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

ME/CFS Skeptic · Oct 3, 2019

strategist said: ↑

@Michiel Tack in the transcript you forgot the response to Evelien's final comments. I transcribed it.
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Thanks, Strategist. I'll add it to the pdf-version if that's ok with you.

[EDIT: It's not exactly clear but I think those words were from Dolors Montserrat, chair of the Committee on Petitions, who was being translated instantaneously from Spanish.]

Andy · Oct 3, 2019

Barry said: ↑

Do I have to register first in order to sign?
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Yes.

Barry · Oct 3, 2019

Signed.

Colleen Steckel · Oct 3, 2019

Michiel Tack said: ↑

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.

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.
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THANK you so much for the transcript! And I agree this was a quality presentation. Science not silence... great message.

That first quote indicates to me the world is still expecting the NIH to lead the way. Which is a reminder to the US advocates how important it is we push for proper diagnosis of ME so research dollars are used most effectively.

I see the information they drew from continues the six month requirement. We really need to get that dropped so patients are guided from day one to protect their health to improve long term outcomes. I think most here know I advocate for adoption of the ICC and one of the many reasons is it does away with the six month wait for diagnosis. It guides doctors to immediately start ruling out other possible diseases and to guide patients to avoid push/crash cycle.

NelliePledge · Oct 3, 2019

all of us from the U.K. need to get this signed if we’re going to support it.......

Hoopoe · Oct 3, 2019

I'm going to let my fantasy run wild for a moment.

We could get the EU to nominate a person in charge of "developing ME research", in recognition that the research situation is comparable to a cycle of poverty that is difficult to escape without financial stimulus.

That person would be responsible for allocating some amount of annual funding in the way they think is best, but with an explicit mission to make research in this area grow in size and quality, and according to patient needs.

This project would run for 5 years at least. The EU would decide how much funding this person is allowed to allocate and they would be able to replace this person if there's a problem.

FMMM1 · Oct 3, 2019

Andy said: ↑

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.europa.eu/petitions/en/petition/content/0204%2F2019/html/Petition-No-0204%2F2019-by-Evelien-Van-Den-Brink-%28Dutch%29-on-a-request-for-funding-for-biomedical-research-on-Myalgic-Encephalomyelitis
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Yes you can still sign - I'm not sure when it will be closed, but if you wish to support it, I suggest that you sign it now.

NelliePledge · Oct 3, 2019

FMMM1 said: ↑

Yes you can still sign - I'm not sure when it will be closed, but if you wish to support it, I suggest that you sign it now.
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Signed up for an account and I can see the petition but there’s no obvious way to sign it

Andy · Oct 3, 2019

From the MEAction guide to the petition, http://www.meaction.net/2019/07/17/...k-the-eu-for-funding-for-biomedical-research/

Supporting the Petition

Here you can find the petition. The summary has been provided by the PETI Committee;

https://petiport.secure.europarl.eu...esearch+on+Myalgic+Encephalomyelitis+%28ME%29

(Petition No 0204/2019 by Evelien Van Den Brink (Dutch) on a request for funding for biomedical research on Myalgic Encephalomyelitis)

Evelien’s personal experiences as a patient have been used as a way to petition the EU to make funds available for the development of a biomedical diagnostic test and biomedical treatments available to all ME patients.

You can support the petition if you are an EU citizen. You will have to register first. Your name and other personal data will not be publicly available when you support the petition. Please follow these steps:

1- Go to https://petiport.secure.europarl.europa.eu/petitions/en/home

2- Choose your language in the top left corner.

3- Click “Menu” in the blue bar on top of the page. Click “Register” in the menu.

4- Fill out the registration form and click the green “Register” button (bottom right).

5- Confirm your e-mail address through the link you will receive in an e-mail.

6- You can now log in. Go to the petition again;

https://petiport.secure.europarl.eu...esearch+on+Myalgic+Encephalomyelitis+%28ME%29

7- Click “Menu” in the blue bar on top of the page. Click “Log in” in the menu. Fill in your username and password and click on the “Log in” button.

8- Support the petition by clicking the blue button (“Support this petition”) at the bottom of the page.

9- You will receive a confirmation by email.

If you have any questions about the registration process and/or supporting the petition, please take a look at the FAQ;

https://petiport.secure.europarl.europa.eu/petitions/en/faq

Cinders66 · Oct 3, 2019

Wow, really impressive. I hadn’t realised the petition would result in a patient allowed to attend to plead the case. Tanjana did a fabulous Job and I have to say her appearance was as powerful as a thousand words, you could see they were moved by her enfeebled condition and I don’t think that Anyone seeing her would have thought oh she is just deconditioned or psychologically ill so that convinced them without saying a word.

I was initially concerned with the first ministers response , along lines of we don’t finance just one illness we have heard many times before, although he did atleast suggest doing something to stimulate the field. I was grateful to the MEPs who spoke further and reiterated need for action and funding to combat stigma. I thought that the Final sum up by the EP official was encouraging
So well done and thanks to all &those who made it available in different formats on this forum.
Made My day .

NelliePledge · Oct 3, 2019

Thanks @Andy

I have also now signed

ringding · Oct 3, 2019

I circulated thr petition on the local Facebook me groups earlier this year. I think the complexity involved in signing it has put some people off, as has the Brexit situation. I agree that us in the UK should sign it asap, and have suggested that.

