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

[FMMM1]

Lou Corsius got his FOI response. Everything beyond general ZonMw program information has been blacked out, Dutch gov style. Including, and specifically, all grounds on which the approval is based, and information about the ME/CFS Lines projects.

no expert but from memory you can:

• ask for an "internal" review. If that's refused;
• ask for a external review.

If it were me, I'd be reluctant to refuse to disclose unless I could defend the external appeal ----. Takes time to appeal but it may be interesting. Also, if they've already been found to have refused to disclose, without grounds --- then they may be sanctioned for a repeat offense.

EDIT - my impression is that once a decision is made the the "policy development" exception is no longer valid. The policy the Minister signs off on is subject to disclosure --- redaction may be acceptable if there's legal advice, commercial information --- but the blanket "i) the proper functioning of the State, other public bodies or governing bodies."
exemption disappears ---

 

[rvallee]

It's bonkers how we're fighting against them instead of working with them AGAIN

More accurate to say that they are fighting against us. And reality. But yeah. Bonkers at a level that is completely incompatible with professionals.

 

[bobbler]

It's bonkers how we're fighting against them instead of working with them AGAIN. You start with a petition and a ME Den Haag-groep that's working to get guidelines overturned. That not only happens, we even get a huge influx of cash, only to just see it squandered again years later. It's maddening. These assholes are never gonna do the right thing unless you force their hand.

In a theoretical hardball strategy you also need to start unpicking the psychosomatics so they no longer have jobs and kingdoms ie follow-through right to the end once they’ve been found out or picked up on something. If it were the other way around such people wouldn’t hesitate to ensure there was nothing left of their opponents and it us actually somewhat supposed to be the norm that once all their research gets outed the area itself gets slowly dismantled down.

You can't just leave slighted, smouldering embers with their jobs and departments they shouldn’t have still , and they shouldn’t exist anyway as funded depts should be split and assigned based on usefulness- there isn’t actually a part of the world where suddenly the useless and strange must keep it’s huge oversized spot ‘just cos’. That would be like physics having x% para physics depts - why? Use the money for more CERNs or astronomy labs. There is never enough funding for all the good stuff so why the useless chunks aren’t dismantled when highlighted as such I don’t know.

Basically unless the issue is properly gotten to the bottom of where such subjects that don't have a place in an area are redirected or reduced to where there might be a place for them then of course all they have left is to keep trying to resurrect the same battle for a different answer. Because that is literally all they are set up to do without them being reorganised to a new relevant purpose. And because those to whom they report will say what are you doing to sort this issue, and the only obviously thing they will think of is lobbying for a 'let's do best of 7 this time then on the scissors, paper, rock'.

The failure of these things to have had such follow-through is a real issue. Because it feels like the literature, weight of science and just passing of huge amounts of time vs what little they've been able to produce in those decades, indicate a tipping point has been reached. But if the next bit isn't being instituted and you've still just got a sector whose job description is this failed area, then they can't change it because that is their set of orders and what they are hired to deliver etc, and there isn't that impetus to complete the slow transformation/evolution/revolution etc needed

 

[Arvo]

It's bonkers how we're fighting against them instead of working with them AGAIN.

Indeed! After what happened in '05 (patients fought for getting 2 million euro becoming available for biomedical research via ZonMw, and it went to a string of CBT industry projects) it can certainly feel like a repeat.

But it's also different: What I've read so far from the ME/CFS Biomedical Research Program, they actually set up a good project. (And let's not forget that the other consortium got awarded funds as well, and they seem to follow the Program.) To me it really seems like a fairly recent intervention by the health ministry to get Rosmalen set up. (But of course, I'm not sure.)

If I look at the changes made to the Lifelines wiki in September '20, I'd say Rosmalen has been aiming to get involved from the start, and others probably aimed for that as well. But she doesn't fit the Program. It was only September last year ZonMw started to sideline patient representatives in the decision making process due to suddenly "discovered" bureacratic difficulties. (Typing from memory, so I'm not 100% on this.)

