Discussion in 'Advocacy Projects and Campaigns' started by ME/CFS Skeptic, Feb 9, 2020.
2) We often focus on the lack of funding from the NIH in the US but there are probably more ME patients in Europe where practically no biomedical research into ME is taking place. This has to change.
3) Some advocates are doing excellent work behind to scenes to put ME on the EU agenda. The easiest way to support them is to sign the petition by Evelien van den Brink. For full instructions on how to sign the petition see here: https://www.s4me.info/threads/2020-...-myalgic-encephalomyelitis-no0204-2019.13442/
4) This is a crucial moment to support the petition, as an EU resolution on ME is currently being prepared. This could help in making research funds available for ME. We need to show how much this means to us.
5) We currently have 2083 online supporters which is great for a EU petition, but we could do much better. If we turn this into the most signed EU petition ever, we would make a clear statement that is not something policymakers can ignore.
6) Signing the petition will only take a minute of your time. You just have to register with an email address and confirm your account in the email that will be sent to you. Then you just log in and press the button “support this petition”
7) People who don’t live in the EU (this includes UK-residents now) can’t sign the online version but they can sing the petition on paper. You could print out the form and get all your friends and family to sign it.
8) You could then mail the petitions or make a photograph of the printed paper sheet or scan it and send it to: email@example.com Please make sure the scans or photos are sharp and well-lit.
Thank for your support!
Nicely done! Good to see this is progressing.
@FMMM1 I hope the EU has good scientific advisors because an uninformed person, despite having the best intentions, could come up with a plan that will do little to help or may even do more harm than good. So I would like to remind you that @Jonathan Edwards would be happy to fulfill that role.
Thanks @Michiel Tack Just retweeted your thread.
Speaking personally I am a little concerned that the wrong research will get funded. However, the Commission will presumably say that they have evaluators with the necessary skills. My knowledge is very limited; however, I understand that (Horizon Europe) applications are evaluated by the European Research Council - Mauro Ferrari (originally from Italy) is the new head of the Council.
When I say "wrong research" I don't mean poor quality psychological research; the petition was quite specific - the request is for biomedical research i.e. not psychological research.
Also I would not assume that this lobbying will be successful. However, I am hopeful that good quality applications for biomedical research are more likely to be funded now -- that still is not enough, we need good quality biomedical research funded now.
I would encourage anyone with an interest to join in this effort. There is an ME Action EU Facebook group. Also, there are opportunities to lobby in the UK via ME Action UK @EspeMor
Jonathan Edwards is an incredibly bright guy and has so much knowledge/experience. When the Commission responded to a question asked by Pascal Arimont (MEP) @Jonathan Edwards @Simon M @Trish provided comments, on this forum, which were useful in drafting the response [https://docs.google.com/document/d/128lzPqm4kdzhUmSjtyktF7RWsi_ntzl2iWCZ37wWZPs/edit].
To me there is a big power imbalance here - we are a small group of individuals trying to "encourage" a large organisation, (monolith) i.e. the Commission, to help us. We will accept assistance from anyone in that!
I'm impressed by the consensus that Chris Pointing's GWAS offers hope of finding leads to understanding ME. So there are research areas which can be funded by the EU Commission and good research groups which desperately need funding to progress that research. Research groups outside the EU can participate in EU research programs e.g. Norway participates and I hope the UK will.
We will continued to "kick shins" i.e. to try to get good quality biomedical research funded by the Commission. We will accept help from pretty much any source to progress that. We cannot "direct" that the Commission funds this project, or that project, just encourage it to support good quality research! We have a battle to get the Commission to give ME research the priority it deserves - anyone interested is welcome to join!
Excuse the long reply!
Biomedical orientation is no guarantee for quality or relevance. For example, in one occasion, when pressed about the need for research into ME/CFS, the EU responded by citing some research into probiotics as being ME/CFS research.
There are a lot of misconceptions about ME/CFS and having at least one person with a good understanding of the illness in a position to guide the EU officials would be very reassuring. A good strategy does not make the assumption that people we know nothing about will have the information they need to make good choices.
