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

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

 

Indeed.

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

 

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

 

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.

 

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.

 

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.

 

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.

 

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.

 

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?

 

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.

 

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?

 

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

 

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.

 

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.

 

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.

 

@Paul Watton

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

 

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.

 

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.