Details on NIH study

Roy S

former DC ME/CFS lobbyist
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Erica Verrillo writes about the teleconference and study:
 
http://cfstreatment.blogspot.com/2016/03/nih-teleconference-reassurances.html
 
This is a good find by her on a vital subject:

"In reference to funding further [extramural] research Dr. Koroshetz replied that "NIH has processes that ensure that research comes in and the most highly meritorious research is funded and that all groups have a fair hearing when they come in." He stated that this is a "tried-and-true" process.

Interestingly, this "tried and true" process has recently been found wanting. A February 2016 study https://www.sciencedaily.com/releases/2016/02/160216090128.htm by Johns Hopkins University Bloomberg School of Public Health found that peer review for NIH grants was no better than random selection. One of the study's authors, Arturo Casadevall, stated that the current system is "worse than awarding grants through a lottery.""
 
 

Bob

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This is a good find by her on a vital subject:

"In reference to funding further [extramural] research Dr. Koroshetz replied that "NIH has processes that ensure that research comes in and the most highly meritorious research is funded and that all groups have a fair hearing when they come in." He stated that this is a "tried-and-true" process.
If I remember correctly, I think the NIH staff also acknowledged that this process wasn't working for ME/CFS?
 

leela

Slow But Hopeful
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Unger's decision not to include the 2-day CPET is something we really ought to be getting very loud about--
regarding both the utter folly of the decision itself, and the fact that it is the lead of the study that would even make such a decision.
There is no excuse for not doing the 2-day CPET. Unless of course you don't really want to know the truth about this disease.

Add to that the roster of questionable psychobabblers, the lack of true experts, the ignorance of all the excellent publications by said experts,
the absence of at least a few severe patients...

It is curious that they have denied Ron Davis' funding applications, and also Ian Lipkin's--yet invited Lipkin and his prestigious name to
participate in a study that--for all its truly exciting potential--appears to be being deliberately hobbled.

I was really excited about this and the momentum it expressed, but the more I learn about it, the more I feel thrown under the bus yet again.
 

Nielk

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Unger's decision not to include the 2-day CPET is something we really ought to be getting very loud about--
regarding both the utter folly of the decision itself, and the fact that it is the lead of the study that would even make such a decision.
There is no excuse for not doing the 2-day CPET. Unless of course you don't really want to know the truth about this disease.

Add to that the roster of questionable psychobabblers, the lack of true experts, the ignorance of all the excellent publications by said experts,
the absence of at least a few severe patients...

It is curious that they have denied Ron Davis' funding applications, and also Ian Lipkin's--yet invited Lipkin and his prestigious name to
participate in a study that--for all its truly exciting potential--appears to be being deliberately hobbled.

I was really excited about this and the momentum it expressed, but the more I learn about it, the more I feel thrown under the bus yet again.
Dr. Ian Lipkin serves a a member of te Advisory Committee to the Director of NIH - http://acd.od.nih.gov/members.htm
 

Bob

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Unger's decision not to include the 2-day CPET is something we really ought to be getting very loud about--
regarding both the utter folly of the decision itself, and the fact that it is the lead of the study that would even make such a decision.
There is no excuse for not doing the 2-day CPET. Unless of course you don't really want to know the truth about this disease.
Hi leela, are you referring to the CDC study or the NIH study? If you're referring to the CDC study then Unger says she hasn't ruled out a two day CPET test. If you're referring to the NIH study then they are conducting two CPET tests but we don't know the exact details yet.
 

leela

Slow But Hopeful
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Hi leela, are you referring to the CDC study or the NIH study? If you're referring to the CDC study then Unger says she hasn't ruled out a two day CPET test. If you're referring to the NIH study then they are conducting two CPET tests but we don't know the exact details yet.
Thank you for clarifying, @Bob. My head is ajumble with all this. Braincells holding a memory of Unger saying no 2-day CPET at some time about some study o_O
Best to keep watch on this issue, whatever the study.
 

Nielk

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Hi leela, are you referring to the CDC study or the NIH study? If you're referring to the CDC study then Unger says she hasn't ruled out a two day CPET test. If you're referring to the NIH study then they are conducting two CPET tests but we don't know the exact details yet.
They don't really specify that they are CPET tests. They state on the new website: " During the inpatient visit, participants will perform a stationary bike exercise test twice. The purpose of the exercise test is to make participants tired and to try to evoke symptoms, such as 'post-exertional malaise'. Tests will be performed before and after exercise testing.".
 

duncan

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They say they want to evoke PEM? Who says what they want to do with that information?

Maybe their strategy is to put patient candidates in a room with Wallit or Gill for an hour. Those that get angry and then develop PEM withing 24-72 hours could be excluded from the study.

I probably have that wrong somehow...;)
 

duncan

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I recently had a nuclear stress test with Lexi. About 48 hours later I crashed terribly. I could not follow a conversation. Felt like I would die.

I was afraid I had gone too close to sliding past that point of no return, i.e, the forever crash we all fear we will fall into one day.

For that reason alone, I could never recommend it as a serious research tool to induce PEM.

But there has to be ways to induce PEM - how about listening to patients about what usually works for them, personally?
 

Nielk

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I recently had a nuclear stress test with Lexi. About 48 hours later I crashed terribly. I could not follow a conversation. Felt like I would die.

I was afraid I had gone too close to sliding past that point of no return, i.e, the forever crash we all fear we will fall into one day.

For that reason alone, I could never recommend it as a serious research tool to induce PEM.

But there has to be ways to induce PEM - how about listening to patients about what usually works for them, personally?
That is a novel idea - "listening to patients" - or is it an ancient one?
 

CFS_for_19_years

Hoarder of biscuits
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I appreciate that this is coming out of left field (although I'd argue it is relevant), but did the NIH really pick THE one doctor who comes off as the world's most pretentious douche bag to head up their all important "we're on your side and we're going to solve the CFS/ME challenge as a team" study?

From this video, I'd suggest that the answer to that question is obvious: http://www.rheumatologynews.com/spe...e-model/e913134880916685f3005dac5459ab88.html
It's not coming out of left field at all. Many of us have had the same reaction to the video. I'd say that at least 100 of us have commented on Walitt's video (among other things) on various threads about him.

My reaction to it:
http://forums.phoenixrising.me/index.php?threads/details-on-nih-study.43076/page-15#post-699821

People like him puzzle me.

I cannot decide whether a subset of them really believe this shit, or if they are just some interest's stooges, or if it is something altogether different.
You and Mark Twain may both be on to something:
World run by imbeciles.jpg


Walitt strikes me as an imbecile who really means it.
 

Justin30

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I believe a new thread is in order. There seems too much contested info amongst the community with regard to the NIH study.

I feel that to much good info is being lost to PR thread History. I will start a thread in the General News Section. To capture ideas to be sent to our organizations to contest issues with this study.
 
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I believe a new thread is in order. There seems too much contested info amongst the community with regard to the NIH study.

I feel that to much good info is being lost to PR thread History. I will start a thread in the General News Section. To capture ideas to be sent to our organizations to contest issues with this study.
Did you see this in another thread? Thought it might be helpful.
http://forums.phoenixrising.me/inde...lems-with-the-me-cfs-study.43799/#post-711248