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

Yes, he's patient representative in the NMCB (the Dutch ME/CFS Cohort and Biobank, the other consortium that does follow the ZonMw ME/CFS research plan).

https://twitter.com/user/status/1650762517902245888

 

Did what I could last night to promote this conversation.

 

Thank you. I hope we can get the project cancelled, will be dealing with the fallout for years to come if we don't imo.

 

The Lifelines data for "ME/CFS" seem even worse than what they already are on paper.

@Grigor sent a tweet with a screenshot of a conversation between (I think) ME patients, who were participating in Lifelines. (15/5/23)

Person 1 says: "I'm a LifeLines participant from day 1. No one ever asked me about ME, CFS or even about something that looks like it. Even in the corona period, where we got a lot of questionnaires about corona and complaints in relation to corona, no one asked if complaints happened to exist for years already. How in heaven's name does Mrs Rosmalen want to get data from the databank then? New questionnaires?"

Person 2 replies: same here


The tweet this screenshot was posted with says:

"According to Lifelines participants a "diagnosis" wasn't even specifically asked after. Only symptoms are asked about and I think that they make the "diagnosis" on the basis of the answers. Sounds very, very vague..... I wonder if it will now go different at-ZonMW?"


This is in line with e.g. Rosmalen who says in her ZonMw interview: "We have also found people who were found to have ME/CFS but who had not yet been diagnosed."
And the current Lifelines wiki on "fatigue (CDC)" (first created in September 2020) that says:
"The CDC symptom survey improves the identification of participants that meet the diagnostic criteria for CFS/ME by assessing the presence of individual symptoms rather than the disease itself."


PS: tweet link not provided as the personal information wasn't completely blacked out.

 

It's to be expected by Rosmalen, the more annoying thing is that ZonMw is going out of their way to fuck us. This sort of study wouldn't have come through with just a smattering of oversight from patients.

 

Indeed. There's no way ZonMw can explain approving the grant to a project that violates the basic Program requirements so profoundly; it looks to me like they're going out of their way to avoid scrutiny of an indefensible decision.

 

I fear the same.

 

Someone who is a expert on this area motioned that the LifeLines cohort could actually be used to derive an accurate estimate of
prevalence. Think Leonard Jason (DePaul University) used a similar methodology i.e. sample the whole population and then look at those who report disabling fatigue in more detail i.e. to establish whether they have/do not have ME/CFS. So the current LifeLines cohort could be used constructively i.e. to estimate prevalence of ME/CFS - something for the patient community to lobby for.

Note - the LifeLines cohort currently estimates ME/CFS prevalence at 1.x (?) while generally accepted prevalence is around 0.4(?) - so the current LifeLines cohort overestimates prevalence by a factor of 3X(?) & is therefore unsuitable.

 

Seems - Boer's [Twitter] offer "I do not mind walking you though details of my project*" isn't being delivered. I asked questions here** - no reply. I suggest more folks pile in with questions --- e.g. prevalence from "Lifelines" is 3X generally accepted rates - will the project refine this cohort so that it accurately reflects prevalence of ME? Data from a cohort which is 3X different from other GWAS cohorts [DecodeME] can't be combined.
Suggested response - "You're "[working] together with DecodeME ---" data from a cohort which is 3X different from other GWAS cohorts [DecodeME] can't be combined."


I've replied to Boer's Tweet -
"I do not mind --- details of - project -Prevalence from "Lifelines" is 3X generally accepted rates - will the project refine this cohort so that it accurately reflects prevalence of ME? Data from a cohort which is 3X different from other GWAS cohorts [DecodeME] can't be combined"


*"Hey Siebe, That would be my project . If you want, I do not mind walking you though details of my project - For example, I will work together with DecodeME, - or answering questions about it. send me a message.


**https://twitter.com/user/status/1654409342811078657

 

From ME/CVS Vereniging,

"Update 5/23/23:
ZonMw has now informed us that our WOO [freedom of information] request is extensive and that more time is needed. ZonMw will use an external law firm to consult with the ME/CFS Association about prioritizing the handling of our request. To be continued!"

https://me-cvsvereniging.nl/nieuws/persbericht-wet-open-overheid-woo/

 

Oh yes, more money to be spent but now on legal aid. Very PACEy.

