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

<https://www.healthrising.org/blog/2...ommitment-to-chronic-fatigue-syndrome-me-cfs/>

 

Disappointing. We need to support more pilot studies so there are more interested researchers with data who can apply for federal funding.

 

I might be misinterpreting, but this lack of applications reads like a lack of awareness. Sharpe et al's recent lies won't help either...

I'm not in the loop. Could this be construed and marketed as a pot of unspent allocated cash that researchers should be excited to apply for? There are never enough grants in any field...

Personally, I've wondered about massive data projects combining wearable tech, pedometers, HRV RR capable chest straps, sleep data, etc. Data science and/or machine learning discipline is widely spread and relevant, allowing a wider supply of portable/reapplicable research talent. The Q is how to also have enough ME-informed lead researchers and scale them across projects.

Then again, ME has gifted me inordinate capacity for half baked thoughts...

 

I.e. is it really the NIH's fault per se?

 

They have no real interest in funding ME/CFS research.

I have talked to several researchers who basically said (reading between the lines) that they don't apply anymore because they have been denied repeatedly.

Their criteria and public statements make no sense and are obviously designed to go in circles and gaslight us, and if they were serious pathetic rationale and gaslighting would be unnecessary.

Lets not forget the letter Dr Davis posted a couple years back from NIH. If organizations with Nobel prize winners in medicine can't get funding that means no one can which is what is going on here

 

Oh. That's sad.

Can that be documented in detail?

 

Imagine combining all that with both biobank data and samples... Gold mine of feasible data.

And biobank is NIH funded... Nice ROI (return on investment)

 

Dr Davis and his team got funding in the end for an individual grant.
They were never going to fund all the research centres; if they had approved Dr Davis' one, one of the existing centres would most likely not have been funded.
My understanding is most researchers will generally only have one big NIH grant on a topic at a time.

 

Then they are funding constrained and no new people can get funded since there is no money. But they claim the opposite. Can't have it both ways NIH.

I remember they got a small grant funded but if they have money and they want to fund research many researchers and institutions want money but the NIH won't give it. And i speak of reputable experts. And if only one of an institution will get funded then OMF can break up and get more funding for different people. I'll bet money it won't make a lick of difference.

The NIH is pretending to act in good faith but they are not. They claim to want applications then reject them over and over. Then people stop applying because they won't be approved and it wastes time and resources then NIH claims there are no applications or not enough (thereby explaining away why they won't fund the ones that still come in). They also claim they want young researchers but if they apply they are not good enough to fund since not enough applications are being received. Not to mention the ageism in such a condition.
It almost sounds like a manufactured chicken and the egg problem but the real problem is NIH is either fooling themselves or they are doing this intentionally. I would be interested to know which one it is, though my bet is they are intentionally fooling themselves.

 

I don't think it is. If we want to get the near $188 Dimmock et al. estimated would be our due based on the disease burden https://www.oatext.com/Estimating-t...ates-and-its-relation-to-research-funding.php, I think we need to be raising a lot more privately.

There has been an increase in fundraising and donations, particularly for the Open Medicine Foundation in recent years, which is great, but I still think that the 17-30 million people with illness, maybe 100 million close relatives and the hundreds of millions of contacts of people with the illness could raise a lot more. In most of the countries in the world, there seems to be few if any fundraising events for ME/CFS research.

One person posted recently that the MS Society in the UK had raised nearly £300 million for research over the years. By comparison, ME/CFS charities in the UK have raised a few million over the years for research, even though the prevalence is twice as much and they are of a similar severity (though more people die from MS). And the UK is one of the best countries in the world for raising money for ME/CFS research. In most countries in the world, very little seems to have been raised.

It seems quite likely to me that the amount of federal funding and the like is a function of how much is raised privately.

 

I wouldn't class a grant of $3.9 million as small: https://www.omf.ngo/2018/06/26/davis-nih-grant/

 

745K a year sounds like a lot but its not.

