offered to all patients who’ve received a ME/CFS (Fukuda-criteria) diagnosis at Leuven (see discussion in posts above).

I have tried to summarize the main data in the graph below (SD is the standard deviation, n the number of patients providing data). While there was some improvement in fatigue, the change in physical function is probably not clinically significant. After 15 sessions of CBT, the patients still scores less than 60, which we know from PACE-gate is close to the mean score for patients with Class II congestive heart failure. Scores for depression and positive/negative affect did not show a significant change over time. Other questionnaires did show some improvement but as there was no control group we cannot know if this was due to CBT.

​

Data about employment are also given, but here they take a different approach and focus only on those who have completed the full treatment (147 patients). The data is a bit messy and they do not give standard deviations or p-values.

​

It seems that some patients who were not working at baseline, did go into part-time work. But at the same time the number of patient who were working full time halved, as many also switched to part-time work. In all, it seems that there were some minor improvements in work resumption, but we cannot know if this was statistically significant over time. There was also no control group, so any improvement could be due to being diagnosed or receiving medical care in a specialist centre, not necessarily CBT.

In parliament the minister said “work resumption difficulties are an important disease-maintaining factor”. This refers to the following. The doctors at Leuven gave each of their patients a label +, +/- or – indicating how easy it was for the patient to resume work if their health improved. Then they showed that the patients receiving a - at baseline showed less improvements after treatment. Not exactly cutting edge science I would say… In a similar fashion they argue that patients learned to avoid boom and bust cycles, because the (self-reported) differences in activity between a good and a bad day, decreased.

According to the authors of the report, the results are good because most patients indicate their health has improved (76%) or that their activity level increased (66%). They have asked to extend the convention, even though they caution CBT should be tailored to the individual and is not necessarily useful for every ME/CFS patient.

THE END

 

It seems strange that they expect the biological research to be perfect while overlooking all the flaws in the psychological research, namely lack of specificity, sensitivity (when related to things like childhood trauma or allostatic load), lack of objective evidence of improvement etc.

Seems they want to have their cake after eating it.

 

Thanks so much for that @Michiel Tack - sounds like a pretty annoying report overall, but that the scandal around PACE may have forced in a few hints of reasons for positivity.

I wonder where the Minister got their interpretation ("highly successful") of the report from? Could it be that the authors put positive spin on the findings in a summary? Or civil servants? Or were you being more measured in your summary than they were in their report?

 

As a general point, I think what has happened in Belgium shows how hard it can be to remove rehabilitative approaches for ME/CFS from a (public) health system when they become embedded in the system. The 2006 audit showed poor results but all that happened was a tweak. Seeing what has happened in several European countries put me off lobbying for services here as I didn’t want CBT/GET/rehab to become embedded here. It’s not necessarily an easy message to sell.

Just to add: I don’t like CBT/GET/rehab proponents becoming part of the establishment.

 

Well I wonder whose fault that is?

 

Yes this summary includes my opinion of it (for example that a SF-36 physical function lower than 60 is pretty bad) and I focused on things that could be interesting for foreigners following the debate from afar. The report gives readers the impression that the results were good (modest, but good). The minister seems to add some more optimism to that, probably because she was justifying her decision to extend the convention in parliament. She seems to focus, not on the questionnaires (which have p-values and can be compared to other results), but on single questions that asked if patients felt that their health improved or if they could do more activities.

That's an interesting discussion. In Belgium we've now experienced a bit of both situations: there used to be multiple CFS-centres supported by the government, but with the agreement of 2014 (which is the one being evaluated in this report) there was only 1 specialist centre left, at Leuven. I personally preferred the first situation, where you had an overview of what was happening. You could focus criticism to a central authority, which makes it easier to make changes. Today GET/CBT are still used all over the country but we get no oversight of that. If we want to criticize this model of care we have to approach each centre, each hospital which is practically impossible.

