NIH post-infectious CFS study
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Nielk
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The CCC has been used in many studies for ME/CFS. If Collins was truly interested in doing research on this disease, he would have used the CCC. But, that would not have been a study in unexplained fatigue, which he wants to study.
Bob
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Perhaps that's why they've chosen Reeves: because it's an operationalised criteria. And they've yet to learn how much we object to it.
Operationalized to pull in 2.54% of the population compared to Jason's 0.42%.
HHS clearly knows how much everyone objects to Reeves. Its been discussed often enough at CFSAC, Lenny Jason has reported broadly on the problems, the IOM rejected it, and advocates have raised concerns about the continued publication of Empirical studies and their use in med ed.
Frankly, I am stunned that the NIH would even suggest using it in a study.
HHS clearly knows how much everyone objects to Reeves. Its been discussed often enough at CFSAC, Lenny Jason has reported broadly on the problems, the IOM rejected it, and advocates have raised concerns about the continued publication of Empirical studies and their use in med ed.
Frankly, I am stunned that the NIH would even suggest using it in a study.
Nielk
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You know why they are doing this? BECAUSE THEY CAN!!!!
Because they know that they will get away with it. Where is the outcry????
As a UK citizen, I don't think my opinion would carry too much weight with the NIH but I'd certainly add my support to a well argued response to the study specifications.
One thing I'd be very interested to know is what attempt did the PI make to ensure that patients fed into the study design. If patients were involved, who were they representing?
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mfairma
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This is utter rubbish. And I agree, we will get what we deserve when we don't do anything about this.
I have lost faith each year that I have watched this community. There is so little willingness to be aggressive in demanding and pushing for change, so little awareness and understanding of the broad and varied factors that lock our disease in place and sentence us to lives of misery, and so little awareness and understanding of how to move forward. We do not have the capacity, knowledge, or expertise, in our organizations or in our advocates, to mount any movement that will make REAL change or even put us in a place to make change in the future.
We may not have made this situation, but we're all a part of its continuance and that's tragic and disgusting. When I first fell sick, I was willing to hunger strike to death to protest this disease, but, now, I'm deeply demoralized and spiritually broken and try each day to forget this clusterfuck as much as possible. This disease would succeed if patients' fire matched the scale of the problem and magnitude of suffering and we had leadership to channel that anger into productive causes. But there's too little fire and no good leaders.
I have lost faith each year that I have watched this community. There is so little willingness to be aggressive in demanding and pushing for change, so little awareness and understanding of the broad and varied factors that lock our disease in place and sentence us to lives of misery, and so little awareness and understanding of how to move forward. We do not have the capacity, knowledge, or expertise, in our organizations or in our advocates, to mount any movement that will make REAL change or even put us in a place to make change in the future.
We may not have made this situation, but we're all a part of its continuance and that's tragic and disgusting. When I first fell sick, I was willing to hunger strike to death to protest this disease, but, now, I'm deeply demoralized and spiritually broken and try each day to forget this clusterfuck as much as possible. This disease would succeed if patients' fire matched the scale of the problem and magnitude of suffering and we had leadership to channel that anger into productive causes. But there's too little fire and no good leaders.
Then why don't we protest this? There are a couple names associated with this study. We could get a signed petition or letter stating our grievances, cc it up the line within the NIH, to the CDC and the press.
We run the risk of being labeled as ungrateful and, well, vexatious (
) but this is worth it I'm thinking. Time and place to draw a line in the sand in the US.
We run the risk of being labeled as ungrateful and, well, vexatious (
) but this is worth it I'm thinking. Time and place to draw a line in the sand in the US.
Nielk
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How long has it been since we had a NIH intramural study? We have waited and begged for attention and funding for decades to finally get this substandard study that has nothing to do with the actual disease that we are suffering from?
Tom Kindlon
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Existing petition I set up in 2009 against the Reeves criteria with over 2600 signatures:
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/
Nielk
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Proof of NIH/CDC really listening to patients!
BurnA
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Is the biggest problem with this disease, lack of a unique deifinition? If we could achieve one thing would the priority be for all researchers and patients and advocate groups to agree on one definition. This would at least mean a study on me or cfs is at least a study on me or cfs.
It's kind of pointless otherwise.
It's kind of pointless otherwise.
jimells
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SEID is supposed to be a *Clinical* definition ONLY. However, I do recall predictions that it would soon be expanded into a counter-productive research definition...
"complete lack of interest"Sasha" said:
Bob
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So, what do we want?
PEM/PENE/CCC?
A larger study.
Exclusion of comorbid psychiatric diagnoses?
And to know the reason why the specific control cohorts have been included?
PEM/PENE/CCC?
A larger study.
Exclusion of comorbid psychiatric diagnoses?
And to know the reason why the specific control cohorts have been included?
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jimells
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http://healthaffairs.org/blog/2016/...tigue-syndrome-research-and-treatment-policy/
Dr Tuller has given us a soap box (the comment section) by placing this article in a journal aimed as DC policy people, and he has placed it at the perfect time for us to use it to criticize NIH. I suggest we use it.
p.s. His article is still #1 most read
David Tuller said:
Dr Tuller has given us a soap box (the comment section) by placing this article in a journal aimed as DC policy people, and he has placed it at the perfect time for us to use it to criticize NIH. I suggest we use it.
p.s. His article is still #1 most read
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@duncan @mfairma some cool lady (NOT ME) is trying ot organize a protest at hhs in may. here is the link. I see a lot of really good netroots activism but the trouble is no one cares about us but us. need the public to take note.
with all the good data methods these days, definitions might not matter so much as just getting the inputs. travel requirement is weird tho: when I was severe would not have been able to travel to hospital for 1 week stay. seems likely that will acquire depressed rather that me/cfs patients, not good.
here's what I do not like: "[chronic fatigue] can also cause pain, sleep problems, depression, and anxiety."
-AND-
"During the visit, participants will perform a stationary bike exercise test twice. The purpose of the exercise test is to make participants tired."
ETHICS???
with all the good data methods these days, definitions might not matter so much as just getting the inputs. travel requirement is weird tho: when I was severe would not have been able to travel to hospital for 1 week stay. seems likely that will acquire depressed rather that me/cfs patients, not good.
here's what I do not like: "[chronic fatigue] can also cause pain, sleep problems, depression, and anxiety."
-AND-
"During the visit, participants will perform a stationary bike exercise test twice. The purpose of the exercise test is to make participants tired."
ETHICS???