The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

We need researchers to weigh in and tell us whether they agree with our concerns, and what they think could be done.

 

Do you mean researchers that are in line to receive funding for this project or researchers from outside?

 

Both, but the ones that will also receive funding seem more important.

With support from researchers a lot more pressure could be exerted to influence the ME/CFS Lifelines study. For example to enforce the requirement of a clinical diagnosis of ME/CFS by doctors that the patient community can trust.

 

True, and there's really no excuse to produce science you know is not going to help anyone whilst an entire patient community is in dire need.

 

Yes, I'm reminded of the PACE study --- the researchers didn't care enough about those with ME to collect objective data (i.e. actimetry - Fitbit type devices) as per the original study protocol. Nor did they willingly disclose that they hadn't collected objective/reliable data --- until they were forced to release the data under FOI.

If these researchers were concerned enough about maximizing the benefit, of the GWAS study, for people with ME then they'd work to align their selection criteria with DecodeME. I wouldn't blame anyone for reflecting on PACE and likely the ZonMW GWAS study--- science is supposed to be about producing usable/reliable/interpretable data --- not attempting to prove your own pet theory, particularly with public money and at the expense of the vulnerable.

 

Was there an attempt to see if people could donate there bodies to medical science with ME in the UK?

 

QFS researcher Ruud Raijmakers explains during a talk that they'll be researching different "Post-infectious fatigue syndromes"/PIFS for the ZonMw program and will also be collaborating with COFFII. Just a quick look at the publications by them and those committees: OMFG!!! This will be for the NMCB consortium so not the one with Rosmalen...

Here's the talk where he refers to Fukuda, calls it PIFS even when referring to a paper by Choutka et al. 2022 that coined PAIS, all about fatigue, becoming fatigued after exertion etc. Sigh...

1) youtu.be/9CkS63AzHsw

2) coffi-collaborative.com/publications

https://www.coffi-collaborative.com/scientific-advisory-committee

3) https://virology.ws/2022/02/27/tria...-psychosocial-research-agenda-for-long-covid/

4) https://projecten.zonmw.nl/nl/proje...immunologische-vergelijking-van-mecvs-en-pivs

Ugh...

 

Stumped for words right now...

 

Collaborated on papers with a number of the usual suspects if researchgate is anything to go by.

 

It's just a mash of biological papers and batshit psychological theories. Collaborated with Knoop, Bleijenberg and v.d. Meer if I'm reading correctly.

 

Our thread on COFFI, COFFI - The international collaborative on fatigue following infection

 

https://www.radboudumc.nl/en/news-i...n-the-development-of-q-fever-fatigue-syndrome

Spoiler

Fatigue and high burden of disease

Spoiler

Over 20% of acute Q fever patients develop long-term symptoms, such as fatigue, muscle ache, joint pain, headaches, night sweats, and rapidly recurring upper respiratory tract infections. The diagnosis QFS can be made if the fatigue persists for more than six months and there is no other explanation for the complaints. Why some patients develop QFS and others do not is unknown. Within the Radboudumc Q fever Expertise Centre, PhD student Ruud Raijmakers has been researching QFS for the past few years. Raijmakers: "We still know relatively little about infectious diseases that cause chronic fatigue. That is why I researched different aspects of QFS; the body seems to be out of balance in several areas."

Long-term Effects of Cognitive Behavioural Therapy
Among other things, Raijmakers investigated the long-term effects of cognitive behavioural therapy, a treatment that focuses on thoughts and behaviour that perpetuate fatigue. This treatment is known to benefit patients with chronic fatigue syndrome (CFS), a condition with similar symptoms. Raijmakers: "Our research has, strikingly, shown that the beneficial effects of the therapy wanes off sooner than expected in QFS patients. We don't know exactly why this happens, but it may pay off to tailor the therapy more to QFS and to schedule 'maintenance' or 'booster' sessions."

About the PhD
Thesis 'Immunopathology of Q fever fatigue syndrome' by Ruud P.H. Raijmakers. Supervised by: Prof. Dr. J.W.M. van der Meer, Prof. Dr. L.A.B. Joosten and Prof. Dr. C.P. Bleeker-Rovers. The defense takes place on December 8 at 10.30 am and can be followed live here.

Supervised by van der Meer. Fella never stood a chance.

 

So I guess they're working around the requirement that this be spent on biomedical research by just gathering the old psychosomatic team and using a wink and a nod that they'll tooootally be doing biomedical research, which authorities know fully is false. And of course they'll be doing their usual BS but pretend otherwise, kind of like how Wessely did a little bit of performative lab work early on.

Damn they must be laughing their ass off at just grabbing that money for themselves. Patients worked very hard to make this available, more money than has ever been spent on this in this country, even for their own work, and they just hijacked it all. Or maybe most of it. Hard to tell. Although at this point the authorities have as much to blame, they know full well what is going on and seem glad to be complicit. Impressive regulatory failure.

Same with Long Covid. I guess I should have expected that if money were made available, the usual gangs would just gobble it all up. I don't know why I didn't expect that, I guess it's because it's cartoonishly corrupt and I'm still too much of an optimist (despite everything, it's just that I see through these people, but I didn't think it'd go this far). And yet here we are.

This is seriously some Black mirror shit. Or maybe even Dr Evil in Austin Powers. Oh well, at least artificial intelligence is going to make this all irrelevant, just a matter of time. I'd be pretty damn demoralized if I wasn't so sure of this.

 

Google translated quote.

ME/CFS Association is going to court

"After reviewing the decisions taken by ZonMw and carefully weighing the interests of ME/CFS patients, the ME/CFS Association has decided to file a pro forma appeal with the court. In this letter, the court is requested, among other things, to quash ZonMw's decision on the pro-forma objection and to deal with it as well as to declare the objections well-founded. It is expected that it will take some time before a judicial decision is made by the court."

https://me-cvsvereniging.nl/nieuws/me-cvs-vereniging-stapt-naar-de-rechter/

 

This is the right move. It may fail, but they are making a mockery of the whole process and the language that obligated them to... literally do the opposite of what they did. This is highly corrupt malfeasance and it must be challenged to the hilt.

 

I'm happy they are taking action even if it's just to make a clear statement. Well done by them.

 

https://twitter.com/user/status/1706295518710694195


A Dutch member of parliament is raising a request to make 4.4 million euro's extra available for biomedical research. It's to make up for the 4.4 million euro's that wasn't adequately spent on the Lifelines-project.