Edward Shorter to give talk on CFS at NIH

[worldbackwards]

I think the response is particularly what it is because Shorter is not just objectionable, but a complete loon in so many fields. He's bouncing off the walls. What would provoke anger if it was someone else provokes complete incredulity and fury given that it's him.

 

[JaimeS]

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.

Or maybe we're crashed afterwards. Or maybe some of the info is embargoed and we'd rather wait until we can tell the whole story. Or maybe we have other deadlines that are more pressing

FWIW, you had me up until that leap of logic. We too often forget that these organizations are made up of many people, all of whom may have very different points of view.

As far as "why so angry b/c Shorter" just read something, anything that he's written over the course of his entire career. I just read that treatise on rape and it's full of misogyny and wild speculation dressed up as facts. But everyone else has already said why it's so infuriating and disappointing. Inviting Shorter is emblematic of a much larger problem.

-J

 

[TiredSam]

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

I don't have access to your twitter feed. Define "branded" - was it the occasional nutter or a public tar and feathering on behalf of the "ME community"?

 

[Kati]

Canadians are concerned too. This man has worked at the faculty of medicine of University of toronto for the longest time teaching medical student. Is it a coincidence that there is no health care for patients with ME in Ontario and that the province refuse to fund any kind of programs there. It makes me wonder. I am very curious to know who invited him at NIH or whether he invited himself.

 

[viggster]

Or maybe we're crashed afterwards. Or maybe some of the info is embargoed and we'd rather wait until we can tell the whole story. Or maybe we have other deadlines that are more pressing

FWIW, you had me up until that leap of logic. We too often forget that these organizations are made up of many people, all of whom may have very different points of view.

That's fair. My point is that the community is getting an unbalanced view. The positive developments are being glossed over, ignored, or not made public while the negative moves are greeted with huge outbursts.

 

[mfairma]

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

If that sentiment was directed at me, I don't use Twitter and wouldn't make such negative attacks.

I think there are good people at HHS and that good things are happening, but I think the people in charge are managing us as they always have done. Maybe the form of that management helps us more now than it did in the past, but a holistic assessment of their engagement doesn't read as proportional. It just doesn't. You can cherry pick good things, but the only way you can make a glowingly positive assessment is by accepting extreme mismanagement and scarcity as the norm.

 

[dreampop]

Completely agree that the response is proportionate. And I'm not the echo chamber type. But their is no bargaining with discrimination and abuse, which is what shorter is. This isn't about some psych coming in to give his argument, it's shorter. Now the nih intentions may not be awful- but in the absence of transparency you have to challenge them for an explanation.

It's a false equivalence to say the nih has done good things so they can do bad things. It is not our job to act as apologist for the national institutes of health. It is their job to act in a non discriminatory manner. Who the heck would this "turn off"? This is not an attack on research but a highly abusive liar speaking.

This is similar to the logic by Nath that negative emails would turn off researchers. Spotila countered that pretty effectively.

Frankly, i think this response is understated. Think about it in any other situation and any other lobby would fli and more over this. It's a line in the sand kind of thing.

 

[mfairma]

I understand where Brian is coming from that it is best not to alienate the people who actually have to work on our disease. But applying that sort of calculation to something as ridiculous as this only makes sense if there is no political will and never will be. If this will always be the norm, such obsequiousness might have some value as a strategy. But we're being asked to accept that they are running headlong to help us, while also being effectively told that there is so little political will that we are harming ourselves if we criticize or raise our voices. Those two requests don't stand together.

 

[dreampop]

The fact that it was done in secret and the response from Kroshowetz (sry phone) make it so much worse.

 

[Valentijn]

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

Do we have to commit to our view of the NIH being entirely positive or entirely negative? Overall, I'm happy that they're making progress. But I think they should be criticized when it is warranted.

And any involvement with Shorter is pretty shocking and disgusting. Even if they don't actually listen to him, it props up his reputation, and encourages him to engage in even more hate-speech directed at patients.

