NIH intramural research program update

[ScottTriGuy]

I wish I could unsee this

Its like being re-traumatized. (I'm not using that term flippantly)

 

[BurnA]

Its like being re-traumatized. (I'm not using that term flippantly)

How can we get rid of this guy ?

 

[duncan]

It might also be interesting to see the rationale behind how he was invited/allowed to be involved in the first place.

 

[John Mac]

How can we get rid of this guy ?

And get him to take the FMD group with him when he goes

 

[Valentijn]

More worrisome quote:

Nothing exists without your brain creating those sensations for you and the idea that that process of creation can create these things and is supposed to create things like this to inform us and to teach us and to guide our behavior pushes against the idea that we have free will and that we can do whatever we want and that we should be able to lead the lives that we have always thought we should lead–not the ones that our bodies are restricting us to.

This sounds like something from a rudimentary philosophy lecture, and has nothing whatsoever to do with biology or psychiatry.

 

[A.B.]

I worry that someone who believes that ME/CFS is already explained and psychosomatic will do a poor job as lead clinical investigator. Why bother doing a good job when he believes that nothing will be found? We need people in charge that are motivated to make progress.

 

[Aurator]

The bit below from Walitt's interview is a supreme example of psychobabble. Most psychobabble actually makes some kind of sense, but this is unintelligible.

Interviewer: "What is fibromyalgia?"
Walitt: "That’s a hard one. Time will tell. Fibromyalgia appears to be a way that people experience suffering in their body, both from the way that their bodies are interpreted and the problems of the body, as well as the problems in their lives, as well as how societies tell us how to experience things. All those come together to create a unique experience in different points in time and right now that experience is–one of those experiences is fibromyalgia."

I accept that pain research is a difficult area, but talk like this is simply giving up before you've even started.
Walitt clearly has the wrong skill set for the present study.

 

[Bob]

Brian Walitt video: Fibromyalgia doesn't fit the disease model (9 minutes)

http://www.familypracticenews.com/s...e-model/e913134880916685f3005dac5459ab88.html

"The experience of fibromyalgia is very real to the people who have it".

Walitt says that fibromyalgia patients are not actually unwell ("sick"), but they just struggle dealing with the normal trials of life.

Also, fibromyalgia patients are middle aged women, apparently, according to the sexist graphic; obviously hysterical middle aged women; presumably bored housewives in an unfulfilling relationship.

Walitt is an unreformed Freudian. This is incredibly backward looking stuff even by psychosomatic standards.

Did I hear right, did he actually advocate spiritual healing as a medical treatment at the end of the video?

Scary stuff. Why have they put this person in charge of our study? Why is he at the NIH? With those beliefs, he's not even a scientist. He's an outdated philosopher.

We've got to make it clear that the community has no confidence in the ability of Walitt to lead the NIH study.

 

[A.B.]

"The experience of fibromyalgia is very real to the people who have it".

So, in other words, it's not actually real; it just seems real to the people who have it. He also says that fibromyalgia patients are not actually unwell ("sick"), but they just struggle dealing with the normal trials of life. Also, fibromyalgia patients are middle aged women, apparently, according to the sexist graphic; obviously hysterical middle aged women; presumably bored housewives in an unfulfilling relationship.

It's unbelievable that he also says that psychosomatic explanations do not trivialize the condition, when one can hardly imagine anything more trivializing than these views.

 

[beaker]

How can we get rid of this guy ?

Start a petition ? Write to NIH and NINDS and ask for him to be removed as head of study . Along with Gill?
This is total BS.
The petition needs to state rather plainly that the evidence re: the IOM report and the more recent studies don't align w/ this persons "false belief system". He must go !!

 

[Zombie_Lurker]

Great, we have a Simon Wessely clone (Walitt) on this study. I am so glad to know that I have free will and I can simply chose not to have me/cfs and fibromyalgia and that those conditions will go away (sarcasm).

 

[ScottTriGuy]

How can we get rid of this guy

A petition with a video to promote it so it goes viral.

