The Real Problem With Chronic Fatigue Syndrome (ME/CFS) Funding: blog by Cort Johnson

[AndyPR]

Cort doesn't convince me with this, to me his conclusion doesn't seem to be supported by his arguments, but perhaps thoughts from others can clarify it for me.

The Intramural NIH study and the NIH Research Centers are a kind of dodge. Yes, they’re tasked with, and will provide, new insights into ME/CFS, but their real purpose is to do one thing: to get individual researchers to write more research grant proposals. That’s because most of the NIH’s money goes to individually funded grant proposals.


The problem, it turns out, is mostly us…

The ME/CFS community has long assumed that the problem is the NIH. The NIH IS a problem, but the truth is is that the real problem is probably us. A Freedom of Information Act request revealed that loading grant review panels with ME/CFS researchers did not increase the number of grant applications; in fact, it’s possible that the number of applications has declined. That was a shock, since for more than a decade, we’d assumed that poorly representative grant review panels were keeping ME/CFS researchers from applying for grants.

Until we crack the low grant application problem we’re going nowhere as a field. Check out the real problem with ME/CFS funding on the IACFS/ME website.

• The Real Problem with ME/CFS Funding

https://www.healthrising.org/blog/2017/08/27/real-problem-chronic-fatigue-syndrome-mecfs-funding/

which, as can be seen in the quote, then links to the actual article
https://onedrive.live.com/view.aspx...t=file,docx&app=Word&authkey=!AJYntvqR_-yV1LM

 

[Simon]

This short survey suggests that the ME/CFS grant review panel is open for action. While grant application success rates at the NIH will probably never be high, this survey, if correct, suggests that poor participation by ME/CFS researchers, not bias may be the major stumbling block for this field. If that's true * then bringing more investigators in is a critical need*.

Well, the point about bringing in more researchers being key is the NIH's conclusion too, and I'm sure it's right. The new centres will help, but the NIH's prime method for attracting new talent to a field is a nice juicy RFA. For actual research studies, not simply for centres. That's what the NIH has failed to deliver so far.

 

[aimossy]

The standard grant process caters for hypothesis driven research and not investigative research and as a whole Korochetz stated 12% of the grants in the standard process get funded.

There are only a couple of grants available outside hypothesis driven work from what I have been able to see. One is an obscure small one that Lipkin amd Hornig tapped into for meritorious work after being rejected twice for investigative work. The other is max 2 years for about 270k or 280k.

You need investigative work and pilot work to generate hypothesis and then a large field of scientists hammering the standard grant process with hypothesis and access to decent cohorts. How many of the small amount of current researchers in the field of ME/CFS have had to deal with constant rejection. Korochetz has stated that high quality grant applications have also been rejected.

I agree with Simon about the need for a juicy RFA when the system is not designed for giving a leg up to an unestablished disease group.

 

[alex3619]

Money is not a magic bullet. Low funding for long periods (decades) means there is very little interest. I do not expect a quick solution. This is about the tortoise not the hare.

This also ignores the social and cultural and political issues ... there is serious bias out there against ME and CFS research. That includes in research faculties. Lots of researchers will not want to get involved even with money unless there is a definitive direction in which to pursue research.

The issue about investigative versus hypothesis driven research is important. Not funding basic science into ME means the field lacks enough data for good hypotheses. Some studies are working on that, thankfully, but hypotheses will become more prevalent once we have a good idea about what kind of pathophysiology is involved. We still don't know enough, but things are advancing fast enough we can see change now, whereas years ago change was glacial.

 

[charles shepherd]

There is a fairly detailed and recent report (link below) on international ME/CFS research funding statistics that was organised by the CMRC here in the UK:

Executive Summary

It is widely acknowledged that ME/CFS has faced significant under-investment in biomedical research over many years, both in the UK and overseas.

In the past decade, there have been efforts by charities and researchers in the UK to redress this imbalance, and these efforts culminated in the award by the Medical Research Council (MRC) of five discrete grant awards under its “Understanding the Mechanisms” call in 2012, at a cost of approximately £1.65 million.

