NIH intramural research program update

[Sidereal]

the expression that follows is one of a seriously disturbed individual.

No doubt about it. Extremely disturbing beyond belief.

 

[Valentijn]

coughsociopathcough

No idea if that was it, but it's the weirdest thing I've ever seen. Usually facial expressions give some sort of message. His facial expressions were a bunch of random spam.

 

[greeneagledown]

The dude is a punk. I'm surprised Lipkin would allow himself to be associated with this.

 

[TiredSam]

No doubt about it. Extremely disturbing beyond belief.

00:50
01:59
05:48
06:10 (very scary example)
07:05 (a "double" - smile/sociopath/smile/sociopath)

Those are the five most obvious occasions where he starts smiling before the sociopath in him wrests back control, I counted at least 4 other examples. Yes, I've got nothing better to do, I'm having a sofa day on account of M.E. research being at least 30 years behind where it should be.

And so when you find people with thing like fibromyalgia, you’re either going to be sick, bad, or weak–and the idea is really to find a fourth way–to realize that these atypical things are just a range of normal, that you’re not sick, bad, or weak, that you’re just dealing with the difficulties of just being a human.

Whose idea is it to find a fourth way? I'd be quite happy with the first way - I'm sick. I don't have a problem with that. Now would you mind getting out of the way and taking your ideas with you so that scientists and doctors can do what they do rather well - find a way for me not to be sick?

 

[JaimeS]

Read Jeanette's write-up and am bowled-over stunned. I know she presented it in a certain light, but if you just read what he says without reading any of her text, and even without seeing his facial expressions, you get a VERY clear picture.

He's a pretty skilled manipulator. Enough of what he says is the case to cause confusion in naive doctors who have not studied the illness. The weird "easier for everybody" that he repeats in one way or another is certainly aimed at making doctors feel relieved: you don't have to find anything for this illness; you don't have to help anyone with this illness; if you 'counsel' them and 'witness' their pain, that is enough. You even, according to him, are not responsible for helping them manage the pain on a day-to-day basis.

Convince them their pain is normal.

If you're trying to find an easier profession where you have less responsibility for people's health, perhaps become a GP and treat sniffles, and refer everyone else out. Or become a bricklayer, or an office manager, or a paper delivery boy.

I think that 'over-responding nerves' idea is really another way to do precisely what Walitt suggests: hand-wave symptomology as though our sensitive little wilting-flower bodies are merely 'over-reacting' to 'normal' stress.

Geez, man. The ladies, seriously, amirite?

They are feeling this pain for a reason, after all. It's a growing experience. The universe has a message for me.

I'm reminded of people who say that hurricanes and floods and AIDS are 'for a reason'. It literally sounds like Walitt says that God is punishing sick people; only replace 'God' with 'society' or 'the higher power' or whatever. The principle is the same.

Far be it for me to deny the mind-body connection. I just don't understand why it's given so much weight in certain illnesses, and other illnesses it's hand-waved away. Heart attacks are certainly brought on in part by stress, but I don't think I've ever heard of anyone being sent in for counseling after having one (and I know many who have had a 'cardiac event'.) Damn, I should be quiet. I might be giving the NIH some ideas.

Perhaps the answer is in Walitt's frequent references to middle-aged women. While not all people with FM are middle-aged women, that is the most common patient subset. So this entire thing may rest in the ladies, seriously, amirite? Taking up an important doctor's attention with their silly little complaints.

It's a mad world.

-J

 

[Nielk]

Here is jeannette's blog on walitt. http://thoughtsaboutme.com/2016/02/...e-perception-mecfs-as-normal-life-experience/

 

[TiredSam]

these atypical things are just a range of normal

According to Merriam-Webster, "atypical" means "not normal".

 

[Denise]

The slides from the CDC Grand Rounds presentation (16 Feb 2016) are available as a pdf. (Includes Nath's slides.)
http://www.cdc.gov/cdcgrandrounds/pdf/archives/2016/feb2016.pdf

 

[JaimeS]

According to Merriam-Webster, "atypical" means "not normal".

It's atypical but it's normal. Or else it's a fluke. Like a coincidence.

But a normal one.

-J

 

[A.B.]

This sort of contradictory, vague, suggestive language is typical for psychoabblers that want to express their beliefs without revealing them fully.

 

[duncan]

I wonder if the other psychs on that associate investigator list would have had to met with Walitt's approval.

 

[anciendaze]

these atypical things are just a range of normal

This does not reassure me because I am now in the situation where "it is perfectly normal for people your age to be dead."

However, all this criticism is non-specific. Let's examine one real, but commonly disregarded disease for which there are genetic tests, Ehlers-Danlos syndrome. Why? Because chronic pain is characteristic in that disease, even if patients look healthy, and he has made statements about fibromyalgia. I want to know if all the fibromyalgia patients he discusses were tested to rule out EDS. If not, I believe it is obvious that researchers don't want to know if they are treating people with real physiological diseases under the assumption the problem is psychosomatic.

This is only one condition you might want to investigate, there are others.

 

[Ecoclimber]

The same protocol and the same instrumentation that they will use in this research trial has already been investigated among groups of Chronic Fatigue Patients, Fibromyalgia patients and Chronic Pain patients. The video examines what they found using various research diagnostic tests including fMRI, MRI, TMS, etc.

RESULT: NO ABNORMALITIES FOUND!!

WATCH THE 2 HOUR VIDEO BELOW!
Demystifying Medicine 2013 - Pain: How It Happens and What Can Be Done?

Treatment: Yogi, CBT, GET, Talk Therapy, Meditation or just live with it. It is YOUR inability to adjust or cope to the Social/Psychological/Environmental stressors both current and in the past triggered by trauma, diseases, etc. manifested in a psychopathophysiology.