 

That's how you just know you're doing good medicine and real science, when patients are forced to take the legal route. Again.

And the worst part is that many of the people involved genuinely believe that. They have to, or the version of events they invented to justify their actions crumble into immoral dust. For them to be doing good while opposing us must mean that we are bad, and they seem infinitely capable of believing it. No matter how many lives they destroy, their ends justify the means.

 

When you’ve mentioned previously and rightly the HIV/AIDS research model of “nothing about us without us” how much did doing it the right way actually cost vs money wasted (in ME/CFS) on bad research, bad kingdoms and embedded therapies across all sorts of areas over/multiplied by how many years?

Ie how much waste did that proper patient input save and how much did it speed things up by preventing avoidable dead-ends?

Has it or involvement like it ever been repeated in other conditions and is it only this subject area that decides it is problematic then not just doing what they want vs other scientific research? Ie is it nothing to do with the illness, or the patients in question but they just are props for this being an unusual bunch in an unusual subject area that sees itself above/beneath the norms - because I think that’s what it is and who/what this is all about and I wish laypersons would see the real source of the problem and stop falling for their distractions.

 

That's the reaction I got yesterday from our ministry of Health. Am mulling a reply, have also mailed it through to the ME/CVS vereniging and ME Centraal to ask them what they think. I'll translate it later, afternoon nap comes first. If anyone else feels compelled to translate it they're offcourse welcome to.

I don't know if anyone needs tagging that should read this so I'll hold on that.

 

Ugh, that letter is bad.

I'm toast for the day, but err

Nopety nope

Yeah, see, that's the problem. ME patients objecting to giving professor Maladaptive Response To Physical Complaints a shit ton of money earmarked for solid biomedical research into ME, to expand her psychosomatic agenda (and unjustified claim on ME patients) based on a project that breaks the requirements of the ME/CFS Research Programme in full technicolor is of course about ME patients' lack of faith in science, refusal to take in new insights, closedmindedness and inability to change their minds. Rosmalen's project is fiiine. And we're doing this FOR YOU.


I'm reminded of Lance Armstrong's famous speech to people who suspected him of doping: "the people who don't believe in cycling, the cynics, the sceptics; [I feel] sorry for you. You need to believe in these riders. I'm sorry you can't dream big and I'm sorry you don't believe in miracles".

(But my initial response was: "We don't need to be open-minded Brennan, you're holding a turd." So for your entertainment, it's from a favourite sketch about the far right's attempts to normalise unacceptable views.)

 

Thanks Trish. It isn't even a non-answer this time but just straight-up lies. Patient representatives have been sidelined and the project didn't meet requirements.

ME Centraal directed me towards their website where it said this:

I've left out the bit in the middle about a petition for insurers to pay for treatments for ME patients. Source: https://mecentraal.wordpress.com/2023/05/26/ons-vws-en-zonmw/

 

I think the last paragraph of the ME Centraal letter is an excellent description of the feeling of a lot of people at the moment. We've fought too long to get to a point where good things are happening for us to now let it be overturned again. Not letting this slide.

 

That letter could have been simply the words: "we don't care, we can do what we want and there's nothing you can do about it".

To talk of being open-minded while being stuck in an infinite loop of failure is something. They keep pushing pseudoscience on this, and speak of faith in science. Well, science isn't about faith, and these people are completely derelict in their duties and beyond unethical.

They basically set the conditions so that patients can never trust anything they do, which they will no doubt simply use to continue doing as they want. This is frankly way more Art of war than about a medical textbook.

 

Looking up some stuff. ZonMw removed this, while making no mention of edited/altered text.


Edited to add links to the posts by Solstice and me this refers to, where ZonMw said in a FAQ in the article "Verklaring ZonMw op reacties toekenningen ME/CVS-programma" (=ZonMw statement on responses to ME/CFS program awards) of May the 4th:

which I see today has been removed from the article.