Trans-NIH ME/CFS Working Group Telebriefings 2020-2021 (next telebriefing March 30 2021)

The LSTM has received approximately $3,543,621 from their NIH grant since 2013.
https://projectreporter.nih.gov/project_info_history.cfm?aid=9272477&icde=31258613

Bhupesh Prusty is thinking of applying.
https://twitter.com/user/status/1233933951695233024


I think I remember reading someone saying he is thinking of applying jointly with Naviaux, which ties in with what @Ron quoted.

ETA: It was @Ron who asked Bhupesh Prusty about jointly applying with Naviaux
https://twitter.com/user/status/1214618055290081281

 

I don't expect researchers to comment but .......
https://twitter.com/user/status/1248561426165198850


I'm pretty sure the applications rejected had promising preliminary pilot data to back up the project proposal as that is what OMF is able to fund and for which they have presented interesting avenues. Where do you go from here, and what does this mean for the future of the Stanford and Harvard research centers and the long term future of the three NIH funded CRC's...... Remember one of the main goals of the CRC's was to seed future R01 grants which hasn't happened to date.

 

And lets not forget that private money and I believe NIH money funded Ian Lipkin/Mady Hornig team to collect ME/CFS blood and other specimens. However they never received funding to fully process those samples. Ugggghhhhhhh.

I think the samples for that project were moved from Columbia to NIH last year. Some info here from an NIH call last fall.
https://www.s4me.info/threads/news-from-nih-me-cfs-webinar-october-17-2019.11766/#post-224981

 

I understand her passion but this doesn’t prove the statement is disingenuous. For example, only something like 14-16% of applications generally get passed so only around 1 in 6 or 1 in 7. The data I have seen in recent years does show the number of applications is low.

This doesn’t seem to be a US-specific issue either: there is a relative lack of ME/CFS researchers in general around the world.

 

A rate of ~15% will never sustain a growth in this area as researchers need sufficient continuous funding for their teams to be viable. No researcher can survive with this rule by studying ME alone which is why we see many broaden their disease base e.g. Jarred Younger, Nancy Klimas.

It's so depressing.

 

Ron has dedicated his entire career to ME? I don't think that is an accurate claim. Perhaps she means he has refocused the later stage of his career, but when you call someone else's statement as disingenuous I believe it's best to be accurate in your own statements.

Going back to NIH funding ME research, historically we've seen that applications are slightly more successful than the average. My opinion is that those solely looking to the NIH as the answer to funding need to get better at playing along with the NIH rules.

In this time of Covid-19, I believe that more success would be had in lobbying the political system, and to a lesser extent the NIH, getting across the idea about a potential post-Covid-19 surge in ME cases. Hopefully this is something Solve will be able to build on with their efforts.

 

Regarding janets tweet I guess she does mean dedicated it as the sole focus now versus most other researchers also in field like younger, klimas, lipkin who work on lots of other areas not just MECFS, so we have all his time & effort, naturally as his son is so ill.

my problem with the establishments attitude, both in the USA & UK where it’s actually quite similar, is there’s no way if WH or his own family was severely affected, that they would accept the current effort and progress as good enough. So there’s no way patients are going to but are being expected to. The bit I found especially irritating was after that amazing advocate spoke in the plainest terms about what were the real time consequences of the NIH levels of investment in terms of how many years until we get anywhere, Walter dodged her offer to give his own time frame and said you can email us and we will tell you , presumably because the truth was too difficult to say. If the truth is too difficult to acknowledge and patients generally are extremely dissatisfied with what’s being delivered, chances are you’re not delivering enough.

nih rules are unfair to an illness that’s stigmatized, with a rubbish name, a problematic history and all sorts of misconceptions. They should not be applying them ruthlessly but doing extra stuff so that the capacity is increased. They could do more on this, even just simple things such giving lipkin who they do think is doing great science, just more money for his efforts in his CFS centre of excellence. I think that i Recall lipkin himself , who I see as an establishment man, tell Walter we could do more with more money. So I think that it Is right to say the nih I being disingenuous in saying they’re doing all they can.

