Edward Shorter to give talk on CFS at NIH

[Snowdrop]

My suggestion is that we don't engage with Shorter. Our issue is not with him, it's with NIH. He has a right to say whatever he wants. If he wants to say chickens fly higher than eagles, that's his right. The issue is when government agencies give his words legitimacy.

By engaging him we will lose precious energy better spent advocating elsewhere, and talking to him might just give him ammo to call us whiny again.

And it's what ES wants, it's what all gaslighters want--to fan the flames.

 

[hixxy]

I really hope patients don't burn the house down around themselves trying to punish whoever invited Shorter to speak.

 

[jadam914]

My suggestion is that we don't engage with Shorter. Our issue is not with him, it's with NIH. He has a right to say whatever he wants. If he wants to say chickens fly higher than eagles, that's his right. The issue is when government agencies give his words legitimacy.

By engaging him we will lose precious energy better spent advocating elsewhere, and talking to him might just give him ammo to call us whiny again.

So true, Shorter is a kin to Holocaust deniers and flat earthers. The NIH invite is the problem. Engaging this mentality challenged Neanderthal is a waste of energy.

 

[Forbin]

Perhaps we should take Dr. Shorter's humble advice when it comes to judging his work.

In the general discussion of Shorter's presentation at the 1993 CIBA symposium, there seems to have been some question as to whether the opinions of general practitioners were being given sufficient weight.

Shorter: The historian has to sample as broad a range of opinion as he or she can. In my own work, I certainly try to read the writings of GP's, which are legion; it's for the consumer of my research to judge whether I have succeeded or not!

Chronic Fatigue Syndrome - CIBA Foundation Symposium (p. 18)

[Bolding mine, but the exclamation point is in the original transcript.]

 

[Never Give Up]

OMF just posted this on Facebook:

Open Medicine Foundation
7 hrs ·
Dr. Ron Davis & OMF are committed to fast-tracking revolutionary science for finding answers for ME/CFS. Taking action to ensure that ME/CFS is recognized as a physiological disease and that patients are treated with dignity, he reached out to NIH to protest Dr. Shorter presenting to the Trans-NIH ME/CFS Working Group. He received the following response.

Dear Dr. Davis,

Your email to Dr. Francis S. Collins, Director of the National Institutes of Health (NIH) concerning myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been forwarded to this office for reply. You wrote to express concern about the NIH lecture by Edward Shorter that took place on November 9th. Thank you for your comments.

Please know that the lecture you mentioned 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 people 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.

Sincerely yours,
Marian Emr
Director, Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group
#EndMECFS #OMF #TripleTuesdayOMF



9 Comments

 

[Neunistiva]

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.

Returning this copy-pasted response to someone of Dr. Davis' stature seems more than a bit discourteous.

Not to mention that they gave this patronizing explanation of what science is to one of the greatest scientists and researchers of our time.

*Cringe*

 

[dreampop]

Glad Collins can dignify Davis with a copy-paste response.

 

[ash0787]

No luck with this then so far ? I don't think the 'free speech' concept they are promoting applies in this case,
to be honest this is like inviting someone to speak at NASA who believes in the Flat Earth conspiracy theory.

 

[AndyPR]

Letter from Dr Nahle in the latest Solve ME/CFS newsletter;

....
In this context, it was truly unsettling to learn about the news of an invited speaker lecturing at the National Institutes of Health (NIH) on November 9, 2016. For decades, the speaker has been a staunch adversary of studying the pathophysiology of ME/CFS and refuses to acknowledge its root cause. I have written many times previously, including in an editorial in March of this year, on the aftermath of the revitalization of the Trans-NIH ME/CFS Working Group—specifically on the perils caused by what I then called “ME/CFS deniers” and “psychosomatization sympathizers.” We will not dedicate additional time to these individuals or elaborate on their misguided theories on our pages other than to make the following three points:
....

http://solvecfs.org/november-research-1st-dr-nahles-letter/

 

[Hope123]

It's fairly straightforward for someone to invite a speaker to NIH, it doesn't mean many people had to sign off on it. If NIH paid his travel, some administrator (not a researcher) would have had to sign off.

