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Atm I suspect the ZonMw Research Program went rogue due to the wishes of the Ministry of Health. The ME/CFS program was set up under health minister Bruins. Who quit after becoming unwell at a covid debate at the start of the pandemic, due to a burnout (I still suspect that the decision to...

At the bottom of the page there is a FAQ.

I'll get back to you if I can/remember @bobbler, it's too much now. Take care everyone!

I tried to make key document available in english, but they are too big to post. 1. On the top right you can download the ME/CFS Research Program (download programmatekst) 2. A bit lower on the right on the same page you can download the Research Agenda (under "meer informatie" it says...

And of course the fifth point is Rosmalen herself: Psychosomatics/ MUS/somatic symptom dysorders are her trade, she has a broad history of collaborating with the exact people who pull ME into psychiatry, she has set up diagnosic guidance for diagnosing ME/CS patients as having a psychiatric...

Summary at the end! Do you reckon that would be enough? As my major issue is the project itself (and which is set up and led by a psychosomaticus with problematic current and past activities). And I think we're there are steps that could be taken before that, and even if Rosmalen would leave...

Me too! It's a bad situation for all the patients who have been thrown in the chronic fatigue bin, including those with disabling fatigue without PEM. It's not just ME patients whose medical research has been stalled by this for decades. And we should support eachother, I don't want patients...

I agree with @Solstice. I think the ME/CVS Vereniging and @Lou Corsius would probably be good contact points to discuss coordination and content, as they have been closely involved in the process to set up the ZonMw Research program and know it well. (Of course there are others as well.) Note...

PEM has been the core feature as part of expert descriptions (of those with actual ample clinical experience) since the 80s, for UK examples see here, for the US see Johnson's "Osler's web", where she describes it is accepted as a cardinal feature by prominent experts since the very early 90s...

Not at the moment, but my worry is that there will be psychological/psychosomatic/functional disorder studies done by ME/CFS Lines in a next phase, during the use of, or after they have used, the current ZonMw funds to get set up. The ZonMw text of Rosmalen's project speaks of training...

Regarding general scientific progress I agree, however this is more than that, it's a narrative war where these produced 'subjective (psychological) assessments' are used to secure money and interests, and to keep the created controverse alive that keeps the psychiatric narrative afloat. a) I...

Am I missing something or is this weird and a problem: So... the group from Lifelines presented as a solid ME/CFS research cohort: is based on self-report is diagnosed as having "CFS" by the biobank itself (based on the symptom of "fatigue", using Fukuda & -optionally?-a psychiatric...

Yes, indeed. But I'm annoyed at how she consistently is unclear about that, using laguage that, if you're not paying attention, could be taken as that she's up to speed, using the criteria the CDC is using now. Take the sentence "identification will be done according to the diagnostic criteria...

It sounds like a good letter @Solstice :) ZonMw has tweeted today: " "The announcement of the awards in the ME/CFS program has generated a lot of reaction in recent days. At the moment we are collecting all questions, we will respond as soon as possible." Personally I'm curious about how...

This really is my last post here today, I've blown my brain up and my elderly cat needs snuggles. A hug to everyone who needs it, this really is crap. (I must say though that not everyone agrees that this is an unacceptable scandal: I see people on Twitter who think it's just a matter of...

I don't know who else is involved yet, but here is the google translated post from ME Centraal: A success or a disaster? (mecentraal-wordpress-com.translate.goog) It seems like the NMCB consortium has issues as well. :( Objections can be sent to ZonMw (preferably both via mail ànd email, but...

Give me a mo, I'll try to make it available in english

Thank you. And yes it does. The question is what to do with it though, I'm not in contact with any of the people involved, I'm posting here because of my own digging and because I want people abroad to understand Rosmalen and how this is not just a matter of not trusting one person because they...

Ok, timeline time. This doesn't have to be significant, but it looks like it might be and it's certainly curious: I noticed here that the questionnaire used to include a patient as having CFS in Lifelines, following Vercoulen/Bleijenberg 1994, was altered to something new on 21-09-2020...

I also misunderstood the situation a bit, and I'm actually more worried about it now. The NMCB goal seems as far as I can tell fine: they want to realise a national infrastructure for biomedical research into ME and set up a national patient cohort and biobank. They explicitly state that they...