Edward Shorter to give talk on CFS at NIH

[viggster]

If you thought the size of the response was already too large, why did you add to it with another complaint? Who is it you think should be witholding their complaints to keep the size down while you send yours? And what can any one of us individually do to moderate the size, volume and tone of the collective response?

I don't know. I sent my email before I saw people on twitter and here talking about how "we're sunk" the entire NIH effort is in peril, and other hyperbole.

 

[halcyon]

Anybody giving a platform to people like Ed Shorter deserves the full wrath of the ME community, and then some. Inviting him to speak is a tacit admission that his viewpoint is valid, which we all know it is not. It's pure, open, unapologetic abuse and nothing more. The only meaningful purpose this could serve is to expose the NIH firsthand to the kinds of assholes that filled the vacuum that they created by ignoring our disease for so long. Saying that we need to vigorously stroke the NIH every time they make a small move in the right direction and ignore the blatant missteps is starting to look a lot like Stockholm syndrome to me.

 

[BurnA]

I don't know. I sent my email before I saw people on twitter and here talking about how "we're sunk" the entire NIH effort is in peril, and other hyperbole.

There's the reaction on twitter and then there is the reaction to that hyperbole.
I wouldn't pay too much attention to what happens on twitter. We have a long way to go before twitter becomes a platform where we get listened too.

And what can any one of us individually do to moderate the size, volume and tone of the collective response?

Ultimately there is nothing we can do.

I think the answer lies in the fact that we have no ( or historically had no ) organisation we can all stand behind confidently and know they will speak up for us. Hence, the community first response is always personal responses from our most vocal members.

These responses aren't all wrong - it just paints ME patients as always complaining, even though we/they may have good reason to always complain.

I think the complaining will stop when it makes sense to stop. Or when we know we have a representative organisation who will speak up on our behalf and be heard by those who need to listen.

This may just be happening now that Ron Davis seems to be listened to at least by some in NIH. Hopefully Ron Davis wont have to speak up every time, and the NIH will listen to others.

 

[viggster]

Anybody giving a platform to people like Ed Shorter deserves the full wrath of the ME community, and then some. Inviting him to speak is a tacit admission that his viewpoint is valid, which we all know it is not. It's pure, open, unapologetic abuse and nothing more. The only meaningful purpose this could serve is to expose the NIH firsthand to the kinds of assholes that filled the vacuum that they created by ignoring our disease for so long. Saying that we need to vigorously stroke the NIH every time they make a small move in the right direction and ignore the blatant missteps is starting to look a lot like Stockholm syndrome to me.

Ok, now you're just misrepresenting my words above. I did not tell anyone to do anything or not do anything. I expressed concern that, to my mind, the response from our community to this event was disproportionate. If someone throws a rock at my house, I'm not going to respond the same as if they broke in and shot the dog. Other people disagree with me. That's fine. But we don't have full information here. In the vacuum of full information, confirmation bias has a tendency to rush in. Which, given the history of this illness, is to be expected. I guess I wrote here today because I find it discouraging that some people have taken this invited talk to mean that it's all over, NIH hates us forever, the entire effort is sunk, etc etc., when, at the same time, no one (or very few) seem to have anything to say about:

- The positive interactions between 'our' researchers and advocates and the NIH team at the IACFSME meeting and elsewhere
- The invitation of several good ME researchers to present to the NIH group
- The imminent RFA's that Koroshetz said this week will be similar in size to research consortia for other illnesses (which, given a quick search, suggests $40-$50 million)
- Koroshetz apologizing for the delay in getting the RFA's out the door (a gov't leader taking responsibility...astounding).
- The NIH intramural study is underway and costs $1-$2 million a year

I guess I'm being unrealistic about things. There's a lot of built up anger looking to attach itself to things. I get it - I'm angry too.

 

[ebethc]

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
The original post disappeared rather quickly and was replaced by a somewhat toned down version: https://www.psychologytoday.com/blo...c-fatigue-in-the-context-the-history-medicine

eta - thanks to Mary Dimmock for the links

“Madame, it’s all in your head.”

Uh, don't you mean "Nasty Woman, it's all in your head" ??

 

[BurnA]

I guess I wrote here today because I find it discouraging that some people have taken this invited talk to mean that it's all over, NIH hates us forever, the entire effort is sunk, etc etc., when, at the same time, no one (or very few) seem to have anything to say about:

Brian, don't forget that that the Shorter news followed hot on the heels of the FITNET EC press overload, so the community was already a bit disappointed and angry to say the least. We probably expected ( wished) someone from NIH to speak out and rubbish FITNET, and point out how their intramural study was so much better, instead they invite Shorter in for a chat.

 

[Denise]

“Madame, it’s all in your head.”

Uh, don't you mean "Nasty Woman, it's all in your head" ??

Who are you calling "Nasty Woman"?

