Edward Shorter to give talk on CFS at NIH

[viggster]

I don't like that Shorter was invited, I'd like to know more about how it happened, but I worry this all-hands-on-deck emergency response is a little excessive for what amounts to a one-hour talk. It's not like NIH is hiring the guy to run the study. The volume and tone of the responses I'm seeing to this talk rival the tone and volume of responses to the announcement of the FITNET trial. That worries me. An objectionable one-hour talk should not prod the same response as a trial that will enroll hundreds of vulnerable children. A sense of proportion of the crime would be helpful.

 

[John Mac]

It's not like NIH is hiring the guy to run the study.

Quite right, they've already appointed a psycho babbling crackpot to do that already (Wallit)

 

[duncan]

Whose sense of proportion of the crime, @viggster ?

This is not a comparison kind of thing. Inviting Shorter is unacceptable. Period.

 

[viggster]

Quite right, they've already appointed a psycho babbling crackpot to do that already (Wallit)

Nope. A neurovirologist is in charge and has final say over manuscripts.

 

[Denise]

I don't like that Shorter was invited, I'd like to know more about how it happened, but I worry this all-hands-on-deck emergency response is a little excessive for what amounts to a one-hour talk. It's not like NIH is hiring the guy to run the study. .... An objectionable one-hour talk should not prod the same response as a trial that will enroll hundreds of vulnerable children. A sense of proportion of the crime would be helpful.

I believe a strong (hopefully unified) response IS indicated here.
That NIH sees fit to invite Shorter and give him a platform of any duration is very troubling - especially since he is speaking to NIH employees and he will help perpetuate the pyschogenic notions about this disease.
Having Shorter speak at NIH indicates that we have made no real progress within NIH as an institution despite the working group.

 

[viggster]

I believe a strong (hopefully unified) response IS indicated here.
That NIH sees fit to invite Shorter and give him a platform of any duration is very troubling - especially since he is speaking to NIH employees and he will help perpetuate the pyschogenic notions about this disease.
Having Shorter speak at NIH indicates that we have made no real progress within NIH as an institution despite the working group.

If you don't see a deep biological investigation and two imminent RFA's as progress then what would you call those developments?

 

[Denise]

If you don't see a deep biological investigation and two imminent RFA's as progress then what would you call those developments?

As I indicated – I am referring to NIH as an institution, not to the work of a few individuals (too few). And I am not referring to the clinical study about which I still have reservations and I am not referring to the RFA’s because I do not know the details about the RFA’s which we, the public, won’t know about until sometime in December.

The invitation of Shorter to speak at NIH says to me that the ingrained notions about this disease at NIH as a whole aren’t really changing.

 

[Snowdrop]

I don't like that Shorter was invited, I'd like to know more about how it happened, but I worry this all-hands-on-deck emergency response is a little excessive for what amounts to a one-hour talk. It's not like NIH is hiring the guy to run the study. The volume and tone of the responses I'm seeing to this talk rival the tone and volume of responses to the announcement of the FITNET trial. That worries me. An objectionable one-hour talk should not prod the same response as a trial that will enroll hundreds of vulnerable children. A sense of proportion of the crime would be helpful.

The man's views are so unbalanced that I thought after hearing about real science research he'd just come off sounding like a loon.

ETA: I too would like to know the origin of the invite. Shorter will come and be gone but the invitee?

 

[TiredSam]

Love the way that the quote part of my post shrinks the video and changes the title:

 

[Snowdrop]

Oh, LOL. The universe has a sense of humour.

 

[BurnA]

I don't like that Shorter was invited, I'd like to know more about how it happened, but I worry this all-hands-on-deck emergency response is a little excessive for what amounts to a one-hour talk. It's not like NIH is hiring the guy to run the study. The volume and tone of the responses I'm seeing to this talk rival the tone and volume of responses to the announcement of the FITNET trial. That worries me. An objectionable one-hour talk should not prod the same response as a trial that will enroll hundreds of vulnerable children. A sense of proportion of the crime would be helpful.

Its what this talk represents that is the issue.

It means the NIH have no consideration for patients.

It means they are willing to listen to science deniers.

It means they are not transparent, as shown by the way they have tried to cover it up by not explaining anything fully.