Andy · Oct 3, 2019

https://twitter.com/user/status/1179687200138649600

rvallee · Oct 3, 2019

Michiel Tack said: ↑

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.

View attachment 8591

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.

View attachment 8592

[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.

View attachment 8593

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.

View attachment 8594

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]

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Thank you for this, Michiel, and many thanks to Evelien. We all know the sacrifices it takes to do what she did.

It's pretty amazing how the precise reason for why no progress has been made is so often cited as a positive fact.

Michiel Tack said: ↑

we don’t have specific disease… euh… we don’t focus on diseases
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Without a sincere, well-funded effort built on a strategy that will not simply give up after a short bare minimum effort, it's basically guaranteed that there will be such failures. Some diseases get a jump-start by the efforts of a small group. That's a bargain, it is, however, not a guarantee. When that fails, the only reasonable strategy is to target a disease specifically. This is beyond self-evident. Failure is a choice and at this point medical and public health institutions own this failure. This late in the process, just waiting on chance is not acceptable.

Anna H · Oct 3, 2019

@Michiel Tack Thank you!
I signed the petition a while back, I realized when trying to sign it now
I had a vague feeling I did, but wasn't sure.
Immense thanks to Evelien, what she accomplished today was heroic!

FMMM1 · Oct 3, 2019

NelliePledge said: ↑

Signed up for an account and I can see the petition but there’s no obvious way to sign it
Click to expand...

There's a "Guide to support the petition" link on this webpage
https://www.meaction.net/2019/07/17...k-the-eu-for-funding-for-biomedical-research/

ME Action are supporting the petition.

I've told my local MEP that I doubt that this system meets EU equality legislation! A lot of people with ME have cognitive impairment and haven't been able to sign the petition.

FMMM1 · Oct 3, 2019

Barry said: ↑

Do I have to register first in order to sign?
Click to expand...

yes -
There's a "Guide to support the petition" link on this webpage
https://www.meaction.net/2019/07/17...k-the-eu-for-funding-for-biomedical-research/

ME Action are supporting the petition.

https://www.meaction.net/2019/07/17...k-the-eu-for-funding-for-biomedical-research/

Ravn · Oct 4, 2019

Michiel Tack said: ↑

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.
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Rory Palmer got one thing wrong, let me fix it: "ME patients across Europe would be across the world are incredibly proud of your contribution".

It's M.E. Linda · Oct 4, 2019

Ravn said: ↑

Rory Palmer got one thing wrong, let me fix it: "ME patients across Europe would be across the world are incredibly proud of your contribution".
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Are you on twitter @Ravn ?

https://twitter.com/user/status/1179687200138649600

If not, I’m sure @Michiel Tack (or I) would be happy to send your message to @Rory_Palmer and also @Jude_KD (another UK MEP) who also tweeted support of Evelien

Cinders66 · Oct 4, 2019

https://twitter.com/user/status/1179687200138649600

Andy said: ↑

https://twitter.com/user/status/1179687200138649600

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That labour MEP spoke well. I’m pleased there were a few voices saying we need deeds, actions help. I’m not sure if it was left to the original minister we would have had much reason to hope, he at least said looking into stimulating research could be done but that was left so vague I would have been disappointed if that was all. I also don’t consider his billion pound budget too small to help us Either, Especially if you consider the amount the European space projects are costing. Contrast the UK response which isn’t even that, it’s just we don’t invest in specific illness, sort the problem yourself.

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

ME/CFS Skeptic Senior Member (Voting Rights)

Andy Committee Member

Barry Senior Member (Voting Rights)

Colleen Steckel Established Member (Voting Rights)

NelliePledge Moderator Staff Member

Hoopoe Senior Member (Voting Rights)

FMMM1 Senior Member (Voting Rights)

NelliePledge Moderator Staff Member

Andy Committee Member

Cinders66 Senior Member (Voting Rights)

NelliePledge Moderator Staff Member

ringding Senior Member (Voting Rights)

Andy Committee Member

rvallee Senior Member (Voting Rights)

Anna H Senior Member (Voting Rights)

FMMM1 Senior Member (Voting Rights)

FMMM1 Senior Member (Voting Rights)

Ravn Senior Member (Voting Rights)

It's M.E. Linda Senior Member (Voting Rights)

Cinders66 Senior Member (Voting Rights)

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

ME/CFS Skeptic Senior Member (Voting Rights)

Andy Committee Member

Barry Senior Member (Voting Rights)

Colleen Steckel Established Member (Voting Rights)

NelliePledge Moderator Staff Member

Hoopoe Senior Member (Voting Rights)

FMMM1 Senior Member (Voting Rights)

NelliePledge Moderator Staff Member

Andy Committee Member

Cinders66 Senior Member (Voting Rights)

NelliePledge Moderator Staff Member

ringding Senior Member (Voting Rights)

Andy Committee Member

rvallee Senior Member (Voting Rights)

Anna H Senior Member (Voting Rights)

FMMM1 Senior Member (Voting Rights)

FMMM1 Senior Member (Voting Rights)

Ravn Senior Member (Voting Rights)

It's M.E. Linda Senior Member (Voting Rights)

Cinders66 Senior Member (Voting Rights)

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