 

[Arvo]

If it were me, I'd be reluctant to refuse to disclose unless I could defend the external appeal ----. Takes time to appeal but it may be interesting. Also, if they've already been found to have refused to disclose, without grounds --- then they may be sanctioned for a repeat offense.

Yes, it is weak.

• It seems highly unlikely that Rosmalen's aims and her project's specifics fit the Program. They don't so far. That it "needs" to be blacked out only emphasises that this is probably the case.
• In the Program they hammer on quality, international standards (which include transparent science!) and patient participation, and their FOI response violates all this..
• The health ministry also just last month got told off for lavishly using that "functioning of the State" excuse to refuse info to journalists and the public. The report said:

Align your policy for the application of the i-ground (to protect the proper functioning of the State) in accordance with the law and the premise "public unless", so more
documents become anonymized or partially public instead of refusing documents by default and altogether. Openness to everyone is the norm, and grounds for exceptions should be used sparingly.

As you can see ZonMw now used that "public unless", but then still blacked out all the relevant info. They also didn't hold to the norm of openness to everyone or using the exemtption sparingly.

And what's there to exempt? How exactly is disclosing how ME/CFS Lines fits/doesn't fit the Biomedical Program requirements a risk to the functioning of the State or governing bodies? This is part of basic open science: knowing what they plan to do, which criteria they use etc. The program also specifies that grant requesters need to detail their plans on that front, why is that suddenly secret and how would making that public be a problem? ("ZonMW cannot properly function when it is known which criteria set the microbiome study will use. ")

It's shit I am not well enough, otherwise I would have found it something to dive into.

EDIT - my impression is that once a decision is made the the "policy development" exception is no longer valid. The policy the Minister signs off on is subject to disclosure --- redaction may be acceptable if there's legal advice, commercial information --- but the blanket "i) the proper functioning of the State, other public bodies or governing bodies."
exemption disappears ---

Interesting! Our government lavishly uses that exemption on anything which is inconvenient for them to disclose. (I've recently seen in The Guardian that the UK is now dipping its toes in using this trick as well, can't find the source anymore though.)

 

[Arvo]

Bonkers at a level that is completely incompatible with professionals.

O they are professionals. Just not very kind or empathic ones.

 

[Solstice]

Gonna make myself a member of the ME/CVS Vereniging and leave twitter/facebook etc. on this for what it is now. If there's a mail-in campaign or anything of the sort I will participate, hoping de Vereniging keeps me up-to-date on that.

Thanks again for putting all this effort in @Arvo.

 

[FMMM1]

@Arvo repeating myself -- good luck!
"i) the proper functioning of the State, other public bodies or governing bodies." seem to recall that this is the exemption which allows public bodies to have "internal" discussions --- intended to give them "private space" --- I was a little surprised to learn that this applies during the policy development stage but not at the point a decision is made --- so the submission to the Minister (which the Minister signs off) is disclosable. I'd be surprised if the submission to the Minister didn't have something like --- media reaction --- I'd probably go down the line ---
"alert the Minister to the fact that opinions are divided --- patients & their representatives resent "psychological" label and are likely to challenge the lead researcher [psychological researcher] --- while welcoming funding for biomedical GWAS ---". Plus I'd probably reflect the sae theme in the discussion of allocation of funding ---
I do this on the grounds that the Minister should be fully informed --- others may point out that civil servants were blamed for the cash for ash scandal --- poor record keeping (no written records of important meetings etc.) appearing to be the norm ---

Check out Jan Brea's film --- it highlights the "psychological" labelling of women's diseases --- 50% of the electorate --- I suspect that getting re-elected is a general goal of politicians----

I'm a very junior minion in a regional assembly -- my role is unrelated to health.

 

[Arvo]

So don't assume that your are powerless --- you can remind/encourage --- the Minister!

Given the situation with this government and this minister, this gave me a chuckle. (Not at you of course -you don't live here so you can't know- but at the idea of "reminding/encouraging" Kuipers.) He doesn't need to be encouraged or reminded as he know exactly what he's doing. (People have hit that wall repeatedly.)

