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

One possible way the whole thing could fail is by advocates avoiding controversy.

If you don't explain to decision makers that so much research into ME/CFS is bad not merely because of a lack of funding, but also because people are uninformed or misinformed, you risk that money will go into disappointing projects. Just because research is biomedical doesn't mean it will be good. For example, I'm pretty sure you could succeed in presenting a study of graded exercise therapy as biomedical and uncontroversial and convince an uninformed grant application reviewer that this is a worth funding. The EU commission is going to rely on advisors to guide them, but they could turn out be largely ignorant about ME/CFS.

For this reason, @Michiel Tack @FMMM1 I still think it's a great idea to get a trustworthy science advisor involved, like Jonathan Edwards.

I also noticed that the language in the resolution meant to ensure biomedical research funding has been toned down. It now says to prioritize biomedical research.
 
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Trish said:
I'm not really clear what point you are making, but these organisations are in the UK which is no longer a member of the EU.
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Many are in other European countries like Fink and Knoop and the disease doesn't stop at the frontier, it very much affects their work. If big efforts are happening elsewhere it still concerns their work since they make aggressive efforts to spread their work internationally.
 
rvallee said:
Many are in other European countries like Fink and Knoop and the disease doesn't stop at the frontier, it very much affects their work. If big efforts are happening elsewhere it still concerns their work since they make aggressive efforts to spread their work internationally.
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I understand that. I was really just unsure what role you expected them to play in this particular action, since they seem already to get funding for whatever they want to do. Never mind. Just me getting confused.
 
Trish said:
I understand that. I was really just unsure what role you expected them to play in this particular action, since they seem already to get funding for whatever they want to do. Never mind. Just me getting confused.
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Well it's an underfunded stigmatized disease with little awareness, something they have hypocritically pointed out for years despite being the main cause, so this is clearly something they should be celebrating loudly if they were sincere. It should bring attention to their important work on effective treatments and help patients. What's not to celebrate here?

They should be supporting this resolution wholeheartedly, speaking out in support of its potential to help millions of sick people neglected by medicine, lobbying for it. I can't see any reason outside of them being ME deniers who actually don't want there to be any research or awareness. They are presented as the world leaders on the disease and wear that proudly. And they are utterly indifferent to a major announcement, as people whose loud public grievances and pronouncements feature more heavily in their claim to fame than their actual research.

It's just very telling that their real priorities are against there being research and awareness, especially after being so loud about claiming to support that and being champions of our welfare. It shows that no one expects them to actually be experts on the topic, only to claim that expertise. This is their baby. Wessely proudly claims to have brought ME out of the darkness and have worked tirelessly to help us. If that were sincere he should be loud and proud of this. Other than the fact that it will utterly destroy his career, obviously.
 
Copied with permission from a members only thread.

I think we got lucky i.e. to get to that point so early --- maybe only 18 months after I started working with Evelien --- the petition was her idea!

We linked up with people with knowledge of how the EU institutions work who either have a family member with ME/have ME/had to stop working because they had ME and have close friends who still work there. All of that helped.

I've been listening to the BBC Radio 4 programs on AIDS - Big Disease Little Name https://www.bbc.co.uk/programmes/m000jvrf
I found it compelling and it was interesting that one of the tools they used in their lobbying was that there are gay people everywhere - so they always had a network Government, Industry --Media. ME Action had a feature on the successful lobbying for AIDS drugs etc. I can see why they used the analogy @EspeMor By the way ME Action provided all of our key documents we Europeanised their letters to Congressional Representatives (MEPs) US Factsheet (EU Factsheet) --- We also linked up with @JaimeS one of my science heroes (amazing understanding of science, writer and communicator). ME Action are active in the UK @EspeMor is their UK coordinator.

I guess all political systems are weird (at least to me). The way the EU works is that the Commissioners are nominated by their member state and, if deemed appropriate, they are approved by Parliament and the President of the Commission. Commissioner Mariya Gabriel (Innovation, Research, Culture, Education and Youth) has responsibility for Horizon Europe i.e the science research budget. I think I recall being told that logically, given the influence of Parliament i.e. since they have an electoral mandate, and the fact that the resolution was so strongly supported (all the key political groups), then the Commission should note and act on the resolution. @Michiel Tack has published a piece setting out where we are i.e. this doesn't mean a budget allocation by the Commission but it logically means that the Commission should fund research - sorry, haven't read your piece yet Michiel.

I hope that researchers such as Jonas Bergquist, Carmen Scheibenbogen and Eliana Lacerda will submit and application for funding under Horizon Europe --- that's what we need i.e. good quality applications from leading researchers. Hopefully UK researchers can still participate in EU funding programs (Horizon Europe); possibly they will be part of rather than lead in a project.