Today, ME/CFS research remains a highlighted area and a high priority for the MRC, yet research activity remains chronically low.

There also remains a pressing need to raise the profile of the illness among active researchers and research-funding bodies and to obtain targeted investment.

Surprisingly, there has never been a comprehensive analysis of research funding into ME/CFS, so we
still do not have a clear picture of the levels of funding provided and how these have changed over time.

Also, little is known about how funding for ME/CFS compares with funding for other illnesses, including chronic conditions with which ME/CFS is directly comparable.

The UK CFS/ME Research Collaborative commissioned ÜberResearch to interrogate its Dimensions
database for relevant funding information.

The resulting report presents hard evidence of the chronic lack of research funding for ME/CFS from major funding agencies.

I hope that it will prove to be a foundation for larger mainstream funders to reassess their attitudes towards ME/CFS and review their funding policies towards the illness.

Key Message 1: The scale and impact of ME/CFS on individuals and society is significant. Around
250,000 people in the UK have ME/CFS which is at least as disabling as multiple sclerosis and
congestive heart failure. Many more people – carers, children and family members – are directly
affected by the illness each year. The economic cost of ME/CFS was estimated at £6.4 billion per
year in the UK in 2006, and this figure will certainly have increased since.

Key Message 2: Research funding has been low-level and patchy, and investment needs to be
increased, particularly for high-quality studies of biological mechanisms and treatments.

Key Message 3: The skills, expertise and insight of researchers outside the field are required to
tackle the gaps in knowledge and understanding about ME/CFS.

Full report (pdf) available here in the MEA document archive:

http://www.meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf

Dr Charles Shepherd
Hon Medical Adviser, MEA
Member of the Executive Board of the CMRC

 

[Simon]

Money is not a magic bullet. Low funding for long periods (decades) mean there is very little interest. I do not expect a quick solution. This is about the tortoise not the hare.

This also ignores the social and cultural and political issues ... there is serious bias out there against ME and CFS research. That includes in research faculties. Lots of researchers will not want to get involved even with money unless there is a definitive direction in which to pursue research.

I'm a lot more optimistic than that, at least as far as money making a difference goes. Sure, longer-term, a big NIH budget, which will probably only come from lobbying Congress to mandate mecfs funds, is a tortoise situation (though the tortoise still needs to start the race).

But, say, a $20m RFA from the NIH now would really speed things up. That's way bigger than the typical RFA of around $3 million so would say to researchers in other fields: the NIH thinks this is really important, you should take it seriously. I think that would be a big step in overcoming the very real prejudice problem you mention.

And of course, as well as attracting the essential new talent it will get critical research done too, making progress, generating more leads to attract more researchers. Much biomed mecfs research to date isn't good enough (and not just for reasons of size/funding). We need new blood for scale and for quality.

And while the NIH needs to open up to hypothesis-free work, it's worth noting that probably two of the biggest leads to date, rituximab and the T-cell work of Mark Davis weren't hypothesis-free work. (I don't know what Mark Davis's hypothesis was, but probably: there's plenty of evidence for immune dysfunction in mecfs, but no one has really pinned down what's going wrong - let's use new technology to probe T cell action.)

A large RFA isn't the ultimate answer, but it would accelerate progress in the field.

 

[aimossy]

The amount of work needed to address the stigma and bias is huge and also the work needed to tackle congress.

The NIH are issuing enough funds for some collaborative centers and a data management center to set up some crucial infrastructure and do some investigative research. But the amount for the actual work they need to do is very low and slow.

It almost seems a bit like opening a factory with only having a 5th of the materials needed to make the product and receiving material over a long period of time. It will take many years to collect all the materials in order to finish making the product slowing things down massively in generating more applications to the standard grant process. They also don't have many funds to look into making other products.

If there was even a modest RFA issued for priority need research areas as identified in the RFI the NIH put out it would go a long way to generating more research faster in the short term. The collaborative centers researchers and new researchers could apply.

