BurnA
Senior Member
- Messages
- 2,087
So it seems to me like he was invited for ME/CFS special interest group but they have decided to cover it up by saying he wasn't.
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Edward Shorter to give talk on CFS at NIH
- Thread starter worldbackwards
- Start date
JaimeS
Senior Member
- Messages
- 3,408
- Location
- Silicon Valley, CA
It sounds like someone invited him at someone they trusted's suggestion without doing the 15 minutes of interwebs research that would show he's a crank.
My favorite part is when he says there is no biological evidence or biological research for ME, just this year.
I swear, it's like Schrodinger's Research with this sort of theorist. If they plug their ears and hum super-loud, there could be research, there might not be research...
Who's to say?
(Pubmed. Pubmed is to say.)
My favorite part is when he says there is no biological evidence or biological research for ME, just this year.
I swear, it's like Schrodinger's Research with this sort of theorist. If they plug their ears and hum super-loud, there could be research, there might not be research...
Who's to say?
(Pubmed. Pubmed is to say.)
ghosalb
Senior Member
- Messages
- 136
- Location
- upstate NY
Besides this current fiasco, if NIH is going to invite just one presenter per month to "learn" about CFS...it will take couple of years just to "learn".
Never Give Up
Collecting improvements, until there's a cure.
- Messages
- 971
Jennie Spotila's latest http://occupyme.net/2016/11/04/enough-is-enough/
← Dr. Koroshetz Responds
Enough Is Enough
Posted on November 4, 2016 by Jennie Spotila
After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion in scientific conversation is not an endorsement,” and so little is known “that inclusivity of scientific thought will be critical to our success.”
“nclusivity of scientific thought” does not typically include hypotheses that have been disproven. NIH does not invite HIV denialists and anti-vaxxers as speakers because they add no value to NIH’s work. So if NIH is making sure an opinion is included in the conversation, then NIH has made a judgment that the opinion is worth thinking about. Extending an invitation to Dr. Edward Shorter means that NIH expects he will say something relevant to its work.
To which I say: Enough.
Reams of data and peer reviewed papers have confirmed what patients have always known: ME/CFS is not a psychological disorder. The Agency for Healthcare Research and Quality, the National Academy of Medicine and NIH’s own P2P Panel concurred.
It is past time to discard the psychogenic myths of CFS’s past, once and for all.
Enough. Is. Enough.
I do not accept that outdated views, disproven by more recent work, should be included in the scientific conversation. My health and my life are worth more than that. I demand rigor. I demand data. I deserve quality science, not dusty old-fashioned prejudice.
I do not accept being dismissed, belittled or disrespected. I will not be manipulated into believing that my reality is not real.
People with ME/CFS are not delusional somatizers. The National Academy of Medicine (IOM) report was not junk science. Militant advocates did not hijack the committee. People with ME/CFS have not obsessed their way into disability.
Until the National Institutes of Health – as an institution and as a collection of individuals – sees this truth of the matter, there is nothing more to say.
← Dr. Koroshetz Responds
Enough Is Enough
Posted on November 4, 2016 by Jennie Spotila
After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion in scientific conversation is not an endorsement,” and so little is known “that inclusivity of scientific thought will be critical to our success.”
“nclusivity of scientific thought” does not typically include hypotheses that have been disproven. NIH does not invite HIV denialists and anti-vaxxers as speakers because they add no value to NIH’s work. So if NIH is making sure an opinion is included in the conversation, then NIH has made a judgment that the opinion is worth thinking about. Extending an invitation to Dr. Edward Shorter means that NIH expects he will say something relevant to its work.
To which I say: Enough.
Reams of data and peer reviewed papers have confirmed what patients have always known: ME/CFS is not a psychological disorder. The Agency for Healthcare Research and Quality, the National Academy of Medicine and NIH’s own P2P Panel concurred.
It is past time to discard the psychogenic myths of CFS’s past, once and for all.
Enough. Is. Enough.
I do not accept that outdated views, disproven by more recent work, should be included in the scientific conversation. My health and my life are worth more than that. I demand rigor. I demand data. I deserve quality science, not dusty old-fashioned prejudice.
I do not accept being dismissed, belittled or disrespected. I will not be manipulated into believing that my reality is not real.
People with ME/CFS are not delusional somatizers. The National Academy of Medicine (IOM) report was not junk science. Militant advocates did not hijack the committee. People with ME/CFS have not obsessed their way into disability.
Until the National Institutes of Health – as an institution and as a collection of individuals – sees this truth of the matter, there is nothing more to say.
Daisymay
Senior Member
- Messages
- 754
Wow, thank you, thank you, thank you Ron Davis!
