Woolie
Senior Member
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Nice description. Yea, its kind of relative rather than absolute, isn't it?
Edward Shorter to give talk on CFS at NIH
- Thread starter worldbackwards
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Hope123
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I wanted to say something about people's efforts to figure out where Shorter's invitation came from......in some sense, it's nice to know but lets not forget that NIH has a TRANS-NIH ME/CFS Working Group ("trans" = across), which is the umbrella under which the different institutes work together so what the point of a TRANS (capitalized for emphasis) group if one arm doesn't know or coordinate with the other what they're doing?
And thank you to the patient advocate for attending. This is the 2nd time. In 2011, no patients were invited to that one either but patient advocate Charlotte Von Salis, who lived in the area, made it her business to attend and then write up the meeting. At least that meeting was webcasted/ archived. This one was not.
You know bad things have to be going down when :
1) the announcement of the talk is pulled off online
2) we get denials that it wasn't scheduled by the ME/CFS Interest Group when in fact the original announcement states "ME/CFS Special Interest Group."
3) the talk goes ahead anyway
4) the public is not invited
5) no patients or their representatives are allowed to give a rebuttal; standing up and demanding to be heard is a brave act on the advocate's own part
6) there is no webcast or transcript, live or archived, of the talk for people to review later.
It's bad when people have to snip or screenshot or use cached Internet archives to document the changes and articles pulled offline. Is this the Twilight Zone or merely 1984?
And thank you to the patient advocate for attending. This is the 2nd time. In 2011, no patients were invited to that one either but patient advocate Charlotte Von Salis, who lived in the area, made it her business to attend and then write up the meeting. At least that meeting was webcasted/ archived. This one was not.
You know bad things have to be going down when :
1) the announcement of the talk is pulled off online
2) we get denials that it wasn't scheduled by the ME/CFS Interest Group when in fact the original announcement states "ME/CFS Special Interest Group."
3) the talk goes ahead anyway
4) the public is not invited
5) no patients or their representatives are allowed to give a rebuttal; standing up and demanding to be heard is a brave act on the advocate's own part
6) there is no webcast or transcript, live or archived, of the talk for people to review later.
It's bad when people have to snip or screenshot or use cached Internet archives to document the changes and articles pulled offline. Is this the Twilight Zone or merely 1984?
dreampop
Senior Member
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The trans working group isn't particularly well, I think that has been clear for a long, long time. I don't expect it to ever work, it is poor structure for a mystery disease.You could ME/CFS in put National Eye Institute and it would do better.
You need a team that focuses ONLY on CFS, advocates only for CFS, etc...formed of people interested in the science of ME/CFS and ideally answer directly to the office of the director. This team could guide the science interest group for other members of NIH and form the special emphasis review panel (for grants). This would provide long term, goal oriented structured grant approvals, RFAs and provide a spine for the sparse research. Like, the "office of aids research" which is not a separate institute but a sub institue under the office of the director.
This was just sent out by the Trans-NIH ME/cfs Working Group
"Dear members of the ME/CFS community,
You have written to express concern about the NIH lecture by Edward Shorter that took place on November 9th. Thank you for sending us your thoughts.
Please know that the lecture you asked about was not sponsored by either the ME/CFS Special Interest Group or the Trans-NIH ME/CFS Working Group, which means that it does not reflect the ideas, opinions, or policy of the NIH or the scientists now working on this disease. Given the professional and learning environment that NIH promotes, dozens of people come each week to the NIH to exchange ideas with NIH scientists; the scientists who attend these lectures frequently challenge or disagree with the speakers’ ideas. In scientific circles, disagreement with what is said is often more scientifically productive than agreement. The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward. The most important thing that we wish to share is that NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS and to improve the lives of people who have been suffering for years, and even decades. Comments made in a seminar will not undermine the progress of science at NIH.
Several of you have asked why the lecture was not mentioned during the telebriefing that NIH hosted on November 2nd. The telebriefing was intended to discuss the efforts of the Trans-NIH ME/CFS Working Group and the progress made in initiating the NIH Intramural research clinical study. The lecture was not part of those efforts.
The speaker shared his viewpoint, the scientists who attended asked questions, and perspective was provided by a patient and a community physician. The lecture was attended by approximately 15 scientists, including some who are part of the clinical study investigative team. It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.
Regards,
The Trans-NIH ME/CFS Working Group"
"Dear members of the ME/CFS community,
You have written to express concern about the NIH lecture by Edward Shorter that took place on November 9th. Thank you for sending us your thoughts.
