Edward Shorter to give talk on CFS at NIH

[Sean]

It is possible that this a major own goal by Walitt, Shorter, and their dying BPS cult. Even possible it was deliberately arranged to be so by powers more competent and subtle than those cultists, to allow the cultists to destroy themselves. Maybe that is the best way to do this, even though it is nasty in the short term.

Still prefer the talk wasn't happening though. I am very tired of being relentlessly subject to this particularly deceitful and insidious form of terrorism. It doesn't get easier, it gets harder.

We have enough serious shit to deal with, without more iatrogenic violence being dumped on us hysterical bullies like Shorter.

 

[Hope123]

Yep, I plugged Hillary's book in the Washington Post and have talked with David several times.



That's great, and I do appreciate all the hard work advocates have done over the years & decades.

What bothers me is when people decide that a one-hour talk means the very very worst. It's a dumb decision by someone (we still don't know who). It's an insult and I wish the talk wasn't happening. But we still have a very strong protocol: CCC criteria, with investigation of PEM as a secondary objective. That's still all in place. We don't know how many of the 35 or so scientists working on this study will attend the talk Wednesday. I have trouble believing that, say, an immunologist or cardiologist or neuroscientist is going to listen to Shorter's extreme views and come away convinced that he has the answer to this disorder.

I'd like to believe what you wrote in your second paragraph but we have to carefully monitor and respond to every situation. You know why that intramural protocol is strong? It's because many, many advocates reacted to it and wrote/ spoke to NIH about how to improve it. We also wrote our members of Congress. NIH did not ask for advice; people demanded changes. In the past advocates have jammed up NIH fax and phone lines to get things done. The Millions Missing protest was also not the first protest; there have been other ones in years past. The situation would be much worse if people had not reacted the way they have over time.

When you have major international medical groups that dictate medical policy like the Cochrane Collaboration listing ME/CFS under "Common Mental Disorders", researchers having their articles turned down and referred instead to psychiatry journals, and grants turned down because some holding power believe this is a psychosomatic disorder, there is still a major problem. You know who helps organizes the people who make grant decisions? The NIH staff that attends such talks which is why this talk is so important to address. Unlike other medical conditions, most universities do not teach about ME/CFS at all and if they do, it's not particularly accurate. I have 15 years of training under my belt and during none of those years was ME/CFS addressed or mentioned. So having someone like Shorter speak can be very influential.

You don't know me so I can't say "Trust me" but talk to others and you will hear about how things have gone down over the decades. I'm far from a cynical person but I will call a spade a spade. Also, I can tell you this is NOT how science and medicine works; ME/CFS is quite the deviation from the norm. The way ME/CFS is being treated is akin to discrimination based on a disease instead of sex, ethnicity, religion, etc.

Finally, read about the psychology of influence. Most people are sheep. They listen to those given authority (like Shorter by NIH) and don't question it. Even scientists, although they'll deny it. If you look at the history of science, many breakthrough discoveries faced lots of resistance and rejection, sometimes for years, because they challenged existing paradigms.

 

[Hope123]

Sorry, @Hope123, you deserved a better response than what i gave before, you had some very valid points.

The studies you list are genuinely part of the 1%. I agree. So I can see your reasoning for favouring them. I just worry about the other 99%, and with those taken into the bargain (and knowing the identities of some of the researchers involved, which does not bode well), I feel that neuroimaging is not the place to be putting our support. Just going on some recent discussions here which I took part in:

Here we discussed another goodish one (supports your argument):
http://forums.phoenixrising.me/inde...ional-connectivity-in-patients-with-cfs.47119

Here are some recent discussions of examples of the other 99%:
http://forums.phoenixrising.me/inde...oor-reward-sensitivity-in-childhood-cfs.47155
http://forums.phoenixrising.me/inde...adolescent-cfs-a-pilot-study-using-fmri.46954
http://forums.phoenixrising.me/inde...roimaging-mri-fmri-spect-and-pet-scans.44961/
http://forums.phoenixrising.me/index.php?posts/732024/
http://forums.phoenixrising.me/index.php?posts/696596/

Also, you might like to check out my neurobabble meter:
http://forums.phoenixrising.me/inde...leep-rhythm-disorder.44998/page-2#post-732401

It's late and as I said earlier, I rarely spend much time on the forums anymore.