I believe the response is appropriate if patients want to be heard and taken seriously.
If anything the response to EC and Fitnet is inappropriate only because it is not strong enough, if there was more we could do it would be better.

 

[mfairma]

If you don't see a deep biological investigation and two imminent RFA's as progress then what would you call those developments?

You miss the point, Brian.

Sure, in isolation, one crack pot speaking at NIH isn't the end of the world. The point is what this invitation underscores, which is the lack of real buy-in from NIH (evidenced by other factors including their unwillingness to make funding commensurate with disease burden, their unwillingness to fight for us politically, and their willingness to give out placating responses to us and other stakeholders when it suits political needs), the broader disunity and lack of commitment among HHS, and, most crucially, our inability to prevent this kind of thing from happening and the difficulty we have in shutting it down once the invitation has been made. The last is most important because, too often when good things happen, this community forgets or fails to realize that this situation is held in place by broader systemic factors.

This is a big deal not just because he's an ass, but because it's a cutting reminder of how little has changed.

 

[viggster]

As I indicated – I am referring to NIH as an institution, not to the work of a few individuals (too few). And I am not referring to the clinical study about which I still have reservations and I am not referring to the RFA’s because I do not know the details about the RFA’s which we, the public, won’t know about until sometime in December.

The invitation of Shorter to speak at NIH says to me that the ingrained notions about this disease at NIH as a whole aren’t really changing.

How about Stevens, Komaroff Peterson, Jason being invited to the ME/CFS groups for recent talks? Do you just discount these events?

 

[Denise]

How about Stevens, Komaroff Peterson, Jason being invited to the ME/CFS groups for recent talks? Do you just discount these events?

I am glad that Stevens and Van Ness, Komaroff, Peterson and Jason have spoken to the ME/cfs Special Interest Group but those are NOT indications to me of a systemic change within NIH.

And they are to a small group (about 20 is what I have heard).

 

[mfairma]

How about Stevens, Komaroff Peterson, Jason being invited to the ME/CFS groups for recent talks? Do you just discount these events?

I don't think anyone is discounting the successes, but the successes we've had only forgive everything else if your yardstick is by where we've been, rather than where we should be. As the community has successes in advocacy and as the disease moves forward, the nature of how the government manages us will change. Some of the above examples I gave attest to the fact that we are still being managed. Full throated endorsement of our cause just doesn't look like what we're seeing. How long should we have to wait for real buy-in?

 

[viggster]

You miss the point, Brian.

Sure, in isolation, one crack pot speaking at NIH isn't the end of the world. The point is what this invitation underscores, which is the lack of real buy-in from NIH (evidenced by other factors including their unwillingness to make funding commensurate with disease burden, their unwillingness to fight for us politically, and their willingness to give out placating responses to us and other stakeholders when it suits political needs), the broader disunity and lack of commitment among HHS, and, most crucially, our inability to prevent this kind of thing from happening and the difficulty we have in shutting it down once the invitation has been made. The last is most important because, too often when good things happen, this community forgets or fails to realize that this situation is held in place by broader systemic factors.

This is a big deal not just because he's an ass, but because it's a cutting reminder of how little has changed.

There are a lot of assumptions being made here. NIH is not a monolith. Vicky W told Ron Davis yesterday she is unhappy about the Shorter talk. Progress is too slow, yes, but NIH (or billionaire philanthropists) is the only entity that can provide the amount of funding we need. Someone at NIH did something dumb, but we don't know who or why. I agree it's appropriate to complain but I wish the community could also engage in some positive reinforcement when NIH does good things. Where are the blog posts about the intramural study getting underway, the tidbit that that study costs $1-$2 million a year, why are the advocates who have talked with the NIH group in recent months and had positive impressions not talking about those meetings? Maybe it's because they're worried they'll get branded as sleeping with the enemy. Can't say I blame them.

 

[TiredSam]

I don't like that Shorter was invited, I'd like to know more about how it happened, but I worry this all-hands-on-deck emergency response is a little excessive for what amounts to a one-hour talk. It's not like NIH is hiring the guy to run the study. The volume and tone of the responses I'm seeing to this talk rival the tone and volume of responses to the announcement of the FITNET trial. That worries me. An objectionable one-hour talk should not prod the same response as a trial that will enroll hundreds of vulnerable children. A sense of proportion of the crime would be helpful.

