Members of the European Parliament call for more funds for research into ME/CFS

Link to the article https://www.europarl.europa.eu/news...-more-funds-for-research-into-complex-illness

 

This is very good news. Huge thanks to @Michiel Tack and others who’ve helped the bring this about. (Not sure which other members of European ME Coalition are on here.)

 

Made a Twitter thread:
https://twitter.com/user/status/1273562311547027458



The resolution describes ME/CFS as a “complex, highly disabling disease” and a “hidden public health problem in the EU”. It, therefore, "calls on the Commission to commission a study assessing the overall social and economic costs attributable to ME/CFS within the EU.”

The resolution notes that approximately 2 million EU citizens suffer from ME/CFS. It writes that "there are still no established biomedical diagnostic tests for ME/CFS, nor are there any EU/EMA-approved treatments." The resolution also writes that "research efforts on ME/CFS remain rather fragmented and coordination of research at EU level is missing.” “To date no specific projects on diagnosis/treatment of ME/CFS have been supported by the EU Framework Programmes for Research and Innovation.” Therefore the resolution (and this is probably the most important part) "calls on the Commission to allocate additional funding and prioritise calls for projects specifically focused on biomedical research into ME/CFS."

The resolution makes some other important recommendations. For example, it requests funding to ensure “appropriate and improved medical education and training for health and social care professionals working with ME/CFS patients.” Finally, the document invites both the commission and member states “to launch information and awareness-raising campaigns among health professionals and the public in order to alert the population to the existence and symptoms of ME/CFS.”

Many thanks to all the ME/CFS patients and carers who have helped to make this possible by signing the petition and supporting the resolution. It's sad that we have to do so much ourselves to make some progress but I think today shows that together we can make a difference.

You can view the text of the ME resolution that was adopted by the EU parliament here: https://www.europarl.europa.eu/doceo/document/TA-9-2020-0140_EN.pdf

 

What comes next?

Does the resolution create an obligation for the EU to now find a way to realize the objectives expressed in it?

 

Fantastic news, and brilliant job by those who have worked for this.
What a superior voting result! Poor 4 people.

I am surprised that there are 2 million people with ME/CFS in EU. It's about time that biomedical research against ME/CFS is taken seriously.

 

In Belgium, the news about the ME resolution in the European Parliament was picked up by the main public media.

There was an article that mentions the open letter and the petition by Evelien Van Den Brink: https://www.vrt.be/vrtnws/nl/2020/0...raagt-meer-geld-voor-biomedisch-onderzoek-na/

And also a short piece on public radio (the broadcast was unfortunately not very balanced as it only asked the opinion of a psychiatrist who is prescribing CBT). https://radio1.be/programma/de-were...rmoeidheidssyndroom-nog-steeds-onbekend/21381​

In The Netherlands, there was also a segment on Radio 1 where a patient (Carolien!) and Professor dr. Jan Willem Cohen Tervaert were interviewed. https://www.nporadio1.nl/nos-met-he.../60430-2020-06-17-meer-geld-voor-de-ziekte-me

if you notice any coverage in important news outlets in other countries, feel free to post them here so that we get an overview.

 

I'm no expert in this but I think it will still be hard work to make sure the commission follows up on this resolution. There are some MEPs who seem willing to follow it through, so I'm hopeful that we can evetually increase funding for ME/CFS research in Europe. It will probably also require that ME/CFS researchers form collaborations to submit some high-quality applications.

https://twitter.com/user/status/1273549610947149825

I think it's just an extrapolation of the 0.4% prevalence estimate reported by Jason et al., a rough guess.

 

Article by the European ME Coalition (EMEC) on the vote yesterday: https://europeanmecoalition.com/european-parliament-adopts-me-resolution/

 

More coverage in Dutch media:

https://www.nd.nl/nieuws/varia/978147/eu-parlement-meer-geld-en-onderzoek-naar-vermoeidheidssyndroom

https://nieuws.nl/algemeen/20200618/eu-parlement-meer-geld-en-onderzoek-naar-vermoeidheidssyndroom/

https://www.hartvannederland.nl/nieuws/2020/patienten-opgelucht-onderzoek-me/

 

I'm glad to hear that this went well!

So how do you make it an obligation? Should a petition call for specific actions like funding equal to 1% of the disease burden by e.g. October 2020? Or maybe something with Horizon 2020? I mean when 676 MEPs explicitly agree that there needs to be more funding for ME/CFS, then it shouldn't be too hard to push things a bit further. I know there's a sales technique there somewhere...

