"Plunging Grant Application Rates Test NIH’s Commitment to Chronic Fatigue Syndrome (ME/CFS)"

Jonathan Edwards said:
It is difficult to get corporate, or any, funding until you have a good scientific lead. The key problem for ME is the absence of the sort of lead that will convince funders of any sort. At the moment we have speculations like it might be viruses or bacteria or mitochondria but nothing really fits together in a way that one could call a lead. Brain imaging might provide the lead, or MR spectroscopy during PEM, or whatever but so far it is not there. That is why applications are considered not up to standard and not funded.

Government organisations are beginning to see that programmes need setting up that might generate leads now - both in the US and the UK I think and maybe Australia too. But you have to have scientists with a broad enough expertise base to run that sort of programme. It is no good hiring people with tunnel vision on one aspect.
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Is it possible for patients to take action to encourage lead generating programmes? Can we take actions that would support those researchers out there who want to research ME but can't get the funding? How much funding would a researcher need to be able to do that?

Because it seems to me that we can bemoan the fact that their aren't enough applications for ME research all we want but it isn't going to change anything. If it comes down to the patient sector to build the lead generating capacity up then we need to have the conversation about how that is done, so we can then start doing it, rather than turning around and wasting time, money and energy on efforts that don't try to build up our own research infrastructure

And in anticipation of the comment that it isn't fair that patients should have to do this sort of thing - well, no it's not, but that's how the world works, so lets get on and try to do something about it.
 
Fair conclusion @Andy .

Screams the need for proper lead tracking and funnelling in CRM software. Facilitates collaboration in the process i.e. sales/account management principles embodied in Customer Relationship Management software. Cloud based SAAS platforms exist.
 
Andy said:
Because it seems to me that we can bemoan the fact that their aren't enough applications for ME research all we want but it isn't going to change anything. If it comes down to the patient sector to build the lead generating capacity up then we need to have the conversation about how that is done, so we can then start doing it, rather than turning around and wasting time, money and energy on efforts that don't try to build up our own research infrastructure

And in anticipation of the comment that it isn't fair that patients should have to do this sort of thing - well, no it's not, but that's how the world works, so lets get on and try to do something about it.
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This.
 
Andy said:
If it comes down to the patient sector to build the lead generating capacity up then we need to have the conversation about how that is done, so we can then start doing it, rather than turning around and wasting time, money and energy on efforts that don't try to build up our own research infrastructure
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The patient sector is already doing it. There is an application with the MRC at present traceable back to one of our members. There has been input to NIH and MRC that is traceable back to discussions on the forums. Collaborations with Australia and Scandinavia have emerged from such discussions. I think the most useful thing is to keep up the discussions online and to welcome in researchers whenever the chance occurs. The researchers may only post here a couple of times but the message has been transferred.

More often than not ideas arise from debate in my experience. Debate is sadly rare in science but it happens here. Crowdfunding one or two people who look as if they need some pump priming might not go amiss but the right people are likely to make themselves known through their commitment. I would not go looking for people with ideas because there is a bottomless sink of people with third rate ideas ready to bite at anything offered.
 
InfiniteRubix said:
I.e. is it really the NIH's fault per se?
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Yes.

They have dropped the ball for a long time. ME is a special case and it is in their scope to focus on building research capacity, which means funding more specialist centres (which will lead to more pilot studies and in turn more NIH applications).

Most scientists don't want to build a career out of ME research as it is far too difficult to get funding, given historical trends. Many scientists who have ideas for one-off studies don't even bother putting in applications as they don't expect to be funded. Earmarked funding would provide sufficient incentives for such scientists to make applications.

It is a catch-22.

If they did their job building capacity 20 years ago there would be no shortage of applications today.
 
I feel this thread is a little half-baked vs arming for success.

I see practical narrative and benefits to synthesising and agreeing this thread (possible I've missed something). Sorry, I am playing devil's advocate, and from a position of newbie ignorance

We lose in advance is we cannot define how much the problem is:

1) the number of researchers
vs
2) criteria/process discrimination by grant bodies.
50:50, 20:80, 80:20?
...and if there is causation from 2) into 1).

Caricaturing the above tackles the main riposte to our complaints e.g. by the parroting Minister in the House of Commons debate. Other places also claim the problem is number of decent application. So it needs the above answers, which then offer:
  1. narrative with causation, clear for advocacy purposes, used by:
  2. strategies/resources/etc split optimally between a) development of a larger base of researchers (basically selling career option, funding path) vs b) targeting institutional change
Would researchers who have successfully obtained grants for biophysical ME work (NIH, MRC or other countries' equivalents) really complain about the process vs grants for other topics.

This all seems absolutely critical in terms of public policy critique and determination. If we can't answer the above % split, I think we've lost.
 
... didn't want to sound preachy, but it seems like the above simplification should already be a soundbite we have rolling off our tongues.
 
InfiniteRubix said:
I feel this thread is a little half-baked vs arming for success.

I see practical narrative and benefits to synthesising and agreeing this thread (possible I've missed something). Sorry, I am playing devil's advocate, and from a position of newbie ignorance

We lose in advance is we cannot define how much the problem is:

1) the number of researchers
vs
2) criteria/process discrimination by grant bodies.
50:50, 20:80, 80:20?
...and if there is causation from 2) into 1).