I think new researchers on their own may also be put off by the criteria and difficulty with accessing cohorts and samples? It may seem a quagmire to them. It might be good to have something easy access for new researchers via the new centers and maybe some biobanked samples. I can't remember what is available sample wise.

 

[Dolphin]

While advocacy is one thing that might achieve more funding (in the US), it's not the only way. I agree with Cort that we need more applications for funding. This can be achieved by supporting more researchers to do pilot studies who then can present data to help applications.

There are a lot of people with ME/CFS in the world. If there was more of a focus on raising money privately, either through direct donations, fundraising (from other people) and/or indirectly (e.g. a percentage of purchases from Amazon and elsewhere can go to charities), it certainly wouldn't do any harm.

An example of a success story: something like $1 million was raised privately in Norway a country of 5 million people in a relatively short period of time.

 

[alex3619]

A large RFA isn't the ultimate answer, but it would accelerate progress in the field.

I agree we need it, and it will help. I just think we cannot presume it will create rapid change by itself. Its nice if it does, but I think the real benefit will be over time if increased funding continues. Consistent funding will, in my opinion, do more than a funding spike. Generating interest is about networking and publishing new findings as much as its about making money available.

 

[alex3619]

This can be achieved by supporting more researchers to do pilot studies who then can present data to help applications.

This is a very promising thing that advocacy can indeed do. Pilot studies can be set up with crowdfunding, for example. What we need to do is promote the idea so researchers know there is potential interest.

 

[medfeb]

Surprisingly, there has never been a comprehensive analysis of research funding into ME/CFS, so we
still do not have a clear picture of the levels of funding provided and how these have changed over time.

Also, little is known about how funding for ME/CFS compares with funding for other illnesses, including chronic conditions with which ME/CFS is directly comparable.

This may be true in other countries but in the US, we know quite a bit about the level of NIH underfunding over the years (about $5M average since 1995) and how the current funding compares to other diseases with similar debility. https://www.dropbox.com/s/t1yezh5okqnx2oj/MECFS DALY paper 2017 - summary.pdf?dl=0

We have a broken research-drug development ecosystem. I agree that digging us out of this hole is going to take time. But the amount of time will reflect the amount of targeted funding through a program of RFAs over multiple years. The center grants are good but alone not enough to fix these issues in a time scale that really matters for patients suffering today.

 

[neweimear]

So what does that ultimately mean for patients in the here and now? How long will we be waiting for treatment....a decade? Please dont see more than a decade, some of us could be pushing up daisies at that stage...

 

[Dolphin]

So what does that ultimately mean for patients in the here and now? How long will we be waiting for treatment....a decade? Please dont see more than a decade, some of us could be pushing up daisies at that stage...

Nobody can tell you that. A finding at any time could mean that an existing therapy will work.

But, speaking to nobody in particular, I think nobody should rest on their laurels. I have been ill 28.5 years and diagnosed and severely affected for 23 years. Progress has been slower than I would have liked. I think that if more people/families had donated and/or fund-raised for research it could have helped.

 

[user9876]

And while the NIH needs to open up to hypothesis-free work, it's worth noting that probably two of the biggest leads to date, rituximab and the T-cell work of Mark Davis weren't hypothesis-free work. (I don't know what Mark Davis's hypothesis was, but probably: there's plenty of evidence for immune dysfunction in mecfs, but no one has really pinned down what's going wrong - let's use new technology to probe T cell action.)

I wonder if a good starting point would be a big project to try and replicate interesting results and to see which stand up to tests at scale and which don't. This would then allow more directed research into those areas that look reliable.

I would also like to see results replicated over time with the same patients to see what varies with different fatigue levels

 

[neweimear]

Nobody can tell you that. A finding at any time could mean that an existing therapy will work.

But, speaking to nobody in particular, I think nobody should rest on their laurels. I have been ill 28.5 years and diagnosed and severely affected for 23 years. Progress has been slower than I would have liked. I think that if more people/families had donated and/or fund-raised for research it could have helped.