Thank you very much for your ongoing efforts. May i ask to whom is the e-mail firstname.lastname@example.org registered? European Union has a strict policy in terms of personal data (GDPR). I am not trying to be a pain here, i just want to make sure that there will be no legal issues regarding this effort.
I think this is entirely reasonable. I think AIDS patients eventually got seats at the evaluation table (there is some information on the ME Action website written by a person who was involved in the AIDS lobbying in the 1980s). Yes having someone like @Jonathan Edwards @Simon M would be great; however, I don't know if that is a realistic goal in the EU. I will ask and get back to you via this forum.
The Commission's response, to Pascal Arimont's (MEP) question, was in my view an example of uncaring officials - it was also (in my view) inaccurate and misleading --- e.g. it referred to research on B-cell autoimmune diseases (Rheumatoid Arthritis) funded by the Commission; however, there is no evidence that ME is a B-cell autoimmune disease (rituximab trial - a drug used in Rheumatoid Arthritis - failed).
We are always dealing with people and the institutions they create - both are imperfect. We can engage with them and try --- there is no guarantee of the right outcome. But yes we should identify risks and try to mitigate them where we can
Remind me to respond to your specific point about patient representatives on evaluation Committees.
I have little to no merit in this. I think @FMMM1 might be better able to answer your question.
I think proposing a respected scientific advisor would demonstrate competence by the involved advocates.
Or 2 or 3 so decision-makers can feel like they made a decision.
Evelien filed this with the Petitions Committee shortly after her appearance at the Committee. Yes, it deals with the evaluation of grant applications (i.e. by knowledgeable evaluators).
"Petition 0204/2019 by Evelien van den Brink The meeting of the Committee on Petitions on 3rd October 2019 in which petition no 0204/2019 was discussed has made a significant impact. The decision of the Committee to keep the petition open and monitor the needed progress, was very well received by the patient community and seen as a valuable start to bring about real change for people with ME. There is so much enthusiasm and support for the goals that were mentioned that will help to achieve the scientific progress that is so desperately needed. You have given patients, not just in Europe, but worldwide, hope. As I said during the meeting it is vital that we make sure this hope is translated into results. Therefore I would like to outline some important requirements to ensure the success of our efforts and will hopefully help to shape the policy that needs to be developed.
- The most important key to success will be the criteria that are used to select the patients for scientific research. I would like to request that the use of the Canadian Consensus Criteria (CCC 2003) (1) and/or the International Consensus Criteria (ICC 2011) (2) will be included as a fixed condition for studies to receive funding. The CCC and/or ICC should be adopted until better criteria and/or preferably a biomedical test exist that will ensure reliable patient selection. This would guarantee the reliability, homogeneity and quality of the scientific biomedical studies and make sure they are mutually comparable. I cannot emphasize enough how important the selection of the right set of patients included in scientific studies on ME will be. (1) http://www.meresearch.org.uk/wp-content/uploads/2012/11/2003-Carruthers-Canadian Definition-JCFS.pdf (2) https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
- It is of major importance to include activity-matched controls in ME studies. This should ideally be determined by using actimeters for a two-week period on the ME patients and on the age and gender matched healthy controls. The included controls need to have the same activity level as the patients to get meaningful and reliable results. For the severely affected this means they will have to be compared to activity-matched controls diagnosed with other disabling diseases.
- I have mentioned the importance of calls, specifically focused on ME, in my response to the Commission’s reply of 30 August 2019. This would ensure that ME researchers do not have to compete with researchers who focus on other well-established diseases. ME scientists have clearly stated that ME loses out in competition with these diseases.
- I also wrote about the importance of a review panel that consists of informed scientists with knowledge of the biological basis of ME. This will be a vital part of the success of the grant allocation for biomedical research. The development of a biomedical diagnostic test and biomedical treatments should get priority, in order to accomplish our goals of helping patients within an acceptable, short timeframe.