Suffice it to say I have read many, many articles -- I told you my examples were not exhaustive and it's definitely more than 1%-- and I also read them from the perspective different from those of lay people. Not to insult anyone but there's a reason I spent 15 years studying and more years gaining experience and knowledge. I can separate wheat from chaff and just because something is published doesn't necessarily mean it is good. Sometimes the critiques on these forums are correct and right-on and other times, they can be off. For example, I know of some studies currently that some have said are psychologically-based but, if you knew the science (and by that I mean the science outside of the ME/CFS field even), you can see where the researcher might be headed and how it can inform the physiology of the disease in a different direction.

 

[Woolie]

Happy to discuss if you want to @Hope123, but I guess if you do we should probably start a new thread. We don't want to hijack this one too much (my fault, I started it).

 

[Gemini]

Who would not be most expert to tell the ME history than the patients themselves?

We also have Dr. Rosemary Underhill :

Dr. Underhill summarizes research into the role of infections in ME/CFS going back decades covering outbreaks worldwide.

She presents evidence supporting the hypothesis that ME/CFS is an infectious disease; discusses the immune system & host factors; & offers suggestions for further research--

www.medical-hypotheses.com/article/S0306-9877(15)00382-5/fulltext#s0090

Dr. Underhill trained as a physician, surgeon & obstetrician in London & personally witnessed the Royal Free outbreak.

She was on the writing committees for the "ME/CFS Primer for Clinical Practitioners" & "A Consensus Manual for the Primary Care and Management of CFS" & has presented CFSAC Testimony on this topic.

Her article is very timely & should be required reading for new ME/CFS researchers at NIH for example.

Edit: She lives in the US.

 

[Snowdrop]

The more I read here the more confused I am.

It is highly insulting to have Shorter's views of ME given a public forum but I really thought that Shorter would come off as a loon. And that he would do the most damage to his views on his own. Now. . .I am concerned.

Also, Fred Gill was mentioned and I'm pretty sure I've read about him in the context of being the Dr who helped Laura Hillenbrand improve (or at least it can be said her health improved and she's on record as seeing Dr Gill). So he was talking nonsense in 2011 and treating LH. I wish we knew more because this would seem to give him credibility.

I agree that by now we should be long past having to deal with this sort of garbage and it sucks up precious limited energy.

 

[Gemini]

Who would not be most expert to tell the ME history than the patients themselves?

We also have the 700-page book "The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome" co-edited by Dr. Byron Hyde, Canada, & Dr. Paul Levine, NIH National Cancer Institute.

It has been digitized.

It covers both an historical review of ME/CFS including 20th century history, major historic figures, and observations and contributions to the science based on the tools and techniques available at the time.

Of special interest to NINDS are chapters on Neurology and Central Nervous System Injury.

 

[Nielk]

https://twitter.com/i/web/status/796015095616798720

 

[worldbackwards]

I think it's time that we started seeing other historians.

https://www.amazon.com/Sadomasochism-Ardent-Love-Historical-Perspective-ebook/dp/B00886103O/​

Oh, he'd only enjoy it.

 

[Gemini]

It's a dumb decision by someone (we still don't know who). It's an insult and I wish the talk wasn't happening.

Agree.

I find most egregious Shorter's verbal and highly public abuse of millions of ME/CFS patients: dismissing the suffering inflicted by ME/CFS and on top of that demeaning us.

To me this abuse rises to the level of a human rights violation.

The decision to invite Shorter rewards his abusive behavior with the honor to be invited to speak at prestigious NIH, taxpayer's money to travel, the free use of public facilities for his talk, and an audience.

I hope NIH management resolves this ethical problem by disinviting him.

 

[Valentijn]

I find most egregious Snowden's verbal and highly public abuse of millions of ME/CFS patients: dismissing the suffering inflicted by ME/CFS and on top of that demeaning us.

