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

[chrisb]

Does anyone else suspect that strong editorial control may have prevented publication of the report that some might have wished for?

 

[Unable]

I hope it prompts lost of people to look into David Tuller's work.

Indeed.

I think it might. It would me, if I stumbled on this article knowing nothing, but wanting to follow a scandal.

 

[Hoopoe]

There's nothing that says defeat like a special report full of lies.

 

[Hoopoe]

Also, how can online activists silence anyone? Do they block Sharpe on Twitter?

Anyway, I think the advice by ME Action is good. Don't click on the article, don't share it. Ignore it, but do make fun of their desperate lies.

 

[Rick Sanchez]

So we were right all along.

Sharpe was intentionally trolling patients on Twitter to try and make a case for himself as a victim of online ''abuse''

 

[Snow Leopard]

So we were right all along.

Sharpe was intentionally trolling patients on Twitter to try and make a case for himself as a victim of online ''abuse''

Sigh.

 

[Paul Watton]

I guess these are the worst abuse they could find. When you compare that to real online harrassment (I don't know for other countries, but in France, many people have been on the receiving end of death and rape threats, insults...), well... these are not pleasant messages, but calling this abuse is a bit over the top.

To my knowledge. she was working on this story since last summer, and yet my tweet (quoted out of context) is apparently the best example of "abuse" she could come up with?
I didn't even address it to Sharpe, nor did I include his Twitter handle within it. Give me a break.

I also reject to her characterisation of my objection to Sharpe's work - "because they think it suggests their illness is psychological". That isn't what I said at all.
It completely ignores the carefully worded explanation (and the many well-supported, scientific reasons) I gave to her for objecting to Sharpe's work and his misrepresentation of the facts.

It seems to me like this is a case of little Mikey losing the school yard argument, so his big sister felt compelled to wade in to help him.

 

[Esther12]

A "biological condition that can be perpetuated by social and psychological factors".

Has anyone in the PS group said exactly this before? If memory serves, I haven't noted ME being described as "biological" this group.

Are there examples of biological diseases being perpetuated by social and psychological factors?

Is cancer a biological disease perpetuated by social and psychological factors? ALS? MS? Stomach ulcers? Epilepsy?

For example, I don't recall seeing the PS model labeling IBS biological, and then saying it can be perpetuated by social and psychological
factors. I've always seen it portrayed as psychological by PS practitioners.

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.

 

[chicaguapa]

Ironic how psychologists are allowed to continue peddling this narrative whilst simultaneously telling sick people it's their thought process that stops them from moving on.

 

[DokaGirl]

If ME is indeed believed to be biomedical, and it most definitely is biomedical, why have governments not even raised a little finger to help find a physical cause and cure? Why is the treatment in the UK completely focused on psychological treatments. Why has this been so in other countries?

Why would a disease viewed as biological, that effects so many be almost completely shut out of biomedical research funding? Why do pwME have to work so hard to get this disease recognized as biomedical, if practitioners already recognize it as biomedical? Why have we waited over 50 years for better treatment, respect from our governments, the medical establishment, the media, friends and family?

 

[Snow Leopard]

I also reject to her characterisation of my objection to Sharpe's work - "because they think it suggests their illness is psychological".

Yes, the 'psychological' vs 'physical' debate is a regular mischaracterisation of patients beliefs. They are trying to make out that patients are against psychological treatments because it implies that we have a psychological disorder and we're afraid of stigma or something. This is total nonsense. Patients say "this is not a psychological disorder" because we've tried psychological treatments and they just don't work. If the "evidence base" they refer to was held to the same standards as pharmacological trials, CBT and GET would not be considered evidence based. In the absence of blinding, there need to be changes on objective measures of functioning and it is a red flag when studies cannot find such, but still conclude patients are much better.

We need to stop getting hooked into THEIR pointless debate about whether CFS is biological or psychological and reaffirm it is the lack of efficacy that is the problem.

 

[Snowdrop]

I guess this is the piece we've been anticipating? The one D Tuller did a prebuttal to?

If M Sharpe feels so harassed on twitter why does he not report the tweets?

 

[SallyC]

I think an outsider reading that piece might wonder if the “activists” have a point!

The article may be slanted from the other direction, but it gives enough detail of concerns about the science, for the establishment of reasonable doubt on the therapies of CBT/GET.

Not all bad at all.

I think it reads quite well as a list of the successes of our campaigns to highlight the flaws in their research!

