Special Report - Online activists are silencing us, scientists say Reuters March 2019

[Marky]

I dont care about the article too much, but it infuriates me that while patients are suffering without a voice or treatment around the world, Sharpe has the audacity to pose in the fucking park as a victim for "abuse" when that "abuse" is thousands thinking his research is complete trash, and rightly so. The journalists keep missing the point of this whole saga - Patients are losing their lives, while researchers claims they get cured by talking on the frigging telephone!

 

[MSEsperanza]

It goes on and on...
keep reading here:
https://nypost.com/2019/03/13/chronic-fatigue-activists-are-trying-to-silence-us-researchers/

Some info abot the New York Post (from Wikipedia, https://en.wikipedia.org/wiki/New_York_Post )

The New York Post (sometimes abbreviated as NY Post) is a daily newspaper in New York City. The Post also operates the celebrity gossip site PageSix.com, the entertainment site Decider.com, and co-produces the television show Page Six TV.

The modern version of the paper is published in tabloid format.[...]

In 1976, Rupert Murdoch bought the Post for US$30.5 million.[3] Since 1993, the Post has been owned by News Corporation and its successor, News Corp, which had owned it previously from 1976 to 1988.

Criticism

[...]Perhaps the most serious allegation against the Post is that it is willing to contort its news coverage to suit Murdoch's business needs, in particular that the paper has avoided reporting anything that is unflattering to the government of the People's Republic of China, where Murdoch has invested heavily in satellite television.[44]

Critics say that the Post allows its editorial positions to shape its story selection and news coverage. Former Post executive editor Steven D. Cuozzo has responded that the Post "broke the elitist media stranglehold on the national agenda."

According to a survey conducted by Pace University in 2004, the Post was rated the least-credible major news outlet in New York, and the only news outlet to receive more responses calling it "not credible" than credible (44% not credible to 39% credible).[45]

The Public Enemy song "A Letter to the New York Post" from their album Apocalypse '91...The Enemy Strikes Black is a complaint about what they believed to be negative and inaccurate coverage blacks received from the paper.

The Post's coverage of the murder of Hasidic landlord Menachem Stark prompted outrage from Jewish communal leaders and public figures.[46]

 

[JaimeS]

The journalists keep missing the point

Kelland is deliberately evading the point. She's got a long history of involvement with SMC.

 

[Stewart]

"My research aims to understand the psychiatric aspects of medical illnesses and their treatments, to develop novel interventions for these that are integrated with medical care and to evaluate these in rigorous clinical trials.

My current interests are in developing integrated medical-psychiatric treatments and services especially for people with depression that is comorbid with medical conditions such as cancer and for elderly medical inpatients."

https://www.psych.ox.ac.uk/team/michael-sharpe

"TLDR: I'm going to cure cancer with CBT and exercise therapy."

 

[Marky]

Kelland is deliberately evading the point. She's got a long history of involvement with SMC.

I see. Should be deemed a conflict of interest in my opinion

 

[JaimeS]

"novel interventions" ??

You know, interventions that would suit a cloak-and-dagger novel.

 

[RuthT]

Time to share Hilda Bastian article loads?
With #MEcfs so it appears in searches.

 

[chrisb]

Looks like the NYP cannot afford @dave30th 's fee for his image rights. He must drive a hard bargain.

 

[Sly Saint]

You know, interventions that would suit a cloak-and-dagger novel.

I thought it would be more along the lines of 'Have you read.......?'

 

[JaimeS]

I see. Should be deemed a conflict of interest in my opinion

Probably. But if she weren't good friends with Wessley, she probably wouldn't have gotten "the scoop" and would never have believed his side of the story if he hadn't already won her loyalty previously. We have to be careful what we label a conflict of interest, or people who once associated with each other are eternally suspect.

[Edit: I should add that I have no insider information on how close she is to Wessley, to be perfectly clear! She has worked for and with SMC, and we know he is involved with SMC.]

 

[Peter T]

Sorry I have not read through this thread yet, so most of what follows is like to have been said already, but here are my first thoughts on reading the article:

The thing that first jumps out for me with this article is it equates the narrow closely linked group of biopsychosocial researchers that advocate behaviour and psychological intervention for ME with all science relation to this condition and all scientists working on this condition.

It fails to mention that this group internationally represent only a minority of researchers into ME and that their publications are only a small proportion of the whole literature. The journalist appears not to have contacted a single researcher investigating the biological anomalies found in people with ME despite people having suggested names to her and a considerable number of them signing the open letter to the Lancet requesting the retraction of the PACE study on the grounds of bad science and misleading reporting.

Kate Kelland has completely failed to address the real scientific concerns, including the issues that these researchers rely on a flawed methodology of subjective outcomes inherently subject to bias in unblinded studies; that when they do report objective measures they almost invariably do not confirm their conclusions and that there are many examples of problematic research practices such as outcome switching.

She mistakes the debate on the quality of the science for an argument about psychological versus biomedical causes. This group of researchers fail to clearly set out their understanding of the condition, and certainly have made no constructive attempt to understand the underlying nature of ME, rather they present what seems to be an ideological commitment to the psychological and behavioural interventions of graded exercise therapy and cognitive behaviour therapy the efficacy of which has not been proved by their methodologically flawed studies.