 

[dreampop]

Although we can imagine a scenario where shorter was invited to provide a joke of the psych perspective so they can say to the medical community they considered all perspectives, I find the likelihood of this to be quite low considering they already can say try reviewed the literature.

 

[Denise]

You can cherry pick good things, but the only way you can make a glowingly positive assessment is by accepting extreme mismanagement and scarcity as the norm.

I agree.

NIH and all HHS agencies can and should do better by us. There are some things they have done well, but overall we get shortchanged in the way we are viewed and treated. We deserve to be respected and we deserve to be treated well.

 

[Kati]

How would people react if Wessely was invited to speak to the ME/cfs working group? Peter White? Esther Crawley?

Shorter belongs to that same select group of people who want to delay research, want to brand us as crazy, mentally ill, and people who do not deserve to receive disability insurance benefits.

I do not think the patients' reaction is over the board, as we are forging a working and trusting relationship with the NIH.

What is out bottom line?

 

[mfairma]

Although we can imagine a scenario where shorter was invited to provide a joke of the psych perspective so they can say to the medical community they considered all perspectives, I find the likelihood of this to be quite low considering they already can say try reviewed the literature.

Ha!!! You've made my day! Wouldn't that be great. Maybe this is all just an elaborate ruse. Maybe they'll invite him in, surrounded by scientists in some amphitheatre, and then laugh at him during his talk and belittle him during question time. That would be some pleasing retribution. If they do that, and post video on YouTube, I'll take back my judgments.

Edit: I spelled judgments wrong. Don't judge me.

 

[daisybell]

Doesn't it reflect on the behavior we've been exposed to over the years, that we are seriously debating whether or not we should object to Shorter being invited? Yes, we should be publicly supporting good research, but that's the least we are entitled to in my opinion. To think that we shouldn't criticize something that's wholly inappropriate just because other stuff is appropriate is a reflection on the narrative of us as extremists and not ok.

 

[alex3619]

That's fair. My point is that the community is getting an unbalanced view. The positive developments are being glossed over, ignored, or not made public while the negative moves are greeted with huge outbursts.

The antidote for such issues is good public relations programs.

Like it or not, but decades of poor choices by governments and medical authorities everywhere have left ME and CFS as highly political subjects.

I would like to add one of the reasons the negatives outweigh the positives in patient concerns is that the negatives are easy to spot, we have decades of experience, but the positives are very hard to see, particularly without adequate information.

This means we need better and more organized communication about what is going on. However its also the case that as stakeholders we need some input into choices, and not at the eleventh hour.

 

[Neunistiva]

Just imagine the furor and media frenzy if anyone said the NIH won't research cancer if cancer patients don't behave.

 

[viggster]

Doesn't it reflect on the behavior we've been exposed to over the years, that we are seriously debating whether or not we should object to Shorter being invited? Yes, we should be publicly supporting good research, but that's the least we are entitled to in my opinion. To think that we shouldn't criticize something that's wholly inappropriate just because other stuff is appropriate is a reflection on the narrative of us as extremists and not ok.

My post was about the size and volume and tone of the response, not whether an objection was warranted. I also emailed a complaint about Shorter.

I agree Koroshetz's letter was a very weak response.

 

[Neunistiva]

My post was about the size and volume and tone of the response, not whether an objection was warranted. I also emailed a complaint about Shorter.

We complained online on blogs, forums and twitter. Some call that slacktivism and you call it going over the line. I guess it's all a matter of perspective.

@Rose49 tweeted that Dr. Ron Davis said if they didn't disinvite Shorter he will advocate for congressional investigation. I think THAT is a response of perfect proportion.

I also know that Dr. Davis has a whole career worth of experience with medical research and institutions. He has enough credit and experience for me to trust that he knows how to react properly.

 

[TiredSam]

My post was about the size and volume and tone of the response, not whether an objection was warranted. I also emailed a complaint about Shorter.

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?