Lobbying for funding for ME/CFS research - they're working for you

FMMM1

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FMMM1

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Thanks! There’s lot of exciting research taking place at the moment!
Euromene has not responded, unfortunately. I will send my email again, but I don’t have high expectations.

Have you heard back from the ENVI yet?
No I haven't heard from ENVI yet.

Yes there appears to be quite a bit of research going on at the moment e.g. (in Britain) Cara Tomas and Julia Newton in Newcastle have linked up with researchers in Oxford [possible diagnostic test - https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract]. Also, Ron Tompkins (OMF Harvard) is planning to work with researchers in England [University of Birmingham and University of Nottingham - OMF Symposium 2018 + https://www.omf.ngo/collaborative-research-center-harvard/]. There are also researchers in Italy who I assume are working with Ron Tompkins [https://www.healthrising.org/blog/2018/11/07/muscles-old-chronic-fatigue-syndrome-tompkins/].

I see there's no sign of significant funding from the European Union [http://www.europarl.europa.eu/doceo/document/E-8-2018-004360-ASW_EN.html]. EUROMENE gets a mention in the response to that question [E-004360/2018].

Still haven't figured out how to get support for funding for research into ME/CFS including a diagnostic test.
 
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Thanks for the links.

I don’t see many options for patients to influence the European funding process either. In the US, where things are obviously progressing at a higher speed than here, at least the researchers are there, full of ideas, ready to start. There is a bitter lack of funds of course, so even there, with all the talents and intelligence gathered we, as patients, are still financing a major part of the research. And an organization like OMF is still very much needed.
I do think however it’s much easier for patients to lobby for funding when the scientists are there taking the lead, showing us the way. What do they need, what do they want, how can we help?
We need a European Ron Davis. That’s my conclusion.
 

FMMM1

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Thanks for the links.

I don’t see many options for patients to influence the European funding process either. In the US, where things are obviously progressing at a higher speed than here, at least the researchers are there, full of ideas, ready to start. There is a bitter lack of funds of course, so even there, with all the talents and intelligence gathered we, as patients, are still financing a major part of the research. And an organization like OMF is still very much needed.
I do think however it’s much easier for patients to lobby for funding when the scientists are there taking the lead, showing us the way. What do they need, what do they want, how can we help?
We need a European Ron Davis. That’s my conclusion.
Scientists want to do science rather than lobbying; which is understandable. Ron appears to be adept at mobilising scientists and non-scientists with ME/CFS. When OMF didn't get an NIH centre grant he turned it around and actually ended up with more money than the NIH funded centres. The other OMF person who comes to mind is Linda Tannenbaum [OMF CEO/President] who is probably the unrecognised (by me) major contributor to OMF's relative success. I met Linda once at a very small event in Northern Ireland; i.e. as well as being talented she does a lot of work.


The risk reward doesn't work for ME/CFS research in Europe. You do a lot of work in preparing a grant application (Horizon 2020 - EU funding) and chances are you will not get anything. Lyme appears to have cracked the funding issue in Europe i.e. politically the EU has to be seen to be funding research and the development of a diagnostic test for Lyme.

Ron Tompkins's (OMF) link up with the UK (and Italian?) researchers may help to improve things in Europe. Obviously there are concerns about access to EU funding post Brexit. Also, this Newcastle and Oxford group also appear to be making progress, I'm very keen to see their next (larger) study [https://pubs.rsc.org/en/content/articlelanding/2018/an/c8an01437j#!divAbstract].

As I mention in my previous post (above) the European Commission, in its response to question E-004360/2018, refers to EUROMENE:
"The Commission also supports the COST programme for European Cooperation in Science and Technology. COST recently created an integrated network of researchers working on myalgic encephalomyelitis — EUROMENE(http://www.europarl.europa.eu/doceo/document/E-8-2018-004360-ASW_EN.html).

If American/British/other scientists come up with a diagnostic test then that might help to get some support for research from the European Union. E.g. a molecular test might move ME/CFS out of the psychosomatic illness category and result in EU funding (Horizon 2020 etc.).

Maybe we can get @Ben H to be our European mascot.
 
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I also think a diagnostic test will break the spell, but until that day the only option I see is to work like Linda Tannenbaum, as you say. She’s doing a brilliant job. But it’s a job that can only be done by a healthy person, in my opinion. I, for instance, will not be able to take on advocating at a level like that.
 