 

OK but wasn’t there some central decision a number of years ago that ME/CFS patients around the country could have CBT and exercise therapy with a physiotherapist funded? This was despite the audit of the CFS centers not finding good results. So there was a central policy as I recall and it was based around CBT/GET/rehab.

Also, ministers don't promote CBT/GET/rehab here; they haven't become so much part of the establishment that the establishment feels the need to support them. For these sorts of reasons, I'm not inclined to lobby for services here at this time.

 

Forgot to mention: one of the Belgian ME/CFS patient organizations (Wake Up Call Beweging) has published a detailed analysis of this report's findings. It can be read here (hope google translate helps): https://www.me-gids.net/files/documents/AnalyseEindverslagMDC-CVS.pdf

 

In Belgium, the Supreme Health Council has published its report on ME/CFS (available here: https://www.health.belgium.be/nl/advies-9508-chronisch-vermoeidheidssyndroom).

No patients were part of the committee but patient organisations were consulted and could formulate written feedback on a draft of the report (their critique of the final version of the report is added as an addendum).

The report says good things and bad things. Its conclusion is similar to the assessment report (discussed above in this thread) of the ME/CFS centre in Leuven. It no longer recommends GET but a form pacing instead, and pleads for more biomedical research. It says that PEM is now seen as an important characteristic of ME/CFS, rather than just fatigue and it advises the use of the IOM criteria. It makes a plea for the biopsychosocial model and that this should not be reduced to the cognitive-behavioural model etc.

A summary (in Dutch) is available on ME-gids: https://www.me-gids.net/module-ME_CVS_docs-viewpub-tid-1-pid-2393.html

 

On page 1 it argues that a BPS model is highly desirable, but fails to actually argue the point. Nevermind that the current paradigm is exactly that and is entirely disastrous so why would it be desirable? They can't help make this about themselves in the end, what they want to do, not what is actually needed. What it describes right after in terms of what this would look like has nothing to do with BPS, it just describes what non-discriminatory standard medical care would be like, which does not need or make much use of the BPS ideology.

Many many uses of "disorder", clearly framing it as psychological. No, it makes no difference to have a few lines about not meaning psychogenic when you mean exactly that. They know we can read and understand words, right? Right?!

Odd reference to guidelines being under revision in the Netherlands, in the same sentence it mentions NICE in the UK. I am not aware of those efforts other than Per Fink's efforts at pushing things in the wrong direction.

The working group was formed of: medicine (?, means GPs, I guess), psychology, psychiatry, rehabilitation and physical therapy. So exactly the current failed paradigm, the very people who have failed to do anything. Again with the infinite tolerance for failure. Hence no surprise this is a step in no particular direction, they asked the biased people to evaluate their own work, again.

Very clear obsession with leaving this to psychiatry. Unexplained. It's just what they want. It's almost like a visceral need.

Loooong defense of the BPS ideology, completely unrelated to the issue. Very unprofessional, this is not a forum to evangelize about one's pet belief system.

Love the belittling of the infectious trigger because it is largely retrospective (nevermind that it's by choice by systematically rejecting studies to do it in time). Somehow not a problem for most BPS research, which is largely retrospective. Hey, it's not as if anyone had ever heard of mononucleosis. Oh, they have? Odd. Although at least the admit the same about BPS research but somehow the BPS ideology must remain in place because, well, they like it and want it.

Ugh. PACE was not controlled. It's literally in the damn sub-title. Pay attention.

Disappointing overall. Not all bad, but that's an extremely low bar. It's mostly fan fiction about the BPS ideology, everything discussing ME can be summed up as: we still know nothing. Obviously because of the BPS ideology but they can't recognize the problem, and thus can't fix it.

The problem was, yet again, put in the wrong hands and these people abused the opportunity to promote and evangelize their ideology, almost half of the document is basically fluffing the BPS ideology unrelated to the actual issue. They don't get the issues, what's important or even what's at stake. They took a strictly physician-centered perspective and stayed there. It's very similar in thinking to the BACME 360 spin, ultimately it's the same old running around in circles.

