ME/CFS Alert Episode 126: Interview with dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders at NIH

[Kalliope]

- In this episode, Llewellyn King and Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders at the National Institutes of Health, discuss the new goverment funding for long-haul Covid and its impact on ME/CFS research. Dr. Koroshetz is hopeful that the $1.15 billion in funding over five years will produce results for both long-haul Covid and ME/CFS -- and it may establish their relationship. He also says there is a need for research on the part of the brain that is responsible for fatigue.

 

[rvallee]

Profile in courage: hey, maybe it will work itself out I don't know I'm just the director.

Do they think they will get credit for not doing anything and hoping it just works itself out? Because none of this deserves any credit. Once a breakthrough occurs, it will be despite their worst efforts.

Then again I guess that's better than denial. That's how low the bar is. But still, none of this will get any credit, no real difference in outcomes, especially as the NIH had nothing to do with this funding, was simply handed instructions how to use it and even appear to mostly blow this off.

It's like the institutional version of "somebody call 911", then just not bothering to check whether someone does and just shrugging with "ah well, I did everything I could", then proceed to take a selfie and post it to Instagram with hashtag #WishSomeoneDidCall911ButOhWell. Nope, nothing more they could have done.

 

[Forbin]

He mentions that some, but not all of the long covid patients report post-exertional malaise (PEM).

This doesn't really surprise me. There might be several reasons. I didn't notice PEM until a few years after onset. I'm sure one reason I didn't notice it was that it was "delayed" PEM. Feeling "weirdly worse" 24 hours or more after some unremarkable level of exertion (like going for a short walk) is not a connection that most people would readily make, especially when the illness already involves a lot of fluctuating symptoms.

As I've mentioned elsewhere, I only noticed this connection after some of those others symptoms improved, some three to four years into the illness.

It makes me wonder if PEM should really be a mandatory symptom in new cases of ME/CFS, simply because it may not be noticeable to all patients in the early going.

If someone had told me to be on the lookout for PEM, maybe I would have noticed it sooner - but then you have the issue of patients possibly reporting something because they've been "primed" to notice it.

At any rate, I didn't even hear of PEM until sometime after the advent of the internet - even though I had been describing it to doctors for 20 years or more.

I have a feeling that a good number of the long covid patients that aren't reporting PEM now may well be reporting it in a few years after the initial "chaos" of the disease declines somewhat.

 

[Denise]

Even people who are very, very familiar with PEM can find it very difficult to tell for certain if someone close to them has it (as in someone just developing/coming down with ME). Because it manifests differently, because triggers may differ, because of delay in onset, because of the differences someone may have in PEM triggered by cognitive vs physical exertion...... And because PEM can be difficult to identify, many people just starting off with ME may not have the language to describe what they are experiencing..

 

[Mij]

I didn't experience PEM until 6 years after onset because I didn't go over my 'energy window' during that time. I was not exercising. The term PEM wasn't in circulation until 2001, even my ME doctor never used that term.

My experience with PEM is very distinctive and delayed. Not one person in my 30 yrs of illness understands what I'm talking about when I've tried to explain it, including post viral friends.

 

[rvallee]

I decided to watch it in full yesterday and my takeaway is that the NIH is still firmly at square 1 and has not made a single bit of progress on any aspect, including having a basic understanding. Koroshetz actually said "post-exercise fatigue" instead of PEM at one point. Come on.

It remains possible that this is simply because medicine is too hostile to us for them to do anything more even if they wanted to, but nevertheless this is complete failure, regardless of who is to blame. Koroshetz's answers were evasive and vague, did not display any understanding of the issue beyond what a 5-minute crash course can do. He answered like a politician, which hints at me that there could be punishment for going against the dogma, careful not to speak out of line.

So as typical, shocked, yet not surprised. But none of this will count for anything, there will be no crediting anyone other than courageous individuals who worked against medicine trying to solve this disease. The institutions have all failed in every possible way, a simple grade of 0. Every last one of them.

Even with Long Covid they are clearly doing this only because they have no choice. If it were up to the NIH there would be no such program, they have no interest in any of this. But Koroshetz hinted at the size of this and estimated 1,500 researchers could be involved, so at least there could be some benefit to that even if most of the funding is wasted by only looking where the street lamp shines.