"Freakonomics, MD" podcast, episode 45: Could Long Covid Help Treat Other Chronic Illnesses?

ahimsa

ahimsa

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Freakonomics, MD
Episode 45: Could Long Covid Help Treat Other Chronic Illnesses?

https://freakonomics.com/podcast/could-long-covid-help-treat-other-chronic-illnesses/

"Chronic fatigue syndrome looks remarkably similar to Long Covid, but has been ignored by the medical community. Could patients finally get some answers to their debilitating illness?"

This podcast features ME/CFS patient Winston Blick and also:
  • Ronald Davis, professor of biochemistry and genetics at Stanford University
  • Anthony Komaroff, senior physician at Brigham and Women’s Hospital and professor at Harvard Medical School
  • Vicky Whittemore, program director at the National Institutes of Health
There's a full transcript in addition to the audio (33 minutes).

I have not listened to this yet but quite a few patients on twitter have recommended it.

EDITED: The podcast name is Freakonomics, MD not Freakonomics. I updated the subject line and message to correct this.
 
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There's a transcript there. It covers lots of key points - symptoms, no cure, doctors not trained, lots of people undiagnosed.

Winstone came across well - young, very athletic, enjoying life, hit with ME/CFS after mononucleosis. Still working but that's pretty much all he can do, and he has to have days in bed.

Tony Komaroff: He says 'it's not relieved by rest' - although it's standard, I do think this is a problem in terms of people recognising ME/CFS in themselves, as my symptoms are relieved by rest. I mean, otherwise, we wouldn't choose to/need to rest outside sleep.

Vicky Whittemore - mentions the stigma, the psychosomatic beliefs, the incorrect beliefs that it is just hysteria.
Komaroff - "The two illnesses can also cause similar reactions from doctors - frustration and skepticism. Komaroff believes the attention given to Long Covid including research efforts is likely to be applicable to people with ME/CFS.

Why does it happen? Komaroff - Might be Covid viral persistence or reactivation of latent viruses. He thinks the most interesting idea is that it is sickness behaviour (as happens when someone has the flu). Komaroff talks about a paper published in Nature a week ago, a nucleus of neurons that generates sickness symptoms in the hypothalamus has been found in the brains of mice. For whatever reason, the 'on' switch stays on. It might be stuck, or it might be appropriately on (Komaroff thinks the latter is likely).

Funding - 22 mins
Ron Davis: mention of his qualifications and great track record in securing NIH funding through his career, Whitney's illness, Ron's efforts to bring a team together to study the illness, his difficulty in securing NIH funding for ME/CFS research (only 1 of 24 grant applications funded), lack of funding for research on this disease.
Presenter: mentions that HIV/AIDS (>$3 billion/year), MS ($126 million), lupus ($129 million) get much more NIH funding but affect fewer Americans than ME/CFS ($17 million).

Vicky Whittemore, she manages the NIH grant portfolio for ME/CFS: "The barriers to increasing the amount of money is really the many demands that each institute at NIH has, so if you think about the hundreds of neurological diseases, ME/CFS is just one of those diseases. It's a very complex disease and so its really been a challenge to encourage and identify researchers to come into the field. It's also really challenging at times to work with the patient community who rightly so wants more funding, more research, things to move faster." [I'm usually a fan of Vicky Whittemore and I have no doubt that she is in a difficult role, but I thought this was unfair - suggesting the patients are part of the problem under-funding. Surely - fund it better, and then the patients won't be so frustrated and demanding? Also that there are lots of demands on the NIH, well yes, but why do similar neurological diseases get so much more than ME/CFS?]

Presenter: there has been an increase, until 2015, the funding level was only from $6-8 million/year. VW suggests that the increased funding was only because of patient outcry.
In-house study is talked about - mentions the small sample size of 20 patients due to strict criteria for enrolment. Winston participated in the study.
Presenter hammers home the point of underfunding.

Vicky Whittemore - "You may have a disease that, there's a huge disease burden, but if there's not a research community out there, NIH doesn't designate a certain dollar amount that they are going to put toward that disease. We don't pit one disease against another, because they are all devastating and all need support." [Hmmm]

Could the funding of Long Covid ($1.15 billion of NIH funding committed to Long Covid provide the answer? [Oh - what was that? NIH designated a certain substantial dollar amount to a specific disease?]
28 min: Ron and Tony K both say they are concerned that Long Covid researchers are treating it as a new disease, and not paying heed to the work already done on ME/CFS.


Lots of things covered in this podcast, and covered clearly, it is good.
 
I'm no expert in how things work in the US either, but I'm pretty sure that if there was a will, there would be a way. The NIH seems to routinely issue specific funding opportunity announcements
https://grants.nih.gov/funding/searchguide/index.html#/
e.g.

In fact, the establishment of the research centres for ME/CFS was surely an example of that. Clearly more could be done. I assume it's influential people in the NIH continuing to believe that people with ME/CFS just need to think better thoughts and get off the sofa, and therefore why should scarce funds be diverted from real health problems to look for some pathology that will never be found?
 
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I think scale and the level of political pressure on the issue were important factors in both cases. The scale of funding for LC was only ever going to come from a specific commitment from Congress, whereas the, frankly peanuts level of, funding for the research centres was cobbled together from various branches of the NIH. Specific calls for diabetes and substance use will be aided by both topics being of interest to politicians.