- The development of Centers of Excellence is a useful way to streamline the work that needs to be done and will help researchers to improve their efficiency by providing them with the needed infrastructure. These Centers should collaborate as closely as possible with those in the United States to amplify the success of scientist on both sides of the Atlantic.
- Funding will have to become commensurate with the number of patients and disease burden. Given the decades of underfunding a, compared to the investments in other diseases, relatively small investment, can lead to meaningful results that will substantially improve the quality of life of ME patients.
- I kindly request that the patient community will be closely involved and informed of the progress. The support and feedback of the ME community, which is very knowledgeable about the science of ME, can be a helpful and positive addition that we can use to our advantage. I believe these main points will ensure that the available funding will lead to high quality science that will help to unravel the biological cause(s) of ME in the shortest timeframe possible. Thank you very much for your continued support. This is a beacon of hope for many.
Hi @mariovitali I'm no expert on GDPR. We are not an official ME Action "action"; we are independent (at this point in time anyway). The email address was obtained by Evelien (from memory); therefore, I guess Evelien is the "owner". Anyone can obtain an email address, I'm not clear what the link to GDPR is. In this case Evelien is a petitioner to the European Parliament and in that capacity has sought support, from people with ME/their families, including via the use of the email address.
We are not, in my view, an "organisation" holding personal data on anyone; therefore, I'm struggling to see the point/issue regarding GDPR here.
Feel free to explain - as I say I'm not an expert.
Not an expert myself as well @FMMM1
Again, my point is to make sure that no one is going to get into trouble. It is possible that since the emails colleted are not for personal use , there might be a problem.
It is a good idea i think to let that person know about this possibility and to ask an expert, just to be on the safe side.
Evelien suggested that I could share this "the Commission has emphasized in its correspondence that it strongly values meaningful involvement of patients and their carers".
Strikes me as an aspirational statement, "looking to the sunlit uplands" --- I would not get your hopes up that you will see respected patient representatives on Horizon Europe evaluation panels. No harm to suggest how those values might be translated into action though!
@Jonathan Edwards @Simon M thought you might appreciate a laugh --- no need to look at the flight availability yet!
Excuse my cynicism!
@Michiel Tack @Giada Da Ros
I am not sure you are following my line of though.
I am certain the EU will have some sort of advisor or grant application reviewer that will be asked to give their opinion on how to spend the money or which projects to fund. Nobody is going to hand out large amounts of money without safeguards against poor spending choices. I am not certain that the person in this role will be highly knowledgable about ME/CFS. It's in our interest and their interest to get a trustworthy and competent person into this role (even if they might just be one voice among several others). Edwards has the advantage that he is knowledgable, has a reputation as good scientist and cannot be accused of bias because he doesn't have a financial or reputational stake in some theory about ME/CFS. I think we stand a better chance to obtain larger sums if there is the perception that there is a low risk of it being spent poorly.
I think we have to engage with the institution (EU Commission) as it exists. While the Commission has stated that it values patient involvement, it is not yet clear how that "aspiration" is implemented - inquiries/engagement with the Commission regarding patient involvement are ongoing. I'll keep you posted regarding any updates.
One way to approach these issues (in general) is to look at good practice elsewhere --- is there patient involvement in NIH grant evaluation?
This is maybe relevant
For any non-EU citizens wanting to sign Evelien’s petition to support the EU resolution, ME Advocacy Network Australia will be collecting signatures from today until Fri Feb 21.
To sign, please email the following to email@example.com
Address (including country)
Signature (screenshot or scanned image)
Personal details sent to us will only be seen by the couple of people who are collating the signatures into the petition document, and won’t be shared anywhere except with Evelien. We’ll delete all personal details we collect (including the petition document) once the petition document has been delivered to Evelien.
EDIT: I’ve just noticed that I included the wrong closing date! We’ll be collecting signatures until FRIDAY FEBRUARY 21! I’ve edited the text above with the correct date.
Separate names with a comma.