Research update: The relation between ME/CFS disease burden and research funding in the USA, 2020, Mirin et al

Paywall, https://content.iospress.com/articles/work/wor203173
Sci hub, https://sci-hub.tw/10.3233/WOR-203173

 

Not trying is deciding to fail. That failure was decided for us without us, in fact against our desperate pleas. Even with the most sincere efforts, no one will ever succeed at launching something into orbit on a $1M budget. And this field has been plagued by insincere efforts and sabotage, basically an impossible task.

Generally speaking, though, medical research funding is a chaotic mess detached from need and burden. How does something like that even happen? I don't get it. Medicine is one of the biggest industries in the world, spending trillions, and it delivers very little progress, is always treading water, unprepared, unmatched for every new challenge.

My conclusion is that it is precisely that detachment between supply and demand, between services offered and patient needs, that is the core reason for stagnation in improving patient outcomes. The idea that physicians can work with other physicians and create good patient outcomes without ever involving patients has clearly been revealed to be a fallacy. This goes beyond us and it must end. Medicine must be about patients, that means considering illness with the same respect as disease. And also dropping the ridiculous magical psychology crap, obviously.

This is a pretty good special edition, all good articles so far.

 

Thanks for your contribution @Medfeb. I thought your 2016 article was very powerful, so nice to see an update (wish I could read more but not well enough today).

Is there a plan to use this updated analysis to push for more funding through advocacy?

 

@wigglethemouse - Thanks for your kind words.

US advocacy efforts will continue to emphasize this lack of funding compared to disease burden as a part of the overall messaging. But it only goes so far. And at this point, IMO, COVID and the potential for the development of ME is a much more urgent and critical message that is much harder to ignore. And people from outside the community are sounding the alarm, not just ME patients, making it even harder to ignore. Ed Yong's summary of the situation in the recent WBUR podcast (transcript) is stark.

I think Dr. Rahman is absolutely right in noting that other viral infections and other diseases have led to similar waves of symptoms before, and conditions that present in similar ways like ME or chronic fatigue syndrome. Now that those people with those conditions have long been dismissed, they've been told that the diseases aren't real, that they're making things up, that their symptoms are all in their heads. Research into these conditions have long been underfunded. And as a result, now, when we have this pandemic and untold numbers of patients, thousands, maybe tens of thousands who are presenting with very similar problems, we really are still in the dark about how to both prevent these from progressing on to something like ME. And we don't know ways of treating and helping these patients. And I think that is of a wholly preventable tragedy that could have been avoided had people with similar problems not been kind of gaslit and disbelieved for many decades. ​

On the funding/disease burden angle - For many years, NIH's response to the lack of funding relative to need is that the funding will only go up when researchers submit more quality applications. And for as many years, the community pointed out that stigma, insufficient commitment from NIH, and other factors have kept researchers from leaving their own funded fields to submit applications for this field. NIH could address that issue but issuing multi-year funding opportunities with set-aside funding (RFAs) to encourage more applications and to address key issues, including cohort selection, lack of diagnostics, clinical trial methods as well as studies on the basic disease pathology. But they have only ever issued 3 RFAs - one in 2006 and 2 for the collaborative research centers a few years ago. So far, they have resisted calls for more.

 

@Medfeb , do you think DecodeME being funded will have any positive effect on the willingness of the NIH to fund ME/CFS research in anyway? Would be interesting to get an idea of what impact, if any, it might have outside the UK.

 

The NIH says it's a matter of not enough researchers submitting grant applications.

DecodeME will probably find genes and it will give other researchers something to study while increasing confidence that ME/CFS is a real illness and not a waste of time, and so it could lead to an increase in reseacher submitting applications.

 

Just my opinion of course but in the short term, I think the biggest positive impact of DECODE being funded is that it appears (at least from here) to be driving greater receptivity in the UK media to the ME biomedical narrative. That will help the US, particularly in the medical community, because the UK BPS narrative ends up here and influences the narrative. (Edited to add - NIH was already funding Nacul and attending/presenting at InvestInME - could provide additional connections there. )

In the longer term, if it were to identify a gene or genes, then of course that would give researchers something to focus on. But that's a way down the road and IMO will depend on the quality of cohort selection and validation, especially if ME is as heterogeneous as it appears to be. At the end of the day, I expect we will find its a combination of many factors that create the clinical presentation, not just genetics, and many of those are being studied in parallel. Some could take off in the meantime.

On "increasing confidence that ME/CFS is a real illness and not a waste of time" - my sense is that at this point in the US, the issue with lack of researchers is less about disbelief in ME and more about the way NIH funding works and the way that interacts with the state of the field.

Its a lot of work to develop a grant proposal and only a small percent get funded. If I were a researcher in an established field and confident in a solid funding every year, I would probably think twice about trying to branch into another field with factors like the following:
a) the biomedical research has been underfunded,
b) the studies that have been done are small and may be considered by reviewers to be not robust enough or too preliminary to get
NIH funding - this could lead to negative review decisions. (NIH funding focuses on hypothesis testing versus hypothesis generation).
c) the patient selection criteria and research instrumentation are still unsettled creating additional uncertainty in research conduct.
d) doctors are not diagnosing the disease so where will I find a clinical partner to work with to get patients into my studies
e) its unclear what level of strategic commitment each institute that needs to be involved is making - is it on their strategic plan,
are they willing to commit $ and people? The institutes have a key role in funding decisions.
e)....

The narrative of "Its hard to get funding for ME" and "it's a waste of time" to even apply are probably more significant in the US than "the disease is not real".

Just one person's perspective. No simple answers

 

No, understood, thanks for your insight.