Details on NIH study

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Have you read the prior papers from the lead clinical investigator? Because I'm up to three for three looking pretty bad. The 3rd one is musing on the evolution of the symptoms of fibromyalgia, and it's similarities to neurasthenia, with the attraction of being a "real illness" ...

I think we've found the American version of Simon Wessely.
I haven't read the papers yet, but how can he be our SW when he plans to look at extensive physiological data?
 

Valentijn

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I haven't read the papers yet, but how can he be our SW when he plans to look at extensive physiological data?
Because he specializes in burying physiological data, or explaining how that data proves the problems aren't really that real. Wessely has certainly done the same thing, such as with low-dose hydrocortisone trials.
 

MeSci

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- NIH will make stem cells + neurons + humanized mice with ME patient cells - they are making a mouse model of the illness
Even if mouse 'models' were any use at all (doubtful), how on earth can they create a model of an illness with unknown aetiology and unknown biology? Not to mention such complexity that it requires sufferers to be able to describe how it affects them.

This blogpost of mine details what a cancer researcher thinks of 'mouse models'.

What a waste of time, money and innocent lives.
 

JayS

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I'm sure someone will take a look at the other 26 names, but this one jumped out at me: Fred Gill, who's said to be a self-proclaimed protege of Stephen Straus, claims GET as best treatment, and does not agree with Light/Stevens exercise testing research in CFS. I'd ask why anyone like that would be involved with something like this, but what's the point.
 

halcyon

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If anyone looks at that plan and decides NIH is not serious about this, they need to take a few steps back from the screen.
I don't think the main criticism was ever that the NIH is not serious. The main criticisms are to do with patient selection and exclusion criteria and choice of control groups.

Again, we're getting bombarded with information from various sources and none have been consistent. The unintentionally posted protocol says Reeves, advocates speaking to NIH say all criteria including IOM, these slides say Fukuda+CCC. Again, I will continue to reserve further judgement until the full protocol is posted in its entirety on the NIH website.
 

Simon

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and another seems to be going the central sensitization route (your brain just thinks you're fatigued) for GWS/CFS.
also a deep weirdness with the FMD control group. I hope Dr Nath will respond more fully about that control group in days to come,
The central sensitisation route is what is supposed to explain FMD, so that is a worry, because the use of FMD as a control is very odd.

Have you read the prior papers from the lead clinical investigator? Because I'm up to three for three looking pretty bad. The 3rd one is musing on the evolution of the symptoms of fibromyalgia, and it's similarities to neurasthenia, with the attraction of being a "real illness" ...
Worrying, but hope you can share some titles/abstracts

Overall I'm very impressed, but there are some causes for concern too - and past experience says I shouldn't ignore them altogether.
 
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Yogi

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I don't think the main criticism was ever that the NIH is not serious. The main criticisms are to do with patient selection and exclusion criteria and choice of control groups.

Again, we're getting bombarded with information from various sources and none have been consistent. The unintentionally posted protocol says Reeves, advocates speaking to NIH say all criteria including IOM, these slides say Fukuda+CCC. Again, I will continue to reserve further judgement until the full protocol is posted in its entirety on the NIH website.
Here is Fred Gill.

http://www.cfscentral.com/2011/02/training-day.html

I think we systematically have to go through all the names to see whether these people will be helpful or not.
 

Simon

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Here are the screen shots
Thanks! Just wanted to focus on this one, because it's pretty cool science.


So it looks to me like they will
  • take stem cells from patients' blood (stem cells are only partially differentiated, and can divide to replace the fully mature adult (blood) cells as they die off' most blood stem cells live in the bone marrow but a few make it into the blood)
  • treat them (using engineered virsuses) to reprogramme them to induced-Pluripotent Stem Cells (iPSC), which unlike most stem cells can produce just about ANY type of adult cells
  • use those iPSC to make neurones
  • (so basically we've gone from patient blood stem cells to neurones, which is neat)
  • finally, test if there are any abnormalities - functioning, mitochondrial or electrophysiological in these derived nerve cells
Which is a little more sophisticated than most mecfs research, though such techniques are used to study other disoders. It's trying to find a way to test biology in the lab dishes, working with cells from patients switched into neurones. I'd love to see howt his research goes
 
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halcyon

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Perhaps that's where the Reeves idea came from.
Gill’s a big fan of the Centers for Disease Control’s Empirical case definition, AKA the Reeves definition. He loves the—gasp—"excellent" questionnaires that the Reeves definition used, as well as the CDC's 2006 gene study.
I think we systematically have to go through all the names to see whether these people will be helpful or not.
To be sure, we're going to turn these people inside out. I don't think it will change anything though. The study will go on and these are the people that will be involved whether we like it or not.
 

A.B.

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Principal investigator: Avindra Nath.
Lead clinical investigator: Brian Walitt.

So there are some concerns about Walitt, while Nath is looking good with his comments on welcoming patient involvement and AIDS activism.

Does anyone know what their roles are exactly? I suspect ultimately Nath is in control here.
 

Bob

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Even if mouse 'models' were any use at all (doubtful), how on earth can they create a model of an illness with unknown aetiology and unknown biology? Not to mention such complexity that it requires sufferers to be able to describe how it affects them.
I think I heard that the plan is to transplant some patients' cells to the animal, to see if the animal then has an illness response. But I might be wrong and I didn't catch any further details.
 

viggster

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Principal investigator: Avindra Nath.
Lead clinical investigator: Brian Walitt.

So there are some concerns about Walitt, while Nath is looking good with his comments on welcoming patient involvement and AIDS activism.

Does anyone know what their roles are exactly? I suspect ultimately Nath is in control here.
Nath is in charge of study design, etc., and will likely be senior author on the publications. Walitt will likely be running the day-to-day operations at the Clinical Center, although I'm not 100% on that.
 

beaker

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Because he specializes in burying physiological data, or explaining how that data proves the problems aren't really that real. Wessely has certainly done the same thing, such as with low-dose hydrocortisone trials.
Perhaps those who have not been around for decades don't understand the game.

@viggster I know you wrote that fine letter, and have done some other advocacy work.( For which I am truly grateful -- Thank you) I am guessing you feel heard on a more personal level than most of us b/c of that. Please understand that 30 years of non stop pain and being fed only shit can change one's perspective.

I am a sane person,amazingly enough after all this time, and I remain open-- with caution. And yes, a bit of hope thrown in there too. It's important , imo, to not get too carried away however. If I only had a dime for every time I heard "this is it" or "we have this great research study set up" "they are really interested in helping" ..... We must keep eyes wide open. I'm glad they are having a patient advisory committee, even more important for those on it to stay alert. The CFIDS Assoc. under KK thought they could be friends w/ CDC and NIH. It set us back decades.