FMMM1

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I also think a diagnostic test will break the spell, but until that day the only option I see is to work like Linda Tannenbaum, as you say. She’s doing a brilliant job. But it’s a job that can only be done by a healthy person, in my opinion. I, for instance, will not be able to take on advocating at a level like that.
I'm not sure how to reply. If the OMF make significant progress then that will benefit everyone with ME/CFS e.g. it will be more difficult for those who wish to say it's a psychological condition with psychological treatments.

I think that those with ME/CFS, and their family members etc, should try to engage with those who can influence funding/policy.

I live in Northern Ireland. I've written to the (3) local Members of the European Parliament (MEPs) requesting that they lobby for funding for research into ME/CFS - no replies. From memory I've tried to get the local charities to lobby the local members of Westminster parliament - no replies.

A site like this will have members in all European Union (EU) countries. On the face of it, it should be possible to contact MEPs throughout the EU; at least some should be interested in actively supporting ME/CFS.

@Ben H maybe you could raise this with OMF. You recently asked for translators; maybe you could ask for people in EU countries who are prepared to write to their MEP requesting EU support for ME/CFS research.
 

FMMM1

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I also think a diagnostic test will break the spell, but until that day the only option I see is to work like Linda Tannenbaum, as you say. She’s doing a brilliant job. But it’s a job that can only be done by a healthy person, in my opinion. I, for instance, will not be able to take on advocating at a level like that.
This is a duplicate post i.e.other post is on mrmbers only so I thought I'd put it here as well:

I've emailed Linda Tannenbaum* to see if she could ask @Ben H to ask for volunteers to contact their local Member of the European Parliament (MEP) to ask the MEP to lobby for European Union funding for ME/CFS.

I've also had a reply from a person I know who works for a university i.e. on applying for EU funding for research (Horizon 2020 etc.). I need to look at it in more detail but it looks like it reflects your view i.e. anyone can apply. Still I can't help thinking that it might help i.e. if we can get some support from MEPs - just like Lyme with the EU ENVI Committee [http://www.europarl.europa.eu/meetdocs/2014_2019/plmrep/COMMITTEES/ENVI/RE/2018/09-10/1152955EN.pdf].



*Here's my email to Linda (sent today):
"Linda, thank you very much for your reply. There's a new study by Dr. Scheibenbogen* (Charité university hospital Berlin, Germany). The study found increased expression of three long chain non-coding RNA (lncRNA) genes in ME/CFS: NTT, MIAT and EMX2OS. Analysing just two of these genes was enough to separate those with ME/CFS from healthy control. The authors note that "these lncRNA expression signature could be of diagnostic value in ME/CFS".
*The expression signature of very long non‑coding RNA in myalgic encephalomyelitis/chronic fatigue syndrome -https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1600-x

The European Union (EU) Committee on the Environment, Public Health and Food Safety (ENVI Committee) are currently lobbying for increased EU funding for Lyme disease, including the development of a diagnostic test. There are other Members of the European Parliament (MEPs)who've asked questions on Lyme, or/and Fibromyalgia, i.e. similar diseases. Therefore, it may be possible to identify MEPs who are likely to have an interest in ME/CFS.
I've already written to MEPs on the ENVI Committee i.e. asking them to consider lobbying for EU funding (Horizon 2020) for ME/CFS. I haven't received any replies.
I was wondering if you would ask Ben H [he posts on Phoenix Rising on behalf of OMF] to ask for volunteers [in France/Germany - i.e. EU] to contact MEPs who have lobbied for Lyme disease/fibro. I.e. to ask the MEP to lobby for funding for ME/CFS. I can draft the email to the MEPs; however, I think that it would be better if the local person sent the email. Also, I think that we could use Dr. Scheibenbogen's study* as an example of what can be done i.e. in Europe."
 

FMMM1

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I also think a diagnostic test will break the spell, but until that day the only option I see is to work like Linda Tannenbaum, as you say. She’s doing a brilliant job. But it’s a job that can only be done by a healthy person, in my opinion. I, for instance, will not be able to take on advocating at a level like that.
Hi Vassie,
first of all apologies for not replying sooner. This is a duplicate post - the other post is in the Members Only section; I thought I'd put it here in case some one reads it and decides to contact their Member of the European Parliament etc.