 

[Jonathan Edwards]

I have to admit to having my impression coloured by, er, some past context like @Esther12. But looking at this as if I was a medical colleague I think I would not only see the piece as weak and confused. I would actually wonder whether it was journalistic spoof. The picture of Sharpe at the top would be perfect for a spoof on self-important Oxford academics. And the opening paragraph makes him seem completely silly. This is not someone who discovered the AIDS virus or invented monoclonal antibodies or some other great medical achievement. He is someone whose crowning achievement was to do:

a clinical trial that found some patients with chronic fatigue syndrome can get a little better with the right talking and exercise therapies

Moreover, nobody in the medical profession is going to take seriously the suggestion that the illness 'isn't psychological, but is actually sort of psychological'.

Kelland seems to have tacked together material that she does not seem to realise does not hang together. If this really is a serious systemic disease then a bit of talking therapy is hardly likely to do much.

There is a lot of fake news and misrepresentation going on in the article that might be worth addressing some time but all in all I suspect it is more of an own goal than anything else.

One outstanding feature of it is that it has not substantive scientific content.

 

[Peter]

What a piece of extremely poor one-sided “journalism”? Is it journalism or sort of an PR-ad for MS?

Let the world take part and read. Really not worth spending much time on this.

 

[Jonathan Edwards]

And this makes Wessely look a complete twerp:

Simon Wessely, a professor of psychological medicine at King’s College London and former president of Britain’s Royal College of Psychiatrists, said he decided to stop conducting research into treatment approaches for CFS/ME several years ago because he felt the online abuse was detracting from his work with patients.

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

 

[large donner]

@Paul Watton

I have noticed you just liked my last post. How dare you as I have never even met you!!

 

[large donner]

I guess this is the piece we've been anticipating? The one D Tuller did a prebuttal to?

If M Sharpe feels so harassed on twitter why does he not report the tweets?

Yes how bizarre that as a psychiatrist he cant handle some people disagreeing with him and had to go off and work in cancer care according to himself.

 

[Sean]

It just shows that the "controversy" is entirely over politics and ideology, not science.

The most obvious thing about this article is the complete lack of any mention of, let alone serious discussion about, the actual scientific and ethical issues driving this debate.

Eight years after [Sharpe & colleagues] published results of a clinical trial that found some patients with chronic fatigue syndrome can get a little better with the right talking and exercise therapies

A little better?

That wasn't their claim in the PACE 'recovery' paper. They said 22% in both the CBT and GET arms met their definition of 'recovery' – their word, not mine.

So are they now acknowledging that this re-analysis of that paper showed the claim to be incorrect, and there are in fact no recoveries?

Not to mention that a treatment that makes me feel "a little better" than complete shit is of little use to me at all. I'd prefer you spent the money on real research, if you don't mind.

Sharpe no longer conducts research into CFS/ME treatments, focusing instead on helping severely ill cancer patients. “It’s just too toxic,” he explained. Of more than 20 leading research groups who were publishing treatment studies in high-quality journals 10 years ago, Sharpe said, only one or two continue to do so.

Nah, mate. You moved on because your shitty science and ethics were being legitimately and increasingly effectively exposed, and you couldn't take the heat.

Let's see what names come up in support of Sharpe:

Per Fink, Simon Wessely, Richard Horton, Lillebeth Larun.

Well, knock me over with a feather.

Wessely’s employers at King’s College London have taken advice on the potential risk and have instituted X-ray scans of his mail, he says. “Everything I say and do in public, and sometimes even in private, is pored over and scrutinized,” he said.

Yet you remain a very active, outspoken, powerful, feted, and public figure.

You were so concerned about specific death threats over a lecture event that you took your young teenage son along to it and let him talk to the quiet peaceful protesters unsupervised.

Doesn't sound to me like the actions of a man genuinely concerned for his and his family's safety.

Sounds like a man in love with the sound of his own voice and full of self-importance.

I note the qualifier 'potential' in that quote. Interesting.

The campaign to have evidence-backed treatments discredited...

Oh puhleese. That wouldn't pass Sophistry 101.

In April last year, Tuller secured $87,500 in online crowdfunding to “debunk” the PACE trial findings.

No, his task is to report to the wider world the debunkings done by others, in particular by patients via formal processes, including peer-review journals.

And he is doing a very good job of it. Worth every penny.

In the decade or so that [Lillebeth Larun has] been conducting research in this area, she told Reuters, she’s endured online attacks and abusive emails, and at various points had to take a break from working due to the pressure. Returning to a CFS/ME project would make her feel physically sick with anxiety.

At least you have a choice to walk away, Ms Larun. We patients don't have that luxury.

And the less said about Colin Barton the better.

 

[DokaGirl]

Putting aside the debate about whether ME is biolgical or psychological only the psychological has been focused on by governments. Wilfully neglecting the enormous biomedical apsects of this illness is a human rights issue.

@Esther12

The biological/psychological vicious circle PS theorists spin, is frustrating and obfuscating. It is word games. However, words, theories, and other factors have created the PACE trial, and the almost complete focus on ME as psychological in general.