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

The petition has been left open by the PETI Committee and they expect the Commission (bit with budget -- Horizon 2020/Horizon Europe) to update the Committee. Here's an extract from the transcript provided by @Michiel Tack

"Dolors Montserrat, chair of the Committee on Petitions: Thank you very much for joining us this morning. You have set out your petition clearly. Having listened to you and heard from the commission and the different political groups, we will of course keep your petition open and continue to work together on research.

We would ask the comission to keep the committee on the petitions abreast of any developments of relevance to your petition, your suffering, your concerns. We will be looking at the upcoming multiannual financial framework; the different groups will be commenting on the budget aimed for research so we will not abandon you. We will work together.

The European commission, the European parliament, the different political groups will work together to support research. We will not close your petition until we can offer tangible help. Thank you very much for joining us here this morning."

The person you are referring to was speaking on behalf of the Commission.

Also, the Commission do issue specific research calls; so I think the spokesperson for the Commission may be using "weasel words". E.g. the Commission may announce a research call (grant funding for research) for "emerging vector borne diseases" yes they haven't named the disease but guess what it's time for Lyme researchers to submit applications!

ME Action supported this petition, as Evelien highlighted in her speech - consider volunteering - contact @EspeMor

 

The multiannual financial framework may be an opportunity for ME/CFS funding.

This is not a medical research program but there is a budget for the broad category of security and citizenship which includes public health.

That category has a budget of about €2.7 billion a year (see table at the end of this document: https://ec.europa.eu/info/sites/inf...ion-amended-proposal-com-2012-388_2012_en.pdf). It's unclear how much of that goes towards public health projects.

I'm also not sure how it relates to Horizon 2020 which is specifically to advance research and innovation (with a budget of €30 billion across a wide variety of cateogies), and to Cost which is how the European Network on ME (EUROMENE) got funded.

Anyway, the funding opportunities exist. We just need to convince them that ME is so neglected that it deserves special funding, and maybe present a proposal on how exactly that special funding would work.

 

Is this something worth writing to our MEPs over? I’m not sure how Long UK will be a part of anything though

 

Just bear in mind that Lyme disease has received EUR 7.8 million for the development of a diagnostic test and EUR 25 million for the development of a Lyme vaccine (treatments) - Commission response to an oral parliamentary question:
"Question six: let me highlight that there is indeed currently very significant funding behind efforts to improve the prevention, diagnosis and treatment of Lyme disease in the EU. The Commission has recently supported research on improved diagnostics that will permit early and accurate diagnosis of Lyme disease through the provision of EUR 7.8 million. It is also worth noting that, in 2016, the European Investment Bank granted EUR 25 million for the development of a Lyme vaccine. Additionally, the Commission has provided EUR 3 million to fund the development of an anti-tick vaccine aiming to protect against all tick-borne diseases in Europe. The remaining two years of Horizon 2020, and in particular its forthcoming calls for research and innovation project proposals, will offer further opportunities to support research on Lyme disease."
[http://www.europarl.europa.eu/doceo/document/CRE-8-2018-11-15-ITM-003_EN.html?redirect]

ME of course received zero:
"To date, no specific projects on ME/CFS have been supported by the EU--" [http://www.europarl.europa.eu/doceo/document/E-8-2017-006901-ASW_EN.html]. Commission response to a written parliamentary question on ME [2017-006901].

So yes money is available for the development of a development of a diagnostic test and treatments -- if not then how come the Commission has already funded these for Lyme disease? @Andy

 

Yes; please write to your MEP, & sign the petition, while you still can!

Dr Vicky Whittemore (NIH) at Invest in ME Conference (2019):
"advocacy groups --- that's what makes the difference -
- when they [elected representatives] hear that, from people with the disease -
- advocates -- telling them [elected representatives] what's needed is really what makes the difference"

 

Wasn't anything to do with me...

A quick Google give this article, https://www.wbur.org/commonhealth/2017/08/11/french-lyme-disease, which contrasts the anti-Lyme efforts in the US and France. A quick read suggests that France take Lyme seriously, which would probably explain why it's getting EU funding.

