Petition: Per Fink Should Not Spread Lies about ME at Columbia University!

Quote from Jennie Spotila's blog, linked upthread

http://occupyme.net/2018/10/12/protesting-per-fink/

And then this tweet by James Coyne seems appropriate to me. James wrote it in regard to his blog on Bob and the Cochrane review, but its second part explains why Fink shouldn't be allowed to speak.
https://twitter.com/user/status/1053385184232517633


Of course, those who feel that demanding Fink not be allowed to speak is not the right language presumably should feel free to engage with all of these public advocates who are in support to explain their error to them.

 

Code:

https://www.facebook.com/MEActNet/posts/2223777237904670

 

I think that this was the sort of thing that would be very difficult to do in a way that was useful. I don't know enough about the details of Fink's work to really judge things, but I expect it would have been easier to achieve a positive result if the call had been to ensure that Fink's presentations were part of a debate about the merits of his work, rather than a monologue.

I also didn't think that the petition was that well designed for persuading academics that Fink should not speak. This was always going to be a difficult thing to do, but to jump off with the point that "talk therapy and graded exercise... have been shown to harm people with ME" when the evidence for that is questionable was probably a mistake. It didn't feel like it was written to stand up to push-back.

 

circular firing squad. A group that is allied against a common enemy or opponent but whose internal disagreements and attacks end up doing more damage to each other than to their target.

 

If Fink is welcome to help harm us why are they not hosting anti vaxers, homeopaths and phrenologists?

 

Because their claims have been more thoroughly debunked than Fink's.

We're a long way from the point where the consensus on people like Fink is that they're no more respectable than homeopaths. To make progress most effectively we need to recognise where we are at the moment. To me, it seems that there are problems with Fink's work and claims, but we need to go into the details of those problems in order to convince others. I thought it was good to have the petition pointing to Fink citing PACE as evidence supporting his approach (assuming that was right, I never checked the reference) - indicating that he was unable to distinguish between good and bad research, but to be able to argue that he was so untrustworthy and incompetent that he should not be invited to speak needs really overwhelmingly strong arguments.

Also, it wouldn't amaze me if homeopaths were being invited to speak at engagements like this.

 

https://twitter.com/user/status/1049962880966295554


edit: From J. Coyne's critique (the study was co-authored by M. Sharpe by the way):

https://www.coyneoftherealm.com/blo...py-for-whatever-ails-your-physician-about-you

The link to the trial provided in Coyne's blogpost doesn't work, but here it is: https://www.ncbi.nlm.nih.gov/pubmed/22539780

Edit 2: @Roy S spotted the co-author while I was editing...

 

from that-

"The authors claim that they switched outcomes based only on examining of baseline data from their study. However, one of the authors, Michael Sharpe is also an author on the controversial PACE trial"

 

No-one's arguing for turning a blind eye or doing nothing.

Aren't there a pattern of abnormalities in Parkinson's that can be identified via autopsy? We don't have the equivalent. Also, even the term 'psychosomatic' can be complicated, with different people using it in different ways. For some people with Parkinson's it seems that dopamine generated via placebos can have dramatic positive effects, and that can be classed as a psychosomatic response. Whenever these discussions turn to 'psychological or biological' it ends up a bit of a mess - so many of the terms people use are poorly defined, it's clear that our brains affect other parts of our bodies, etc. When the discussions end up vague and messy, people will tend to trust authority figures over activist patients imo.

 

Yes things can be found in autopsies and yes we do have measurable abnormalities. We don't even need to be dead to have measurable abnormalities.
From many immune abnormalities to exercise tests to high specificity questionnaires to tease out ME form people with other diseases (there was a webinar a month or so ago, i forget the name of the doctor but there was a thread about it).
There are many more measurable facets from inhibition in pyruvate dehydrogenase to auto immune findings in a subset and even successes treating them in research settings and not with CBT.

If our goal is to muddy the waters so anyone can tell lies about us, get believed and harm us then why are we bothering?

 

Although I have retired, I should like to point out for the sake of accuracy that where Coyne has quoted:

See for instance the work of Allen Frances M.D., who had been the chair of the American Psychiatric Association ‘s Diagnostic and Statistical Manual (DSM-IV) Task Force. He became a harsh critic of its shortcomings and the failures of APA to correct coverage of functional somatic syndromes in the next DSM.

