2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May

I believe the stated reason was that it would hinder the chances of it being published in a more notable journal than would happen if they published a preprint.

 

It’s very difficult where I live and I’ve had to deal with escalating things no one in my condition should have to deal with. I hadn’t planned on writing the NIH questions but ended up jotting some things down the best I could before I went to bed the night before the symposium and sent them out. I didn’t have time to fact check some of what I wrote but always figure that it’s better to write something than nothing even if I make some mistakes – I am severely ill after all.

Anyway, I don’t want to mislead anyone reading what I wrote so I want to note that the issue with POTS was that the healthy controls had POTS too and I think in one of the slides during the presentation there were 1 or 2 people with small fiber neuropathy.

This is what I wrote:

Their reply is below. Of note is their statement, "As informed consent and volunteerism are the bedrock of all ethical human health research and were provided to all participants in the same way, they did not bias the study."

 

After rewatching, I did not interpret his statement as a criticism. I don't think he meant that current advocates are bad but that we need more of it to make a change and get the research funding that ME/CFS deserves.

I was more disappointed by Nath's comments earlier in the conference. He said something like: 'when you doubt our intentions and tear down every single word, you tear us apart. It causes pain and suffering on both sides, and demoralizes us and shatters our goals.' It may have been well-intentioned to protect his research team and only directed at abusive comments but it does not sound very respectful to patients who analysed and criticised the study.

 

There is something about Nath's comments that reminds me of Fiona Watt at the MRC 'How awfully shocking that you should be disappointed in our research. After all we are THE MOST IMPORTANT PEOPLE in this science game and we do all this entirely out of our desire to help you poor people.'

Pah!

 

My, effort limited, reaction to Nath's continued whinging is probably best not said. I didn't hold out much hope for the intramural study before they published; I've now lost all hope that NIH intend dealing with ME/CFS in any serious way.

 

For what it is worth: made a transcript of what Koroshetz said at the beginning about effort with some of his slides:

Time 9:03
"...Now the problem is the word effort has connotations in the lay press that don’t apply to what we’re doing as neurologists. What we’re trying to think about is how the brain is making this decision: what am I going to do on a microsecond level. This is not like: I’ going to decide to make an effort or not. This is what is going in your brain constantly, constantly and you don’t even know what is going on. It is not in your consciousness, you could not think about every single motion that you do and decide, you know, in a deliberate way, am I going to make that motion? You could make maybe a 100 a day while I’m making a 100 in 3 seconds.

So, then the question is what is fatigue. One thinks about it in different ways and I am not an expert - Dr. [inaudible] here is an expert and he will be talking to you later. The way I think about is: the brain is trying to make a decision which in a very simplistic way is: I’m going to do x for reward y. And that is every single action. Your brain is making that computation. So you have to make some estimation of what the work or the effort is and then you make some estimation of what the reward is. And your brain is doing that all the time.

And in fatigue there is a real problem there. We’re not exactly sure what the problem is. It could be that the brain is overestimation the effort or it could be that you’re not getting the reward signal for the effort. But that is a computational problem in your brain. And it is really important for people to understand this has nothing to do with not wanting to make an effort. It has nothing to do with that, it is completely separate. It is how your brain is making these computations.



And just as an example. If you look at muscle fatigue. Here’s really something simple, it has nothing to do with ME/CFS, it’s about fatigue. So, when you try to make contractions against a force, eventually you’re going to fatigue. And you see here what happens is that the force starts to drop off after you do it 100 times. And the interesting thing is that you would say, okay the muscle can’t do it anymore. But that is not true. Because when you stimulate the nerve you get the contractions to come back. So, there is something in the central nervous system that is telling the nerves: ‘I don’t want to do this anymore, you stop firing’. There’s nothing wrong with the muscle, ... well the muscle is tired as it can’t go all the way up to what it did before. But look at the big difference you get when you stimulate directly. Now that is evidence that this is coming from a central controller. That is what I think we’re really trying to understand in ME/CFS: where is that central controller and what is wrong with it?"

 

Well it's a common word that has a more common meaning than what neurologists mean and the vast majority of MDs aren't neurologists and they will hear the common meaning of that word, they are already primed for it. As will everyone else.

And of course the more problematic word is preference anyway, so whatever. And that it has basically nothing to do with the condition anyway, way too much has been made of this tiny test with artificial conditions.

Some of this could be excused as socially clueless scientists, but in combination with too many things, the Shorter thing and Walitt's horrible track record here, this is especially pathetic. This is as much BS as Cochrane saying that ME/CFS being classified in the common mental health disorders doesn't mean what it obviously does. They really are showing blatant disrespect to us by telling us things we all know, they included, are BS.

 

Very much agree! I can't get past the fact that they seem unwilling to take in that a lot of patients who are on the milder side of the scale have little problem exerting themselves on a good day. Both anecdotally and from surveys, the altered "subconscious" effort preference is not a significant hindrance at baseline for so many.

If the NIH want to be taken at face value when they say that they are being misunderstood, they can't present 'effort preference' as an independent variable just like that, without further ado.. This is effectively what they are communicating in my opinion anyway. There is too much effort put into overstating and extrapolating the results, and too little in communicating uncertainties. Patients want the hard facts from NIH, not a hand to hold while walking over charcoal. If remarks from patients can't be accounted for in their models, they should be trying to understand why. Simply asserting this is only a matter of semantics is not going to cut it. That is, if they truly want to solve the riddle that is ME.

 

Especially when this has been one of the main methods of discrimination and attack against us. So has the constant recycling of the same or similar terms, but they've all run out of them. There is definitely some creativity with this latest batch, but we've heard it all already, and it's just a variation on the same old term of "they can, but they think they can't".

Really the whole "you can't criticize us, we can't handle it" is especially egregious considering how trust has been completely broken. There is no possible benefit of doubt here. Many of us basically assume fuckery at all times, so far it's never failed me, unfortunately. Even with the LC initiative we're seeing the same failures for the same reasons and justified with the same cheap excuses.

 

Just wanted to share this reply from NIH ME/CFS Working Group below:

"You asked what biomarker targets for potential therapies the ME/CFS Working Group or Dr. Avindra Nath would recommend in order to get pharmaceutical companies to fund platform trials for ME/CFS. Dr. Nath provided input on this response and suggested that you review the slides for his closing remarks during the May 2nd Symposium, which list potential targets. You will find Dr. Nath’s summary and closing remarks beginning at timestamp 5:24:21 at the following NIH Videocast webpage: https://videocast.nih.gov/watch=54675.

We hope this information is helpful.

Office of Neuroscience Communications and Engagement
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS”

 

I'd still like to know how 'we neurologists' know this.