Caricaturing the above tackles the main riposte to our complaints e.g. by the parroting Minister in the House of Commons debate. Other places also claim the problem is number of decent application. So it needs the above answers, which then offer:
  1. narrative with causation, clear for advocacy purposes, used by:
  2. strategies/resources/etc split optimally between a) development of a larger base of researchers (basically selling career option, funding path) vs b) targeting institutional change
Would researchers who have successfully obtained grants for biophysical ME work (NIH, MRC or other countries' equivalents) really complain about the process vs grants for other topics.

This all seems absolutely critical in terms of public policy critique and determination. If we can't answer the above % split, I think we've lost.
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It can vary by country, I would imagine.
I find it very suspicious how before 2011/12, the Medical Research Council in the UK didn't fund any biomedical research. People did freedom of information requests and there were a few dozen applications in total (though some weren't biomedical research).
I have some details on file or maybe somebody like Graham could post some info.

Saying that, even if we got an average percentage of them passed, it would still have been a relatively low figure. Though I do accept that people in the UK could have been put off applying.

I spent a number of days writing a submission to the inquiry, commonly called the Gibson Inquiry, led by some UK parliamentarians. And generally tried to raise awareness of the lack of funding by the Medical Research Council for biomedical research for many years.

But in other countries, I don't think the lack of funding was necessary to do with bias. In the Republic of Ireland, there has only ever been one application to the Health Research Board. I don't know what it was, but I do know researchers who were interested in studying the XMRV angle around 2010 so perhaps it was on that.

I remain to be convinced the blockages that appear to exist and/or have existed in the Medical Research Council in the UK similarly applied to the NIH, which has funded a lot of biomedical research and relatively not much biopsychosocial research.

Also, historical problems may not necessary still apply now.
 
InfiniteRubix said:
I am not a lawyer exactly. My background is peculiar... I'll summarise me better another time.

Sorry, I struggled to understand exactly, with how I'm feeling :( There were lots of posts flying around on it. Can you try to type/copy under the bullets I gave, as a legal case template? Easier to discuss then, maybe in another thread.
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I can't do that kind of cognitive work but these are the main posts


Alvin said:
One could in theory make it a charter lawsuit.
The legal costs and length of such a lawsuit not to mention how much it would make the patients involved worse is not going to be pretty.
And victory will come down to luck, it would be very precedent setting in either a good or bad way depending on how it turns out.
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Alvin said:
It would be very hard to argue that research money is required under the charter, it may win but its a very long shot.
As for medical care its not going to be easy to manage that either since its just too abstract but its possible.
Medical care is more about changing guidelines and not the legal system.


This is very different, abuse and mistreatment would be an individual not systemic lawsuit, if some were locked up against their will they could sue for malpractice and could win but thats not going to lead to research money.
As for disability benefits i'm not sure how to go about that, its hard to imagine the legal system would be the first avenue to explore.
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Alvin said:
but just money is not enough

For a legal challenge to win we need a good argument that makes sense to the judge or jury (if applicable)
Excellent evidence (some money involved)
Amazing lawyers (big money often necessary)

In theory a trial is about finding the truth, in actuality it represents the values of the times its held in, how good the evidence is, the prevailing mood/ideology if you will and how convincing the lawyers are and how good they are at inventing and presenting their angles.

In other threads i have argued that we may need to turn to the courts to defeat PACE but timing and evidence is critical. If there was a huge lawsuit a couple years later it would have failed spectacularly. The "evidence" seemed rock solid. Now that we have the data and reanalysis we would likely do better. But i think we should wait until we have a biomarker or better yet a treatment, go to trial with that and we have a rock solid case with an outcome, they lied, they committed fraud and despite that we have the evidence in numbers and the biomarker hard fought and damn near impossible to deny. Then we should win big.
But thats also the thing, a trial is a risk, what if we lose despite being correct. If an appeal does not go our way then we have a precedent setting ruling against us, even though we are right. That would be worse then not having gone to the courts at all. Thats why we have to be uber strategic.
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Andy said:
Is it possible for patients to take action to encourage lead generating programmes? Can we take actions that would support those researchers out there who want to research ME but can't get the funding? How much funding would a researcher need to be able to do that?

Because it seems to me that we can bemoan the fact that their aren't enough applications for ME research all we want but it isn't going to change anything. If it comes down to the patient sector to build the lead generating capacity up then we need to have the conversation about how that is done, so we can then start doing it, rather than turning around and wasting time, money and energy on efforts that don't try to build up our own research infrastructure

And in anticipation of the comment that it isn't fair that patients should have to do this sort of thing - well, no it's not, but that's how the world works, so lets get on and try to do something about it.
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@Jonathan Edwards
I couldn't agree more Andy. I've been working with ME Action recently to try to lobby the European Union Commission to provide funding for ME Research. Lyme disease has received at least 33.9 million euros (last 10 years) for biomedical research from the EU Commission and ME has received zero. We need those with insight (e.g. researchers) to advise us on why the funding system doesn't deliver for ME. E.g. the EU Commission has responded to EU Parliamentary questions, I helped draft, by saying that ME research got zero funding; however, ME researchers are free to apply for funding under Horizon 2020. That's quite different to the position regarding Lyme; my understanding is that the Commission announced grants for specific research areas e.g. the development of a diagnostic test for Lyme (5 million euros from memory). To be polite, the Commission are being economical with the truth i.e. they are lying. We need insight to know we are being lied to/mislead.

