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

[Alvin]

Sorry i missed this reply

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

Unlike many i was lucky i was approved, even though its below poverty level. Though if i can't take care of myself in the not far future i don't know what will happen.

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.

I agree that we should fundraise what we can. I recall a thread on the other forum where someone wanted to spend 90K on stem cells and me or someone else said they would get a better return donating that money to OMF. No idea if they ever did.

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

Of course but as others have noted we often don't have a honeymoon period like some other diseases. For example i am full if ideas but i have to take care of myself plus i have weird cognitive issues, i can reply to this thread all day, i can't even edit an article i wrote with some changes that need doing. The working memory is shot. I also can't do simple things like research on google or read books or flyers without blanking out. My to do list grows while i fall further behind on things i need to do that are not hard for normal people from getting my affairs in order to coordinating simple things like making phone calls or getting warranty service on my defective monitor. And oddly enough in a day or two i won't be able to respond to this thread easily though a new thread i can manage for a while again. I can't cognitively come back to things and pick up where i left off. Don't ask me to explain how or why, i simply can't explain it.

 

[Tom Kindlon]

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.

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.

Wiping out society is only one bad outcome.
Wiping out hundreds of millions, potentially billions, of people is still a bad outcome.
ME or CFS is nothing like how AIDS was a few decades ago when it was usually fatal and in many countries the prevalence was going up fast due to its infectious nature.
AIDS very much won the lottery in terms of how much funding it got.
The thousands of other conditions got and get nothing like what AIDS got and get.

 

[Alvin]

Wiping out society is only one bad outcome.
Wiping out hundreds of millions, potentially billions, of people is still a bad outcome.
ME or CFS is nothing like how AIDS was a few decades ago when it was usually fatal and in many countries the prevalence was going up fast due to its infectious nature.
AIDS very much won the lottery in terms of how much funding it got.
The thousands of other conditions got and get nothing like what AIDS got and get.

Of course many dead is a bad outcome even if its not a society level event. As i mentioned earlier we don't die in large numbers from ME and often the squeaky wheel gets the grease.
I believe it was Dr Klimas who once said if she had a choice between having ME or HIV she would choose HIV.
As i understand it its treatable at present but patients have to stay on the medication indefinitely.
But i do hope HIV is cured someday

Coming back to NIH funding they have no interest in seriously funding ME research, they are playing us and believe their own rationalizations.
Until this changes we will get nowhere in achieving commensurate funding.

 

[Tom Kindlon]

I agree that we should fundraise what we can. I recall a thread on the other forum where someone wanted to spend 90K on stem cells and me or someone else said they would get a better return donating that money to OMF. No idea if they ever did.

Personally, I've no problem with people spending a lot of their money trying treatments.
I just don't think it's the optimum strategy for so many people to invest none of their money in research which could help the field in so many ways including open up new treatment approaches; give information about which existing treatments are worth trying for a particular individual; and also, importantly, which could make people worse.

 

[Alvin]

Personally, I've no problem with people spending a lot of their money trying treatments.
I just don't think it's the optimum strategy for so many people to invest none of their money in research which could help the field in so many ways including open up new treatment approaches; give information about which existing treatments are worth trying for a particular individual; and also, importantly, which could make people worse.

I agree with you here, though few have the knowledge to know whats worth trying and whats snake oil.
Alternative medicine often preys on ignorance and grandiose promises/marketing. Beyond ME i know many people who believe in ridiculous well disproven nonsense with their dollars.

In another thread I have wondered how AFME is getting their money, in the context of they are taking patients money and using it to harm their donors and i would rather see them dissolved but all the same they are bringing in fairly large amounts of cash that could be better used for research instead of harming patients.

 

[dreampop]

I read the HR piece. I actually thought this might be a possible outcome.

1) Big time grant recipients (Lipkin, Hanson) got long term grants and are probably working on them and not applying annually.

2) Early 2000 grants were not of high quality. I remember a lot of them were still about the common virus (e.g. EBV) and persistent EBV is a dead theory.

3) Some of the grant proposals were tangentially related to CFS. Can't remember where I read them or what I were, but a lot were about EBV/immune activation and no specific to CFS really.

