Edward Shorter to give talk on CFS at NIH

[Ysabelle-S]

Did I detect a touch of hysteria in his voice with respect to fetishes and bdsm, or is that the way he usually talks? He needs to chill out. One of my avatars in Second Life used to wear a leather catsuit - apparently it was based on some fantasy series I'd never heard of - then she'd go over to the adult sims to take gothicky pics. My, did people become very well behaved in her presence. Which meant they didn't get in her way, barring a guy who wanted to be told what to do, so I think she told him to stand in a corner or something, and he did.

 

[BurnA]

Absolutely hysterical, literally laughed out loud. Couldn't even parody that guy.

Lets hope the NIH find him equally hysterical.

 

[Old Bones]

Just as a reminder - shortly after the IOM report (Feb 2015) came out, Shorter posted this:
https://web.archive.org/web/2015022...essed/201502/chronic-fatigue-syndrome-is-back

I'm not holding my breath, but . . . I nominate Edward Shorter as a candidate to provide the long-overdue, and well-deserved, apology to ME patients on behalf of the NIH and CIHR (Canada). I can dream, can't I? The original article posted by @Denise above is dreadful.

 

[worldbackwards]

Get to know Edward Shorter.

Christ, let's not. Haven't we suffered enough?

 

[Never Give Up]

Perhaps they need to give him an audience in order to thoroughly understand his POV to effectively overcome objections and win over the hearts and minds of the enemy. Not saying I believe that, the whole damn thing makes me sick!

 

[Never Give Up]

The ME/cfs Interest Group has invited people who (from their reputations) gave helpful, thorough presentations.
( I don't know if when this page was last updated - it lists the most recent presentation as September)
"Speakers to date include:

June 15th, 2016: Anthony Komaroff, M.D.: An Overview of Chronic Fatigue Syndrome (ME/CFS)

July 18th, 2016: Leonard Jason, Ph.D.: Diagnostic Challenges and Case Definitions for CFS and ME

August 24th, 2016: Daniel Peterson, M.D.: CFS/ME: Perspectives from a Local Epidemic 1984-2016

September 21st, 2016: Staci Stevens, M.A. and Mark Van Ness, Ph.D.: Cardiopulmonary Exercise Testing in ME/CFS"

Where and how Shorter fits in with these presenters is beyond me...

Where are you finding this list?

 

[Denise]

Where are you finding this list?

I found it on this NIH page
http://mecfs.ctss.nih.gov/sig.html

 

[Ysabelle-S]

I would be interested to know when his visit was arranged since there seems to be a fightback going on right now from the BPS crowd. Could of course be more rooted in the fact there's more research coming out on the other side of the Atlantic and he's feeling threatened by it, in case things said or written in the past come back to bite him.

 

[Never Give Up]

I found it on this NIH page
http://mecfs.ctss.nih.gov/sig.html

Thank you.

Aside from Maureen Hanson's tweet, have you seen the planned ES presentation listed anywhere official, like on the sig page, because I can't find it anywhere?

 

[JaimeS]

 

[rebecca1995]

This is an outrage! Can we get an MEAction petition to stop him from addressing NIH? Also, a statement and/or press release countering his shameful and abusive views?

 

[dreampop]

I didn't know CFS existed for the first 2 years before my dx, I didn't think anything was wrong with me, I never played the illness role, I never stopped my life or focused on my illness, I have no bias or aversion to psychiatric diagnosis and I never interacted with a CFS activist forum until this year (by some miracle, guys, I haven't become dramatically worse since coming to PR) and yet I have to read a flippant, offensive and discriminatory piece of shit that defines my illness with demonstrable falsehoods. One might call them false illness beliefs about me. And this guy is invited by the NIH SEP? We're fucked.

 

[NL93]

LOL. What is he thinking? That when you officially recognize ME/CFS as a biological disease defined by exertion intolerance suddenly entire populations will start thinking they have it? That human species will go extinct because everyone will stay in bed all day because they will get the false illness belief any exertion is bad for everyone?
Better to just pretend the entire disease doesn't exist?

Seriously, why on earth is the NIH inviting this man? He know nothing about CFS and he's obviously a lunatic.

 

[Denise]

Thank you.

Aside from Maureen Hanson's tweet, have you seen the planned ES presentation listed anywhere official, like on the sig page, because I can't find it anywhere?

Good question. I have not seen it anywhere else.
I would like to know who the other upcoming speakers are.


eta:
The original info can be found here https://webcache.googleusercontent.com/search?q=cache:fXrdrB5bxTQJ:https://irp.nih.gov/news-and-events/events &cd=1&hl=en&ct=clnk&gl=us - source - Jennie Spotila's post.
though it is not solely a list of ME/cfs Special Interest Group meetings and does not seem to list meetings beyond next Wednesday (9 November).

 

[Kati]

Jennifer Spotila wrote an excellent open letter to NINDS director. Please like, retweet and take a look:

https://twitter.com/i/web/status/794355198235971584

 

[Denise]

Jennifer Spotila wrote an excellent open letter to NINDS director. Please like, retweet and take a look:

https://twitter.com/i/web/status/794355198235971584

Thanks @Kati for linking to this.
This IS an excellent letter.

 

[Ysabelle-S]

All I see at the moment are proponents of the psych school desperately trying to plug up the increasing holes in their dam while the water on the other side gets higher. There will come a point when the scientific research breaks that dam, and some careers are going to be washed away.

 

[mfairma]

This should be upsetting, but I'm mostly beyond the stage of caring and just find it ludicrous.

I have long felt that shit in this community is so bad that we should dispense with soft measures and throw our bodies on the tracks. I tried to convince other advocates of that years ago and got nowhere.

It's nuts that this is happening, but it's more nuts that we and our advocates can absorb these insults for so long without deciding that enough is enough. At what point do we decide that petitions and letters aren't enough? Clearly never.

 

[JaimeS]

Suggest something, @mfairma

 

[duncan]

In its efforts to demonstrate its commitment to solving ME/CFS puzzle, the NIH will be inviting The Simpsons' Mr. Burns to share his views on the illness.