You mean Shorter, I think, not Snowden?

 

[halcyon]

Her article is very timely & should be required reading for new ME/CFS researchers at NIH for example.

Underhill's (very valid) hypothesis is that ME is caused by persisting infection. The NIH is determined to ignore this evidence without looking themselves and has decided to follow the flawed hit and run hypothesis instead in their research project. I doubt they much want to hear from people like her or the active virology researchers in the field.

 

[Gemini]

You mean Shorter, I think, not Snowden?

Thanks! I corrected the spelling!

 

[Forbin]

You can see Edward Shorter's historical perspective on "chronic fatigue" (circa 1993) in an article beginning on page 6 of a compendium entitled "Chronic Fatigue Syndrome." https://books.google.com/books?isbn=0470514396

The book appears to be the proceedings of a symposium on Chronic Fatigue Syndrome held at the CIBA Foundation in London, 1993.

The first portion of Shorter's article is a review of the rise of the diagnosis of neurasthenia (not the later "neuromyasthenia") in the second half of the 19th century. He mentions how, after 1880, the disease was sometimes treated with early forms of surgery, apparently producing placebo effects in some. By WWI, however, instances of so-called "bed cases" of the ailment had become quite rare. Citing concerns that neurasthenia was a 19th century "wastebasket" diagnosis, Shorter concludes, "It is thus evident that great caution is indicated before assuming an even rough equivalence between neurasthenia and chronic fatigue."

The second portion of the article is largely a distillation of a brief subchapter in his 1992 book, "From Paralysis to Fatigue" entitled The Epidemic of Chronic Fatigue (p. 307-314). It goes over some 20th century forerunners of the chronic fatigue syndrome.

In both the book and article, Shorter argues that the epidemic of "chronic fatigue" had its origins in four different diagnoses: neuromyasthenia (Los Angeles, 1934), Epstein-Barr Virus (following its link to mononucleosis in 1968), myalgic encephalomyelitis (Royal Free Hospital, 1955) and fibromyalgia (first called "fibrositis" in 1904).

In "From Paralysis to Fatigue," he says:

"These various diagnoses then were appropriated by individuals with psychosomatic illness who wished to confer the imputed organicity of the diagnosis on their own condition. These organic diagnoses represented templates on which patients suffering from a wide variety of nonspecific symptoms could model their complaints as they brought them to the doctor."

Edward Shorter, From Paralysis to Fatigue (New York:The Free Press, 1992), p. 307

However in his symposium article of the following year (which may have been given as a speech before an audience of both the organic and psychosomatic camps) he was seemingly more circumspect:

"In sum, it is not the role of a historian to determine whether the current epidemic of attributing such symptoms as pain and weariness to chronic fatigue syndrome is the result of epidemically spreading organic disease, or of a psychic epidemic."

But he then quotes others who warn that there is "a market for somatic labels" among "stressed out or somaticizing patients," and that "the essence of somatization is that its victims take their symptoms, psychogenic in nature, to be evidence or organic disease."

He ends by cautioning physicians not let their empathy lead them into a blind alley.

Of course, his views may have changed over time.

Despite his avowal of humility in regard to drawing scientific conclusions in 1993, apparently he was not so deferential after the late 1990's, when, according to Shorter (just five years or so after the CIBA symposium),

"...it became apparent to the patients that nobody believed they had a distinct organic disease, as real as mumps, called “CFS."
- - -
Nothing has changed since then in scientific terms. There have been no convincing new studies, no breakthrough findings of organicity, nothing.

And there never will be."

Psychology Today (psychologytoday.com) - Post published by Edward Shorter Ph.D. on Feb 19, 2015

https://web.archive.org/web/2015022...essed/201502/chronic-fatigue-syndrome-is-back

 

[worldbackwards]

Of course, his views may have changed over time.