This is not the position of just Wallit but the position of the NIH at this symposium!

 

[duncan]

Hear that noise? That's the sound of spin wheels grinding together over in Bethesda.

 

[soti]

This sort of contradictory, vague, suggestive language is typical for psychoabblers that want to express their beliefs without revealing them fully.

The penny just dropped for me (also from Coyne's civil rights push), that it reminds me of this:

Atwater: You start out in 1954 by saying, "N*****r, n*****r, n*****r." By 1968 you can't say "n*****r" — that hurts you. Backfires. So you say stuff like forced busing, states' rights and all that stuff. You're getting so abstract now [that] you're talking about cutting taxes, and all these things you're talking about are totally economic things and a byproduct of them is [that] blacks get hurt worse than whites. And subconsciously maybe that is part of it. I'm not saying that. But I'm saying that if it is getting that abstract, and that coded, that we are doing away with the racial problem one way or the other. You follow me — because obviously sitting around saying, "We want to cut this," is much more abstract than even the busing thing, and a hell of a lot more abstract than "N*****r, n*****r."

https://en.wikipedia.org/wiki/Southern_strategy

The similarity not being in the specific experiences of black people and pwme, which are vastly different, but in the nasty way that bad ideas can stick around even when specific language has to go underground.

And why did "N*****r, n*****r" have to go underground? Because people objected and prevailed. We've already won the analogous battle in our case, i.e., it does seem like no one can get up anymore and say that ME is the belief that one has a disease called ME. However, as we see with the Southern Strategy, that doesn't mean that the underlying bad idea has gone away. It's just been coded, massaged, nuanced, to be more palatable. And the result can sound reasonable, if you don't know what's behind it.

(Also, given what Trump is doing bringing overtly racist language back into public discourse, it's important to always be vigilant...)

 

[TiredSam]

Anyone remember this from 3 months ago?

http://forums.phoenixrising.me/inde...nd-fences-my-call-with-him.40869/#post-657558

As an aside: I mentioned the problems in the UK, saying that psychiatrists had hijacked ME/CFS. Collins said, "They don't have the right skillset." That's a political way of saying: Uh, yeah, it's time for real scientists to study this thing.

62 likes, and oh how we all laughed at this long overdue slight to the BPS crowd. It's starting to look like it wasn't a political way of saying "it's time for real scientists to study this thing" at all, but rather a way of saying "it's time to let US psychiatrists hijack ME/CFS".

 

[duncan]

Somebody had to recruit Walitt, or suggest him, or approve him. I don't imagine he just hijacked the position of lead investigator.

This is most likely a top down problem; regardless, I don't think for a second it is limited to Walitt.

 

[CFS_for_19_years]

And why did "N*****r, n*****r" have to go underground? Because people objected and prevailed. We've already won the analogous battle in our case, i.e., it does seem like no one can get up anymore and say that ME is the belief that one has a disease called ME. However, as we see with the Southern Strategy, that doesn't mean that the underlying bad idea has gone away. It's just been coded, massaged, nuanced, to be more palatable. And the result can sound reasonable, if you don't know what's behind it.

I don't like using the N word, but I've always felt that we were the N*****s of the patient population. To be seen, not heard, to always be in deference.

ETA: I watched his video. What an odd fellow. If he were sitting across from me on a speed-date, I'd be tilting my head from side to side, and getting up quickly to move on. His facial expressions reminded me of people I met in college who were best summed up as pseudo-intellectuals, totally wrapped up in themselves and their theories, not fully engaging with others. Those weird fake smiles where he appears to be pursing his lips are familiar to me. It's a form of affectation, almost a fetishistic way of presenting one's self.

af·fec·ta·tion
noun: affectation; plural noun: affectations
behavior, speech, or writing that is artificial and designed to impress.
"the affectation of a man who measures every word for effect"
synonyms: pretension, pretentiousness, affectedness, artificiality, posturing, posing;
airs (and graces)
"the affectations of a prima donna"
a studied display of real or pretended feeling.
"an affectation of calm"
synonyms: facade, front, show, appearance, pretense, simulation, posture, pose
"an affectation of calm"

 

[Ecoclimber]

Clin Exp Rheumatol. 2015 Jan-Feb; 33(1 0 88): S86–S92.
Published online 2015 Mar 18.
PMCID: PMC4750383
NIHMSID: NIHMS757697
Self-reported childhood maltreatment, lifelong traumatic events and mental disorders in fibromyalgia syndrome: a comparison of US and German outpatients
Winfried Häuser, MD,1,2 Eva-Maria Hoffmann,2 Frederick Wolfe, MD,3 Angus B. Worthing, MD,4 Neil Stahl, MD,5 Russell Rothenberg, MD,6 and Brian Walitt, MD7,8

Conclusion

The study demonstrated the transcultural robustness of findings on the association of adult FMS with self-reports of childhood maltreatment and lifelong traumatic experiences. These associations are mainly explained by current psychological distress.

The psychopathophysiology is ingrain, it seems within at least this department of the NIH. I shouldn't tell you about the NIH symposium on Lyme Disease and Chronic Lyme

I would recommend contacting each of the ME/CFS researchers who are going to contribute patients to this research trial and alert them to these facts and request that do not send any of their patients for this trial. I don't believe petitions are going to do it.

 

[Comet]

It seems to me that the NIH probably wouldn't have the mindset of "We have to find the biological cause of ME/CFS." Rather, that they are (finally) thinking that they have to find a cause and treatment. Unfortunately, they likely look at Wallit as an expert in the field. Hopefully, we the patients are educating them as to why he is not the best choice for this project.