Edward Shorter to give talk on CFS at NIH

[Hope123]

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.

Also, we know how DISMAL the state of medical education is regarding ME/CFS in universities and other educational institutions. So what are the chances that the scientists/ staff in the group would challenge Shorter? It's not like someone coming in and saying only Type A personalities get heart disease or that if you think good thoughts, your cancer will go away, and someone will stand up and mention evidence against those ideas. Some people in the audience likely don't know much or anything at all about ME/CFS to begin with and first / early impressions are important. Once an idea is lodged, it's not easy to get rid of it. If NIH doesn't get that, they're really clueless.

That letter is just damage control and an effort to placate people.

 

[Snowdrop]

Well, if they're interested in a wide variety of POV's then maybe another 'history of ME' can be scheduled. This time Mary Dimmock could give the talk.
Not that she doesn't have other things to do. Just a thought.

 

[dreampop]

The problem I had with the letter is that it DOES reflect the views of Walitt and was probably attended by the working group. I don't buy this diverse scientific opinions bs.

 

[Nielk]

The problem I had with the letter is that it DOES reflect the views of Walitt and was probably attended by the working group. I don't buy this diverse scientific opinions bs.

And what part of Shorter's bs is scientific?

 

[BurnA]

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.

Whilst this talk should never have happened, now that it has I am trying to salvage any positives.

I think it's possible, that if Wallitt was the main organizer, those within NIH might now realise the patients were on to something when the objected to his presence on the study team.
I am sure the NIH don't like controversy no more than any other organization, if Wallitt is responsible for ongoing controversy he may get the respect he deserves, from within NIH.

Put it another way, I think it would be worse if it wasn't Wallitt who organised this, then there may be a group effort going on.

 

[TiredSam]

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.

A bit of critical analysis beforehand would have revealed that Shorter has no place in scientific circles, or can anyone with a crackpot idea turn up and give a talk? Homeopaths next week is it, followed by a Reiki practitioner, Hoppi ear candles and EFT tapping? If that's how the NIH is planning to move the field forward ...

 

[worldbackwards]

can anyone with a crackpot idea turn up and give a talk?

I'm free!

 

[Denise]

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.

I (am likely reading too much into this but i)t sounds as though this is saying the Trans-NIH ME/cfs Working Group and or the ME/cfs Special Interest Group determine NIH ideas, opinions and policy about ME....

 

[Nielk]

I (am likely reading too much into this but i)t sounds as though this is saying the Trans-NIH ME/cfs Working Group and or the ME/cfs Special Interest Group determine NIH ideas, opinions and policy about ME....

It's government speak for - even though it was our idea and we attended, we do not take any responsibility for it.

 

[Never Give Up]

Jennie thoughts:

← Small Steps of Progress

The Proverbial Olive Branch
Posted on November 10, 2016 by Jennie Spotila
In what will probably be the last word from NIH on the invited lecture by Dr. Edward Shorter, the Trans-NIH ME/CFS Working Group has issued a follow up response to the ME community. For background, read my open letter to Dr. Koroshetz, his response to the community, and my verbal line in the sand. Here is the full text of the Working Group’s follow up response, followed by my thoughts.



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.

Read the rest here

 

[Never Give Up]

I am going to chose to focus on forward progress. That progress will eventually leave Shorter in the discard pile anyway. Onward and upward!

 

[Hope123]

The problem I have with NIH pinning the invitation on any one person or institute is in today's complex world, most decisions are not made usually by one person and, this being the government, it would have gone by several people before being "rubber-stamped." So no one along that way picked up on anything or suggested that NIH might, just might consider cancelling the talk? With a well-run org, people don't feel intimidated or cowed about offering their true opinions, even if it runs counter to the boss. And what about the boss? Aren't they supposed to look out for things like this if an underling mistakenly scheduled someone? The tone of an org comes from the top.

This is an INSTITUTIONAL problem, not a single person necessarily and my sense is that people are abdicating responsibility. Any one person it is pinned to might merely be a scapegoat to satisfy the masses with the true underlying issues unaddressed.

I also think it's rich that NINR supposedly invited Shorter. Nurses and yes many nursing researchers are primarily women and the head of NINR is a woman. It's highly doubtful to me a bunch of women would not recognize Shorters' misogyny and disdain towards a condition affecting lots of other women.

 

[Nielk]

This is why the government repeatedly ignored and steps on us because we let them get away with it.

It's not just about this one lecture by the ridiculous Shorter. It is the fact that we have no say in anything about the structure of the clinical study.

We demanded the removal of the problematic investigators on the NIH clinical study -of Walitt, Gil and Salinger. NIH ignored us.

I do not see this letter by trans NIH as an olive branch at all. I see it as more of the same malfeasance and as long as we let them get away with it and go as far as saying that this is an olive branch,nothing will change.

 

[Woolie]

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.

Hope they invite a creationist next time there's something on evolution. Gotta have balance, right?. I'm sure having that perspsective and the debates it stimulates will be productive for science.

 

[TiredSam]

Didn't anyone at the NIH notice that the content of the talk had nothing to do with the title? Shorter didn't give a talk on the history of CFS, but a talk on the history of his own personal batshit ideas. Histories of CFS have been written by Hilary Johnson and Mary Dimmock, and include a critical assessment of how the NIH has historically treated CFS patients and the effect it has had. Funny how they invited a speaker who missed out that bit.

Maybe they should ask for their money back from Shorter, and then arrange an actual talk on the history of CFS if they're really interested.

And if they only wanted a history of psychogenic theories of CFS, why didn't they invite Angela Kennedy as well for a bit of balance? That would have allowed an exchange ideas, Shorter's opinions could have been challenge or disagreed with, and this productive exchange of information and divergent opinions, followed by critical analysis, could have moved the whole field forward.

Looks like someone wanted a talk by Shorter but thought they'd better smuggle it in labelled as something else. A history of CFS it wasn't.

 

[viggster]

The problem I have with NIH pinning the invitation on any one person or institute is in today's complex world, most decisions are not made usually by one person and, this being the government, it would have gone by several people before being "rubber-stamped."

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.

 

[duncan]

Alternatively, the NIH could volunteer the hows and whys and remove the need to speculate. Besides, if we are going to accuse anyone of "uninformed speculation", wouldn't that label fit Shorter's talk better?

We cannot fail to speak out against this sort of vulgarity. I think the NIH needs to know we are paying attention.

 

[jadam914]

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.

Yes, it's tiring but someone is to blame. I want to know who needs to burn at the(proverbial) stake. But how will we find out?

 

[NL93]

https://twitter.com/i/web/status/796734985394909189

 

[Neunistiva]

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.