I didnt think it Was fair For Walter to just throw it onto solve alone to suddenly attract, without a powerful financial backup , hundreds more researchers to try to work in the field. If that’s the establishment genuine expectation of the charities, how, when afaics solve have worked flat out past few years doing all they can.

 

A 15% grant approval rate is what other illnesses get too.

The solution to me is to have enough private funding to attract new researchers and hold on to the ones we have, rather than pretend a 15% grant rate is unfair.

 

This is the only sensible way forward. While that would be a welcome development compared to past times, NIH grant approval rates are not going to go up no matter how much ME patients advocate for it -- but teaming up and gathering resources for wide studies may compel NIH grant reviewers to see these applications as more robust and the projects as being viable.

Now that also requires an effort from researchers, or rather from their respective institutions, in that they act not in their own interest or in the interest of "publishing to survive". Simply because it takes much longer to set these collaborations up and have them yield interesting results (vs. looking at a few patients, publishing some useless finding, and moving onto another paper quickly).

 

I have to disagree on this point - if the grants are of high quality, a 15% approval rate is not necessarily "fair". Pretend the burden of disease are similar for this example - if you said something like AIDS had 20 grants submitted versus dementia's 100 grants, and at least 15 grants were as good as 15 grants approved for dementia, than you would expect equal numbers of grants approved, not percent approval. Even something like 10 grants approved to 15 might start to look more fair.

Setting a cieling of a 15% approval rate actual acts as an anti-affirmitive action system, whereby any increase in total grants approved is so low it never actually results in increases in grants submitted. There is never an external pressure to skyrocket total grant submissions. There has to be a recognition of institutional neglect and an effort to fix that with clear signals. It'd be like saying fixing the rate of admission to colleges by race is fair, even when it ignores total admissions and economic and social disparities.

This is why activists have gone out of their way to secure funding for AIDS by setting aside money congressionally, and setting up it's own department. Because without these measures, the system essentially discriminates against certain illnesses.

 

Why assume that ME/CFS grants are better than those for other conditions? That's wishful thinking. They could just as likely be worse than better.

There doesn't have to be miracle. We just need to do what other conditions that are successful at getting funding generally do: try to support as many researchers as possible with private funding. The more researchers there are in the field, the more there are to make applications. Even if half the research applications had been funded in recent years, it still would have been a low number. There *is* a shortage of researchers in the field.

Everyone wants their condition to be treated like AIDS. But there are thousands of conditions and it's much more realistic to expect to be treated like other conditions than be treated like AIDS, which is an exception.

This attitude that we have been discriminated against means that instead of being proactive and trying to fundraise for research, many people could pass the book and not take opportunities that could arise to raise money privately in various ways. The numbers actively fundraising for research (outside a few countries like UK) are really low.

112 people retweeted Janet's tweet and 358 people liked it. Those are huge numbers for Twitter. For a basically nonsensical tweet that claims because 5 applications when funded, the grant review process is broken.

Again, what's the evidence of that the US system is discriminating against us in particular?

I don't think we are going to get particularly special treatment for a generally non-fatal condition like ME/CFS.

People can be free to lobby if they want. But I think without a focus on raising significant funds via private funding, we are going to struggle. I've been diagnosed for over 25 years and I think progress could have moved much faster if more people had focused on raising money for research.

 

Sorry, I got a little narrowed in on the hypothetical point that percent approved can be misleading number, and it doesn't necessarily imply fairness. I think the NIH recognizes this because they do fund more than 15% of grants. I just checked Jennie Spotila's and I think it was 5/9 for last fiscal year (44% if I read that correctly). I'd definitely be triggered if it was 15%, though.

I don't assume they are better than those for other conditions. I used an example where some portion of grants were at least as good as grants accepted for other diseases to show that percents approved could be misleading. This doesn't have to mean they are better on average.

I do hold the opinion that if you want researchers to enter the field, you offer easier grants as an incentive. Yes, some of the grants approved might not be the best, but it does signal to researchers you can make a career researching this condition. Keep in mind I'm not saying approve terrible grants, but maybe some that are on the fence. Anyway, this is offtopic and has been debated a bit already.