Please know that the lecture you asked about was not sponsored by either the ME/CFS Special Interest Group or the Trans-NIH ME/CFS Working Group, which means that it does not reflect the ideas, opinions, or policy of the NIH or the scientists now working on this disease. Given the professional and learning environment that NIH promotes, dozens of people come each week to the NIH to exchange ideas with NIH scientists; the scientists who attend these lectures frequently challenge or disagree with the speakers’ ideas. In scientific circles, disagreement with what is said is often more scientifically productive than agreement. The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward. The most important thing that we wish to share is that NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS and to improve the lives of people who have been suffering for years, and even decades. Comments made in a seminar will not undermine the progress of science at NIH.
Several of you have asked why the lecture was not mentioned during the telebriefing that NIH hosted on November 2nd. The telebriefing was intended to discuss the efforts of the Trans-NIH ME/CFS Working Group and the progress made in initiating the NIH Intramural research clinical study. The lecture was not part of those efforts.
The speaker shared his viewpoint, the scientists who attended asked questions, and perspective was provided by a patient and a community physician. The lecture was attended by approximately 15 scientists, including some who are part of the clinical study investigative team. It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.
Regards,
The Trans-NIH ME/CFS Working Group"
Nielk
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ha ha ha ha ha.
It has nothing to do with us but some who attended were from the NIH clinical study.
How stupid do they think we are?
Nielk
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We know that it was Nath's idea and that the NINR made it happen.
But, regardless of who initiated this or arranged the invitation - NO ONE AT NIH HAD A PROBLEM WITH IT. They knew how outraged we were, yet were not willing to do anything about it.
But, regardless of who initiated this or arranged the invitation - NO ONE AT NIH HAD A PROBLEM WITH IT. They knew how outraged we were, yet were not willing to do anything about it.
Kati
Patient in training
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Is anyone working on a FOIA?
I am also curious to know who paid for his travel and accomodation expenses, and which budget it came from?
Nielk
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Also why was this "advocate" allowed to participate? So that they can claim we were invited? We were told that we were prohibited to attend. If this info had changed why were we not provided that info? If it was open to one, it should have been open to all. Who was the physician who attended?
This all smells so fishy and contrived.
This all smells so fishy and contrived.
I believe there is a FOIA underway.
There are certainly lots of questions about this "episode" (I don't know what else to call it).
Kati
Patient in training
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I mentioned this before, but here goes again. I believe she is an employee at NIH who also happens to be a patent. i maybe wrng on that but pease consider this possibility.
Nielk
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"Perspective was provided by a patient". Why call him/her a patient then?
Why do they mention this in the letter? The connotation being that - see we "included" your voice there. No - they didn't.
BurnA
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Do we know that it was Naths idea?
Hope123
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Contact your Congressional member(s). They can get answers that we cannot do as easily or quickly as ordinary citizens.
snowathlete
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This sounds reasonable without any context but statements should not be made as if there is no context.
The situation here is one where millions of disabled people have been been neglected for decades and continue to be neglected, and a major reason for this neglect occurring in the first place is stuff that Shorter and people like him have said, and continue to say. Science is supposed to move forward, with bad ideas like his, when not supported by evidence, being rejected, not encouraged to continue holding back progress due to the supposed lofty ideals of science.
As the context was ignored this part of the statement comes across as inconsiderate, unscientific and patronizing. Maybe some people at the NIH get it, or are starting to get it, but this suggests that some people still have not spent enough time understanding how we got to where we are, and that needs to happen if we're going to avoid staying put.
Nielk
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On FB it was posted that Carol Head of SMCI made calls and found out that it was Nath's idea to have a lecture on the history of ME/CFS. NINR - The Nursing Institute is the one who took care of it.
Hope123
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Agreed.
Actions speak louder than words. They should have dis-invited the guy. I'm sure other people have been invited to NIH before and had their talks pulled or cancelled for less egregious reasons than this (e.g. some other priority came up, there was a government shutdown, etc.). NIH would rather offend patients, clinicians, researchers, and even any person off the street with a some shred of intelligence and empathy than someone like Shorter.
We will have to wait for the patient advocate to speak but my impression was she went of her own accord. That's right, a bit of good old-fashioned civil disobedience. The letter makes it sound like NIH invited her but if they did so, why not say at the very start that a patient and community physician, whatever that means, is present? (Community physicians can be just as prejudiced as Shorter and they do not mention who that is.) That would have re-assured people.
And inviting people to give all points of view? False equivalence. I thought NIH was a scientifically-based institution, not one given to speakers whose views are not based on science.
viggster
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Nath works for NIAID, not the nursing institute. Nath apparently suggested a talk on history of CFS but did not choose the speaker. Remember, he's a neurovirologist and said on one of the conference calls he's not interested in psychiatry.