Hopefully we can now see research funding --- there are an estimated 2 million people in the EU with ME & the economic cost is estimated at 30 Billion Euros/year --- logically research into ME should be funded under the science research program (Horizon Europe).

There are too many people to thank for their assistance (apologies in advance) @Jonathan Edwards gave advice on rebutting the (not unusual) response from uncaring officials (they don't have ME) @Simon M provided insight into publications - his understanding is way above mine and he manages to deliver his wisdom without rubbing your nose in it (I should try to learn that!).

Sorry for the long post (a habit) possibly I should end by saying that -- I've been fortunate to have been part of the EU lobbying group and indeed this forum.
 
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strategist said:
One possible way the whole thing could fail is by advocates avoiding controversy.

If you don't explain to decision makers that so much research into ME/CFS is bad not merely because of a lack of funding, but also because people are uninformed or misinformed, you risk that money will go into disappointing projects. Just because research is biomedical doesn't mean it will be good. For example, I'm pretty sure you could succeed in presenting a study of graded exercise therapy as biomedical and uncontroversial and convince an uninformed grant application reviewer that this is a worth funding. The EU commission is going to rely on advisors to guide them, but they could turn out be largely ignorant about ME/CFS.

For this reason, @Michiel Tack @FMMM1 I still think it's a great idea to get a trustworthy science advisor involved, like Jonathan Edwards.

I also noticed that the language in the resolution meant to ensure biomedical research funding has been toned down. It now says to prioritize biomedical research.
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I have a very basic science background (pass degree standard would be a bit generous in my view); however, we have a member who is a Professor (biology) so we have expertise. Also, as I've posted, I'm grateful for specific advice from @Jonathan Edwards [particularly rebuttal of c--p from uncaring officials] and @Simon M [e.g. putting metabolomics papers by Hanson etc. into context/perspective]. However, it occurs to me that we, i.e. those involved in lobbying for EU funding, aren't involved in setting evaluation criteria (to determine which projects do/do not get funded) the European Research Council (ERC) are responsible for that. Perhaps ERC may ask @Jonathan Edwards to participate; I assume that they invite individuals from specific research areas to participate. Those involved in AIDS lobbying, in the US, in the 1980s, participated in evaluation committees (I think); so it's not without precedent; however, I don't think the ERC works like that.

For me personally there is an element of concern re what research horses they back; however, the pressing issue is that we need leading researchers sucjh as Jonas Bergquist, Carmen Scheibenbogen and Eliana Lacerda (LSHTM) to submit applications.

These are purely personal views @Michiel Tack
 
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rvallee said:
Well it's an underfunded stigmatized disease with little awareness, something they have hypocritically pointed out for years despite being the main cause, so this is clearly something they should be celebrating loudly if they were sincere. It should bring attention to their important work on effective treatments and help patients. What's not to celebrate here?

They should be supporting this resolution wholeheartedly, speaking out in support of its potential to help millions of sick people neglected by medicine, lobbying for it. I can't see any reason outside of them being ME deniers who actually don't want there to be any research or awareness. They are presented as the world leaders on the disease and wear that proudly. And they are utterly indifferent to a major announcement, as people whose loud public grievances and pronouncements feature more heavily in their claim to fame than their actual research.

It's just very telling that their real priorities are against there being research and awareness, especially after being so loud about claiming to support that and being champions of our welfare. It shows that no one expects them to actually be experts on the topic, only to claim that expertise. This is their baby. Wessely proudly claims to have brought ME out of the darkness and have worked tirelessly to help us. If that were sincere he should be loud and proud of this. Other than the fact that it will utterly destroy his career, obviously.
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I'm trying to quote @JaimeS from ME Action here.The key fact is that the BPS approach has failed --- they shouldn't receive any more money -- we know their approach doesn't work.

For me the fact that the PACE authors cooked the books i.e. adjusted criteria to show improvement (with my money - I'm in the UK) shows that they are clever charlatans.
 
Open letter from all four German patient organizations

In response to the European Parliament's resolution on ME/CFS, the four German patient organizations – Deutsche Gesellschaft für ME/CFS, Fatigatio e.V., Lost Voices Stiftung and #MillionsMissing Germany – have written an open letter to the Federal Ministry of Health, the Federal Ministry of Education and Research and the Federal Ministry of Labour and Social Affairs.

The organizations call for a round table of representatives from the Federal Ministries, as well as doctors, scientists and ME/CFS patient organizations to work on the asks of the European Parliament.

