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

The petition is now at 449 supporters.

 

I tagged @Andy @Tom Kindlon @Simon M really just to highlight the reasons why ME is not funded i.e. not as a request that you lobby via ME Action.

You run a good ship here on Science 4 ME - I've recommended this site to people taking refuge from the mother ship (Phoenix). I've been reviewed (negatively) by the moderators on this site myself --- possibly not unreasonably!

However, I think some of the contributors on this site may feel that they couldn't lobby - they self deselect- from what I can see they could. Basically if you can say hello to a politician, and ask them to help, then you can lobby. I recall a senior civil servant recounting that on a Monday morning it wasn't briefing papers which were discussed with the Minister but the person at the newsagents who asked the Minister ---. Check out "Yes Minister" it is true (as well as funny).

@EspeMor

 

https://twitter.com/user/status/1171546083153055744

 

I wonder whether it might be possible to do a freedom of information request to get some details of ME/CFS applications over the years?

I think the freedom of information requests in the UK to the Medical Research Council might possibly have helped push them to do the 2011 round of funding. It also gives more concrete information that advocates and politicians can use.

 

For clarity, here is the important part of the Commission's reply

 

The Commission has previously "owned up" to not provided any specific funding for ME research "To date, no specific projects on ME/CFS have been supported by the EU Framework Programmes for Research and Innovation" [response to parliamentary question - December 2017 - http://www.europarl.europa.eu/doceo/document/E-8-2017-006901-ASW_EN.html].

This time they have muddied the waters by saying that they have funded research into comorbid conditions (IBS & chronic pain) so that counts. Thank you for your clarity @Trish I'm not sure whether to compliment the Commission for muddying the waters with these statements - in an "alternative truth" sort of way. I'm finding it damn difficult to tackle this obfuscation.

One positive is that the NIH has decided to identify and remove barriers to progressing ME research [https://www.ninds.nih.gov/sites/def...cil_working_group_for_mecfs_research_508c.pdf and https://www.healthrising.org/blog/2019/09/08/pivotal-moment-chronic-fatigue-syndrome-me-cfs/]. That approach, by the NIH, may make it more difficult for the Commission to stick with it's policy of no change - the system's fine. E.g. NIH funding for ME research was 15 million (2017) and 14 million (2018) with a commitment to remove barriers (so funding will increase); how can the Commission defend no change TO ZERO FUNDING FOR ME RESEARCH? The incidence in the US and the EU are the same - 2 million people have ME in the US/EU!

Deeply frustrating - thank you for your clarity @Trish

 

I followed the link about the probiotic. It looks like the money is going to CFS. I'm not saying this is the most exciting thing ever.

https://cordis.europa.eu/project/rcn/223054/factsheet/en

 

off topic/ fun fact: this trial once got funding by the EU https://www.ncbi.nlm.nih.gov/pubmed/18277062 if I remember correctly 300 000 DM 150 000 € .

This post has been copied to a new thread. Subsequent posts about this study have been moved there.

 

Check out Ron Davis's presentation at the recent OMF Symposium [https://www.facebook.com/search/top/?q=part%202%3A%20community%20symposium%20on%20the%20molecular%20basis%20of%20me%2Fcfs&epa=SEARCH_BOX]. Indole propionate (a neuroprotectant) is made by a bacteria (Clostridium) in your gut; however, in people with ME this bacteria is missing. The product the Commission is highlighting/funding is a lactobacillus; it does not produce indole propionate. Does anyone know of any evidence to suggest this lactobacillus probiotic should work in ME? @JaimeS

 

https://twitter.com/user/status/1179747715019919362

https://twitter.com/user/status/1179817870227841024

 

I was so impressed by the testimony of Evelien, that I immediately started working on a transcript. I've added some screenshots, to get an impression of the hearing.

Her speech was very powerful - it had a calm and eloquent determination that I think should set the standard in our advocacy efforts. I don't know her but she is one of my ME heroes now.


EU Committee on Petitions - Committee meeting -09:00 / 12:30 - 03-10-2019

Source: https://www.europarl.europa.eu/ep-live/en/committees/video?event=20191003-0900-COMMITTEE-PETI

Video starts at minute 10.23.



Tatjana Ždanoka, vice-chair of the Committee on Petitions: Now the goal of petition number 204 of this year by Evelien Van Den Brink (Dutch) on the request for funding for biomedical research on myalgic encephalomyelitis, in the presence of the petitioner. Thanks to the petitioner and all those who have provided the possibility for us to speak to you and to hear about your concerns in direct evidence, not only in writing.

Evelien Van Den Brink: President Monseratt, members of the committee on petitions, thank you very much for your invitation. I’m honored to be here. I would also like to thank Francis Martin for his brilliant help and support, ME Action - Ben and Espe in particular - my parents and the Red Cross. I’m grateful to everyone who supported the petition and helped to make this a success.