Agreed. However, as private funding has gone up, investigator-initiated driven research has gone down.

I agree it's unrealistic for our community to ever be treated like AIDS for reasons that have been discussed quite often. But that community certainly did not rely on intrinsic fairness in the NIH.

I don't know that this is true. Logically, if you thought the government wouldn't support you, you might look to fund a private organization. Although it could also be true that me/cfs patients become apathetic after experiencing discrimination, but I don't think there is evidence of this one way or the other.

Massive underfunding per burden of disease seems to me to be strong evidence of discrimination. Institutional neglect is a very real kind of discrimination.

 

Yes, of course, two illnesses could have the same approval rate, but the pool of applications for one could be better than the other. The point I was replying to was saying that a 15% approval rate was incompatible with progress and so unfair; my point was that that's the average other illnesses have to deal with, so it's not necessarily unfair. It would be great if the approval rate across the NIH was 20/25/30 per cent or whatever, but illnesses have to make the best of the situation.

It would be very nice if we got such special treatment. I'm not sure how unlikely it would be.

On the career point, this point applies just as well to private money i.e. having enough money could show to researchers that they can make a career researching this condition. I rarely hear the point being made that a lack of private research money could show researchers that they can't make a career researching this condition, or conversely that more private research money could show researchers they could make a career researching this condition. All the blame generally is put on the size of government funding.

The people who are claiming there is discrimination don't necessarily believe the government will never support ME/CFS. So, I don't believe it follows that they will necessarily look to fund a private organisation. If they think that all that is required is signing a petition or whatever can bring about change, that's a much easier path than trying to fund-raise.

If one thinks that a big reason for the lack of research in total is a relative lack of private funding, it should be very easy to see how that would lead to a person focusing more on raising money privately. Conversely, if one thinks our lack of research in total is not due to a relative lack of private funding, one is less likely to focus more on raising money privately.

As I understand it, the application process does not involve looking at disease burden (or if it is looked at it all, it's not a big factor). So ME/CFS isn't being picked out for deliberate negative treatment or discrimination. The impression given by tweets like Janet's is that individual grant applications for ME/CFS have less of a chance than for other conditions. That's what many if not most people would understand as discrimination.

Roughly around 50% of conditions will get more than one might expect for their disease burden and 50% would get less.

 

I am of your opinion. Patients and people around patients have to invest more into research themselves. Stop buying shitty supplements and using that money to do research instead would be a good start.

 

What are your suggestions for how solve /OMF etc can ramp up their fundraising in America ? It is suggested that’s all we need to do, and stop expecting the state but our charities both in the uk and America have shown themselves completely incapable of raising large sums and in the American context, they’re really going all out - OMF really promote fundraising , regularly have matching opportunities, travel, engage well with supporters are visible at #MM etc - and solve are doing loads on advocacy , trying to get funding from other quarters, as recently from a women’s health grant.

if it was so simple in CFS that private funding could fill the gap we’d have had no issues like we have because at least moderate funding would have allowed us to prove the biological basis but history to date has shown, for whatever reasons, we aren’t just like other conditions in fundraising. Perhaps it comes down to diagnosis rates in the USA, or physicians not necessarily encouraging patients to take it seriously until they’re flunked financially themselves with severity, or the high out of work rate or whatever it is but certainly in the uk context, ME charities are raising 1/30th of MS charities with no evidence that that rate is at all increasing from one year to the next.


id love to see more people and specifically their well family, privately fundraising , but how do you get them to ? Because our charities aren’t managing it. How does American charity income rise from $10m to $50-$100 m in 5 years ?