4) Still really few competent researchers.

Is there a list anywhere of the grants recieved vs grant proposals (specific ones).

 

[Tom Kindlon]

Of course many dead is a bad outcome even if its not a society level event. As i mentioned earlier we don't die in large numbers from ME and often the squeaky wheel gets the grease.
I believe it was Dr Klimas who once said if she had a choice between having ME or HIV she would choose HIV.
As i understand it its treatable at present but patients have to stay on the medication indefinitely.
But i do hope HIV is cured someday

HIV/AIDS has changed over the years. In some ways one could say this was due to the success of the research programmes. In the 1980s and early 1990s, I would definitely have chosen ME overHIV/AIDS.
That's when the big funding initially came for HIV/AIDS. Then they had a field of researchers who would submit applications.

Coming back to NIH funding they have no interest in seriously funding ME research, they are playing us and believe their own rationalizations.
Until this changes we will get nowhere in achieving commensurate funding.

I'm not convinced.

But as I suggested and you suggested, they could be tested with more applications.

It makes it easy for them to say funding is low because of low numbers of applications when there are are low numbers of applications. It is not a good situation to be in when there are so few applications.

 

[Alvin]

But as I suggested and you suggested, they could be tested with more applications.

If you can convince researchers who have given up applying to all spend time writing new application or rejigging previous ones and apply again and everyone who has come in to ME research in recent years to apply we could get probably dozens of applications maybe even a hundred or more. I will be the first to cheer if some are funded but its still a safe bet NIH is BSing us.
The man hours required for this will be seen as a huge waste by those who have been burned repeatedly already but if you can convince them i'm all for it.

I seem to recall Dr Klimas recently finagling some ME money from a Parkinsons charity because she could not get any money from NIH for ME, she could get money for GWI

 

[Tom Kindlon]

If people think that the NIH won't fund much research, all the more reason to have private funding so there is funding there to support as many research studies as possible.

 

[Alvin]

If people think that the NIH won't fund much research, all the more reason to have private funding so there is funding there to support as many research studies as possible.

Researchers who have been burned over and over and over give up trying because how much time do you want to blow to bang your head on a brick wall till it bleeds?

As i said i support private funding, and if we can get millions or tens of millions or even hundreds of millions from private donors i would be ecstatic and so would a whole host of researchers.

 

[DokaGirl]

I agree, those who can could give, say monthly. Less noticeable than a onetime bigger chunk out of your budget.

People may want to give, but don't know which groups or institutions are best. Two I would suggest are the OMF, and the Solve ME/CFS Initiative. Groups like these seem to make the funds go further. I am a bit wary of donating to universities, as they are used to working in a big money mind set. Plus, from what I've seen some grant funds go to general administration, etc., and don't end up directly funding projects. Maybe that's not how all institutions work, but it's what i've seen.

At any rate, I strongly agree, we need to do more of our own funding. Maybe we need a coordinated effort on this, or a centralized organization. Or maybe a centralized organization coordinating fund raising would not be workable.

 

[Jonathan Edwards]

This seems like fake news to me.
The problem mentioned is that researchers are not applying. So it is not the fault of NIH. If there is a problem it is that researchers are not just not putting in good ideas, they are not putting in anything.

I don't believe this has anything to do with Sharpe's nonsense about harassment. Biomedical researchers think that is just silly. The only people 'harrassed' are the psychology people.

So what is going on? I don't think we know but figures like these may not mean much at all. They could mean that investigators who have been putting in three applications a year desperately trying to get funding now have a centre grant and so don't need to put anything in. It could have to do with the US government's disastrous general approach to research or university cuts or anything.

I hear a completely different story. Try this for cheering you up, a message from Jo Cambridge on Flinders Island in the Tasman Sea this morning:

Having fab time on Flinders. Riding down the beach and through the bush. Lots of snakes, wallabies and occasional wombats. Sian and you would love it here too I think. Beautiful and free of people!