Do you have anything to say on this @FMMM1?

 

Is this the part where we need concrete proposals on how to best spend the money?

 

Big bravo to all who made this happen.

Curious: did the 4 against and 8 abstentions have anything in common, e.g. from the same country?

I imagine follow-up is essential and needs to take the form of specific demands. I hope somebody knows how the system works - I don't - and how to extract the biggest possible benefits from this resolution.

 

Thank you to everybody involved!

Reactions from Germany so far:

- No media reports so far, although press releases were sent out.

- Comment by a German member of the European Parliament (posted on her website and sent out as press release):
https://www.katrin-langensiepen.eu/de/article/89.me-cfs-chronisches-erschöpfungssyndrom.html


- Posts by members of the German Bundestag:



https://twitter.com/user/status/1273858476909957125



- Article by the German Association for ME/CFS: https://www.mecfs.de/europaeisches-parlament-verabschiedet-resolution-zu-me-cfs/

It also includes what kind of political impact a resolution generally has (automatically translated):

 

@Ravn that's a good question and piqued my interest. The results are here (pg 174): https://www.europarl.europa.eu/doceo/document/PV-9-2020-06-17-RCV_FR.pdf

Votes against: Identity and Democracy Party x2 (de Graaff, Madison), Non-inscrit [not members of a main EU party] x2 (Radačovský, Rookmaker)
Abstination: Identity and Democracy Part x4 (David, De Man, Hakkarainen, Vandendriessche), Non-inscrit x1 (Kolakušić), European Conservatives and Reformists x1 (Jurzyca), Renew Europe x2 (Loiseau, Trillet-Lenoir).

It'd require a bit more Googling that I'm upto right now to see if there's a national skew, but given the number from those parties that voted in favour then it isn't likely to be a party thing.

 

Not yet seen any thing here in the British press, but not surprising given our press’ reluctance to report anything positive about the EU or at times it feels ME.

However the ME Association have posted on it, see https://meassociation.org.uk/2020/0...r-research-into-complex-illness-19-june-2020/

 

Wikipedia (see https://en.wikipedia.org/wiki/Identity_and_Democracy_Party ) describe the Identity and Democracy Party as nationalist, far right and Eurosceptic, which might explain why their members make up half of those that voted against or abstained on this issue.

 

I just can't leave a job half done!
Against:
Madison Estonia
de Graaff NL
Rookmaker NL
Radačovský Slovakia

Abstination:
De Man BE
Vandendriessche BE
Kolakušić Croatia
David Czech
Hakkarainen Finland
Loiseau FR
Trillet-Lenoir FR
Jurzyca Slovakia

 

The total silence from the BPS brigade says a lot. They have been howling for years that research should not be stifled by interest and academic freedom demands that all research paths be pursued so they should be all in favor of this, enthusiastic even. They keep saying more research is needed more research is needed. In many of their texts they write about the stigma and the lack of awareness (which they are responsible for).

This is a call for more of all of that. This is a turning point that could offer many funding opportunities and progress. Even as major rehabilitation services are being prepared based exactly on their research. They are eating their cake and selling it for profit, never having to account for any claim they have ever made.

The "thought leaders"? The associations like BACME? The specialized units like the new one at KCL? All silence. All offer no support or interest whatsoever to a call for more research, more understanding and more awareness of the disease they have claimed for years to be the only ones actually doing something to help. They keep demanding trophies for simply trying and in a critical moment where their decades-long effort meets a challenge smack in the middle of their alleged expertise, what do they do? Nothing at all.

The silence is deafening. They can't even pretend to be be mildly in favor of this, they prefer sulking in silence because no one will find that odd, because everyone knows they are not in favor of any of those things, that in fact more research and awareness guarantees the inevitable obsolescence of everything they built.

I really REALLY would like for an effort to ask them about it and publish it on record. Perhaps as well their intent as it relates to COVID, which they should technically be all over as THE experts on the topic, elevated for years as the people who know what's this is all about. In fact there have been several studies and experiments lately trying out early intervention. This could not be more relevant to their pretend expertise. And yet no one seems to even bother asking their opinions with that framing in mind, as THE topic experts who have controlled everything for decades.

Because they are charlatans and frauds. Possibly the worst in the history of the profession, accounting for how late they continue to push blatant quackery and lie, lie, LIE so much about it.