EU Petition 2019 - opportunity to lobby for funding for ME research

I agree with what @Andy has said i.e. basically the situation is an organised mess.

I think part of the reason reflects Vicky Whittemore's statement at the Invest in ME Conference (2018?) i.e. the biomedical pathway hasn't been identified therefore there are no drug targets etc. So anything goes; Alain Moreau (University of Montreal + OMF) uses the example of the Indian parable of the six blind men and the elephant to illustrate the current position re cause of ME - check it out online.

For all that there are some notable research groups e.g. OMF - you've probably heard of Ron Davis (his son is very ill) and organisations which fund research e.g. OMF & Solve (seems to change but it's either Solve ME/Solve CFS/Solve ME/CFS --- even the names ME/CFS are contentious!). Also, I'm slightly biased but ME Action are a lobbying organisation; they have a small presence in the UK and (slightly smaller) in the EU - consider volunteering - here's an example of their lobbying https://www.meaction.net/2019/10/03/me-activist-testifies-before-eu-parliament/

There's a bunch of free to view videos e.g. this year: September - OMF Conference/June - Invest in ME Conference (London)/April - NIH Conference/March - EMERGE Conference. There has been some controversy (understatement) regarding the psychological approach adopted in the UK & Denmark (and other places).

You have a skill set -- don't be shy about using it & your difficulty in grasping this mess, is yes because it's a mess.

 

That's great, thanks @Andy! I'll have a look at some of that tomorrow.

It's flabbergasting that there is currently so little coordination between so many organisations which have a common interest. However, it's good to hear that the CMRC have a new focus onto the biomedical. Hopefully that will lead to an agreed research strategy as you suggest. GWAS is a genome wide association study?

Sorry for taking the thread off course a bit. My reason for asking the question was, having written to the MEP's in support of the petition, I feel like I need to understand the situation a bit better. Thanks for taking the time to respond in detail.

 

Yes, that's right.

 

@FMMM1 thanks. Between your post and Andy's I've got some homework for the coming week.

 

Here's a little more detail @strategist:
The four main EUROMENE working groups:
Epidemiology,
Biomarkers,
Socio-economic,
Clinical,
are due to make recommendations next February/March and EUROMENE will then lobby regarding these [https://mecfsconference.org.au/videos/eliana-lacerda/ - Time approx. 11.30 - end (17.39)].

@Michiel Tack

By the way - great bird logo!

 

Before the talk by van den Brink, I wrote to many members of the European parliament. One of them, Irina von Wiese, responded. Some of what she said seems important: she said that she had received many letters about this (she represents the United Kingdom) and that the budget of the EU will come under scrutiny by European parliament. That is presumably a reference to the multiannual financial framework. Reading between the lines I think that this is once again a sign that there is the possibility of specific funding for ME/CFS research although they can't promise it. She also said that she will advocate for research funding.

Unfortunately Brexit might cost us this advocate.

 

Yes, I had a very welcome email from Irina von Wiese. You have described the situation very well i.e. we're discovering people like Irina who are keen to work with us (people with ME/family members) to deliver EU funding for biomedical ME research. Unfortunately I also think you're also correct about Brexit!

 

not sure how this fits in:

http://www.europarl.europa.eu/doceo/document/E-9-2019-002599-ASW_EN.pdf

 

Thanks @Sly Saint

The reply from the Commission is disappointing --- let me tell you about the commercial (lactobacillus) probiotic the EU Commission has spent public money developing! It's not just your ordinary (lactobacillus) probiotic yogurt!

As per a previous post "Indole propionate (a neuroprotectant) is made by a bacteria (Clostridium) in your gut; however, in people with ME this bacteria is missing." So even if the EU Commission had funded the development of a probiotic, containing a clostridium bacteria, i.e. which produced indole propionate, then that would have provided more hope to people with ME---. Hopefully I'm wrong!

There's a bit about funding a:

• project aimed at pathophysiology of chronic pain conditions (including fibro?),
• project aimed at improving diagnostics of the rheumatic and other autoimmune diseases.

Looks like a poor attempt to persuade the public that the emperor is wearing clothes/the EU Commission has funded research which is relevant to the 2 million people with ME!

Here's the EU Commission's response to a previous question "To date, no specific projects on ME/CFS have been supported by the EU ---" [https://www.europarl.europa.eu/doceo/document/E-8-2017-006901-ASW_EN.html]. Maybe they've been on a creative thinking course since this response was issued!

 

This is a BS reply. Could have just said "F off", same message.

 

Sadly I have to agree @rvallee . There are estimated to be 2 million people in the EU with ME (500 million population prevalence approx 0.42%). As those on this site know; many people are house bound or bed bound (approx 25%). This is a totally inadequate response from the Commission.

 

Hi, I've been asked to “prepare a list of research and best practice center on ME in the EU ( Norway is included)".

Obviously there's Jonas Bergquist Uppsala Sweden then there's ----Ideas---

Thanks

 

the new Fatigue Centrum in Berlin (Prof Dr Carmen Scheibenbogen) https://cfc.charite.de/#c30483336
Quadram in Norwich https://quadram.ac.uk/targets/me-cfs/

 

Hmm, are they actually looking for formally established centers, as I'm not sure there are any others. Fluge and Mella in Bergen, Carding and his team in Norwich, Morten in Oxford, Scheibenbogen in Berlin, would be semi-formal 'centers' that I can think of off the top of my head.

 

Thanks. I think many of the EU research grants are multicentre. I assume the idea is that we get a list of research centres (and best practice centres) as evidence that there is actually capacity to do research in the EU. I know what you mean about formal centres -- there are none but there are relative well established research groups. Similarly I assume that e.g. Newcastle University (Julie Newton/Cara Tomas) would be close to a best practice centre re diagnosis.

 

I've heard that they, Newcastle, are finding it hard to find the funding to continue as a team researching ME. For diagnostic best practice, how about the CureME team?

 

I think Ron Davis said that he and Maureen Hanson were discussing opportunities for researchers to pursue a career in ME; they both agreed that you couldn't recommend that a young researcher worked in this area - no funding!

I think Maureen's student finished her PhD in Seahorse cellular energy work and moved on to other research area.

Interesting about CureME https://cureme.lshtm.ac.uk/ - London School of Hygiene and Tropical Medicine (LSHTM) - Eliana Lacerda - Vice Chair of EUROMENE is based at LSHTM.
Didn't even know about CureME! Thanks

 

@Kalliope , @mango , am I remembering correctly that there is a centre in Scandinavia somewhere that offers clinical care that is well thought of by patients?

 

I've only heard positive things about Stora Sköndal just outside Stockholm in Sweden (apart from long waiting lists). They assess, give treatments and do research.
https://www.storaskondal.se/vara-verksamheter/neurologisk_rehabilitering/mecfs-mottagning/

 

Brilliant, thanks