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

I also found it a little Kafkaesque that the researchers [Twitter 5th May] offer to explain the methodology received one response from a person with long covid* & zero from people with ME!
Grateful that the researchers offer was highlighted here & I responded.

I'm a little concerned that e.g. the Government Department may not have been formally/publicly (social media) challenged on the failure to consult & asked to consult now.

*Siebe.
@PatientPersists

 

Worrying - if they use the DecodeME protocols then the GWAS data can be combined - if not then I'm worried that the GWAS data will be useless.
@Arvo @Solstice

 

Well, taking a positive view, perhaps it indicates a willingness to adopt the same criteria as we have used; I personally wouldn't call that collaboration, in the sense of directly working together, but it might be a language difference thing where information sharing is seen as being collaboration. As to data combination, as I understand the timelines, DecodeME will finish before the ME/CFS Lines GWAS, so there is the potential for them to request our data and perform an analysis on the two data sets, so perhaps that sort of thing is what they refer to.

 

One of the problems we have in the Netherlands is that our ME forums are as good as vacated. The me-gids.net forums used to be very active and lively but a lot of people left for whatever reason. I went to Phoenix Rising myself which was way more informative at the time, then joined here. It unfortunately makes it hard to organize and be on the ball on many things. This forum has a lot of eyes out on lots of different research but being patients with ME we sorta need to collaborate to get things done.

Replying to a scientist with insightful inquiry is beyond the scope of many ME-patients. People that have the knowledge to do so often don't have the energy. Beyond that some are patient advocates in some way or another and maybe can't respond to certain messages.

I think a lot of us would like to do something but knowledge, energy and brain fog are all prohibitive factors. @Andy 's suggestion for an open letter is something that might be useful for example but I wouldn't even know where to start on that one. It would probably need to involve some of our charities or the ME-Den Haag group and I wouldn't even know how to get this idea across to them.

 

Government could issue a consultation i.e. pause the process until the consultation was held. Issues they could still consult on e.g. include the population/criteria for the GWAS study.

 

Yea, I plagiarise stuff from this forum and sometimes post something here, for comment, before I submit it.
Yes, various barriers, knowledge (or perceived lack of---), energy ---

 

This.
It's already a major challenge to do advocacy while being sick, and the number of people in The Netherlands who are so well-informed that they can discuss methodology is probably not large. To reply to that post they'd have to be 1. well enough to do so 2. not otherwise occupied in organising more urgent advocacy 3. informed enough and 4. on Twitter. (And 5.: be aware the tweet exists.)

Remember, we're 1/4 of the UK in population size ànd don't speak native english. When you live in the UK or another english speaking nation you can work together with a large part of the world and all the papers are written in your native language. Try to imagine a situation where you live in the UK and you have only access to the work and collaboration of UK advocates (so no Tom Kindlon, Brian Hughes, David Tuller, Alem Matthees etc.), you'd have to work with only a quarter of the advocates you currently have, and all papers and good advocacy pieces are written in French or Bulgarian, so you'd have to read in your non-native language and to make it accessible to the patient community you'd have to translate everything.

I couldn't just share all the documentation from The Netherlands here on this thread - almost every post takes extra effort to pull thing through a translator or explain the content. That's the constant situation the other way around.

Plus, as Solstice remarks, international sources are way more informative, at least they were in the past. I don't know how it's now, but a while back the dutch patient population was really stuck in a bubble where having ME was being chronic fatigued, and ME was mysterious -no one knew what was going on in the body. The ME/CVS Stichting played a part in keeping that narrative up. I know I was pretty surprised and pissed off when I found english sources who presented actual biomedical finds.

The situation has improved a lot with more better orgs and social media (making international things more easily accessible and shareable), but the number of active and informed advocates does not seem very large afaik, although they do good work with the room they have.

 

Given the info I have so far that was not the plan, but it would be wonderful if she would. However, that would mean having her whole patient group (thousands of people) assessed by a physician, also to see if they fit IOM or CCC, and have PEM.

Apart from the man-hours this would ask (who's going to do this, especially with medical care stretched as it is), it would take time and money this project will not have budgetted for.

If she'd do it by questionnaire, she'd still have to organise creating and sending the questtionaire, make sure everyone fills it in. And that still would mean her setup is not aligned with DecodeME or UKMEB because a physician assessment was not done.