This government has a habit of avoiding accountability by blacking out FOI requests, not giving docs altogether, not informing parliament, not informing the public, and endless stalling: it keeps the public uninformed and makes it incredibly difficult to hold them accountable. What we see in the FOI return to Lou Corsius -blacking out large swaths of text based on made-up or inappropriate application of FOI law- is so "normal" that it is even named after our Prime Minister: The Rutte doctrine (GT eng) (De Rutte doctrine)

Focusing on electibility won't work: we have a system that elects parties not people, plus this government, led by this pm, has survived a string of large scandals and I think they have learned that on that front, there's nothing to worry about as long as the general public believes they are well-meaning. And as long as they black out or even deny FOI requests like done in this instance, they can keep up that facade. Like ZonMw is doing: stating "The ME/CFS Lines consortium meets the requirements of the research program. The consortium focuses on biomedical research and the program committee indicates in its opinion that the proposal is of high quality and relevant.", and then make it impossible to check if that is so in ZonMw docs by using paragraph 5.1, section 2, subsection i -exactly like our health ministry is prone to doing.

(And if our government really can't avoid having to deal with the negative effect this has on parts of the population due to growing scrutiny, they usually "talk" to the people affected so they can show that these people are "heard" while they still stay on the course of what they were doing before.)

 

[FMMM1]

And as long as they black out or even deny FOI requests like done in this instance

Pain in the --- going through the appeal system but FOI is based on EU legislation --- eventually they can end up answering to the EU --- maybe send an "open" letter to the [National] EU Commission offices --- publicise your frustration on social media. The EU Commission generally tries to get "problematic" governments back on track i.e. without referral to the European Court of Justice [ECJ] but that option/threat remains ---
You obviously know what your doing --- good luck.

 

[Arvo]

Ack, I accidentally deleted the last bit of my post.

@FMMM1 , thank you for thinking along and sharing ideas, it is much appreciated.

FOI is based on EU legislation --- eventually they can end up answering to the EU --- maybe send an "open" letter to the [National] EU Commission offices --- publicise your frustration on social media. The EU Commission generally tries to get "problematic" governments back on track i.e. without referral to the European Court of Justice [ECJ] but that option/threat remains ---

That is very interesting! Thanks for the info, that certainly seems like an option as well.

You obviously know what your doing --- good luck

Well, this is it though, unfortunately. I'd really like to "raise a stink" on this as it is so colourfully phrased in english, but my health won't permit it. Lying in bed I've brain-written 80% of a document for journalists and other interested outsiders, based on my posts here, that explains in clear points where the problem lies, but I can't execute it atm.

I'm also way too unwell to pull this wagon, and I've other important things to do with the very little room I have: process my historical research. (I also usually stay away from the current&dutch area, as it risks triggering my PTSD.)

It's is incredibly frustrating though, as I'm itching to take this on.

 

[FMMM1]

It's is incredibly frustrating though, as I'm itching to take this on.

The FOI issues seem to be common i.e. there may be activists who can pursue this.

Yes, put your health first.

 

[FMMM1]

The issue re selection criteria for the GWAS trial is important. A worse case scenario is that the data cannot be combined with other [GWAS] studies like DecodeME - the whole idea is that GWAS studies can be combined since large datasets have been required to identify genes in diseases like dementia --- Hopefully the patient community can challenge this.

EDIT I replied to Anil's tweet - "GWAS trial - selection criteria - - worse case scenario - data cannot be combined with other [GWAS] studies like DecodeME - large datasets have been required to identify genes in diseases like dementia --- Hope the patient community can challenge the GWAS Selection criteria."

 

[FMMM1]

Folks criteria ain't my thing --- can anyone advise ---
1) DecodeME used ICCC?
2) Dutch study propose Fukuda criteria (or CDC 1994 criteria)?

EDIT - found the answer -
"
We use the 2015 Institute of Medicine (IOM), now known as the National Academy of Medicine (NAM) criteria, or the 2003 Canadian Consensus criteria, but we will not be using the Oxford or NICE 2007 criteria. Given that people with ME, ME organisations, and ME/CFS biomedical researchers all regard Post-Exertional Malaise (PEM) as a defining symptom of the disease, this will be a mandatory symptom.