The fact that I’m here is a miracle in itself. For years I was unable to speak or get out of bed. Despite the severe limitations that I still have today, I’m very glad to be alive. I survived. Not all patients are this lucky. We have lost some wonderful members of our community to this disease.

The disease is sometimes called invisible. This is true to some extent. Chronic diseases can be quite invisible to outsiders, but with ME this is only up to a certain level. At that point, it becomes very visible. The disease has been described as a living death.



[Shows picture] This is Whitney Dafoe, the son of Janet Dafoe and Ronald Davis professor of biochemistry and genetics at Stanford University, a renowned scientist who was involved in the human genome project. He has been working tirelessly to cure his son’s disease. [Changes picture] This is Alison Hunter. She was a vibrant girl full of life. She was only 14 years old when she died of complications of ME. [Changes picture] This is Mark Vink. He was a doctor who ran marathons. Now walking to the bathroom is harder than any marathon he ever ran. [Changes picture] This is me at one of the worst moments. I’ve been sick for more than 20 years. [Changes picture] This is me as a child. I cherish the memory of my healthy life. Once I rode an unsaddled horse.

In this grade of severity, ME is only invisible if people purposefully look away and this is what has happened. Patients have suffered in silence. The fact that the cause of the disease isn’t understood and there is no diagnostic test has created a terrible stigma.

Almost all of us have heard at least once the empty phrase: ‘it must be all in your head’. ME patients have been treated shamefully because of misconceptions and the terribly inadequate funding that hampers scientific progress. Cancer was once thought to be caused by the suppression of bad thoughts. MS was called hysterical paralysis. And AIDS was believed to be caused by the stress of being gay. Thankfully times have changed. This change was made possible by science, not silence.

And that’s why I am here today: to ask you to fund biomedical research on ME. We need to be able to diagnose this disease as soon as possible and make sure patients get access to biomedical treatments. Scientists have made a lot of progress in the last few years, thanks to private funding and public funding that was made available in the United States by the NIH. The major US universities have special research groups. There are clear findings and a clear path forward.

I am convinced that we as Europeans can do much more to solve this neglected disease. We have brilliant scientists, eager to get to work, but they need funding. This will take a long-term commitment with structural equitable funding and a comprehensive strategy. This is not just an ethical and humanitarian question, it will also have a positive economic impact if patients can recover their health and they and their caregivers can go back to work.

I have faith in Europe and our common values of equality, justice, and fair chances. I am absolutely sure that we can make a substantial contribution to solving ME if we put our minds to it. On behalf of all patients I’m asking you: please don’t look away. We are here and today we have made ourselves visible. Please help us to get back to our lives. With hope and determination, we can solve this together. Thank you very much.

[Applause in the room]

Tatjana Ždanoka, vice-chair of the Committee on Petitions: Thank you Evelien, you really made the problem visible. Thank you once more for this. So, according to our procedure, we give the floor to a representative of the commission. It is Karim Berkouk.

Karim Berkouk, representative of the European Commission: Thank you and thank you miss Van Den Brink for this moving testimony. I will repeat what I have said before: we don’t have specific disease… euh… we don’t focus on diseases. We have open challenges and researchers can provide a solution to the challenge. For instance, last week we had a topic which is ‘new interventions for chronic diseases’ and that’s exactly where such research could take place. Maybe what we are not doing enough is stimulating those researchers and push them to apply a bit more.

I’ve heard sometimes and it was mentioned that the ‘small diseases’ are not evaluated as well as the other ‘big diseases’ but I have to say that when we carry out the evaluation, we really mention that what matters is the impact within the disease and not across diseases. So if there is a game-changer in ME for instance, it will be given priority compared to another euh… big disease such as cancer. So maybe my answer would be: ok how can we find ways to stimulate a bit more the researchers to apply.

I know that they were a bit put off at the beginning of Horizon 2020, because the success rate was extremely low, we had a 2-3% success rates, so lots of frustration. But towards the end of Horizon 2020, the success rate is getting better, closer to 20% so I hope there will be more opportunities.

And just to point to the comparison with the NIH, the National Institutes of Health in the US: yes they are doing a lot. But they have a budget that is 30 times bigger than what we have at the commission. They have something like 30 billion a year, we run with about a billion a year. So, of course, they have better means.

But I also want to remind you that 95% of public research funds in the EU come from the member states, only 5% is managed by the commission. So that’s where I think we could also stimulate a coordination of national research resources.



Tatjana Ždanoka, vice-chair of the Committee on Petitions: Thank you. There was a request from the floor, from colleagues: Mr. Palmer, please.

Rory Palmer, member of the European Parliament: Thank you very much. And can I firstly thank the petitioner for that incredibly powerful testimony in support of the petition. You have not just made ME patients visible this morning. You have made ME patients powerfully heard in the European Parliament today. And I know ME patients across Europe would be incredibly proud of your contribution this morning.

