News from The Netherlands

1) When I read it yesterday it was a real "Pinch me, is this happening in The Netherlands?" moment. Really encouraging.

2) Knoop claimed ReCOVer found CBT helped for PEM.

See slide and discussion here (the thread on ReCOVer)

 

ME Centraal just posted a participant report on the Long Covid symposium that was held on 19 October in Amsterdam.

GT translate version (translation not great):A Feast of Recognition (mecentraal-wordpress-com.translate.goog)
Original: Een Feest van Herkenning (wordpress.com)

I think this section makes a nice read (attempt at better translation):

 

Might have finally reached a stage where they fucked to many of us over. I think that's also where Knoop went wrong. He went after LC-patients with harmful treatments, a group that is composed of a lot of physicians, nurses etc. who were impacted during the pandemic. He used to be up against a couple of scientists in NL, now he's put himself up against dozens.

I'm thankful that he in his hubris tried to claim LC for his cabal because it exposed to a much larger group the sham that is CBT/GET for any physical disease. Which in term seems to have spurred on the biomedical researchers in debunking their theories and finding the biomedical origins of a number of diseases.

 

This after-report is somewhat encouraging and it's nice that this person apologized, but at some point they have to understand that this is a serious behavioral failure and that it needs to be rooted out and fixed entirely. Professionals just don't behave this way, don't think this way. Hell, well-adjusted children don't behave like this. Especially the "could do nothing with them". What is even up with that way of thinking?!

This is learned misbehavior, and it's the root cause of the failure. Medicine doesn't seem to do root-cause failure analyses, or they are unable to do one when they are at fault, but until this failure of reasoning is addressed, failure like this will continue to happen.

The idea behind professionals isn't just about training, it's about responsibility and accountability, and both have failed completely here.

 

Could do nothing comes from, ik kan er niks mee. Meaning he simply doesn't have a method for treating. The bit about calling us nutters and ridiculing us behind closed doors is very very damning about the overall attitude though.

 

I've been watching the Polybio and Swedish symposium's for a bit and it does not only seem to have given us a boost but also diseases like SLE, Lyme, FM, GWS and a bunch more. I see IBS getting mentions too, I think they were more or less in the same boat as us with regards to attitudes and treatment options.

There seem to be a number of entities emerging that want to study post-infectious disease or diseases with low-grade infections going on as a whole. If I'm distilling the info correctly there seems to be evidence of similar if not the same patterns in a multitude of diseases, just with very different expressions.

 

ME CVS Nederland I doubt is gonna sign either way. They sometimes pay lip-service to biomedical stuff but it's a BPS-outfit as far as I know.

https://mecentraal.wordpress.com/2023/06/12/boekje-open/

More about that in the link.

From reading mecentraal I also got the following organisations:

-#millionsmissingholland

https://www.facebook.com/MillionsMissingHolland/?locale=nl_NL

https://twitter.com/MMissingHolland

-Steungroep ME en Arbeidsongeschiktheid (this one is specifically aimed at helping with disability claims I think)

https://steungroep.nl/?view=featured&start=46

And possibly ME Den Haag could be interested:

https://www.facebook.com/GroepMEDenHaag/?locale=nl_NL

 

Grant for PhD researcher Braeden Charlton

https://www.amsterdamumc.org/en/research/news/grant-for-phd-researcher-braeden-charlton.htm

eta:
PhD Immunology and infectious diseases for studying the cause of ME/CFS
Unraveling the biomedical cause of the enigmatic disease ME/CFS

https://carriere.nrc.nl/vacatures/v...-the-cause-of-me-cfs-amsterdam-553769-11.html

 

Indeed (the price just for your PhD student to have an office desk is already beyond CA$20.000 per year in NL), these are two different things. Jeroen den Dunnen has funding for a PhD position (possibly as part of his ME/CFS grant by ZonMW) which he is now advertising www.twitter.com/DrDenDunnen/status/1722168070074957968, and it seems Braeden Charlton got a small extra grant.

 

https://carriere.nrc.nl/vacatures/vacature-phd-position-in-me-cfs-project-utrecht-556154-11.html

 

Trial By Error: Dutch Survey Respondents Rate GET/CBT as “the Worst” Approach, Per New Report

"A survey of more than 1500 patients in the Netherlands with a diagnosis of ME, CFS or ME/CFS rated graded exercise therapy as “the worst” interventions, according to an article on the site of the ME and Disability Support Group, while “explanation and advice about the importance of lying down to prevent worsening of complaints, and about distributing energy and rest (pacing), was most appreciated,” (Translations in this post via Google Translate.)

The survey was conducted as part of the process of developing a set of national ME/CFS management and treatment guidelines. According to the article, these and a few other findings about the impact of the illness were released during a recent meeting in Utrecht at the Knowledge Institute of the Dutch Association of Medical Specialists, which is involved in the guideline development process."

https://virology.ws/2023/12/06/tria...get-cbt-as-the-worst-approach-per-new-report/

 

Do we know more about this survey, the report and its context? The results could be useful in communicating with Cochrane the harm they are causing. It's similar to the survey NICE commissioned, as well as all the other evidence gathered in the (Member only) thread on Published evidence of harm from exercise therapy.