The response is what it is. "excessive"? volume and tone, sense of proportion, blah blah. It really isn't for you or anyone else to prescribe what a correct response is. The current response is what it is, and the comments on this thread are consistent with views expressed by SMCI, Health Rising, #MEAction and others. That is the reaction, get over it instead of heading towards the vociferous patient narrative again, which I'm thoroughly sick of having waved at me, wherever it comes from.

Maybe it's because they're worried they'll get branded as sleeping with the enemy.

That sounds like ridiculous speculation. Justify it with evidence.

 

[Neunistiva]

I don't like that Shorter was invited, I'd like to know more about how it happened, but I worry this all-hands-on-deck emergency response is a little excessive for what amounts to a one-hour talk. It's not like NIH is hiring the guy to run the study.

NIH has sent us a message. A very clear message, on what they think of us and where they are going to go with our illness. Even if inviting this guy was a crazy fluke (which it wasn't), Dr. Walter Koroshetz's mail made it even clearer. They are seriously going to consider the malingering psychosomatisers theory.

Only reason why we patients might try to calm ourselves down is out of pain and fear of facing the reality of what this really means. I admit, it is a huge disappointment after they built our hopes up with their empty political talk.

Progress is too slow, yes, but NIH (or billionaire philanthropists) is the only entity that can provide the amount of funding we need. Someone at NIH did something dumb, but we don't know who or why. I agree it's appropriate to complain but I wish the community could also engage in some positive reinforcement when NIH does good things.

Positive reinforcement? We are not training a puppy, we are asking a government agency paid by U.S. patients tax dollars to do their job!

We've been threatened so many times that if we don't behave they won't research ME/CFS that we started to believe them.

Forget their words, look at their actions. We've been lying quietly and politely in our beds and after 80 years we remain the most underfunded illness in the Universe. And those that have been loud and problematic had billions thrown at their illnesses.

 

[Mary]

I don't like that Shorter was invited, I'd like to know more about how it happened, but I worry this all-hands-on-deck emergency response is a little excessive for what amounts to a one-hour talk. It's not like NIH is hiring the guy to run the study. The volume and tone of the responses I'm seeing to this talk rival the tone and volume of responses to the announcement of the FITNET trial. That worries me. An objectionable one-hour talk should not prod the same response as a trial that will enroll hundreds of vulnerable children. A sense of proportion of the crime would be helpful.

I don't think the response is excessive at all. Look at our history - ME/CFS has been denied, marginalized, trivialized, psychobabblized (I know, not a word) and so on for 30 years. Patients have literally been abused by the medical profession because of this. People have been sectioned. We have all been denied competent medical treatment, have had to fight for disability, have had to fight for everything. Most of us have ended up treating ourselves and using ourselves as guinea pigs.

No meaningful research was done for years and years and years and to pursue ME/CFS research was considered political suicide. The most current meaningful research is being privately funded because the government is still not fully committed to helping us. Patients have languished for decades because of the insanity of people like Shorter. I'd like to use a political analogy here but better not with the election so close. So for someone - anyone - connected with the NIH to invite this man, whose mode of thinking is responsible for so much needless suffering and wasted lives - and who literally has NOTHING to contribute to the understanding of ME/CFS is incomprehensible. Why was he invited??? it's not a minor matter.

Would someone who has no understanding of another serious illness (AIDS, MS, ebola etc.) be invited to present their unfounded, dangerous and delusional views to an NIH working group for that illness? I don't think so. But someone thought this was appropriate, for unknown reasons, for ME/CFS. And that's why this is so scary.

 

[viggster]

The response is what it is. "excessive"? volume and tone, sense of proportion, blah blah. It really isn't for you or anyone else to prescribe what a correct response is. The current response is what it is, and the comments on this thread are consistent with views expressed by SMCI, Health Rising, #MEAction and others. That is the reaction, get over it instead of heading towards the vociferous patient narrative again, which I'm thoroughly sick of having waved at me, wherever it comes from.



That sounds like ridiculous speculation. Justify it with evidence.

The evidence is in my twitter feed from the last year.