So let me thank you and all those who supported this petition, including my constituent Sarah Reed who has campaigned as a ME patient for many years, a huge personal sacrifice as well. I met earlier this year with the International Alliance for ME who stand fully behind the cause of this petition for more funding to support biomedical research into ME, which as we have heard this morning is a truly devastating condition affecting over 20 million across the world. Many millions here In Europe, but across the world as well.

And as the petitioner has made clear, let’s not lose sight of the fact of the European Union’s potential role as a global leader in medical research on conditions such as this. This condition carries a huge economic cost but more importantly that huge personal cost to individuals, their families, and their carers. So this morning, I want to reinforce what many of my constituents have said to me and have asked me to do: to make representations to the commission, to find that funding, that specific funding to support the biomedical research we need to see.

Firstly for biomedical diagnostic testing for ME which is accurate, reliable and recognized. But also that research to drive forward effective treatments for ME as well. And I do ask the commission perhaps to be a little bit more precise than stimulating research as it comes forward. Let’s put in place some specific funding to research this condition because the reality is this: ME is often misunderstood. It is therefore often misdiagnosed or not diagnosed at all. And what that leads to, that misunderstanding and that misdiagnosis is some incredibly misplaced assumptions and stigma affecting people suffering with this condition.

I was very encouraged earlier this week at the hearing of the commission designated to health, which spoke very positively very ambitiously about the public health agenda, the European Union going forward. So I think there is a strong and emerging consensus across institutions here to find and identify specific funding to support that biomedical research on diagnosis and treatment for ME.

So I hope the petitions committee this morning will keep this petition open so we can monitor track and hold accountable, the commission, in doing that. And that we perhaps in a few months time, can perhaps have a more compelling story to tell those people across the European Union and beyond who are looking at this place to do more on this and to remedy the great injustice of the underfunding, the incredibly evidenced underfunding, of ME research when compared to other diseases and conditions.



Tatjana Ždanoka, vice-chair of the Committee on Petitions: thank you mister Palmer. Mister Buschmann you have asked for the floor please:

Martin Buschmann, member of the European Parliament: Thank you very much. Thank you very much also to miss Van Den Brink for coming here today and making that presentation. I would like to thank the carers who made it possible for her to be here at all. I read up a little on the disease prior to this petition. In the case of ME it’s a multi-system disease with massive consequences on the lives of the persons affected and we can see that in this instance.

The precise causes remain unknown, according to the information I have. And the symptoms are at least six months of exhaustion, weakness, pathologically low levels of [translator says exhaustion probably means energy] particularly after exertion, big disruptions to sleep, cognitive and recuperative limitations then symptoms that are very similar to influenza: pain, susceptibility to infection, etc. etc.

Now, for the person affected obviously, this reduces their quality of life very considerably. 60 tot 80 percent of those affected are no longer able to work. Some people require very considerable care. According to the information I have, it has been recognized in the Netherlands and it was on the fist of October that the parliament there passed that recognition in the Netherlands.

Obviously when it comes to any request for raising the budget for research I would be in favor of that and I would ask for the petition to remain open, thank you.

[No image of Mr. Buschmann]

Dolors Montserrat, chair of the Committee on Petitions: Thank you. I will now give the floor back to the petitioner for two minutes to conclude on this point:

Evelien Van Den Brink: I would like to thank everyone for their contributions and support. I’m very grateful that you have listened. And that it has become clear that the need for change is enormous. This is so important to so many people. I hope this meeting and this historical moment will get a positive follow-up so that change will really take place. Let us turn this hope into deeds, into concrete action that will improve the lives of many. Thank you very much, I’m very appreciative.

[Applause in the room]




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.

 

I'm adding a pdf-version of the transcript here: (somehow a Word-document was too large to post here)

[EDIT: this version had been updated to include the final comments which I forgot but Strategist has kindly transcribed - see posts below]

 

Great achievement, many thanks to Evelien van den Brink!

 

The petition is now up to 1313 supporters. It says "Status: Available to supporters" so I'm not sure if that means it can still be signed.
Link anyway is https://petiport.secure.europarl.eu...medical-research-on-Myalgic-Encephalomyelitis

 

The members of parliament asked the keep the petition open and I think this was accepted. So that probably means that people can still sign the petition.

 

Huge congratulations to Evelien and Francis, this is a huge achievement. Evelien, your speech was amazing and the committee's response is at least hopeful! Thank you for representing people with ME in the EU and your hard work on this over so many months.

Thank you so much, Tom and Michiel for putting those materials together and everyone here for their support

Andy, to my understanding the petition can still receive signatures. The petitions site is sadly not very user-friendly though as most of us have discovered!

 

@Michiel Tack in the transcript you forgot the response to Evelien's final comments. I transcribed it.

I think this is a promise of help. I believe they just can't decide there and then how the budget is going to be allocated. They need to discuss it at their "multiannual financial framework".

My opinion: patient organizations need to keep working on this and towards a plan that includes specific disease funding. More signatures on the petition are probably helpful.

 

Do I have to register first in order to sign?