You could be content with that, but it would still be a patch-up work and specifically against the requirements of the ME/CFS Research Plan, that emphasises the importance of projects aligning/standardizing well with international standards and projects, and all entries of the biobank (that is set up to be a source for researchers) are assessed by a" competent and experienced clinician".

 

I have no idea how this would go legally in The Netherlands, but to me it seems it could very well have been the government who encouraged ZonMw to do this in the first place.

The ME/CFS research project was commissioned by the dutch ministry of health.
ZonMw seemed to have the intention to get this right (the plan's great), until suddenly they found administrative issues that sidelined patients, and now they are even actively working against the patient community and its interests, blacking out docs and playing games after giving millions to a project that does not fit the grant requirements.

Maybe "the government" would mean Parliament but to get this to be found important and then put on the agenda and thèn discusssed properly seems like a monstrous and near-impossible task to me.

There are certainly avenues to take (legally, publicly, Ombudsman), but personally I think the politics route will go nowhere. Dutch ME advocates will have a better understanding of the feasibility of this than I do though.

 

Rob Wijbenga [ME Global Chronicle] - who I think was/is on this forum, is lobbying re this. Only glanced, but there's a objection letter here re the absence of consultation - looks good.
https://mecentraal.wordpress.com/2023/05/15/zonmw-en-deadlines/

 

Simon McGrath did an excellent blog on GWAS --- i.e. in plain language - check online & there'll be a link on this forum too.
Yes, it takes time and not everyone has that. I also think it takes a willingness to respond --- I've responded to the researchers offer to discuss methodology. Some folks may think they don't know enough, but some times it's just a willingness to try. If in doubt post something here & ask for comments - but that takes energy, time ---

 

ME Centraal is encouraging people to formally object to the grant decision to ME/CFS Lines to ZonMw, and to protest the refusal by ZonMw to consider these objections.

Next to this main focus, they have also encouraged people earlier to send a protest letter to the Ministry of health (VWS); in the concept letter for that a request is made to "freeze" the grant to ME/CFS Lines in order to spend it on a better project, like NMCB, or another consortium after a new call for funding. And to "do something" with the info in the letter.

The concept letter contains no specific request for a pause while there's a consultation. (And like I said before, I don't know what the dutch equivalent of such a thing is process-wise, plus I don't think VWS is motivated to solve this.)

 

It really is energy and brain fog that are prohibitive for a lot of people. I find myself sending letters and responding to tweets that I couldn't have possibly responded to about 2 years ago. Disseminating information about trials is very very hard. I've tweeted about a few of the problems with the set-up of the Lifelines-project, parroting things that have been laid out in simple terms to me here. A lot of people simply can't.

 

Gonna be sending those letters either way. Fed up of being sidelined by these people.

 

Yes, sending letters, objecting to the decision and being vocal is certainly the thing to do!

I'm sorry that I wasn't clear enough: while I personally think that it will be difficult to get ZonMw and VWS to cooperate/do what's right (as I think they don't want to), being vocal and protesting this is very important!

 

Those who objected to the proposals have been told their out of time - unless they can show "exceptional circumstances".
ME Central provided a template letter i.e. highlighting that there were "exceptional circumstances"- by the time they'd announced/publicised the proposals it was too late to object!
I'm impressed by Rob Wijbenga - ME Central - he/they know what they're doing & they're doing it --- check them out --- no guarantee of success of course ---.

EDIT - I've contacted Rob & suggested that they [Goverment] could still "consult" on the GWAS methodology --- aligning with DecodeME!
I posted this suggestion above too.

 

There was a vote in our second chamber, which I guess you would call the house if you're from the US. The vote was about holding a congressional debate about long covid. There was a majority support to hold such a debate. I don't know if there's anything we can do to latch on to that, but it's mainly about the state of care for long covid patients and the lack of good research. Our health minister and his party voted against btw. And therein lies our problem with regards to the situation surrounding ME too. Willful ignorance. If we don't research long covid and ME we don't have to do anything about it.

The outbreak management team supported the decision I think, estimating there are 100.000-350.000 long covid patients in the Netherlands but also saying we can't be sure because proper research just isn't done and we still don't have a clear case definition. For ME we have that(IOM, CCC, ICC) but ZonMw gets allowed or forced to sidestep it.

Post copied to News from The Netherlands

 

Didn't see this one, but I think he's involved with the other project in Amsterdam. The one that got awarded 7 million.