 

The NIH only funds a percentage of grant applications. This could similarly apply to research centres. Cort mentioned somewhere and it is my impression also that the success rates for ME/CFS grant applications in the US is not lower than other conditions.

To make the best progress in the field, and keep researchers interested, you need private money to fund pilot studies and ideally also some bigger studies that don't get approved for funding or researchers will move on to other conditions.

 

Then an easy solution is to flood them with applications. It won't work because they are manipulating us but if they are being honest all of a sudden after decades of screwing us over then this is the simple solution that will solve our problems

Claiming its a chicken or the egg situation is a divide and conquer tactic. How long are we willing to fall for this fraud?

Then OMF is wasting its time and should be disbanded immediately then money will come

I agree more private funding would be great. Many of us can't even get below poverty level disability benefits so i don't know how much blood we will get from stones but i am saving up extra for David Tuller this year, it cuts into the food budget but it needs doing.

 

The US is only one country in the world. Similar patterns exist in other countries. Campaigners in Canada want 80 something million dollars per year for research. How many active researchers are there in Canada?
I don't see such large sums being granted without more researchers. And with such little amounts of private funding around for Canada, for example, I don't see that changing dramatically.

I think a strategy that tells people it's all one big conspiracy and the *only* reason we don't have hundred of millions of dollars of funding each year is because of bias in grant making bodies is not an optimum strategy. I think to get hundreds of millions of dollars of funding per year, we will need to raise more privately but there doesn't seem to be much focus on raising money privately for research. There will for example be lots of millions missing protests this May, but how many fundraising events for research will there be (outside the UK)? I am, of course, grateful for the people who do the protests, I just think some of that energy, particularly of healthy people, could be harnessed for fundraising either at that time or another time. Fundraising events also raise awareness both through the people who come across them and also sometimes a media articles. Or maybe the millions missing protests could themselves involve collection boxes and the like (somebody told me these sorts of street collections are not uncommon in the US, but they are in other countries).

 

The only way the US will get more funding in ME/CFS is through Congressional Action. So I'm linking this new thread by @Emily Taylor which is very important for folks in the US
https://www.s4me.info/threads/urgent-advocacy-action-house-fy20-funding-requests.8698/

 

I am sorry to hear of the difficult situation you find yourself in.

However, I think a lot more could be raised privately by patients donating. A lot of patients I have come across have spent thousands on speculative and sometimes very speculative therapies; sometimes the figures will be 5 figures in Euros/dollars/pounds. So I think if they thought it was important, many more than currently do could donate something. And if you get people donating, they often then start looking around for other sources of funding so might encourage family members to fund-raise.

We are not a rare illness. We have power in numbers if it can be harnessed.

 

When HIV came along it didn't live in a catch 22 for generations.

Its not a conspiracy, its a case of medical neglect by the funding authorities and fraud from bad actors. PACE certainly didn't help us gt biomedical research and our poor health does not help us advocate. Other things also get in the way, no biomarker or disease mechanism, the fact that most people are diagnosed after they are moderate/severe, we don't die in large numbers from ME and so on. I doubt MS was taken seriously because they fundraised privately, they were taken seriously because modern medicine could see the damage in MRI/CT scans.
Fundraising is great. We need it. We should also capture and redirect what AFME gets into something more productive instead of what they do which is harming patients and playing both sides/gaslighting us.
But again i don't think HIV got institutional funding because they fundraised enough to convince the NIH and others to fund research.

 

HIV got institutional funding most likely because it was fatal and infectious. The whole of society could have been wiped out if it wasn't controlled.

HIV is only one of thousands of conditions; the others generally get nothing like the funding it has got.

 

Since its sexually transmitted or by body fluids not so much but it does kill untreated patients. A deadly virus or bacteria would be a very different story, bubonic plague, Smallpox, Ebola, Sars, Zika etc are pandemic level dangers.

So why would private fundraising cause countries to fund ME research? Whats the mechanism behind this?