It wouldn't surprise me if in the future it turns out to be even harder to get specific funding for ME with the LC funding held up as evidence that the field of post-infectious chronic conditions having received a huge amount already.
 
Andy said:
I am certainly no expert on how things work in the US but I believe that Congress had to give the NIH that money specifically for LC research.
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Yup. And specifically, budgets are laws, they have the same power. The NIH has no choice in the matter, it's literally the law that they have to spend that money for this specific purpose. This is the only reason they're doing anything, and they're still botching it.

But the NIH can and does set aside money for specific diseases, AIDS being the most relevant direct comparable. And they can do this in order to bootstrap an entire field from nothing, again: AIDS. In this case, it doesn't even have to be a specific disease, it's beyond obvious that there will inevitably be a proper medical discipline dedicated to chronic illness, it's a super category of illness at least as relevant as neurology, and probably even larger in size and scope. This is the way it should be done, the only obstacle is pervasive refusal. Medicine is unable to move from having psychologized all of it, it's too big a failure to acknowledge.
 
Choosing to not publish seems to have worked against Ron Davis. His age is also working against him. At 81 even short term research say 3 to 5 years would be tricky for NIH.

I think the American MECFS community would have better luck using honey rather than vinegar to catch NIH funding. Thanking NIH for Ian Lipkin’s recent paper might work better than focusing on the closed door Ron Davis is up against.

I know the American MECFS community has used a lot of vinegar in the past but NIH didn’t increase funding, maybe a new approach would work better. I think focusing on who NIH is currently funding will work better than focusing on who NIH isn’t funding. It would also help to remove the stigma that working with MECFS patients is challenging.

I feel sorry for Ron Davis, I wish things were different and NIH didn’t have some kind of grudge against him. I admire the loyalty people with MECFS has for Ron, but we need to accept the scientists NIH prefers.
 
cfsandmore said:
Choosing to not publish seems to have worked against Ron Davis. His age is also working against him. At 81 even short term research say 3 to 5 years would be tricky for NIH.

I think the American MECFS community would have better luck using honey rather than vinegar to catch NIH funding. Thanking NIH for Ian Lipkin’s recent paper might work better than focusing on the closed door Ron Davis is up against.

I know the American MECFS community has used a lot of vinegar in the past but NIH didn’t increase funding, maybe a new approach would work better. I think focusing on who NIH is currently funding will work better than focusing on who NIH isn’t funding. It would also help to remove the stigma that working with MECFS patients is challenging.

I feel sorry for Ron Davis, I wish things were different and NIH didn’t have some kind of grudge against him. I admire the loyalty people with MECFS has for Ron, but we need to accept the scientists NIH prefers.
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Highly disagree. You don't make history by being submissive and saying thank you to the people who have been screwing you over for decades.

NIH might have their reasons for not funding Ron Davis, and those reasons may be legitimate. But he is just one researcher. The reason why 99% of researchers laugh and make snide remarks at the idea of studying ME/CFS is because of the deeply ingrained idea in medical culture that ME/CFS is just somatization or that the patients are just a bunch of lunatics with a various assortment of mental illnesses that refuse to seek treatment and make up an alternative diagnosis. Virtually everyone at NIH thinks this as well and it is why ME/CFS is not funded.

When Avindra Nath started the intramural study he said they had to first "convince themselves it was a real illness". Do you really think that if the folks at NIH thought our illness was serious and real they would be ok with this? They could have done their part in trying to dispel these prejudices (like they did with MS in the 80s) and attract researchers to join the field, and done more in house studies. The didn't because clearly this is their idea of ME/CFS.

If vinegar doesn't work we should use gasoline instead.
 
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I can see the validity of both arguments here. There are some ugly and rarely opened expressed prejudices ingrained in the medical and research system. It's the only explanation that makes sense because otherwise the observed behaviour cannot be explained. What we hear often, that there are no good research project applications or that it's just too difficult a problem is an excuse. With some truth to it.

I also suspected that the NIH wanted to do exactly what they later admitted, that they wanted to see for themselves whether we were deluded malingers or similar as claimed by people like Ed Shorter claimed (who at some point was invited to the NIH by the way to comment on ME/CFS).

To some degree we do need to challenge these prejudices but maybe directing our frustration towards individuals isn't going to be very productive.
 
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strategist said:
I can see the validity of both arguments here.
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Yes, exactly right. In most successful struggles for major change that I can think of, there have been people who make a lot of noise and people who quietly negotiate a way forward. Both are needed, and sometimes the same people can do both.

I think letters calling for more funding are useful, but I agree that focusing on why one particular researcher didn't get grants probably isn't going to be productive. I'd focus on the enormous economic and social cost of ME/CFS, especially now with post-Covid-19 ME/CFS, and the potential for calls for proposals on specific questions and support for early career researchers.

I think we are going to really struggle to get funding for ME/CFS research separate from Long Covid research, and maybe that is mostly ok. But, the average quality of Long Covid research needs to improve a lot.

I think one argument to push is that people who have had ME/CFS for years provide the only insight available as to what a subset of Long Covid is likely to look like in the years ahead. Another is that Long Covid researchers should be familiar with what research has been done already in ME/CFS, meagre and often misguided as that is, so there should be funding for collaborations. Some ME/CFS patients, organisations and researchers can add a lot of value in the assessment of Long Covid research proposals, helping to ensure that a dysfunctional wheel is not re-invented.
 
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