Discussion in 'Petitions' started by FMMM1, Jul 12, 2019.
Are they linked to Jonas Bergquist (Uppsala)?
I don't know if there's any official cooperation between them. But they've given lectures at the same conferences.
I think a lot of people quote this as a way to point the finger at governments and government agencies. But a lot of research for other conditions is funded by private research and the ME/CFS community has not done a great job of raising money privately. In many countries, there is very little focus whatsoever on raising money privately.
That's mostly because of the stigma and disinformation. Given the size and severity, if the disease were taken off the blacklist and word was communicated from medical and public health institutions that denial is over and it has to be taken seriously, even if there were no public funding at all it would still massively increase the available funding. Right now most people affected don't even know there is something they can do about it.
Which is why it's so frustrating to have the NIH and CDC keep their mouths shut about it. They can do very little because of the stigma and disinformation preventing institutional support from providing adequate resources while they are the ones who can remove it entirely, even if they add no funding at all or make any demands from their institutions. They both kinda said it but basically mumbled it beneath 12 layers of clothing and speaking directly into a giant fan. Doesn't really count. They can mean it and choose not to.
Although certainly if we can get the congressional resolution passed, maybe that will do some of it. But that may take a while as it's unlikely that the next continuing resolution passes and the government shuts down over impeachment. Not exactly the best time to rely on this kind of courage, I just hope the opportunity doesn't pass because of the incoming chaos.
I largely agree with @rvallee The image of ME means that it doesn't get public funding to the extent of a "real" disease with the same impact (number of people affected and severity - disease burden). Also, we're not close enough to understanding the disease i.e. to get the pharmaceutical companies interested. @Jonathan Edwards pointed out we're at first base and Vicky Whittemore (NIH) said pretty much the same thing at the Invest in ME Conference (2018?).
I'm quite surprised at the cost of research e.g. a large grant is roughly 2 million dollars. The EU Commission funded the development of a test for Lyme EUR 7.8 million - roughly same in US dollars [https://www.europarl.europa.eu/doceo/document/CRE-8-2018-11-15-ITM-003_EN.html?redirect] My understanding is that unfortunately the test hasn't been successful - there has been some encouraging talk recently on Health Rising (re progress towards a diagnostic test for Lyme)
Organisations like Solve ME/CFS and OMF have delivered research through donations but public funding is required at this stage
Doing nothing costs as well - approximately 2 million people in the EU alone have ME and approx. 25% are house bound or bedbound
We live in an increasingly integrated world; while some countries may not have charities fund raising for research, people in those countries can contribute to Solve ME/CFS and OMF ---
I’m not exactly sure what you’re saying but just to point on that the CDC spent at least $4 million and probably in the end more on awareness campaigns aimed at both the general public and health and medical professionals highlighting it was a real and serious condition in the 2000s. The NIH has done various initiatives and the percentage of applications that get accepted is comparable to the average success rates.
We can always want more but I think it sometimes get forgotten that a relative lack of money being raised by the ME/CFS community privately is something that could be worked on directly and governments don’t fund all the necessary research in most other conditions either.
Looks like this genome-wide association study (GWAS) may get funded - cost approx. 2 million pounds sterling!
Discussed on this thread:
The results are pitiful. That doesn't seem to be a concern. We're not talking about solving nuclear fusion here, or solving the complete biomedical puzzle of ME. Trying and failing is not a real option. It's a simple message and easy to see that it was not received. Pretty much the opposite in fact, because of the BPS nonsense we have lost ground since then and the CDC peddled some of that nonsense.
When you see someone slowly driving in the path of another person they can't see and you start saying HEY! at them and they don't react the first time you don't shrug and mumble to yourself "well, I tried, too bad they didn't listen". Both the CDC and NIH have the influence to pull this off. They did something. It didn't work. They shrugged and we don't know what they mumbled in private but it adds up to just about the same as having done nothing at all.
What I'm going to write may be disputed but I think Vicky Whittemore is on our side in this debate. I.e. the side of more than 1 million people who have ME in the US - approx 25% bed bound or house bound.
I do think there are rules when you change from being a patient advocate (which Vicky was - a close family member - neurological condition) to being part of Government. I guess the clever people like Vicky have there eyes open; you can't sit with those lobbying for change but you can work inside to deliver change. I think the question is how do you work with those like Vicky who are already on your side - maybe you have to make the case that Vicky can't I.e. a political case . If you don't get support on the elected side then challenge them. If you do succeed politically then do you think Vicky will resist? I don't.
Excuse my writing - sent from my phone!
I think I should have added that my point was that 2 million pounds is a lot of money to raise via public donations. Only 1 pound per person with ME in the EU but still difficult to fund raise - that's why we need public money.
@Jonathan Edwards you're probably aware of the EU Funding under the "Marie Skłodowska-Curie Actions" [https://ec.europa.eu/research/mariecurieactions/node_en].
It seems to e.g. provide funding for scientists to work in other laboratories (possibly a researcher in the EU could work in a US laboratory). I'm trying to understand whether the Marie Curie program would be of use to researchers trying to progress ME research?
Anyone else who has contacts in the research community who could advise?
"urgent action call" - Try to sign Evelien's petition online if you can NOW.
Here is an email to Evelien regarding the number of signatures:
"relative to most other petitions, ME is doing very well (there are only few with > 1000 signatures online) and this has surely helped already with the PETI committee [EU Parliament Petitions Committee]. But with so many affected people (which all have family and friends) > 10000 should be possible and would make this petition THE most successful one. My experience is that this works as a strong argument with decision makers. Have all the national ME initiatives already done an "urgent action call"?"
Here is an extract from Evelien's reply:
"I agree --- we should try to increase the number of signatures. --- this is a crucial moment to support the petition --- we need to show how much this means to us."
Supporting the petition online (several languages);
Signing the petition on paper (several languages);
— @Michiel Tack @Andy @Jonathan Edwards
The German ME/CFS Association posted a call on Facebook and Twitter:
I've re-posted it on our local group. Are we still eligible to sign it in the UK after 31st Jan?
A suggestion I'd like to make so that sharing these instructions on how to sign the petition is more user friendly - put them on a blog, or even start a new thread in the advocacy section here with them in (assuming they aren't posted earlier in this thread already). Sharing a URL to something that will display the instructions in a browser would be far more likely to encourage participation I would have thought - just my tuppence-worth.
Instructions - how to support the Petition
Here you can find the petition. The summary has been provided by the PETI Committee;
(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;
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;
Thank you very much for your support!
Contact us at firstname.lastname@example.org
Thanks to Espe for proofreading the text!
Instructions posted above.
I think we (I'm in Northern Ireland) leave on 31st - 7 days time. After 31st I assume you cannot sign - so encourage people to sign in the next week.
Wonderful to see that this petition has found so many supporters.
My family members encountered problems when trying to activate their account on the EU petitions website and could not sign the petition for that reason.
My girlfriend contacted support staff and has just received a response from one of the 'process analysts'. The message confirmed that there are currently problems with the account registration process due to a recent upgrade to the systems behind the EU petition website. It is not clear from the message whether any attempt at registering an account is bound to fail at the moment or whether some registrations might still get through. However, they are clearly aware of the problem and are working on it.
I thought I should add this here for anybody wondering why their registration attempts fail.
Since it's not clear whether the registration process is completely down, please don't be discouraged trying!
If and when my girlfriend receives another message confirming the issue is resolved, I will post here again.
I sure hope this website problem will not prevent people from the UK signing the petition in time!
Separate names with a comma.