The disconnect here is that Koroshetz, director of NINDS, is currently heading up ME/CFS efforts at NIH and and the invite apparently came from the nursing institute, where Koroshetz has no authority.

The endless uninformed speculation about how this talk happened is getting tiring. Maybe we should wait until more real information shows up via FOIA or other routes.

Also - it was a one hour talk attended by 15 people or so. The patient who went to the talk said that she felt the crowd was not very receptive to Shorter's evidence-free statements about CFS being hysteria.

How do you know it's straightforward? Did/ do you work before at NIH? If so, enlighten us. If not, don't make the presumption it's so easy.

I have relatives and friends who work for government, yes at NIH too. And know people who've spoken at various government meetings. Everything takes several steps. For examples, there are disclosure forms for speakers to fill out, CVs to send, budget forms providing rationale for the talk and the amount needed for travel, etc. It's not just someone calling someone up and saying,"Hey, why don't you come to speak to us on such-and-such a date?" and that's all.

 

[viggster]

How do you know it's straightforward? Did/ do you work before at NIH? If so, enlighten us. If not, don't make the presumption it's so easy.

Yes I worked there for two years. And yes there are forms involved, but you implied that several or many scientists would have to approve the talk, which is not the case.

 

[Hope123]

Yes I worked there for two years. And yes there are forms involved, but you implied that several or many scientists would have to approve the talk, which is not the case.

Nope, I did not imply that only scientists had to approve the talk. There are also non-scientist bureaucrats involved, .....i.e. there was time for them to investigate Shorter a bit and consider modifying/ cancelling the talk but they did not do it.

NIH should also have recognized that their history with the ME/CFS community has been tumultuous, going back 3 decades, and not treated any situation associated with it as business as usual. Even if there was lack of institutional memory, just the recent concerns over the Intramural study, Gill, Walitt, etc. should have tipped them off.

I should also comment that perhaps we lucked out that ONLY 15 people attended that talk but that was not NIH's doing. That was luck and perhaps apathy helping us.

 

[Nielk]

New blog by Gabby Klein


Promises, Promises: Thirty Years of NIH Broken Promises

"The pattern of 30 years of NIH broken promises to the myalgic encephalomyelitis (ME) community is continuing unhindered. Representatives of the NIH ME/CFS Clinical study and the Trans-NIH Working Group make empty, insincere promises. They assure us that our voice and input is essential when in reality their actions entirely dismiss our view. More alarmingly, it has become apparent as of late that those at NIH responsible for ME research, doubt the biological nature of the disease. This unscientific hypothesis will affect every process that NIH takes and the result would adversely affect ME patients for a long time to come."

Read blog here -

https://relatingtome.net/2016/11/14/promises-promises-thirty-years-of-nih-broken-promises/

 

[trishrhymes]

Excellent blog. Well done Gabby Klein.

Trouble is, who but us will read it.

Sigh...

 

[actup]

@Nielk, an exceptionally well written blog. So Walitt introduced Shorter at the lecture. Big surprise. Would guess that Dr Koroshetz is not too happy about the brouhaha caused by Walitt's likely invitation to this "misogynist of the year" (prior to this lecture thought Trump might be in the lead). Thanks for your "fly on the wall " insights.

 

[Esther12]

@Nielk, an exceptionally well written blog. So Walitt introduced Shorter at the lecture. Big surprise. Would guess that Dr Koroshetz is not too happy about the brouhaha caused by Walitt's likely invitation to this "misogynist of the year" (prior to this lecture thought Trump might be in the lead). Thanks for your "fly on the wall " insights.

Thanks for pulling that out.

 

[Neunistiva]

https://twitter.com/i/web/status/798563180079411200

 

[Solstice]

Gotta pay 8,99 for a month to visit that?

 

[Nielk]

Gotta pay 8,99 for a month to visit that?

Lol - $8.99 (not 8,99)

Hillary is a world-class author and her articles on there will be one of a kind. Might be worthwhile for those that can afford it.

 

[Nielk]

Blog by MEadvocacy

http://www.meadvocacy.org/knocking_down_nih_bias