Mislabeling Medical Illness As Mental Disorder

"Unless DSM-5 changes these incredibly over inclusive criteria, it will greatly increase the rates of diagnosis of mental disorders in the medically ill – whether they have established diseases (like diabetes, coronary disease or cancer) or have unexplained medical conditions that so far have presented with somatic symptoms of unclear etiology."

And:

"The diagnosis of mental disorder will be based solely on the clinician’s subjective and fallible judgment that the patient’s life has become ‘subsumed’ with health concerns and preoccupations, or that the response to distressing somatic symptoms is ‘excessive’ or ‘disproportionate,’ or that the coping strategies to deal with the symptom are ‘maladaptive’.

And:

"These are inherently unreliable and untrustworthy judgments that will open the floodgates to the overdiagnosis of mental disorder and promote the missed diagnosis of medical disorder.​

He is quoting me - not Allen Frances.

Those passages are from my work being quoted by Allen Frances, in Frances blog (a series of three that I had contributed to in December 2012 and January 2013).

Coyne has repeatedly refused to correct his missattribution despite having been asked to do so by me and by Allen Frances, at least five times.

So if anyone is requoting those passages, then please correctly attribute.

Suzy

 

#MEAction's response to the statement from Aarhus University Hospital
Join the fight against stigma and pseudoscience in New York

When people sent letters of protest, they were issued a boilerplate response that stated that ME was not the focus of Fink’s talks, and that no presentation was specifically about ME.

Columbia’s Center for Infection and Immunity (CII) released an initial, generalized statement discussing the embodied nature of myalgic encephalomyelitis. But then the next day, an article was released by the Aarhus University hospital, implying that Columbia was working shoulder-to-shoulder with Fink:

But our research can not stand alone. For instance, researchers at Columbia University are in the forefront of examining if any biomarkers can be found that could be helpful in making more accurate diagnoses and give us a better understanding of the mechanisms triggering the functional disorders.

 

This was my initial concern. However there are lots of academics, including distinguished scientists, who are publicly supporting our position. There is potential here to turn things around ... only potential, but I think we need to grasp it. They can indeed use our words against us. We can also use their words against them. At some point, maybe a number of critical points, we need to make a stand. Given the high profile of this position, and many ME experts supporting us, including at Columbia (even if that support is tangential) we have an opportunity here. How we use that is important.

We need to try to keep the focus on the science and the academics, scientists and doctors who are saying what we are saying. We need to deemphasise that this is about psychiatry. This is also not about free speech at all. Its not about suppressing research. Its about highlighting extremely bad research, and protesting bad research being presented as good research. Its about highlighting what has been done to patients, some of whom we know about but the vast majority are still the silent minority.

The scientific debate, the social debate, the political debate, and the economic debate, are all different aspects of these issues and have different rules.

I am still concerned about any use of the word "lies" and similar words. I think we need to present the case that is still valid even if the people making the psychogenic psychobabble claims truly believe what they are saying. The facts are enough to do that, we do not need to make judgements about individuals. We can and should make critical analyses of their claims, however. THAT is also part of free speech, and more importantly about open scientific debate. Some are trying to suppress our scientifically valid arguments, and misrepresenting the case about why we are doing this.

We should also keep a close eye on Cochrane and the first paper retraction, while highlighting the NIH and CDC and other medical organisations no longer recommend CBT/GET. The wider debate against psychogenic babble will continue long after we win that particular issue.

I don't think we can win without there being multiple science-related clashes. This psychobabble is entrenched. I am also not convinced we will win the entire debate, at least in the medium term, but the days of PACE and CBT/GET are probably numbered, and that limited battle is winnable.

 

I would like to suggest to the organizers and attendees of the conference and to P. Fink's colleagues at Aarhus that they should read Anil van der Zee's blogpost
The “X” factors of ME'

http://anilvanderzee.com/the-x-factors-of-me/

@JaimeS

 

Livestream from the protest:

 

https://twitter.com/user/status/1053649717979156480

 

I wish I could have been there.