Yes Dolphin, I do as much fundraising as I possibly can but I think all patients or patients families should be doing the same thing. There is power in numbers. But it is up to each of us to do what we can.

 

[Cinders66]

I am a big believer in the state doing more so fully believe pressure on NIH in USA and MRC/NIHR in UK is needed and in uk there isn't any. In USA fortunately there's quite a lot which is now reaping rewards but I get really frustrated when even Lipkin is saying to NIH officials look the amount you are giving (more than uk state btw who are doing nothing but conferences) is simply inadequate and we could use so much more, they sort of say yes we know but it's all you're getting. I think when an illness has been neglected for so long it's a) easy for them to think quite small gestures "will do" because hey you've been used to nothing for years and b) it's easy for some advocates to accept small gestures because hey it's still ten times the near nothing we have always had.

Regarding private donations from the community I think a small 'aware" population do a lot. But there's many issues
1) I think many mild to moderate just hope they will get better themselves and are, especially from fatigue clinics, uniformed about the tragedy of entrenched and severe ME even existing and needing help. If you think everyone just gets better like you and don't know of potential severity then why would you fundraise for this? And I've seen several well known cases in uk MP Yvette cooper, a top royal harpist who just seem oblivious to chronic and grim forms of the illness
2) the low income of many with ME- most aren't working
3 ) the stigma/CFS name/myths meaning that even when people post on their Facebook walls etc no one likes or donates or shares things about ME like they would cancer etc.
4) coffee morning fundraising isn't the way to Raise big cash and we aren't attracting public sympathy or celebraty endorsements in the current CFS climate in uk or abroad to bring in the millions per year MS or Parkinson's charities do which is why MS gets twenty times / year papers published than us.
5) the CFS narrative has poisoned families so they simply blame the patient rather than think they really need help, some on the 25% say my family don't support or understand and are far nicer to other less sick members. I don't think CFS families are just particularly lazy, there's reasons why private fundraising doesn't happen, probably driven by lack of fundamental sympathy or ignorance about the illness



Norway rituximab trial had worldwide donations. I myself gave a lot from uk because was aware it could easily not happen and are big chance. Dr Maria was a phenomenal advocate too getting in the press etc reaching audience and so on. It's taken a lot longer, several years, for IIME to reach £1/2m rituximab target in uk whilst MRC could have funded a trial years back if wanted.

If Ron Davis, Mark Davis, Jarrod younger, Montoya, Hanson and lipkin were each given $5-10m wouldn't that kick start things in an impressive way?

 

[neweimear]

Yes of course it would kickstart things...I agree with most if what you say. It is depressing!!! I just wonder is it best to accept that chances of treatment in our lifetime is pretty low, apart from rituximab. The suramin story is another disaster. Is it best to just accept this is it rather than getting hopes up and being constantly disappointed.
It is very hard to accept but I am so deflated from all the negative commentary on progress, lack of NIH funding etc... is it time to just get REAL???

 

[Cinders66]

I'm very severe life is too bad to accept as it is. Research and treatment is only hope. I understand that view but it would be disastrous if more people just gave up and resigned to status quo, I think many have already.

Yes of course it would kickstart things...I agree with most if what you say. It is depressing!!! I just wonder is it best to accept that chances of treatment in our lifetime is pretty low, apart from rituximab. The suramin story is another disaster. Is it best to just accept this is it rather than getting hopes up and being constantly disappointed.
It is very hard to accept but I am so deflated from all the negative commentary on progress, lack of NIH funding etc... is it time to just get REAL???

 

[neweimear]

I know Cinders, it is hard to keep fighting and hoping against all the odds. Ron Davis inspires most hope, do you agree?

 

[Cinders66]

I know Cinders, it is hard to keep fighting and hoping against all the odds. Ron Davis inspires most hope, do you agree?

Oh yes, he's an inspiration & this type of research along same lines

https://www.healthrising.org/blog/2...e-syndrome-energy-problems-fluge-mella-study/

Is really impressive too, we have advanced in two years rapidly in this energy production area so I'm hopeful it will yield.