- Messages
- 27
Slightly off topic but I can't help being reminded of the CIHR anonymous review no1, responsible for the rejection of the canadian catalyst grant application for ME/CFS, a review I believe @Sidereal called "a sinister piece of garbage" (a euphemism).
Could that have been Shorter himself?
Here are some quotes from each, too few to draw conclusions, but there are some rhetorical similarities, which makes one wonder... (and of course they are both canadians)
-Shorter: "The IOM report systematically overlooked any alternative explanation; it ignored the large critical literature in medicine on CFS"
-Sinister reviewer: "Failure to acknowledge the substantial literature that has established psychosocial factors as both a cause and perpetuating factor for CFS is concerning"
-Shorter: "These illness beliefs may lead to disability, as people obsess about their symptoms, entrench themselves in the conviction of organicity, and become disabled."
-Sinister reviewer: "Attributing symptoms to underlying physical pathology results in low levels of physical activity, which in turn amplifies fatigue severity"
-Shorter: "This illness attribution [to EBV] dissipated with the discovery that the great majority of the population carried positive titers for the virus"
-Sinister reviewer: "There is no compelling evidence that any infectious agent is a cause of CFS"
And then you have this - both make the same clumsy attempt at showing they are sensitive to the potential tragedies:
-Shorter: "Their marriages may break up; they may lose their jobs. The human consequences of these illness beliefs, in other words, may be considerable"
-Sinister reviewer: "Failure to attend to psychiatric co-morbidity can be devastating; individuals labelled with CFS are at higher risk of suicide than matched controls without CFS"
(the clumsiness obviously being that, all too often, what is most distressing to a patient is precisely the kind of skeptical claims they are themselves making regarding the biological reality of the illness)
So, should these two be one - that would be "Sinister Shorter"…- he would well deserve this designation, for, even though no one is ever directly to blame for a death like that of Justin Noble's recently, it could be that Justin would still be here with us if he had had that little "hope boost" that the catalyst grant approval would have given to many very ill canadians.
Shorter, if you are indeed "Sinister Shorter", you have already caused enough harm in Canada, so please stay out of the US, where much good is being done right now more than ever.
Could that have been Shorter himself?
Here are some quotes from each, too few to draw conclusions, but there are some rhetorical similarities, which makes one wonder... (and of course they are both canadians)
-Shorter: "The IOM report systematically overlooked any alternative explanation; it ignored the large critical literature in medicine on CFS"
-Sinister reviewer: "Failure to acknowledge the substantial literature that has established psychosocial factors as both a cause and perpetuating factor for CFS is concerning"
-Shorter: "These illness beliefs may lead to disability, as people obsess about their symptoms, entrench themselves in the conviction of organicity, and become disabled."
-Sinister reviewer: "Attributing symptoms to underlying physical pathology results in low levels of physical activity, which in turn amplifies fatigue severity"
-Shorter: "This illness attribution [to EBV] dissipated with the discovery that the great majority of the population carried positive titers for the virus"
-Sinister reviewer: "There is no compelling evidence that any infectious agent is a cause of CFS"
And then you have this - both make the same clumsy attempt at showing they are sensitive to the potential tragedies:
-Shorter: "Their marriages may break up; they may lose their jobs. The human consequences of these illness beliefs, in other words, may be considerable"
-Sinister reviewer: "Failure to attend to psychiatric co-morbidity can be devastating; individuals labelled with CFS are at higher risk of suicide than matched controls without CFS"
(the clumsiness obviously being that, all too often, what is most distressing to a patient is precisely the kind of skeptical claims they are themselves making regarding the biological reality of the illness)
So, should these two be one - that would be "Sinister Shorter"…- he would well deserve this designation, for, even though no one is ever directly to blame for a death like that of Justin Noble's recently, it could be that Justin would still be here with us if he had had that little "hope boost" that the catalyst grant approval would have given to many very ill canadians.
Shorter, if you are indeed "Sinister Shorter", you have already caused enough harm in Canada, so please stay out of the US, where much good is being done right now more than ever.
HowToEscape?
Senior Member
- Messages
- 626
The AIDS crowd were organized, media-savvy and effective. We're the opposite, and we're getting opposite results. In my city, having HIV gets you a free apartment (vacated apartments ofter rent in less than 7 days here, they can turn over mid-month). Us? Back of the hand.
Mary
Moderator Resource
- Messages
- 17,406
- Location
- Southern California
Thanks @Wildcat. I'm taking out the reference to the KKK, I think it's inappropriate. I'll send it tomorrow, ran out of energy today - oh, if only I believed I had more energy!
