(ME/CFS): Investigating care practices pointed out to disparities in diagnosis and treatment across European Union - Strand, Nacul (EUROMENE) 2019

Sounds reasonable - how do you suggest that "we help shape it -- tell them what we want"?

 

There's already a thread for the EU Petition here https://www.s4me.info/threads/eu-pe...ding-for-me-research.10363/page-6#post-215132

We need to brief the EU Commission, specifically the part that deals with Horizon Europe --- so stuff that would impress the Commission (possibly Commissioner Gabriel - although I doubt she will attend the meeting). EUROMENE representatives will lead; I'm not sure who specifically from EUROMENE.

 

I would write to MEPs if I could tell them exactly what I'm actually asking them to do. I want them to attend some meeting and support a proposal. What meeting, what proposal? Where can they learn about this so that they can decide whether this is a sensible proposal or not? They will not spend time on vague half baked ideas.

 

Derek P is sound as a bell as are the Biobank team representatives. Looks to me a case of good intentions being allowed to stray off piste......

Isn't this an Invest in ME initiated project?
If so, why are they not knocking this into shape if there are concerns?
Perhaps they are behind the scenes....?
But was not this the approach, to get things going with the hope that it would be all sorted in the wash with CMRC...?

 

Deep engagement with patients in order to shape a country's management recommendations is exactly the sort of thing for which EU funding could and should be sought, especially given that it's very difficult to shoehorn projects like this into many current national funding setups.*

It's not an easy process to manage, and it will vary according to culture, infrastructure, and current practice, but the EU can be particularly good at enabling work like this.


* I was discussing the idea some years ago, and at the time I thought that the Arts & Humanities Research Council was – bizarrely – possibly more likely to fund this kind of work than NICE.

 

EUROMENE was invented by Derek as a talking shop to raise the level of research dialogue and collaboration. It was reinvented when Uldis Berkis managed to get a grant from the EU to have meetings and develop consensus statements. It is not the IiME EMERGE idea.

I am all in favour of having an European talking shop and useful collaborations have been facilitated. The biggest downside of EUROMENE is the need to produce consensus documents just for the sake of justifying funding to hold meetings to produce consensus documents. There is a major element of going round in circles. On the other hand the process brings people together with a common purpose, which I think lowers the level of unhelpful competition that otherwise tends to dominate science.

I worry a bit about data papers being produced 'on behalf of EUROMENE'. I think that makes it look as if EUROMENE is itself a research group. It isn't.

 

Entirely reasonable.

Currently others are making arrangements for a meeting with the EU Commission (bit responsible for allocating budget priorities); specifically the bit that determines priorities for Research - Horizon Europe - Director-General Jean-Eric Paquet. EUROMENE will nominate one, or two people, who (in effect) will lead at the meeting. The aim is to have the meeting at the end of January 2020. Time is very short as the budget priorities (for the entire Parliamentary mandate?) are set in April 2020 - so by the end of April 2020 it will be too late. The idea is to get funding for diseases like ME, which affect a large number of people (2 million for ME), which cannot currently access EU funding since the underlying cause of the disease is not known [I guess another candidate for funding under this approach would be Lyme & fibro].

So the key people to influence are the Commissioner, with responsibility for Research (Horizon 2020 - now Horizon Europe) Commissioner
Mariya Gabriel, and the Parliamentary Committee which scrutinises Commissioner Gabriel's proposals regarding research etc. -
Committee on Industry, Research and Energy (ITRE).
@Mike Harley any contacts in Bulgaria?

Evelien (the petitioner - Petition No 0204/2019), and I, wrote to all 600+ MEPs in the summer i.e. asking them to support the petition.

We have been advised to find an "MEP champion" i.e. someone to speak on behalf of ME in the EU. I'm sure that it would also be useful/necessary to have wider support i.e. from other MEPs.

So perhaps you could ask your MEP/s to write to the key decision makers i.e. Commissioner Gabriel, and ITRE Committee/Committee members, asking for funding for diseases like ME, which affect a large number of people (2 million for ME), which cannot currently access EU funding since the underlying cause of the disease is not known.
I assume you could highlight the benefit that ME research could have both to the 2 million people with ME in the EU, and the estimated 1 million with Lyme disease, and (X million?) fibro - since these appear to be related diseases.

I'm not sure we need a bunch of MEPs to attend the meeting with the Commission i.e. other than the "MEP champion".

Consider emphasising that women are predominantly affected by ME - 75% according to this - https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-014-0167-5

see also https://www.cdc.gov/me-cfs/healthcare-providers/presentation-clinical-course/epidemiology.html

The new President of the Commission Ursula VON DER LEYEN seems to be emphasising gender equality - does this extend to equality in funding diseases which predominantly affect women? https://twitter.com/user/status/1149003529480282113


In terms of research, the EUROMENE speakers(s) will deal with this at the meeting with the Commission - I personally favour research to identify biomarkers (indicators of the underlying disease cause, if I understand correctly) e.g.

• biomarkers in exosomes - https://www.sciencedirect.com/science/article/pii/S0889159119307627
• Karl Morten submitted an application to MRC regarding a metabolic study (wasn't funded);
• looks like Chris Pointing's GWAS study may be funded by MRC (& NIH?);

so there are research areas which could be funded.
@Simon M


Consider joining #MEAction European Union (EU) or UK
@EspeMor

 

Thanks for the clarification! I am on acronym overload it appears......

 

@FMMM1 thank you. To answer your previous question, I think we can influence EUROMENE just by communicating with its members. If it was necessary we could also create a petition (in a situation where for example opinion within EUROMENE was divided between GET or no GET, but I hope that will never be the case).

 

Is there mileage in us contacting Euromene, either collectively or individually, with our positive comments that survey was undertaken, but our strong rejection of those current guidelines recommending CBT or GET as there is no reliable evidence base for either and substantial support for them being potentially harmful?

Harmonising guidelines should only happen when there has been more research into ME and when there is consensus on what constitutes good practice.

 

I'd be inclined to contact the decision makers (EU Commissioner Gabriel + ITRE Committee + MEP/s) asking what you want --- ring fenced funding for ME --- yes copy your request to EUROMENE.

I'm not sure what the scientific approach to lobbying suggests but maybe it's better to focus on what you want --- biomedical research -- rather than focusing on what you don't GET --

Edited

 

This MEP responded to our letters regarding the petition - Eleonora Evi Italy
So you might consider contacting them --- additional MEPs would also be good!

Anyone else in the EU who wishes to contact MEP/s then I can send details of those who responded.

 

Another EUROMENE-article that seems a bit worrying titled "Effects and patient's experiences of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome - a scoping review from the EU-Cost group EUROMENE network". Not published yet, but it was presented at a recent conference in Norway. Slides from presentation are available here https://www.s4me.info/threads/norwa...e-nov-25th-26th-2019.11827/page-2#post-224971

 

The presentation slides aren't good. Not much substance other than "resistance to psychological treatments" being an imaginary barrier to them magically working. They don't work because we don't want to get better, implied but still clear. Tripe.

If that's what EUROMENE keeps doing, hard pass.

 

This is probably because of Strand being an author.

I will try to communicate with EUROMENE on this, as I think it's unacceptable to allow someone to promote controversial treatments based on junk science.