EMERGE meeting in Geelong was excellent…good science and really nice and professional charity – Heidi is excellent CEO. I have been invited to do a short sabbatical at La Trobe to sort out their B cell lines….tempted. Do you know Robeert Phair? Bright chap – and also had nice chat with your Maths mate…Travis who sends best regards. All looking very positive and metabolism angles …fits with our data. Underlying cause of course not known (!!!). I do think however that Ca traps may be worth following up and the kallikreunin pathway of Mady Hornigs is rearing up again..

Hope you are well – back next Wednesday.

xxx

 

[Londinium]

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.

This this this. My OH often has medical charities as clients and it is impossible to overestimate how important charities' and other private donors' roles are in pump-priming research. Organisations like the NIH or MRC will generally only step in once a charity-funded pilot study has shown some interesting potential. This is the same for all diseases.

If ME/CFS applications have roughly the same percentage success rate as other diseases, then shouting at the NIH is misguided. We need to work out where the blockage is, and start there.

 

[Hoopoe]

Try this for cheering you up, a message from Jo Cambridge on Flinders Island in the Tasman Sea this morning:

Having fab time on Flinders. Riding down the beach and through the bush. Lots of snakes, wallabies and occasional wombats. Sian and you would love it here too I think. Beautiful and free of people!

EMERGE meeting in Geelong was excellent…good science and really nice and professional charity – Heidi is excellent CEO. I have been invited to do a short sabbatical at La Trobe to sort out their B cell lines….tempted. Do you know Robeert Phair? Bright chap – and also had nice chat with your Maths mate…Travis who sends best regards. All looking very positive and metabolism angles …fits with our data. Underlying cause of course not known (!!!). I do think however that Ca traps may be worth following up and the kallikreunin pathway of Mady Hornigs is rearing up again..

Hope you are well – back next Wednesday.

Thanks, this is nice to hear. What metabolism angles is she referring to? I'm not sure how to best describe what has been found. That cells are in a hypometabolic state that doesn't appear to be due to a mitochondrial problem?

Also, what did Mady Hornig say about kallikreunin?

 

[Jonathan Edwards]

Thanks, this is nice to hear. What metabolism angles is she referring to? I'm not sure how to best describe what has been found. That cells are in a hypometabolic state that doesn't appear to be due to a mitochondrial problem?

Also, what did Mady Hornig say about kallikreunin?

No ideas I am afraid. I didn't get to the conference. Goodness knows what the researchers have been agreeing about but it cannot be bad if people from three continents are all having a good time sharing ideas.

 

[duncan]

Goodness knows what the researchers have been agreeing about but it cannot be bad if people from three continents are all having a good time sharing ideas

...and resumes. And Mai Tais.

 

[Jonathan Edwards]

What this? Jo Cambridge never touches anything as dilute as that!

 

[Simone]

Try this for cheering you up, a message from Jo Cambridge on Flinders Island in the Tasman Sea this morning:

Having fab time on Flinders. Riding down the beach and through the bush. Lots of snakes, wallabies and occasional wombats. Sian and you would love it here too I think. Beautiful and free of people!

EMERGE meeting in Geelong was excellent…good science and really nice and professional charity – Heidi is excellent CEO. I have been invited to do a short sabbatical at La Trobe to sort out their B cell lines….tempted. Do you know Robeert Phair? Bright chap – and also had nice chat with your Maths mate…Travis who sends best regards. All looking very positive and metabolism angles …fits with our data. Underlying cause of course not known (!!!). I do think however that Ca traps may be worth following up and the kallikreunin pathway of Mady Hornigs is rearing up again..

Hope you are well – back next Wednesday.

xxx

What a lovely message. Thanks for sharing. I’ll pass it along to Heidi and the Emerge team, who I’m sure will appreciate it.

 

[Alvin]

They are playing us and winning. Instead of blaming the culprit we accept their gaslighting and let them off the hook. We are then getting what we deserve.

Interesting how their ridiculous assertions don't apply to other diseases, young researchers afaik is not a universal NIH requirement, the funding numbers are far more commensurate with disease burden for many other conditions, other conditions don't have their money taken away and redirected because they believed those conditions are fake.