The open letter and more infos can be found here: https://www.mecfs.de/alle-vier-me-cfs-patientenorganisationen-fordern-runden-tisch/

 
Excellent German article about the resolution, the open letter by international scientists and the open letter by German patient organizations. Science journalist Torsten Harmsen summarizes the care crisis, the decades of neglect and shines a light on advocacy, progress and recent biomedical research. (Edit: The new DecodeME study is also mentioned, though not by name.)

- German: https://www.berliner-zeitung.de/ges...rn-einen-runden-tisch-in-deutschland-li.89592
- English Google translation: https://translate.google.com/translate?hl=de&sl=de&tl=en&u=https://www.berliner-zeitung.de/gesundheit-oekologie/chronische-krankheit-mecfs-betroffene-fordern-einen-runden-tisch-in-deutschland-li.89592

 
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MERUK:


EU Funding – Response to Commission
Posted on 2 Sep 2020
The European Parliament’s historic vote on 17th June 2020 urging the Commission to transform the ME research landscape was widely acclaimed as a major step forward. The problem being that a Resolution of the European Parliament is not binding and merely a request to the Commission to act.

Not wishing for momentum to be lost, MEP Jordi Cañas Pérez submitted a written question to the Commission on 25th June which sought to query exactly how the Commission would react to the recommendations in the Resolution and what its actions may be. The answer did not bode well as no specific, targetted initiatives were envisaged and no real concrete proposals alluded to.

In light of this, Evelien Van Den Brink, who instigated the initial petition (0204/2019) to the European Parliament which gave rise to the Resolution, responded to the Commission. She has rightly pointed out that Commission’s answer singularly fails to acknowledge the underfunding of ME/CFS research in Europe nor does it propose new initiatives to address this urgent problem.
On the Commission’s view that ME/CFS scientists should have fair access to research funding through the Horizon Europe programme, Ms van Den Brink draws their attention to the text of the Resolution, which not only addresses the difficulties of ME/CFS scientists in accessing research funding but focusses specifically on the rights of ME/CFS patients to have their illness studied in order that effective treatments can be found.
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full article here
https://www.meresearch.org.uk/eu-funding-response-to-commission/
 
Question for written answer E-003909/2020 to the Commission
Rule 138
Kosma Złotowski (ECR)
Subject: Funding for biomedical research into myalgic encephalomyelitis

In June, Parliament adopted by a large majority a resolution calling for increased funding for myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS). It is estimated that around two million people suffer from ME/CFS in the EU alone. Researchers point out that further cases of ME/CFS are to be expected in connection with the coronavirus pandemic, and that patients who have been diagnosed with Covid-19 in particular face chronic fatigue, which can make it impossible to perform basic tasks and significantly reduce quality of life. In view of the above:

1. Will the Commission answer Parliament’s call and allocate additional funding and prioritise calls for projects specifically focused on biomedical research into ME/CFS, with a view to the development and validation of a biomedical diagnostic test and of effective biomedical treatments that can cure the disease or alleviate its effects?
2. Does the Commission intend to allocate additional funding to research into the long-term effects of Covid-19 and the link between the virus and ME/CFS, including in the context of potential subsequent waves of infection, and to an analysis of the actual impact on the European economy of the number of myalgic encephalomyelitis cases in the EU?
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https://www.europarl.europa.eu/doceo/document/E-9-2020-003909_EN.pdf


EN E-003909/2020
Answer given by Ms Gabriel on behalf of the European Commission
(7.9.2020)

The Commission acknowledges that myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS) poses a heavy burden on patients and their families, and recognises that research into new treatments and diagnostics is clearly important to tackle this serious condition. The Commission has proposed a vast research and innovation programme, Horizon Europe1 , with a substantial health component. Indeed, a better understanding of diseases and their drivers, including pain and the causative links between health determinants and diseases, has been identified as one of its priorities. Therefore, scientists and other actors with a specific interest in ME/CFS should have several possibilities to support their research and their goals in improving the condition of patients.

Moreover, following the COVID-19 pandemic, the Commission has put forward an ambitious health programme, EU4Health2 . EU4Health’s objectives include the strengthening of health systems and the sustained implementation of best practices, both relevant for the improvement of clinical management of ME/CFS.

The Commission, together with the Member States, plays a central role in supporting and coordinating research on COVID-193 . In addition to a number of past and ongoing research actions related to coronaviruses and outbreaks, the Commission launched several special actions in 20204 . These actions address epidemiology, preparedness and response to outbreaks, the development of diagnostics, treatments and vaccines. Notably, in its 2nd special call for Expression of Interest to respond to COVID-19, the behavioural, social, and economic impacts of the outbreak response and the establishment of Pan-European COVID19 cohorts have been addressed
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https://www.europarl.europa.eu/doceo/document/E-9-2020-003909-ASW_EN.pdf
 
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