To clarify: the Zorginstituut Nederland has called guidance on ME and CFS a priority. They haven't said anything about CBT/GET, nor are they currently planning to initiate anything themselves. With regard to ME, the ME Vereniging Nederland still considers the development of a diagnostic protocol to be both urgent and feasible, as asked in the 2009 petition by Stichting ErkenME. The new NICE guideline isn't of any help to us. It's not about ME, and says nothing about diagnostics anyway. It could be of some help to others, but that is not for us to judge.
This seems rather optimistic. The government has rejected earlier proposals. Further the ZonMw agenda proposes to look for the cause of ME/CFS, while the government has quite recently stated that ME/CFS should be viewed as an umbrella term. I.e., ZonMw is chasing a fata morgana. The researchers aren't known experts in this field, so one can safely attribute much of the proposal to these representatives. Involved parties include the ME/CVS-Stichting Nederland, the Stichting Steungroep ME en Arbeidsongeschiktheid, the ME/cvs Vereniging, and the Groep ME Den Haag. None of these are ME organizations, and no ME patients are involved in this development. Mirande de Rijke (not her real name) dropped out years ago. In fact, the ME Vereniging Nederland has declined participation because it was never about ME. We have our own research agenda, which is very different.
Part of the symposium seemed to consist of an attempt to put LongCovid and especially CCI into the ME/CFS basket, following similar attempts in the US and the UK. Other than that, the speakers had no common ground whatsoever, and it remains unclear why they were selected to talk. There was no discussion of the proposed ZonMw agenda. Most questions from the audience went unanswered.
Guido, can you tell me what you think is the best description of true ME? Moderator note: This post has been copied and following posts moved to this thread: Diagnosis of ME and the use of the labels ME and CFS.
This post has been copied this thread where it is discussed: Maximal handgrip strength can predict maximal physical performance in patients with chronic fatigue, 2020, Jammes et al
Google translated. The Minister of Medical Care and Sports, Tamara van Ark, wants to commission ZonMw to conduct a research program on ME / CFS. This is stated in the letter to Parliament that Van Ark sent on 23 March. € 28.5 million is available for the program. The intended duration of the program is 10 years. In doing so, the minister is adopting the most important recommendations from the ME / CFS research agenda. This agenda was presented to the Minister of Medical Care and Sport (VWS) on 23 December 2020. The research agenda has been drawn up by a steering group consisting of representatives from patient organizations, practitioners and scientists. ZonMw facilitated the steering group and used its knowledge, experience and network to ensure that the process runs smoothly. Article in Dutch, https://www.zonmw.nl/nl/actueel/nie...da-mecvs-over-en-geeft-opdracht-voor-onderzo/ Article in Google Translate, https://translate.google.com/transl...da-mecvs-over-en-geeft-opdracht-voor-onderzo/
Wonderful and really important news - thank you to all who have made this happen ZonMw is The Netherlands Organisation for Health Research and Development From Michiel's twitter thread above (which is worth clicking through to): 2) The 2018 report by the Dutch Health Council, the Ministry of Health and the ZonMw steering committee expressed have all expressed their wish that the research programme for ME/CFS concentrates on biomedical research. 3) The agenda stresses the importance to develop a representative and epidemiologically well-characterized patient cohort. Special attention will be paid to the inclusion of young patients and the severely ill. 4) Another important point is replication: the documents says that “a lot of foreign research into ME/CFS has not or has not been sufficiently validated”, therefore replication studies are considered important.
Here's a Google translated version of the letter by the minster of Health Tamara van Ark. I'm not sure what she means by including different disciplines. That's a bit worrying.
There's some discussion about an article 'Far too much advertising is being done for Long Covid' on the website of Syp Wynia, 'Wynia's Week' posted by @MatthiasRiem here: BPS attempts at psychologizing #LongCovid That 'a Dutch youth magazine for recreational mathematics' exists says something admirable and interesting about Dutch culture - just a shame about the views of its editor. I thought Matthias' point about the Long Covid name not translating well was worth posting on the regional thread too.
