Search results

Thank you Sean, Looking at the dutch original text, I'm still a bit puzzled as to what they plan to do exactly criteriawise, as it's linguistically confusing: They take 2900 Lifelines participants that fall under the '94 CDC criteria for "ME/CFS" (which they don't state, it reads like it's...

Indeed, thank you for the addition. I hate it so much that patients who were eager to participate now have to consider such things, instead of feeling secure and eager to participate in all studies involved - (in the context of a shit situation of course) this should have been exciting and...

That is what I understand is happening. (There are people out there that know the situation much better, though, I didn't really follow it until this week.) As @Grigor mentioned above, ZonMW states on the ME/CFS Lines page: So, they use CDC, just as Lifelines has done all this time (note how...

Rosmalen is leading the project of the first conglomerate (project leader and main applicant). AND she's also 1 of 4 people in the scientific advisory committee of Lifelines, so it looks like the disastrous criteria for "CFS" in their database (self-report until later, CDC '94, Vercoulen's 94...

Thank you very much. I adore archive digging looking for "What happened?", but got a bit self-conscious about posting so much of it, though it's mightily important. I hate that this has to be a big topic on this thread.

Bwahaa, holy shit, the reference for this weird statement: is Warren JW, Clauw DJ (2012). Functional somatic syndromes: sensitivities and specificities of self-reports of physician diagnosis. Psychosomatic Medicine 74(9):891-895 This is not subtle. I'm going to make a cup of tea, as I...

So, in summary, at best the "ME/CFS" patients from Lifelines are selected by a bps questionnaire from 1994 (Vercoulen et al), the 1994 Fukuda criteria (überproblematic in their creation and no PEM needed) and some general questions on fatigue, but for a long time they just relied on self report...

Yeah, this is not good. Lifelines has a wiki (the main page refers to it itself). Here's the stuff on CFS: =cfs']fatigue_cdc [Lifelines Wiki] (page last modified 30/11/2021, old revisions first version 29-09-2020.) =cfs']cfs_diagnostic_score [Lifelines Wiki] (page last modified 22-12-2021...

ME centraal article: Who is Judith Rosmalen? (mecentraal-wordpress-com.translate.goog) " Ms. Rosmalen – as you are well aware – still calls ME CFS, and so firmly asserts here that ME/CFS is not a medical disorder. You spend € 4.4 million on that, which has in fact been collected with blood...

Rosmalen on her patient selection (see link above): But which criteria? And if Lifelines has found "people who were found to have ME/CFS but who had not yet been diagnosed" how did that work exactly? Based on "biomedical and biomaterials from [other] patients with ME/CFS"? Or did people who...

Interview with both consortium leaders, Bosch and Rosmalen: Biomedical aspects of ME/CFS investigated in 2 consortia (www-zonmw-nl.translate.goog)

And to summarize (correct me if I'm wrong @Grigor and @Solstice ) this is the main line of the situation: Two consortiums got awarded grants from the first round of Dutch Biomedical Research for ME/CFS funding . Consortium B (NMCB) contains 6 research projects which will pull their...

(@InitialConditions )

You mean beyond the basics? I put the ZonMw message in Google Translate, from there you can click through english descriptions of the studies getting grants: Eerste biomedisch onderzoek naar ME/CVS van start | ZonMw (www-zonmw-nl.translate.goog) There are two consortia getting funds, and each...

An aside, but I am now temporarily mesmerized by the notion of Lifeline's giant poop container; it is out there, holding 2500 kilos of poop, and it's someones job to do gpc-maintenance. The unglamourous (but important) backstage life of research.

Well, if I may get very cynical for a moment then I'd say that funding population studies based on an area out of the way of major polluters would be a rather good investment for a VVD government unkeen on putting pesky regulations on industry (like pollution limits). (Coincidentally, our...

Depends. Yes, it's pretty horrible that someone with this position gets their project funded out of funds meant for biomedical research into ME. But it also means she can't hide: it's glaringly obvious what her position is, even though she positions herself as a caring researcher. Her history...

I'm not at home in this, but as an aside, isn't it also weird that, according to the article: "Lifelines contains the data of 167,000 people. According to the Lifelines website, those data are representative of the whole population: (…) These findings indicate that the risk of selection bias is...

ps: The dutch originals for translated pages above: prof. dr. J.G.M. (Judith) Rosmalen | Waar vindt u ons | Zoek een medewerker | Rijksuniversiteit Groningen (rug.nl) (Rosmalen RUG staff page with her discipline, expertise and functions) ETUDE: Europees project tegen stigmatisering van SOLK -...

And "developer of Grip eHealth toolbox for persisting physical complaints" is also still part of her professional profile at Groningen University. (Since 2021 she's also leading a project against "stigmatisation" of people with MUS/functional disorders.) Her promotion from council member (when...