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2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May
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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."
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."
Well done @Laurie P. That response to your questions is, well, pathetic.
They completely avoid acknowledging that reminding a participant each day of their frailty and asking about whether they want to stop may well have an impact on the person's performance on the task, not least of all a task on effort preferences. We only have to look at the standard procedure for a CPET, where participants are verbally encouraged to keep trying hard, to see that it is accepted that encouragement (or lack of encouragement) impacts on people's performance.
They completely avoid acknowledging that reminding a participant each day of their frailty and asking about whether they want to stop may well have an impact on the person's performance on the task, not least of all a task on effort preferences. We only have to look at the standard procedure for a CPET, where participants are verbally encouraged to keep trying hard, to see that it is accepted that encouragement (or lack of encouragement) impacts on people's performance.
ME/CFS Skeptic
Senior Member (Voting Rights)
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.
Jonathan Edwards
Senior Member (Voting Rights)
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!
Pah!
From Nath's initial comments:
I find that pretty amazing and tone deaf. Despite a substantial budget, enormous resources and a lot of time, the NIH was not able to deliver a study programme with the planned 40 ME/CFS participants. In fact some of the studies had less than 10 ME/CFS participants, in many cases making the results uninterpretable. Compounding that problem, they allowed the study to finish with a set of very poorly matched controls.
They allowed Walitt, who has a clear record of minimising the suffering of people, mostly women, who have health conditions similar to ME/CFS, to put his hand up to run this study, they put him in charge, and they allowed him to apply his considerable biases to the interpretation of the data. They allowed him to invite Shorter to spread his bigotry amongst NIH scientists. That invitation alone was surely sufficient grounds for us to 'doubt the intentions' of Walitt and those singing his praises.
They allowed a very poorly conceived study on 'willingness to expend effort for reward' to go ahead, with substantial additional problems with its implementation. They used outcomes from that flawed study to form the core of their findings and research write-up. And now Koroshetz muddles that up with concepts in muscle fatigue, suggesting that the problems people had with the 'effort preference' conclusions of the paper were simply due to us ignorant lay-people not understanding the terms neurologists use.
The ME/CFS community waited a long time for the results, we invested a lot of hope in the study. When the publication came out and it was clear that there was little of use, and there were some things that actually harm progress, there was suffering and demoralisation.
I would not be at all surprised that quite a number of people with ME/CFS gave up continuing to hope; I think it is likely that some people took their own lives partly as a result of the disappointment with the study and the investigators. Now, I do think there is cause to hope, I don't think people should give up. I think Koroshetz is right that the problem of post-infection disease is looming so large that it can no longer be ignored. But, that is not thanks to the NIH ME/CFS study.
It is hard to believe that Nath is equating the pain and suffering and demoralisation of some (well-paid) researchers who are feeling momentarily aggrieved that their work was not met with more gratitude with the ongoing pain and suffering of the ME/CFS community. As for that pastel-coloured picture of people holding hands and walking together into the cherry-blossomed sun-shiny future, following the path paved with this study, well, ....
I find that pretty amazing and tone deaf. Despite a substantial budget, enormous resources and a lot of time, the NIH was not able to deliver a study programme with the planned 40 ME/CFS participants. In fact some of the studies had less than 10 ME/CFS participants, in many cases making the results uninterpretable. Compounding that problem, they allowed the study to finish with a set of very poorly matched controls.
They allowed Walitt, who has a clear record of minimising the suffering of people, mostly women, who have health conditions similar to ME/CFS, to put his hand up to run this study, they put him in charge, and they allowed him to apply his considerable biases to the interpretation of the data. They allowed him to invite Shorter to spread his bigotry amongst NIH scientists. That invitation alone was surely sufficient grounds for us to 'doubt the intentions' of Walitt and those singing his praises.
They allowed a very poorly conceived study on 'willingness to expend effort for reward' to go ahead, with substantial additional problems with its implementation. They used outcomes from that flawed study to form the core of their findings and research write-up. And now Koroshetz muddles that up with concepts in muscle fatigue, suggesting that the problems people had with the 'effort preference' conclusions of the paper were simply due to us ignorant lay-people not understanding the terms neurologists use.
The ME/CFS community waited a long time for the results, we invested a lot of hope in the study. When the publication came out and it was clear that there was little of use, and there were some things that actually harm progress, there was suffering and demoralisation.