If they want to prove me wrong then i would love to hear what exact percentage of applications are accepted (backed up with verified numbers) and a commitment to not only keep that percentage but expand upon it. There is no need to have such a ridiculous condition in the first place, they should have an amount set aside and fund any good applications based on reasonable criteria. You have money and someone wants to test homeopathy, screw them, someone has real ideas such as clinical trials on reasonable repurposed drugs or wants to do pure research such as identifying biomarkers or genetic or immune research or even testing drugs on a blood sample model and so forth and they are making reasonable requests and especially if they are esteemed scientists who have track records of success in other diseases then they are likely putting in decent applications that deserve funding.
As researchers have stated they have no problem getting money for other conditions that are not ME/CFS. Is the fact they are asking money for our disease suddenly rotted their brains to nothing? Apparently if we believe NIH.


Then i would like to know why researchers have been denied including many that we talk about frequently on S4ME. I assume they give each rejection letters, i'd love to see them. Calling Stanford an illegitimate medical research institution is a fine example of why we should believe NIH is acting is good faith
Then i would like to see if they would accept those same applications today (since they have turned a new leaf). In writing.

If they can provide all that (with the appropriate permissions) then i would hope those who have been burned so many times they no longer apply to be willing to apply yet again (with some additional assurances added). Then we can get serious funding.

I'm not holding my breath but please NIH prove your newfound "commitment". I dare you.

 

[DokaGirl]

I agree with those who have said private funding is very important. However, I am concerned if this funding greatly improved, governments would feel let off the hook. A politician told me private funding is the way a lot of progress happens. A discouraging message to hear. There are of course glaring political agendas behind not providing government funds for this disease.

I fully realize Canada is a small player in this scenario. It could contribute more, as our country finds multi millions for foreign aid, favoured in-country projects, plus shelling out large amounts to the wealthy natural resources sector. But I have veered into no man's land re our forum rules, so back to ME.

According to Health Canada, from the year 2000 to 2016, the Canadian federal government spent $1.45 million on ME research. Not all of this was biomedical.

Some went to support a systematic review of ME through the Cochrane Library: "Exercise therapy for chronic fatigue syndrome".

There were likely other BPS funded studies as well; I don't have that info readily available.

A 2015 Statistics Canada (federal government department), Canadian Community Health Survey, reported 561,500 Canadians were medically diagnosed with ME.

In 2017, that figure rose to 580,000.

The Public Health Agency of Canada (an arm of the Health Canada) acknowledges there are over 500,000 citizens with ME. This government page has been archived - therefore the link isn't working....

With another $375,000 spent from 2016 to the present, that's a total of $1.825 million, or about 17 cents per pwME per year.

An insignificant amount.


In 2016, Canadian federal government funds of $200,000 per year for each of 3 years was offered to study ME.

This was big money, as earlier funds had been so thin.

The only application, a biomedical one, was panned, partly because reviewers said ME is not a physiological disease.


Until very recently, North America governments have been in support of the BPS model. And, the questions does arise as to whether this actually continues. Combine paltry funding with reviewers who see ME as imaginary/faulty illness beliefs and deconditioining, and researchers who are tired of bashing that particular rock against their heads, and you have less applications to governments. On the other hand, the Solve ME/CFS Initiative has more applications than it can fund, so I understand.

To give the NIH, and the Canadian Institutes of Health Research (CIHR) their due, I think they have made plans to assist researchers, and grow this field. The NIH April 4/5 conference is I believe, going to do some of this.

But, because this is all so achingly slow, one does still question the authenticity of the statements about improvements are coming.

Back to private funding - somehow, and I don't have answers for this, but somehow, the community has to act to fund more research itself. I donate to the OMF.

ETA:

(Attempting to post the non-existent link from the Canadian Public Health Agency (PHAC) re the numbers it acknowledges, messed up my initial post - so if you're reading this edited version, I apologize for changes - the main points are still here.)

ETA #2: Here is, I hope, the link to the PHAC website acknowledgement of the numbers for ME at over 500,000.

https://www.canada.ca/en/public-hea...ique-syndrome-myaligic-encephalomyelitis.html