I haven't contacted MEAction; thanks (in advance) for doing that.

I've based this draft letter on a European Parliamentary question which I helped to draft [Google E-006901/2017]:

"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects more than one million people within the EU. This illness is characterised by persistent and excessive fatigue, post-exertional malaise, flu-like symptoms and cognitive impairments. Most sufferers are unable to lead a normal life. Those affected are predominately women. Many people with ME/CFS feel that they are labelled as having a psychological condition and that research into ME/CFS is not prioritised as a result of this "psychological" label.

Many of the symptoms of ME/CFS overlap with those of Lyme disease and fibromyalgia.

There are no established biological diagnostic tests for ME/CFS, nor are there any treatments.

Professor Carmen Scheibenbogen, Charite, Germany recently discovered that people with ME/CFS can be separated from healthy people by measuring the expression of three genes.
Professor Julia Newton at Newcastle University found that differences in cellular energy production can be used to separate people with ME/CFS from healthy people.
These discoveries could be the basis of a biological diagnostic test for ME/CFS.

There are other excellent researchers in the European Union working on ME/CFS e.g. Professor Jonas Bergquist Uppsala University, Sweden; Professor Øystein Fluge and Olav Mella Haukeland universitetssykehus Norway.

The European Commission has funded the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [EUROMENE] under the Cooperation in Science and Technology (COST) program.
However, the Commission, in its response to a Parliamentary Question on Funding of research on ME/CFS [E-006901/2017] acknowledge that it had not funded any research into ME/CFS:
"To date, no specific projects on ME/CFS have been supported by the EU Framework Programmes for Research and Innovation."

Request:
I would be grateful if you would lobby the European Commission to ask that they fund research into ME/CFS, including the development of a diagnostic test. ME/CFS affects approximately 1 million people in the European Union; most of them are unable to lead a normal life. The development of a diagnostic test, and effective treatments, would help to reduce the suffering of these people."


Feel free to amend the draft letter. Once we have finalised the letter then we can try to get OMF @@Ben H to get those in individual European Union Countries to contact their Member of the European Parliament [MEPs] asking that they lobby for funding for ME/CFS. The recent call by the EU Environment Committee for increased funding for Lyme disease illustrates what we are aiming for [http://www.europarl.europa.eu/meetdocs/2014_2019/plmrep/COMMITTEES/ENVI/RE/2018/09-10/1152955EN.pdf]. We can contact those MEPs on the ENVI Committee and other MEPs who have asked European Parliament Questions on similar diseases: Lyme, Fibro, [Lupus?]. I.e. contact MEPs who are likely to have an interest in lobbying for ME/CFS; what about contacting female MEPs who have a strong interest in female equality?


@@Vassie
 

knackers323

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What would a large amount of money do for cfs?

Where could it best be spent, what sort of amounts would be needed, what results is it likely to have and how quickly would those results be seen?
 

FMMM1

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What would a large amount of money do for cfs?

Where could it best be spent, what sort of amounts would be needed, what results is it likely to have and how quickly would those results be seen?
Hi if you check out Ron Davis's presentation at the recent OMF Symposium then you'll hear his comments about the need for a diagnostic test. I'm struggling to recall but I think Ron highlights that currently when you go to your doctor the tests show that you are normal (healthy). Jen Brea (film Unrest) points out that Multiple Sclerosis (MS) was labelled as psychological until MRI came along; the white demyelinated patches in MS are visible on an MRI.

@alex3619 gave a great description of the objective on this site (from memory) "we don't understand diabetes but we can diagnose it and treat it so that you can lead a normal life - that's what we are aiming for for ME/CFS".

In terms of timing; a diagnostic test may be a realistic short term goal. E.g. there is a Seahorse analyser [see Ron's presentation] and there's a Mass Spectrometry test for intracellular tryptophan. If you had the money today then you could start a validation process; if your Government had to deal with an outbreak of foot and mouth disease then it would put the resources in today. E.g. if your American, or a citizen of the European Union, or pretty much any other country, then your Government is currently using Mass Spectrometry to test for antibiotics/growth promoters in food. If your Government decided to use this Mass Spectrometry to test people, rather than food, then they could start today. Possibly you could have a validates test within 1 year i.e. of the money being made available.