 

[ebethc]

Did you see the subsequent tweet by Professor Maureen Hanson:

https://twitter.com/i/web/status/794194332920193024

So maybe the NIH are inviting Edward Shorter not to hear his opinion on ME/CFS, but rather to examine the curious case of psychologists like Shorter, who, in spite of all the evidence for ME/CFS being a biological disease, doggedly refuse to face the facts. Perhaps the NIH are actually studying Shorter himself, as an example of a psychologist with the sort of pathological and illogical thought processes who have caused so much trouble in the field of ME/CFS.

I'm really starting to think that psychology is a lot of junk science... Insel's* brilliant letter to the APA after the DSM debacle:

"While DSM has been described as a “Bible” for the field, it is, at best, a dictionary, creating a set of labels and defining each. The strength of each of the editions of DSM has been “reliability” – each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity."

https://www.nimh.nih.gov/about/director/2013/transforming-diagnosis.shtml

* Insel was the Director of the NIMH; he's since left and gone to alphabet's new life sciences division.

 

[Neunistiva]

But we don't have full information here. In the vacuum of full information, confirmation bias has a tendency to rush in.

I am really curious what kind of information would you find justifies Shorter being invited to speak?

- The positive interactions between 'our' researchers and advocates and the NIH team at the IACFSME meeting and elsewhere
- The invitation of several good ME researchers to present to the NIH group
- The imminent RFA's that Koroshetz said this week will be similar in size to research consortia for other illnesses (which, given a quick search, suggests $40-$50 million)
- Koroshetz apologizing for the delay in getting the RFA's out the door (a gov't leader taking responsibility...astounding).
- The NIH intramural study is underway and costs $1-$2 million a year

You will notice all of these are promises that still haven't been fulfilled. Talk is cheap. Literally.

Also, all the positives have been praised, but that's besides the point. What you are describing is literally how abusive relationship works:

You can't complain when your partner hits you because it makes you look ungrateful for all the sacrifices they do for you. They just might stop doing any nice things at all, if all you're going to do is complain.

I guess I'm being unrealistic about things. There's a lot of built up anger looking to attach itself to things. I get it - I'm angry too.

Anger is a positive and constructive emotions if it's caused by objective reason and proportional to the offense. Anger gets people to take action. And we have a very objective reason to be angry for.

 

[viggster]

You can't complain when your partner hits you because it makes you look ungrateful for all the sacrifices they do for you. They just might stop doing any nice things at all, if all you're going to do is complain.

I didn't say any of those things.

 

[viggster]

I am really curious what kind of information would you find justifies Shorter being invited to speak?

I don't think it could be 'justified.' But I can easily think of scenarios that make it less troubling than is being widely presumed. What if Shorter knows someone at NIH, hears about the 'new direction,' the new intramural (very much *biomedical*) study, etc., and starts bugging his NIH friend. "Hey, you need to hear all sides." The NIH person caves after the nth phone call and says, "Fine, come in and give your little talk" while rolling his or her eyes. The point I was making is we don't know how this happened. At least I don't know how it happened.

 

[Large Donner]

I'm really starting to think that psychology is a lot of junk science....

I think you used to many words.

I know psychology is junk.

Once it has been established that its junk its proven not to be science.

 

[viggster]

) someone from NIH to speak out and rubbish FITNET, and point out how their intramural study was so much better, instead they invite Shorter in for a chat.

Yes, I can see that the timing was particularly bad. I think it'd be pretty unusual for a top (or middle) NIH researcher to start badmouthing other researchers in other countries. It's extremely difficult to get most of them to do that, even over beers and off-the-record. They certainly wouldn't be lining up to call reporters and badmouth the psychiatrists in England. The closest we'll probably get is when Collins said psychiatrists "don't have the skillset" to crack and treat this illness.

The NIH response to the PACE crowd was to design a study that will bury their line of thinking under a mountain of evidence. I know they have to earn our trust, and inviting Shorter was a really dumb move by somebody. Just as a thought experiment, imagine if NIH had, instead, decided to believe the PACE spin and instead of the current study, they came up with PACE II. It didn't happen. And that is absolutely huge.

 

[Nielk]

It's not just the fact that NIH invited Shorter to speak on the topic of the history of ME/CFS (he wrote a book about the history of somatoform conditions such as CFS), the much greater concern is Koroshetz' response to the outcry from our community:

I hope that the ME/CFS community can endorse this scientific enterprise as we at NIH try to direct it to the problems faced by those who suffer with ME/CFS, both here at intramural research program and at universities and medical centers across the country. We know so little about the biological causes and nature of the disease that inclusivity of scientific thought will be critical to our success. At this point sadly we don’t know where the scientific enterprise will lead us, how long it will take, or from what area of research effective treatments will come.

Koroshetz had a chance to review who Shorter is and he could have demanded the cancellation of Shorter's talk. Instead, he decided to keep the speaker and insult the patient community. He states: "we know so little about the biology..." - really? He could have attended the 4 day IACFSME conference a week ago in Fort Lauderdale and he would have been bombarded with biological evidence.