 

Hi here's a standard letter, i.e. one used in connection with Evelien's petition. You'll find more online e.g. there's one on the ME Action webpage [and other places like the Emerege webpage ----https://emerge.org.au/talking-about-me/#.XZdmZGYUncs].

I'd do what you can now!

Dear xxx,




I would like to bring Petition No 0204/2019 on a request for funding for biomedical research on Myalgic Encephalomyelitis to your attention.




Myalgic Encephalomyelitis (ME), sometimes called Chronic Fatigue Syndrome (CFS), is a devastating chronic disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. It affects approximately two million EU citizens, men, women and children of all ethnicities, ages, and genders. No estimate of the economic cost is available for the EU; however, in the US the direct and indirect economic costs of ME to society have been estimated at $17 to $24 billion annually (Jason et al., 2008) and there are even more people with ME in the EU.




[Insert personal story---]




There are currently no established biological diagnostic (biomedical) tests for ME, nor are there any EU (EMA) approved treatments. There are a number of potential diagnostic tests [Note 1]. Also, two drugs which could potentially be used to treat ME have been identified [Note 2].



However, there has been no funding from the EU Commission to validate these diagnostic tests and treatments.




I request the European Parliament to make funds available for biomedical research into ME i.e. to deliver a biomedical diagnostic test, and treatments, for this disabling disease.




Within Horizon 2020/Horizon Europe there is a great opportunity for the EU to help scientific research into ME move forward. This could also benefit patients with closely related illnesses like chronic Lyme disease and fibromyalgia.




Request:


I request the European Commission to:

• fund research into the development, and validation, of a diagnostic biomedical test; to facilitate the proper diagnosis of ME;
  
• fund research into the development of effective biomedical treatments for ME; and
  
• address the anomalous under funding of ME which is evidently a hidden public health crisis in Europe.
  
  
  Thank you very much for your time and help.
  
  
  
  Yours sincerely,
  
  
  xxxx
  
  
  
  Note 1: e.g. scientists from Oxford University, and Newcastle University, published details of a potential diagnostic test in 2018 [https://pubs.rsc.org/en/Content/ArticleLanding/2018/AN/C8AN01437J#!divAbstract]
  
  
  
  Note 2: copaxone [a drug used to treat multiple sclerosis (MS)] and SS-31 (drug, currently under development, intended for use in a rare genetic mitochondrial disease) [presentation by Professor Ron Davis at NIH Conference in April 2019 - https://videocast.nih.gov/summary.asp?Live=31640&bhcp=1].
  
  
  

 

That’s really useful thanks

 

I wrote to my local MEPs earlier this year, using Evelein's template and some input from Francis and Espe. Only got a response from one unfortunately, James Glancy of the Brexit party ( which was unexpected).
I emailed them all today to bring Evelien's presentation to the committee to their attention.
Personally I think it's worth doing, if you can spare the energy. The more fuss we make to the people who might be able to influence things the better the chance of funding being secured.
What frustrates me is that there doesn't seem to be top level engagement between the charities and researchers to pursue this themselves, or maybe there is and I've not stumbled across it. It's no good getting politicians and bureaucrats inside if they're not receiving proposals for research.
I realise that MEAction are involved with Evelien, but is that then linked to potential research?=

 

Though she is in the US. What gets funding and the level of it is more politicised there than in many places. But sometimes exceptional measures can take place in other places as we have seen.

 

I'm hoping that we will see applications in the EU. E.g. EUROMENE is due to make recommendations in April 2020 regarding biomarkers. So possibly we'll see related applications regarding biomarkers which could be used for diagnosis (speculation). I assume that there is an element of no suitable research calls (research areas which will be funded by the Commission under Horizon 2020/Horizon Europe) and no applications since there are no suitable research calls. So the obvious way to address this would be a suitable research call e.g. biomarkers in ME or a change to the evaluation process - to ensure that ME does not lose out to more established diseases (MS, cancer, heart disease ---). So far the Commission is not pointing to either of these options - which is where lobbying comes in.

 

Yes we've seen exceptional in Europe - ME gets zero funding (2 million people have ME); Lyme gets 33.9 million euros in 10 years (1 million people have Lyme).