I was surprise at the examples given of the purported abuse, they were much less extreme than I expected, especially given the responses that might be likely from the families of children taken [into] care or from young adults committed because they refused these two therapies, suffering significant relapses when forced to participate in these therapies. This is the real scandal, the topic in need of genuine investigative journalism.

 

[Marky]

Well put Peter

 

[JaimeS]

Time to share Hilda Bastian article loads?
With #MEcfs so it appears in searches.

I have been sharing that and Julie Rehmeyer's famous one. I've also been using the hashtag #CFS, which I don't normally do, so that people who see Reuters and might click on that hashtag will see what I've posted.

 

[Stewart]

I was surprise at the examples given of the purported abuse, they were much less extreme than I expected

This struck me as well. In 2011 Sharpe told the Guardian that he'd been stalked and threatened with a knife - today the best he can manage is "Someone tweeted that they're looking forward to my public humilation". I suspect (and hope) that lots of readers of this article will be struck by just how tame the 'abuse' that's 'silencing' him actually is, and wonder why he's making such a fuss.

(Also - how can anyone credibly claim they've been 'silenced' while having their story unquestioningly propogated by a major news organisation?)

 

[Cinders66]

I think that the people interviewed have fed the researcher a malicious line and she was sold. There’s no objectivity. Everything is written in propagandist fashion. I’m astonished that this was the article that had apparently been researchered with email correspondence etc as it’s so one sided.

I notice that it says this

As well as dissuading researchers from working in the CFS/ME field, scientists fear that pressure from campaigners has also begun to show in the wording of guidance for patients and doctors from national health authorities. In the United States, the CDC has removed references to cognitive behavioral therapy and graded exercise therapy from its website.

So their line on CDC and NICE and cochrane is going to be that it was forced to review and then possibly that they caved into pressure. I’m guessing those once prominent in the CFS field are feeling the squeeze and want their side out. I’m not quite sure why two researchers who have apparently left the field seem to want to have many a say on it.

 

[ME/CFS Skeptic]

by linking and sharing it, we prove to Reuters that this sort of article can get the traffic they desire, increasing the likelihood they run another piece like it in the future.

I appreciate ME Action coming up with a thoughtful media strategy, but I don't think this is the correct one. By creating a lot of online traffic, we show to editors that the ME issue is important and that articles about this subject are heavily dicussed and shared. I dont think this will give them incentives to publish more bad articles about ME, but rather more articles about ME in general. It will make it easier for our counternarrative to be accepted by editors. And by creating consternation and writing critiques, we might attract the attention of neutral observers who want to know what all the fuss is about. That is all to our advantage, cause most people who will delve into this subject will most likely conclude that people like Wessely and Sharpe are wrong. We, the ME community, only have our online presence to make some noice and be noticed, so I don't think its a good strategy to remain silent.

Not that this is that important, or that ME Action did something wrong - quite the contrary I appreciate the effort to come up with a strategy and to coordinate things - but for future occasions, i think the best strategy is to make our online presence heard.

 

[rvallee]

"
My research aims to understand the psychiatric aspects of medical illnesses and their treatments, to develop novel interventions for these that are integrated with medical care and to evaluate these in rigorous clinical trials.

My current interests are in developing integrated medical-psychiatric treatments and services especially for people with depression that is comorbid with medical conditions such as cancer and for elderly medical inpatients."

https://www.psych.ox.ac.uk/team/michael-sharpe

"novel interventions" ??

The 1940's were, like, yesterday. Almost brand new, still in their original packaging.

 

[Robert 1973]

A Twitter user who identifies himself as a patient called Paul Watton (@thegodofpleasur) wrote: “I really am looking forward to his professional demise and his much-deserved public humiliation.” Another, Anton Mayer (@MECFSNews), likened Sharpe’s behaviour to “that of an abuser.”

I think this reflects exceedingly well on the ME community. This article appears to have been researched for months and Sharpe appears to have has spent most of that time trying to induce abusive Tweets. If these are the best/worst examples they have been able to come up with, the ME community is to be commended. I can’t think of any other subject which is discussed on Twitter which does not regularly result in far, far more more abusive comments. Just take a look at the comments beneath any posts by any politician or political commentator.

By contrast, this Reuters article reflects exceedingly poorly on the author, the publisher, and the BPS researchers. It is an excellent example of what Hilda Bastian referred to as the “massive effort” some researchers have put into “discrediting the whole community and rallying other researchers to their defense. It’s been a collective ad hominem attack.” (https://blogs.plos.org/absolutely-m...-the-me-cfs-exercise-dispute-matters-so-much/)

I have suggested to Hilda that she considers writing a blog about the ethics of such behaviour, and I will make sure she’s aware of this example.

The 'biological/psychological' thing is largely just a distraction that descends into word games imo. Whether they class ME/CFS as 'biological' or 'psychological' doesn't affect the quality of research like PACE.

Agreed. I posted a long comment which is relevant to this in the thread about Diane O’Leary’s blog: https://www.s4me.info/threads/journal-of-medical-ethics-blog-it’s-time-to-pay-attention-to-“chronic-fatigue-syndrome”-2019-oleary.8439/page-8#post-149577

If you believe your research is helping people you do to stop because of abuse. That is just plain cowardice.

The only Knight in Christendom to have been awarded (or awarded himself) a bravery medal for (allegedly) running away?

 

[Tom Kindlon]

 

[Peter T]

Perhaps the most disappointing aspect of this article is that its publication does not coincide with an @dave30th crowd funder.