A treatment is another issue; currently you don't have a biological diagnoses [e.g. high intracellular tryptophan]. If we get lucky then you get a diagnostic test and then find an off label drug as a treatment, or other treatment e.g. to re-set the system.

I'm not sure about costs. A large scale study/validation of a diagnostic test would not be cheap (I'd guess possibly 2 million dollars i.e. for an expensive test like Mass Spectrometry); however, your Government spends much more than that on e.g. animal health policies (e.g. mad cow disease). Relative to the 1 million sufferers in Europe/USA the costs of developing a diagnostic test are low.

Sorry for the garbled response. I think a diagnostic test is deliverable within 1 year i.e. if you had the money today. The money required is not huge say 2 million for the validation of a diagnostic test. What difference is an interesting question; possibly Vicky Whittemore was right when she said that we don't know the cause of ME/CFS [iNVEST in ME Conference 2018] and that when you know the cause you have a starting point for drug development etc. (treatment).

Good luck.
 

knackers323

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Thanks for the detailed response.

That’s all? a lousy two million. In terms of the amount of money that is spent, and often wasted, on other less important and even pointless things, 2 million dollars is barely even worth mentioning.
To many individuals, two million is a drop in the ocean.

Even without a treatment, to have a test, and validation would make a huge difference.

I’m surprised that is all that is holding advancement back.

Do you know what diagnostic test the OMF is working on with the 5 million dollar donation they received?



OMF in a press release outlined the how the bitcoin gift will help –

  • “create a diagnostic test for ME/CFS”
  • “scale up patient data analysis”
  • “accelerate the development of new technology to identify treatment options”
  • “research towards a cure”

https://www.google.com.au/amp/s/www...coin-donation-boosts-medicine-foundation/amp/
 

FMMM1

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Thanks for the detailed response.

That’s all? a lousy two million. In terms of the amount of money that is spent, and often wasted, on other less important and even pointless things, 2 million dollars is barely even worth mentioning.
To many individuals, two million is a drop in the ocean.

Even without a treatment, to have a test, and validation would make a huge difference.

I’m surprised that is all that is holding advancement back.

Do you know what diagnostic test the OMF is working on with the 5 million dollar donation they received?



OMF in a press release outlined the how the bitcoin gift will help –

  • “create a diagnostic test for ME/CFS”
  • “scale up patient data analysis”
  • “accelerate the development of new technology to identify treatment options”
  • “research towards a cure”

https://www.google.com.au/amp/s/www...coin-donation-boosts-medicine-foundation/amp/
Ron does a detailed analysis of the potential tests in his presentation at the OMF Community Symposium 2018. The front runners (from memory) are Seahorse/Nano needle (stress cells with salt and test - 100% accurate so far); intracellular tryptophan by mass spectrometry (costly but 100% so far); red blood cell deformability (potentially very cheap - few dollars per sample) also looks promising. If I were to pick a gold standard at this stage it would be intracellular tryptophan by mass spectrometry - but I'm prejudiced.

They're doing everything i.e. all samples for everything (Seahorse/Nano needle ---) but they are constrained by funding - hence his plea that now is the time for the big downer's to make a difference.
 

FMMM1

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A lousy two million....
And 36 billion for HIV......(as I just read on another thread thanks to @Moof )
See below. The European Union has given 33.9 million euros/dollars* to Lyme research with an addition recent grant of 25 million euros/dollars**. The European Parliament's Committee on Environment, Public Health and Food Safety (ENVI) is currently lobbying for more funding for Lyme.
ME/CFS research has got zero***



[http://www.europarl.europa.eu/doceo/document/E-8-2016-008631-ASW_EN.html]:
*"Both basic research and the development of new diagnostics, treatments and vaccines for Lyme borreliosis are funded by EU research and innovation framework programmes. The total EU contribution to such projects since 2007 amounts to EUR 33.9 million---"
**"In addition, the European Investment Bank (EIB) recently granted EUR 25 million to the development of a Lyme vaccine---"


[http://www.europarl.europa.eu/doceo/document/E-8-2017-006901-ASW_EN.html]
***"To date, no specific projects on ME/CFS have been supported by the EU Framework Programmes for Research and Innovation."