*strokes chin*

 

[viggster]

By the way, if it's true the Shorter invitation came from the National Institute for Nursing Research, that would go a long way toward explaining the weak response from Koroshetz. The NIH is made up of about two dozen institutes that are like nations unto themselves. If the biggest of them, the National Cancer Institute, is represented by the US, then we could say the National Institute of Neurological Disorders and Stroke is like Germany. Koroshetz, as head of NINDS, trying to cover for the behavior of someone at the small nursing institute would be like the premier of Germany trying to cover for the behavior of a mere citizen of, say, Luxembourg. No wonder if reads a little funny.

 

[Nielk]

By the way, if it's true the Shorter invitation came from the National Institute for Nursing Research, that would go a long way toward explaining the weak response from Koroshetz. The NIH is made up of about two dozen institutes that are like nations unto themselves. If the biggest of them, the National Cancer Institute, is represented by the US, then we could say the National Institute of Neurological Disorders and stroke is like Germany. Koroshetz, as head of NINDS, trying to cover for the behavior of someone at the small nursing institute would be like the premier of Germany trying to cover for the behavior of a mere citizen of, say, Luxembourg. No wonder if reads a little funny.

Firstly, Koroshetz' response was not weak - it was in agreement and promoting the choice of Shorter to lecture NIH investigators about the history of ME/CFS.

Secondly, your explanation excusing this is very alarming. Does this mean that Kiroshetz has no backbone and will go along with everything the Nursing Institute does? Both Walitt and Salinger who believe ME/CFS is somatoform are from the nursing institute!

 

[Cheshire]

Action for ME's statement:

Bringing together M.E. advocates and charity representatives from six countries, the ME/CFS International Alliance has written jointly to the National Institutes of Health, protesting its decision to host a lecture by Dr Edward Shorter on the history of M.E.

Writing in the journal Psychology Today last year, Dr Shorter said that many people with M.E. have “a kind of delusional somatisation, the unshakeable belief that something is wrong with their bodies rather than their minds.”

https://www.actionforme.org.uk/news/me/cfs-international-alliance-protests-shorter-lecture/

Can't prevent me from thinking Shorter's mysogenic views will now be more difficult than ever to fight.

 

[A.B.]

By the way, if it's true the Shorter invitation came from the National Institute for Nursing Research, that would go a long way toward explaining the weak response from Koroshetz.

https://www.nih.gov/about-nih/what-we-do/nih-almanac/national-institute-nursing-research-ninr

NINR’s scientific programs encompass topics such as:

• Exploring the mechanisms underlying symptoms of illness and developing personalized treatments that address these mechanisms through symptom science research;
• Enhancing wellness by understanding the physical, behavioral, and environmental causes of illness and developing culturally tailored interventions to prevent illness and promote health

Seems like this institute may be susceptible to psychobabble since they must be dealing with challenging chronic conditions and symptoms. Cognitive-behavioural explanations are very convenient if the illusion of knowledge and competence has to be created and maintained.

 

[dyfalbarhau]

https://www.nih.gov/about-nih/what-we-do/nih-almanac/national-institute-nursing-research-ninr


Seems like this institute may be susceptible to psychobabble since they must be dealing with challenging chronic conditions and symptoms. Cognitive-behavioural explanations are very convenient if the illusion of knowledge and competence has to be created and maintained.

I don't necessarily disagree, but isn't for example smoking a behavioural cause (simplified) of lung cancer? To go a bit further, a "culturally tailored intervention" for alcohol would be necessary in countries with a strong social alcohol culture, even though we already have tons and tons of science to say 'stop it or you'll die'. You still have to approach the situation in the right way, which requires culturally tailored interventions. Or for example in China, where everyone smokes cigarettes and it can be a major social faux-pas to refuse a cigarette no matter your reason. On the face of it the statement they made isn't really bad, it's just that in relation to ME/CFS patients have been burned by "behaviour" and "cultural reasons" so it sticks out as egregiously wrong.

I work in a cancer research lab when I am not too ill and we talk all the time about behavioural risk factors and interventions that can be used to either promote general health or to reduce the risk of certain cancers.

But yeah I think in ME/CFS the ship has sailed with nobody on it in regards to behavioural stuff. We tried that, it didn't work, we should move on. I agree it's much worse with the inclusion of Shorter. That does ring a lot of alarm bells for me. Hopefully the strength of the science will win out.