Clearly gearing up to "replace" GET with GAT, or however they want to call it. At some point explicitly states that psychotherapy is the first thing that should be tried, failed to argue why. It assumes rehabilitating people to get back to work is the only desirable outcome, all others are treated as superfluous.

The exact same old wine in the same old bottle. Slap a new sticker on it and call it a day.

 

I could only read the slightly garbled auto-translate version, but it seemed bad to me, giving clinicians huge leeway to do what they wanted. GET was just replaced with vaguer references to 'psycho-education' and activity management, when we have no reason to think that they're any better. It reads to me like a group of doctors got together and assumed that in their superiority they must be able to help silly CFS patients manage their lives somehow, and that they probably just needed to be able to rely more on their prejudices and clinical judgement in order to improve results. The little bits of good in there could easily just be PR scraps.

I've quoted some bits that I thought were of more interest but probably missed out lots of important stuff too.

A copy of the auto translate on what will probably interest people the most, the treatment section:

This is pretty hilarious: apparently the reason the previous Belgian biopsychosocial CFS centres had been found to be so rubbish when evaluated was... I don't really know. Excuses? They weren't biopsychosocial enough? The dominant culture didn't appreciate the biopsychosocial way of doing things? Should a competent biopsychosocial approach be aware of and be adapted to the society in which it is functioning?

I'm not left feeling enthusiastic about their plans for standardized and coordinated training:

I saw Coyne had raised concerns about the Shields paper they cite here as an impressive illustration of biopsychosocial work: https://www.s4me.info/threads/psychosocial-interventions-and-immune-system-function.15401/

 

And don't want to.

Yes, those poor misunderstood marginalised BPS heroes, denied their due power and praise by those bastard patients who just don't want to get better.

 

Definitely strong "No true biopsychosocial" vibes. It's already built on that, it must be more of that or it's not enough, but despite being strictly BPS, it's clearly not the right BPS, or not enough of it, even though it was definitely built this way by true BPS believers. It somehow both tries to do an elegy to the BPS ideology and gloss over the fact that the current paradigm already is 100% BPS. It can't be more BPS than that, it's already maxed out.

But it's not enough. Apparently. Faith-based evidence. Their spoons can't bend because we're too skeptical, or whatever.

(Just in case, in the translation TCC should be CBT).

 

This report reminds me of ones from the 90s. Often there were a few things that sound as if they could be good, though they were vague and tended to come to nothing, and a lot that sounds bad. Actually, this is worse than a lot of those reports.

It looks similar to what we're seeing elsewhere in that they want to give up on GET as a label so as to distance themselves from embarrassing stuff, but it doesn't sound like this is going to be a very helpful change for patients. It feels to me as if we're going backwards.

 

The report is problematic in many ways, but I think it's a step forward.

 

Belgium is investing €400,000 for yet another study of whether nutrition and physical training can help with Long Covid. There are probably dozens running right now of the exact same fooling around, and many non-research programs. I'd say this is poorly spent but if the goal is to continue with denial, then well no it's still poorly spent since invisible costs are still very real, they just don't appear on balance sheets, in fact it's far more expensive in the end.

Translation comes off a bit too garbled to bother.

https://twitter.com/user/status/1474077890660782091

 

A short Twitter thread from a Belgian member of the EU Parliament.

"A disease from which an estimated 2 million people in Europe already suffer, and yet is hardly known by the general public and far too little researched: "Myalgic Encephalomyelitis". #MECFS is still incurable, many patients do not receive correct diagnosis."

"This has to change and @Europarl_EN has already made an urgent call for this in 2020. Experts believe that #LongCovid will continue to significantly increase the problem and the incidence of the disease. We expect concrete action from the @EU_Commission to enable research."

"We exchanged views on how to achieve this today in our first #MECFS Group meeting in the EU Parliament. We will now once again urgently confront the EU Commission with our demands. This disease must no longer be ignored!"

 

Thanks for posting Andy. Arimont has been a supporter of ME/CFS patients for a while now at the European level. His efforts are much appreciated.