I personally am for going all guns on both the state and private And I think that alot Of involved patients Are doing what they can but how to we reach and encourage the non involved patients who are probably non political and aren’t just relying on the state, they aren’t donating or getting involved for other reasons.Numbers engaged with charities is just a fraction of those involved, unlike the 40% of MS sufferers. I personally can’t see without massive changes - and not just in patient attitude - or philanthropist backing, that rate increasing much in five years .

there has to be clear mechanisms stated for how more money can be raised privately which are then shared with charities to act upon because nothing is moving on this front. Solve themselves, who Walter seemed to want to shift the blame on,are lobbying the stAte and a calling for among other things substantial RFAs. I fully support them On this and they clearly are trying to both raise privately and get more state money but to me , the quickest option, has to be the state putting in for example next year $30m into RFAs and so on.


I don’t understand how our situation is not seen as special or neglected. When in the UK context what other illnesses are potentially so severe, have 75% out of work (affecting disposable income) affect large numbers, have been misrepresented across the board, aren’t taught in medical schools, have questionable primary care information and privately have fundraised so little and have state funders who haven’t lived up to expectations of official guidance.

 

Well I think if people are told that there is a lack of researchers and this is likely at least partly due to a lack of private money, it could change attitudes. At the moment, when someone says there is a shortage of applications, this seems to often be portrayed as either a lie or all down to the NIH. A learning opportunity seems to be missed.

 

I don't think it's fair to look at other diseases and compare % of funded studies. Other diseases have a solid working base, tenured professors with department resources they can use to jumpstart hypotheses, they have official bodies, thousands of researchers, institutions, centers of excellence, dedicated funding pipelines, and those diseases are not maligned, their patient population is not held in contempt and the disease itself not completely misrepresented, including in published research.

That's why the comparison to AIDS is the only one that's fair: because it went through that process of being taken off the blacklist through deliberate steps. MS also to a point, it also needed Congressional resolutions in the US to get serious funding. Those diseases had to overcome the inertia of past indifference and failures. Most diseases today don't have anything remotely close to that. Even in those that did at some point it's a problem for the distant past, the prior failures' rotten influence has been weeded out. Their scientists are also not regularly told they are wasting their career working on yet another drug that will fail. Or lied to. Or given absurd and obviously opinionated responses to research proposals.

So this argument is completely disingenuous. There is a very particular set of circumstances that stifles progress in ME and those will not lift without very dedicated efforts. AIDS is the success story of that. We're not necessarily talking about how massive the budget is, we're talking about removing a disease from the blacklist and making it an attractive career path. This takes huge effort and it hasn't even yet begun so we are making no progress at all with this approach.

We have yet to move in the category of problem worth solving, which is where the AIDS comparison holds, not for the immense funding but for removing this massive inertia burden that is holding us in place. That, like AIDS patients, we still have to withhold our diagnosis because of the high probability of being mistreated as a result is as damning as it gets. We still have people apathetically saying "what's even the point of being diagnosed if there's nothing we can do?" when obviously not diagnosing a disease as a matter of principle is exactly how no progress occurs for decades despite documented evidence of a human rights disaster as the undeniable outcome.

Especially since research funding does not take into account disease burden. It comes down to popularity for the most part. We are beyond unpopular, we are completely ostracized out of the normal process, by choice. We simply don't compete on equal terms. The only way out is to make us part of the process with deliberate steps and that still hasn't begun, we remain siloed out and still cannot discuss in public the science ahead without every discussion devolving into mindless psychodrivel, extremely bad pseudophilosophy and thought-terminating clichés.

Unless things change massively, it's very unlikely the NIH will have contributed anything to the solution. If it makes no difference in outcome, then it doesn't count as a legitimate effort. Right now neither the CDC nor the NIH nor any other research funding in the world is making any difference, all by choice. At this point I frankly don't expect them to. It's far more likely that a fluke breakthrough occurs out of COVID research paving the way than any of the pathetic efforts coming out of the large research institutions.

 

One other thing to point out is that NIH grants pay a significant percentage of the award to the university for infrastructure costs, which private funding does not normally do. So even with private funding, researchers need a source of government grants to keep their University happy. Or the charity pays the overhead costs, but I don't expect many to agree to that.

 

Okay, but that's the same in any field. There doesn't seem to be good evidence of any problem specific to the ME/CFS field that researchers who do apply for grants in the US are disadvantaged at the moment.