Dutch Minister of Care letter to Parliament re ME/CFS

You need to click on the "download" button and the translated letter will come up.

https://translate.google.com/transl..._regering/detail?id=2018Z23443&did=2018D59089


Letter from the Minister for Medical Care

To the President of the House of Representatives of the States General
The Hague, 11 December 2018

The Health Council advises:

- More scientific research into ME / CFS with emphasis on the substantiation of the diagnosis, the development of the disease and the treatment of ME / CFS.
- Train healthcare providers about ME / CFS and what they can mean for patients with the disease.
- The opening of an outpatient clinic for ME / CFS with associated care networks and research groups.
- Medical assessors in the context of disability insurance, the Social Support Act, the Long-term Care Act and the Participation Act point out that ME / CFS is a serious illness that is accompanied by substantial functional limitations and the choice of a patient for no cognitive behavioral therapy (CBT) or exercise therapy. do not have to be regarded as 'not adequate recovery behavior'.

 

If the Netherlands made a concerted effort on research that would amazing. I really hope that happens.

 

Press release in Dutch from 3 Dutch charities/groups:
https://mecvs.nl/wp-content/uploads/2018/12/Persbericht-reactie-op-brief-minister-def.pdf

 

Facebook post from Millions Missing Holland

Code:

https://www.facebook.com/MillionsMissingHolland/posts/950412161815415

 

I believe this news follows on from that posted above.

https://mecentraal.wordpress.com/2020/06/30/big-and-a-lot-and-hopeful-news-from-the-dutch-me-front/

https://twitter.com/user/status/1278014947759476738

 

Sounds good but it's hard to understand the details (translation problems?)

I love the part where it says no BPS research.

 

Sounds... good? Actually sounds great. Hope this passes! It's not a massive budget but relative to the population this is significant. Dutch GPD is ~22x less than US at PPP, so this would be equivalent to $53M (with a bit extra for currency exchange), about 4x what is allocated in the US. Except some of that in the US is wasted and it lacks coordination, so if this budget is within a coordinated agency this would go much further.

The need for international cooperation is important. It isn't just because of denial that lead there to effectively be no national expertise on the matter, it's that this is a complex issue that requires international cooperation, sharing of data and resources and working closely with the patient population. This is important and the model to follow. Although so far unimpressive, the ICanCME network was built on the same premise of building up international collaboration at all stages.

I fully expect the very loud people who have been screaming for academic freedom to welcome this as positive news. They have been very vocal about the need for all avenues to be researched, after all. Just kidding, they will be pissed because they are ME deniers but I'm still curious about whether they will hold that anger or just come out and loudly denounce the very thing they pretend to care about. BPSers are doing all of this strictly for themselves and here their interests conflict with ours, we know which way they will scream.

 

I was able to have a look and I must say it does look really good.

They seemed to have taken their time to develop the research thoroughly. An advisory group was formed with several patient representatives and biomedical researchers (some from outside the field). They also did a survey among international ME/CFS experts on methods and best strategies to do ME/CFS research. This has now resulted in this proposal that is being submitted to the relevant ministries if I understand correctly. Let's hope they act on it. Correction: just noticed that this is an intermediary report and that in next steps this proposal will be tested among Dutch researchers and practitioners.

Not only does this research agenda propose a large investment (20 to 29,5 million euros in total) but it also provides a long-term strategy (over 10 years) with a focus on biomedical research.

Something that I find rather important: the proposal stresses that the research agenda should focus on an epidemiological well-characterized patient cohort that has been properly selected. The idea is then to test these patients thoroughly, store their samples and follow them up over time. The agenda proposes to use a large sum (2,5 million) to develop this patient cohort and the research infrastructure to study them.

If this research agenda gets adopted, it could be a blueprint/example for other countries to follow.

 

https://twitter.com/user/status/1278059721665253376


https://twitter.com/user/status/1278060125442408448


https://twitter.com/user/status/1278060354950647820