Perhaps the video of him can be edited in an entertaining / humorous way so that his psychobabble is exposed / mocked.

Then social media the video asking folks to sign the petition demanding his removal.

 

[BurnA]

A petition with a video to promote it so it goes viral.

Perhaps the video of him can be edited in an entertaining / humorous way so that his psychobabble is exposed / mocked.

Then social media the video asking folks to sign the petition demanding his removal.

Ok but maybe before we go viral is there a more direct way ? I think it's better to try official channels first. Petitions and social media are for getting attention, but if we have a channel to the NIH either via Lipkin or the patient advisory committee we should try that first I think.

 

[Sean]

Okay.

I first thought that having Nath as his boss, and Lipkin and Unger as senior advisers, plus the basic methodology, would keep things on course. But the more I learn about Mr Walitt's prior form, vested interest, and trouble with causal reasoning, the more concerning his senior role becomes.

He is the best leader you could come up with for this rather critical study, NIH? There wasn't anybody available who is a bit more neutral and connected to reality? Really?

 

[Bob]

Did you notice that Walitt, in the video, has created a narrative with the clear purpose to make physicians feel better about themselves. No wonder these psychosomatic theories are so popular within the medical profession. Instead of the physician accepting any responsibility for treating these difficult patients (or, to be more accurate, not being able to treat these difficult patients), they can absolve themselves of all responsibility. The patients are notoriously difficult to treat, but now they don't need treating at all, because they're not actually ill, but they're hysterical. The physician will hear this hypothesis and think "aha, its not me who is inadequate, it's the patient. The patient is hysterical and not actually ill at all. So nothing I do can ever make the hysterical patient feel better. Therefore I can feel good about myself and consider the patient inadequate, and legitimately neglect them."

 

[Bob]

Simon has started a discussion thread about a 2015 paper by Wallit in which he states that CFS is a somatoform disorder, and he hypothesizes that "chemobrain" (i.e. fatigue symptoms after chemotherapy) is a somatoform disorder, and then proposes a study to prove it, despite the previously documented biological abnormalities. His hypothesis is something to do with a psychosomatic reaction to cytokines and epigenetic changes, or something similarly ridiculous (I'm still getting to grips with it): http://forums.phoenixrising.me/inde...ausal-hypothesis-somatoform-via-biomed.43184/

 

[Bob]

Great, we have a Simon Wessely clone (Walitt) on this study.

Can I hear SW laughing... "Mwha ha ha ha ha ha, mwha ha ha ha ha."

 

[John Mac]

Can't help but notice that this study and the UK Research Collaborative study both have a Functional Movement Disorder specialist actually running the study day to day,

Mark Edwards on the UK study and Brian Walitt on the NIH study.

 

[ScottTriGuy]

Ok but maybe before we go viral is there a more direct way ? I think it's better to try official channels first. Petitions and social media are for getting attention, but if we have a channel to the NIH either via Lipkin or the patient advisory committee we should try that first I think.

I don't think its an 'either/or' situation - both approaches simultaneously would have a compounded effect on the NIH.

(I'd have more time and be more practically helpful with this advocacy if I wasn't working on a project targeting the Canadian problem.)

 

[BurnA]

I don't think its an 'either/or' situation - both approaches simultaneously would have a compounded effect on the NIH.

(I'd have more time and be more practically helpful with this advocacy if I wasn't working on a project targeting the Canadian problem.)

Well I think there has to be a strategy. Normally the first goal of a campaign is to be listened to. Then if you don't get a reasonable response you ramp the campaign up a gear.

If we go all out from the start it might be unnecessary and a wasteful use of resources.

What's the purpose of having a patient committee if we have to resort to petitions and internet campaigns from the start.

Dialogue is the only way things get resolved. Sometimes protests and petitions are needed to get the dialogue started but ultimately if you can skip them you can still achieve the same result. Of course if we are ignored then they become a useful means of demonstating our objections.