It is clear from his letter that Dr. Koroshetz is thinking that there is a chance that ME/CFS is a somatoform condition and he wants NIH investigators to be educated about this possibility.

 

[medfeb]

If someone throws a rock at my house, I'm not going to respond the same as if they broke in and shot the dog....

I find it discouraging that some people have taken this invited talk to mean that it's all over, NIH hates us forever, the entire effort is sunk, etc etc., when, at the same time, no one (or very few) seem to have anything to say about:

- The positive interactions between 'our' researchers and advocates and the NIH team at the IACFSME meeting and elsewhere
- The invitation of several good ME researchers to present to the NIH group
- The imminent RFA's that Koroshetz said this week will be similar in size to research consortia for other illnesses (which, given a quick search, suggests $40-$50 million)
- Koroshetz apologizing for the delay in getting the RFA's out the door (a gov't leader taking responsibility...astounding).
- The NIH intramural study is underway and costs $1-$2 million a year

IMO, its not hyperbole to say that the stigma and marginalization created by people like Shorter and those with similar beliefs - including those pushing the biopsychosocial theory in the UK and the Netherlands - have directly contributed to the low quality of life and high rate of suicide in this community. Its been directly responsible for the abuse from doctors that the Institute of Medicine report noted and for the harm that Tuller's recent article noted. Shorter is not just a single meeting and he is not just a rock through the window but rather gasoline thrown on a vulnerable group of very disabled patients and fueling the widespread stigma and disbelief that exists today.

The IOM report noted that the biggest problem we face in moving forward clinically is not the lack of knowledge of the medical community but rather their attitudes. And we know that academic researchers have not entered the field because of the stigma about the disease. The speed at which this field moves forward in both research and clinical care will be directly dependent on the leadership that NIH and HHS at large exerts to make it crystal clear that such attitudes, disease theories, and research approaches are no longer acceptable. In hosting Shorter, NIH is failing to do this, if failing to provide the critical leadership that only it can provide.

Regarding NIH progress... I agree that NIH has made positive steps forward and I admire and am grateful to both Vicky and Walter for their personal commitment. I remember too well what it was like before and this is a sea change. And yet, from what we have seen so far, NIH's response to date is too small and too slow to achieve anything meaningful on a timescale that matters for patients. At the rate at which this is being ramped up, it will be many years before there are approved treatments. And that is just not acceptable. We can acknowledge change but as mfairma said, we need to judge progress against the standard of what is needed, not against the standard of what we were given in the past.

 

[Seven7]

I saw in FB Davis said he would ask for a senate cometee over this. Is what we need to formally expose the BS and them position that we will not take crap laying down.

 

[Undisclosed]

Inviting Shorter to give a talk on CFS is like inviting an HIV denialist to give a talk on AIDS. It is beyond insulting.

 

[medfeb]

We probably expected ( wished) someone from NIH to speak out and rubbish FITNET, and point out how their intramural study was so much better, instead they invite Shorter in for a chat.

I think it'd be pretty unusual for a top (or middle) NIH researcher to start badmouthing other researchers in other countries. It's extremely difficult to get most of them to do that, even over beers and off-the-record

I agree with you that NIH staff are unlikely to do that.

But what NIH could do is take a stand on what definitions are acceptable and which ones are not. This is not badmouthing, its defining needed scientific rigor to do good science. P2P called for Oxford to be retired because it was impeding progress and causing harm. FITNET is using a definition that is not much better - the pediatric NICE criteria which Crawley states is 3 months of chronic fatigue plus any one of 9 symptoms and with no other cause. Seriously? What conditions is she actually studying? We have no clue but that study will end up in the same evidence base as the CCC and ME-ICC studies.

NIH could move the field forward substantially by definitively stating that hallmark criteria like PEM are required for this disease and that FITNET cohorts - and I'd also say MEGA - represent some non-specified set of conditions which include patients who do not have this disease.

 

[Esther12]

People like Wessely are vile, but I can see how others might not realise that on a brief reading of his work. With Shorter, if you've read his views on how those with CFS should be treated then you cannot respect both him and CFS patients. Whoever decided to invite him to talk on CFS should explain what it was about his research that made them think he would be a speaker worth listening to.

 

[dreampop]

People like Wessely are vile, but I can see how others might not realise that on a brief reading of his work. With Shorter, if you've read his views on how those with CFS should be treated then you cannot respect both him and CFS patients. Whoever decided to invite him to talk on CFS should explain what it was about his research that made them think he would be a speaker worth listening to.

Yeah, Esther, if this was a BPS guy, maybe you could say what Brian's getting at - they got pressured to invite a psych guy in to give his side, rolling their eyes in the mean time. But Shorter, Shorter! is not this guy. The things he was said, no typed, are unforgivable, they add nothing to the science of psychology (which at least Wessely is trying to do), they are just slander.