 

@FMMM1 thanks. I was missing the step that the research proposals need to respond to calls from the EU. Influencing for the correct calls is therefore the first step.

Actually that draws a sensible parallel to my previous (hopefully to be ongoing) professional life where we would be involved in the steering groups to guide the research priorities for the EDA. I should have been able to work that out for myself!

I'd like to understand the broader picture of the research organisations and how they tie into the charities a bit better. I'd probably need a diagram to get it into my head though!

 

I'm not on twitter but would be happy for anybody to 'steal' my message and tweet it to the people listed.

 

Do you remember where you read this?

 

Do you mean the research funding organisations? Or the few researchers who are researching ME?

 

Eliana Lacerda, vice-chair, EUROMENE speaking at the EMERGE Conference in March (?) 2019. You can view the video online via the EMERGE website. I'm not clear what will be coming out (need to review video myself) potential biomarkers (potential diagnostics), incidence (roughly 2 million in EU), economic impact (most people are unable to work) --- review of potential treatments --- there are a number of different working groups within EUROMENE.

@Andy

 

I meant the research funding organisations, but having thought about it I think what I really mean is the following, which may well highlight my complete lack of knowledge so be gentle with me!
I assume that some of the charities raise funding for research, e.g. Investinme, MEAction, the ME biobank etc. How do they select a direction to take with research, do they work with particular researchers?
Acknowledging the overall lack of funding is there any coordination between them to progress topics most likely to shed light on the disease?
Do they work together to pressure governmental organisations, or the EU, on the direction they think should be taken?

Sorry, I realise that the information is probably out there but I'm struggling to understand the relationship between all the different organisations and how funding works in the medical research field. My background is in defence engineering and the research objectives and boundaries seem more clearly defined. We work with suppliers and even competitors to develop promising technologies, sometimes under our own funding or using governmental or EDA funding. Perhaps the difference is that we have a motivated governmental customer who usually understands what they want, if only at a top level, and that therefore lends some structure to industry and academia in what technologies to pursue.

Is there perhaps a summary somewhere that I could be pointed at? If not, if I sketched out my understanding perhaps you'd be kind enough to correct any mistakes?

I just feel a bit un educated when I read some of the posts on here because I don't understand the relationships.

 

The ultra-short answer is that the situation is an unorganised mess.

Expanding the answer, there are a number of patient charities who, to a greater or lesser extent, fund research - examples are, UK based, AfME, Invest in ME, ME Association and ME Research UK, US based there is Solve ME/CFS Initiative, and Norway's ME Association has funded research. Most, if not all of the time, the direction of that research is determined by the researcher/group who apply for the funding. The same applies to public funding from the UK's MRC and NIHR, and the US's NIH and CDC, as well as Australia's Mason Foundation - broadly the researcher decides what direction they want to take and then pitches it to the potential funder.

The CureME team, who are responsible for creating and maintaining the UK ME/CFS Biobank, are somewhat different - UK charities funded the creation of their biobank, some charities still fund the biobank operations. They have had multi-year funding from the NIH that covers the vast majority of the research work they have done and are doing, but not any of the basic running costs of the biobank.

My thread here lists what UK funded ongoing research there was as of July this year.

In the UK, there is the CMRC (CFS/ME Research Collaborative) that some, but not all, of the UK charities are involved in. Previously there were, from a patient point of view, big problems with this, in that it was essentially a vehicle for Esther Crawley and her BPS beliefs - approx 18 months or so she "decided" to leave and it would appear that the CMRC are now focused on biomedical research. The CMRC, in conjunction with the CureME team, have been talking with the MRC about a ME/CFS research strategy, with the lead component of that a GWAS study - so far nothing definite has come from those talks.

There are moves towards more joined up thinking. The NIH's Collaborative Research Centers have been set up in order to share data between themselves, Solve ME/CFS, CureME and the Australian biobank/registry project that was just recently announced (and the new Canadian centre?) are working on sharing the same app and registry setup, and OMF have their thing going on with multiple centers - although all three of those broad groups, as far as I know, don't share data between each other.

This is not a definitive description of the situation. No doubt I've missed things through not being aware of them or just forgetting them at time of posting. Hope that helps without confusing too much.