Ron Davis pointed out that Mark Davis's work on T-cell autoimmunity in ME appears to indicate that ME is not a T-cell autoimmune disease. That's consistent with Ron's advice i.e. many of the things which are tried will fail. The SeaHorse work seems promising and there's a potential (better?) alternative (grateful for any advice/name etc.). So there are promising areas of research to develop a diagnostic test. Drugs like SS-31 could potential treat the symptoms (mitochondrial problems) in ME; so there are potential treatments.

If you check out the Emerge website you'll see that there's advice on writing to your MP i.e. to seek funding for biomedical research. Also, check out ME Actions website; it provides a lot of advice on lobbying. I'd tried that a number of years ago on my own [lobbying MPs (AFME were the Secretariat for the APPG on ME!), MEPs and MLAs (Northern Ireland Assembly)] and gave up in disillusion. Working with ME Action has been a more positive experience. I'd encourage those on this forum to try to lobby MPs etc. for funding; don't give up (as I did).

Jonathan - any advice on how to get money for researchers etc?
@Esperanza @JaimeS
 
I'd like to see more fundraising for research like simple activities like this one:


Somebody has told me previously, people don't really collect like that the US, but it could work in some other countries. We have done them in Ireland outside smallish shops, as well as bigger supermarkets, in villages, towns and cities.
 
Tom Kindlon said:
Somebody has told me previously, people don't really collect like that the US,
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There’s other things that can be done in the U.S., though.

I have only ever seen Salvation Army collect outside of shops without selling something, and only at Christmas time (Girl Scout sell cookies; school sports teams will be selling something, too)

... but sometimes it’s just a rubber [not rubber exactly but the right word escapes me] awareness bracelet for a disease. Though it’s possible to get items to sell but that could be risky in case of not selling them.

Also a while back when I was still going out, it used to be that banks and grocery stores would collect donations for different causes, often health causes. If they still do that, this could be a good way to raise money for our organizations.

Also lots of times businesses will donate stuff to sell at a raffle to raise money for charity.

There are probably many other ideas people might know of or invent, that some of us or a few healthier helpers could do.
 
Alvin said:
This private vs public funding is a red herring. No other condition requires it as a precondition to have research done. More money no matter the source means more research dollars behind getting things done but there is no requirement to have dollar to dollar one for the other or even a percentage.

These two sources are mutually exclusive.
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Which illness is likely to have the most grants approved:
illness A: with 100 grant applications
illness B: with zero grant applications

These aren't ridiculous figures. For some conditions in the US there would be hundreds of grant applications per year; for others there would be zero.

What about
illness A: with 100 grant applications
illness C: with one grant application

Or

illness A: with 100 grant applications
illness D: with two grant applications
 
Tom Kindlon said:
Which illness is likely to have the most grants approved:
illness A: with 100 grant applications
illness B: with zero grant applications

These aren't ridiculous figures. For some conditions in the US there would be hundreds of grant applications per year; for others there would be zero.

What about
illness A: with 100 grant applications
illness C: with one grant application

Or

illness A: with 100 grant applications
illness D: with two grant applications
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In other countries, if one looked over a longer period, the same sort of differences would arise.

And ME/CFS in many if not most countries would be like illness B, C or D
 
Tom Kindlon said:
Which illness is likely to have the most grants approved:
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Which illness is likely to have the most grant applications?

Illness A: $100 million of funding with an above average success rate.
Illness B: $5 million of funding with a below average success rate.

Seriously, ask any research group how much time/money/effort is required to write a research grant application from a major funder (NIH/NHMRC/MRC)? Ask them what the odds of success are (hint: it's south of 15%)

We're trapped in a catch-22, grant applications aren't being made because they are a lot of work and likely to be rejected due to being too speculative/innovative. This leads to a lack of progress and a lack of development in the field.
 
Snow Leopard said:
Illness A: $100 million of funding with an above average success rate.
Illness B: $5 million of funding with a below average success rate.
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50% of illnesses approximately will have an above average success rate and 50% will approximately have a lower than average success rate.

Also it's not clear that we even have a lower than average success rate in the NIH.

Do you accept the poster's premise that there is no connection between public and private funding?
These two sources are mutually exclusive.
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To me it's absurd.

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Edited to add:
We have big countries like Canada with 37 million people and around 500,000 people saying they have been diagnosed with it with virtually no fundraising for research from what I can see. And yet they want $80+ million a year for research. Without private money, there will be fewer researchers to put in applications with pilot data. Without pilot data, their chances of being accepted are even lower. As you say, grant application forms are time intensive. Fewer researchers will go to all the trouble of writing up a grant application without pilot data than those who do have it.
 
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