I would not be at all surprised that quite a number of people with ME/CFS gave up continuing to hope; I think it is likely that some people took their own lives partly as a result of the disappointment with the study and the investigators. Now, I do think there is cause to hope, I don't think people should give up. I think Koroshetz is right that the problem of post-infection disease is looming so large that it can no longer be ignored. But, that is not thanks to the NIH ME/CFS study.
It is hard to believe that Nath is equating the pain and suffering and demoralisation of some (well-paid) researchers who are feeling momentarily aggrieved that their work was not met with more gratitude with the ongoing pain and suffering of the ME/CFS community. As for that pastel-coloured picture of people holding hands and walking together into the cherry-blossomed sun-shiny future, following the path paved with this study, well, ....
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I agree with all of this post. How dare they whinge about their badly run and unscientifically reported study being not well received. How dare they compare their discomfort with being told they got some things wrong, and their slightly bruised egos, with the suffering of millions of sick people. How .... dare they.
If this puts Walitt off from further ME/CFS research, I would celebrate. If future ME/CFS research funding goes instead to people who understand ME/CFS and know how to interpret data, I would celebrate. If Walitt and Nath have the integrity and honesty to admit they got it wrong and withdraw the effort preference nonsense, I would celebrate.
Until then. Nah.
Microscopic violin backing to his sob story
ME/CFS Skeptic
Senior Member (Voting Rights)
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?"
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?"
Yes. The NIH team's story is muddled. They have reported that there was no sign that the people with ME/CFS were fatiguing at a greater rate than the controls in the EFFrT study; tapping rate did not decline over the course of the study. The supposed (average) preference for easy tasks over hard tasks in the ME/CFS group is not operating like a fatigued muscle under central control. The term 'effort preference' is not used in the field of muscle physiology - I think it is only used in conjunction with the EFFrT type studies. Those studies require that participants are able to complete hard tasks, and that there is a clear positive relationship between selection of the hard tasks and reward.
The thing is, a good proportion of the ME/CFS participants looked like the controls on the EFFrT study. So, not choosing hard tasks (either voluntarily or involuntarily) is not a characterising feature of ME/CFS. And the NIH EFFrT study is particularly problematic due to the weird reward calculation, which created an incentive to not complete tasks, surely tainting people's strategies and, indeed, resulting in the investigators throwing out a control participant who applied a smart strategy in response to the incentives.
Koroshetz seems to believe that ME/CFS = (central) chronic fatigue. If you are focused on fatigue, you aren't focused on PEM.
The thing is, a good proportion of the ME/CFS participants looked like the controls on the EFFrT study. So, not choosing hard tasks (either voluntarily or involuntarily) is not a characterising feature of ME/CFS. And the NIH EFFrT study is particularly problematic due to the weird reward calculation, which created an incentive to not complete tasks, surely tainting people's strategies and, indeed, resulting in the investigators throwing out a control participant who applied a smart strategy in response to the incentives.
Koroshetz seems to believe that ME/CFS = (central) chronic fatigue. If you are focused on fatigue, you aren't focused on PEM.
rvallee
Senior Member (Voting Rights)
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.
Yeah keep digging. If you’re the people doing the communication and people you’re allegedly communicating with don’t get what you’re attempting to say
it’s your fault
do a better job
Don’t use double speak words and act surprised when people suspect you’re not being straight with them
it’s your fault
do a better job
Don’t use double speak words and act surprised when people suspect you’re not being straight with them
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.
The sense of entitlement in the medical profession to deference and gratitude from patients, no matter how badly those patients have been treated, is just breathtaking.
I am a long way from convinced this is a 'central controller' disorder. That is way too big a leap of logic at this stage, given the paucity of solid data. Yet it permeates their thinking to an almost pathological degree.
Does ME/CFS affect CNS function? Yes. Does that mean the CNS is the primary problem? Not even close.
Why the assumption of pathology in the central nervous system? Where is consideration of the possibility that the CNS is fine but that a pathology elsewhere in the body is imposing demands on the CNS to function outside its normal sustainable operating capacity?
I am a long way from convinced this is a 'central controller' disorder. That is way too big a leap of logic at this stage, given the paucity of solid data. Yet it permeates their thinking to an almost pathological degree.
Does ME/CFS affect CNS function? Yes. Does that mean the CNS is the primary problem? Not even close.
Yep.
rvallee
Senior Member (Voting Rights)
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.
For a start, how does it fit with results like those from these studies, or Wüst's muscle studies, etc?
Dakota15
Senior Member (Voting Rights)
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”
"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”