Found this article: Many corona patients suffer from brain problems: 'Is this still going to go, I sometimes wonder'. https://www.ad.nl/binnenland/veel-c...it-nog-wel-over-vraag-ik-me-soms-af~a7d7b169/ https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://www.ad.nl/binnenland/veel-coronapatienten-houden-last-van-brein-gaat-dit-nog-wel-over-vraag-ik-me-soms-af~a7d7b169/ At least a tiny few are showing ability to learn from experience, but the doublethink problem with how popular psychosocial stuff is and how to reconcile it with LC is obvious. Experts try to guide patients with their complaints. At the same time, they fear that some of them will continue to face problems. "We expect that, just as with Q fever, a small proportion of people will remain ill," says Annemieke de Groot, director of C-support. "Only the number of infected is much larger now, so those numbers will automatically be higher." ... Meanwhile, (para) medics are wondering how all these people can be helped. Initially, says Robert Saarloos, physiotherapist in Oud-Beijerland, the idea was to get the ex-Covid patients back to fitness. That was when corona was seen purely as a lung disease. “We make them fitter, we thought. Then they are less tired. Now I think: I really did something to those people that in retrospect might have been more abuse than treatment. '' ... The doctor sees a parallel with chronic Q fever patients and with people who suffer from concussions for a long time. “They have similar complaints and a disorder is demonstrated in only a small group. We can only help that group. '' Why is Q fever so "popular" in the NL, rather than ME/CFS? Weird. No mention of ME shows how conflicting the cognitive dissonance is. Acknowledging LC means acknowledging the failure of the BPS model, and so far that seems to be considered the worst option. They can't let go of that binky.
According to the Dutch Wikipedia article for Q fever (https://nl.wikipedia.org/wiki/Q-koorts) the Dutch Q fever outbreak that started in 2007 was the largest to date in the world. It is a fairly recent episode of an infectious illness leading to longterm ill health in many and got quite a bit of media coverage in the Netherlands. Also, there seems to be a view that Q fever fatigue patients were mostly hardworking farmers - which supposedly makes them different from ME/CFS patients and somehow more deserving of consideration.
Personally I think it has to do with the fact that QFS has a clear onset. Sadly they do not get proper care either. CBT/GET is what they're getting as well. One thing is that there was an organisation set up called Q-support. Run by one MD called Alfons Olde Loohuis. After years of supporting QFS patients they were going to shut it down but now with the covid-19 pandemic it turned into C-support. Dr. Olde Loohuis is being interviewed a lot so QFS is more often mentioned.
It will be fascinating, the morbid kind, to reconcile all the local manifestations of this. The events that lead to some names sticking in some places, like how Tapanui (sp?) flu is known in NZ, whereas other places know it only generically as some sort of "fatigue" because there is no historical event that captured the concept. Some have that connection to an infectious disease, while other places have none and so there is zero recognition that infections play any role at all. The state of knowledge here is a complete free-for-all. All opinions are well-represented, even though most have zero evidence. I strongly suspect this is more or less the same with sleeping sickness, which is rather well-known but never connected to the broader phenomenon. And then of course there's the question of how many of the people condemned to the horrible psychiatric facilities were actually suffering from something like this. You couldn't cover half this stuff even with 100 PhD dissertations, it would go back centuries and need so much research in historical records. It will happen, though. Just a question of time. And frankly it would be deserving of an entire field of study, a study into mass self-reinforcing failure in the most unlikely of places: expertise. The implications are huge, they go to the very heart of what expertise even is, what with the infinite confidence the deniers show in their beliefs. The very picture of what "confidently wrong" is all about.
Life with ME on the Dutch benefits hamster wheel https://rob-obrien.medium.com/life-with-me-on-the-dutch-benefits-hamster-wheel-2d2f6907250 https://twitter.com/user/status/1405094327899074562
Sad news from the Netherlands where a patient with ME/CFS was denied benefits. He had to go to court in a gurney. https://nos.nl/artikel/2388341-zieke-patient-met-wensambulance-naar-rechtbank-om-strijd-met-uwv https://www.gelderlander.nl/home/do...is~a90a0dd2/?referrer=https://www.google.com/