We undertook an online survey and the majority of people supported this. These criteria were also agreed at the MRC/NIHR Workshop with researchers, patients and carers."
https://www.decodeme.org.uk/faqs/wh...ally-what-about-the-oxford-and-nice-criteria/

 

[Sly Saint]

Amsterdam UMC
Over 7 million euros for research on severe fatigue

With funding of 7.2 million from ZonMw, Amsterdam UMC will soon start a large biomedical research project on chronic fatigue, ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome). Project leader Jos Bosch will work with more than 20 partners to find answers to questions such as: What exactly happens inside the body of ME/CFS patients? How can diagnosis be improved? And what treatments could be effective? Homebound patients with ME/CFS will also be involved.

People with ME/CFS, also called chronic fatigue syndrome, are quickly exhausted with little effort and often have other chronic complaints, such as (frequent) pain, memory problems and hypersensitivity, for example to light and sound. Much remains unknown about the disease. There are discussions about the name, and there is no agreement about the characteristics, causes and treatment of the disease. This research project led by Amsterdam UMC should change this. In this study patients with severe ME/CFS will be included.

https://www.amsterdamumc.org/en/res...ion-euros-for-research-on-severe-fatigue-.htm

 

[Solstice]

People with ME/CFS, also called chronic fatigue syndrome. That's double. Also doesn't include PEM in the message.

 

[Arvo]

The issue re selection criteria for the GWAS trial is important. A worse case scenario is that the data cannot be combined with other [GWAS] studies like DecodeME - the whole idea is that GWAS studies can be combined since large datasets have been required to identify genes in diseases like dementia --- Hopefully the patient community can challenge this.

The ZonMw page for the GWAS study "ME/CFS & genetics: research into the biological cause" says "By combining the found DNA variations with existing layers of biological data (multi-omics) from the ME/CFS Lines consortium, genes and biological mechanisms behind ME/CFS can be identified." and "The research is being done in collaboration with ME/CFS Lines. This is a multidisciplinary consortium with biobank to find the cause of ME/CFS."

So it looks like Lifelines data will be used.

Now I looked it up in Lou Corsius' FOI answer, in case any of that black block was somehow missing criteria info, and something looks a little disconcerting: In the letter telling the GWAS project that they will get the grant, the project title is "Identifying causal biological mechanisms in ME/CFS by a functional genetic approach."

Now given Rosmalen's work of propagating ME/CFS as a functional disorder, also by using the Lifelines data, and the fact that she is already involved in genetics for functional disorders using the Lifelines data, this is important, I think.

Edited to add screenshot of the first page of the letter with the project title.

 

[Arvo]

And unfortunately, the part discussing criteria in the letter, "the research population needs to fit the research question well and must relate to the pros and cons of the different criteria with which ME/CFS is often defined" is also blacked out. Only the last bit is readable: "The program committee is satisfied with the response/rebuttal"

It's clear from the program text that researchers should make a motivated choice between ICC, CCC and IOM, with the program text giving the pros and cons. But ZonMw has hidden what the GWAS study will do.

 

[FMMM1]

It's clear from the program text that researchers should make a motivated choice between ICC, CCC and IOM, with the program text giving the pros and cons. But ZonMw has hidden what the GWAS study will do.

If you were setting a tender i.e. for a multimillion euro (/£/$) contract, and it was important to set the criteria, then you wouldn't say ---that researchers should make a motivated choice between ICC, CCC and IOM ---- You'd specify that the data must be collected in a way that will allow the results to be combined with DecodeME ---
Reminds me of PACE --- set out to collect usable data and abandon that goal because you couldn't care about those affected by ME/CFS. Oh and then obfuscate/muddy the waters --- good quality data ---
Know anyone who can raise these concerns?

 

[FMMM1]

But ZonMw has hidden what the GWAS study will do.

This is public money and the grants are allocated by a public body [semi-state]? Surely FOI requires the disclosure of the study protocol i.e. the criteria used to select participants?
Perhaps the patient community highlighting their concerns on social media --- need to align selection criteria with DeodeME. GWAS studies need to select the same population i.e. to increase chances of identifying the genes which are relevant.