Never Give Up
Collecting improvements, until there's a cure.
- Messages
- 971
Solve ME/CFS has written about it and their efforts http://solvecfs.org/disparaged-speaker-to-present-at-nih-next-week/
As has Cort http://www.healthrising.org/forums/...er-to-speak-on-chronic-fatigue-syndrome.5052/
As has Cort http://www.healthrising.org/forums/...er-to-speak-on-chronic-fatigue-syndrome.5052/
JaimeS
Senior Member
- Messages
- 3,408
- Location
- Silicon Valley, CA
#MEAction's first thing tomorrow
Never Give Up
Collecting improvements, until there's a cure.
- Messages
- 971
Food for thought/possible inspiration for your article: @alex3619 's signature line beautifully captures the fallacy of the psychosomatic belief system:
JaimeS
Senior Member
- Messages
- 3,408
- Location
- Silicon Valley, CA
I've always loved @alex3619 's signature, esp the first part:
"If we have a psychosomatic illness because a physical illness cannot be objectively shown, how is a psychosomatic illness any more valid since it cannot be objectively shown?"
Is already written, and ready to go out tomorrow morning... what the hey, I'll post it now, and FB it tomorrow morning. If you guys would like to read it, you'll be able to access it nowish.
FYI, initial title was Shorter to present view that IOM is "wacky" and ME is not a disease before I regained my senses.
Shorter invited to NIH to share perspective of disease denialism
...my original letter to V.W. included a lot more quotes, but it also would have included wild flailing if it had been in person, and possibly crazy-eyes. This version, which was written by one of our hard-working authors and tweaked by me and others, is probably, er, more coherent.
-J
"If we have a psychosomatic illness because a physical illness cannot be objectively shown, how is a psychosomatic illness any more valid since it cannot be objectively shown?"
Is already written, and ready to go out tomorrow morning... what the hey, I'll post it now, and FB it tomorrow morning. If you guys would like to read it, you'll be able to access it nowish.
FYI, initial title was Shorter to present view that IOM is "wacky" and ME is not a disease before I regained my senses.
Shorter invited to NIH to share perspective of disease denialism
...my original letter to V.W. included a lot more quotes, but it also would have included wild flailing if it had been in person, and possibly crazy-eyes. This version, which was written by one of our hard-working authors and tweaked by me and others, is probably, er, more coherent.
-J
"Page not found" for me.
Snow Leopard
Hibernating
- Messages
- 5,902
- Location
- South Australia
Shorter is also a misogynistic creep, who has harassed women on Twitter among other things...
http://beverlyakerman.blogspot.com/2012/03/rebutting-sorry-edward-shorters-piece.html
I mean you know, what would you expect from a guy who wrote the book "A History of Women's bodies".
https://www.jstor.org/stable/1878648
Also, this doozy of mansplaining:
On Writing the History of Rape by Edward Shorter
http://www.journals.uchicago.edu/doi/abs/10.1086/493478?journalCode=signs
Which was criticised back in the day (1978):
http://www.journals.uchicago.edu/doi/abs/10.1086/493559?journalCode=signs
It's clear this guy has a long history of speaking about people he knows very little about because he has failed to listen to them.
http://beverlyakerman.blogspot.com/2012/03/rebutting-sorry-edward-shorters-piece.html
I mean you know, what would you expect from a guy who wrote the book "A History of Women's bodies".
https://www.jstor.org/stable/1878648
Also, this doozy of mansplaining:
On Writing the History of Rape by Edward Shorter
http://www.journals.uchicago.edu/doi/abs/10.1086/493478?journalCode=signs
Which was criticised back in the day (1978):
http://www.journals.uchicago.edu/doi/abs/10.1086/493559?journalCode=signs
It's clear this guy has a long history of speaking about people he knows very little about because he has failed to listen to them.
JaimeS
Senior Member
- Messages
- 3,408
- Location
- Silicon Valley, CA
@Snow Leopard got a full text for 'On the History of Rape'? Or 'A History of Women's Bodies'? I have a, er, friend who uses sci-hub and can't find full texts anyplace. Apparently no one thought they were important enough to reference.
Snow Leopard
Hibernating
- Messages
- 5,902
- Location
- South Australia
The latter is a print book, and hopefully out of print. Some of the book reviews are accessible though.
But for the journal article, it usually works better if you search for the DOI.
DOI: 10.1086/493478
Just be warned about page 481 where he blames Feminism for the increase in the statistics. :thumbdown:
Last edited:
JaimeS
Senior Member
- Messages
- 3,408
- Location
- Silicon Valley, CA
*horrified laughter*