German federal agencies (BMG and BMBF) taking initiatives for ME/CFS

There’s some good news from Germany.

Two federal agencies ,namely the Federal Ministry of Education and Research (BMBF) and the Federal Ministry of Health (BMG) have announced initiatives for ME/CFS. I hope I summarize these well because my German isn’t that good and it seems that the news have been announced in an unexpected and rather chaotic way (mostly on Twitter).

In this Tweet by German member of parliament for the Greens, Maria Klein-Schmeink posted a letter with info about these initiatives. In the accompanying text she writes: “Finally: things are happening #MECFS Let's hope this becomes more than a glimpse of hope.”

https://twitter.com/user/status/1315902024127524865


The letter itself mentions two new initiatives. First the the BMG will commission the Institute for Quality and Efficiency in Health Care (IQWIG) to process and publish the current state of knowledge on CFS/ME in the form of a scientific report.

Second the BMBF has announced a call for study proposals on unknown pathomechanisms of individual diseases with high disease burden but insufficient treatment options. They mention that this offers new opportunities to fund ME/CFS research.

Both agencies BMG and BMBF will also invite the main Germany patient organizations (Deutsche Gesellschaft für ME/CFS?, Fatigatio e.V., Lost Voices Foundation and MillionsMissingDeutschland) to provide info on these projects.

 

There's also this response from the BMBF Twitter account to Daniel Loy and other German ME/CFS advocates on Twitter.

https://twitter.com/user/status/1315937505603186689


EDIT: here's the translation by Daniel Loy posted on Twitter:

 

Here's the full guideline on the BMBF call for proposals: https://www.gesundheitsforschung-bmbf.de/de/11004.php

 

If I understand correctly this BMBF call for proposals has two modules. The first one is on finding cross-disease pathological mechanisms. The second one is the one relevant to us. It's for "research into previously unknown pathological mechanisms for individual diseases, the origin of which is largely unclear and which is therefore insufficiently treatable."

The text writes that these must be diseases that are life-threatening or lead to chronic disability or serious impairments of the quality of life and/or cause high costs. Rare diseases are excluded.

Als important: although identification of relevant new therapeutic targets falls within the scope, interventional clinical trials are excluded. So it seems that it needs to be research into finding something new about the underlying pathology, which would make it very difficult for GET/CBT studies to be funded.

Hopefully, some good proposals will follow in Germany. If I understand correctly the BMBF hasn't allocated a budget for this. It writes that "the granting authority decides on the basis of its dutiful discretion within the limits of the available budgetary resources." So I think it will all depend on the quantity and quality of submitted proposals.

The deadline is 29 January 2021. It's probably a good idea for German patient organisations to promote the BMBF call for proposals as much as possible to scientists and researchers.

 

Is it limited to German researchers?

 

On Twitter, German-speaking advocates have expressed some scepticism because the letter speaks of two to three therapies (Therapieverfahren) that are going to be evaluated.

See for example:

https://twitter.com/user/status/1316311488748027906


https://twitter.com/user/status/1315905321022480384

 

Not sure. The following (translated) sentence suggests so:

Perhaps someone with a better understanding of the German situation could respond to Andy's question.

 

automatic translation of the part of the letter in which the review/evaluation project is mentioned

 

Who is Sabrine Wein, the person that signed the letter?

Does anyone have a full copy of the letter?

 

It could be good, it could be extremely bad.

 

I cannot answer any question regarding how those grants work, but I wanted to mention that I would not be inherently concerned by the sentence saying they want to evaluate therapies - I imagine the intent behind this is to formally look at several commonly used modalities and look at the evidence base behind them. If I had to guess I would assume they are talking about CBT/GET and possibly another psych therapy, or I might misread the situation and the intent is to evaluate some of the treatments our resident MDs just like to try as far as available (IGG, Immunoadsorption, whatever else).

I would, however, be very concerned by insurance/psychlobby/etc interest groups trying to hijack and influence this process behind the scenes. We might have a very big garbage in / garbage out trap looming and I imagine we could very much use any available avenue to inject actual expertise into whatever process the IQWIG is going to do if that is at all possible as I have absolutely zero confidence that they will not completely fail at this until they prove otherwise.

As far as I am aware, a huge problem with this specific institution has always been a lack of funding. Even without targeted interventions by the people who up until now have successfully buried 200k+ people within our community, the standard problems we face everywhere will be the same here (people evaluate CBT, find 5-10% improvement on whatever mostly irrelevant scale is used -> insurance company or whatever body claims you have to heal yourself using this) so even if the intent is good this may go very wrong due to the people doing the review being incompetent - for whatever reason.

I expect the DG to have raised all those points to the people behind this initiative, whether it is possible to somehow enforce competent reviewers is another matter entirely. It might be best to hope for some people with no prior experience in any of this whose only axe to grind is to adhere to strict science. I personally do not know any German researcher/professor I would want involved because those who do research and talk about it have always veered a bit on the hype side (which is not a great attribute to have here), but it is very possible there are good people available who tend not to join any publicly available dialogues (some of the people out of Erlangen seem to at least keep up with the research). I am not necessarily the most informed person here anyway though.

 

Don't want to be too optimistic but I think the days of extremely bad reports on ME/CFS are over. Can't recall a recently published guideline on ME/CFS that was extremely bad.

 

The past guidelines from Germany don't inspire any optimism in me

https://me-pedia.org/wiki/Germany

 

I am afraid that the Institute for Quality and Efficiency in Health Care (IQWIG) could just adopt Cochrane's assessment of CBT and GET.

 

True but these were guidelines on Fatigue and functional disorders where ME/CFS was mentioned. So perhaps it would be good to have a report on ME/CFS that takes preference over the other two.

I hope not. I would be strange because the CBT review is more than 12 years old and the one on GET is currently in the process of being updated. While the Cochrane reviews might influence the rapport, I doubt that they will simply take over their conclusions.

The report might not be really good but given the current lack of awareness of ME/CFS in Germany, I suspect it will be a positive step in the right direction.

 

Does anyone know if Dr. Bhupesh Prusty's work will be part of the "current state of knowledge on CFS/ME in the form of a scientific report?"

Isn't it a good sign ME patient organizations are being asked to provide info?

 

From a quick google search, the IQWIG seem to have a record of a pronounced pharmacy-skeptical stance. It's possible that this is justified regarding the pharmacy companies in question, but I don't know whether they apply the same scrutinity to assessing psychological and physiotherapeutic treatments.

The currrent head of the IQWIG is Jürgen Windeler:

https://pubmed.ncbi.nlm.nih.gov/?term=Windeler+J

English google translate of his entry on wikipedia:

https://translate.google.com/translate?hl=de&sl=auto&tl=en&u=https://de.wikipedia.org/wiki/J%C3%BCrgen_Windeler

 

The institutions, universities and companies that apply for funding have to be in Germany, but the affiliated researchers I think don't need to have German citizenship or to reside in Germany.

 

why not save a lot of time and taxpayers money by simply copying the American report . edited to add that this agency seems to be the equivalent of britaiins nice org sole purpose is cost cutting .

 

Just as background info: The IQWIG had already written a report on ME in 2008, it was online until around 2012. This is the archived version: https://web.archive.org/web/2009072...ann-die-symptome-bei-erwachsenen.502.397.html