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

If that means a decline in the number of CBT/GET type of treatment trials, that decline is welcome.

Sadly there is little so far to suggest any drug treatments are available to tackle the underlying disease, so it's not surprising if there aren't many drug treatment trials registered yet.
 
Andy said:
I didn't read the original article but this version seems very short. And comments are accepted, subject to moderation. Free sign up to the Times allows 2 articles a week to be viewed and comments to be left.
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Thanks - for some reason the 'Free sign up' option wasn't appearing for me, but I've found it now. Pleasing to see that - once again - a couple of early commentators have expressesed incredulity that a few comments on the internet caused him to abandon his research.
 
JohnTheJack said:
Anyone able to replicate this finding?

I have been to the site and done a search. I get over 100 studies returned (many from China), but I don't see how to limit the search terms to trials started in any one year.

https://clinicaltrials.gov/ct2/home
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I get 37 CTs 2010- 2014 incl (10 are Behavioural interventions)
and 23 CTs 2015 - to present day (4 are Behavioural interventions)
 
JohnTheJack said:
Anyone able to replicate this finding?

I have been to the site and done a search. I get over 100 studies returned (many from China), but I don't see how to limit the search terms to trials started in any one year.

https://clinicaltrials.gov/ct2/home
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Please double check this but when I fact checked this from the Kelland article I could not find any of Sharpe's or Per Fink's from the same same periods listed on the site suggesting the list isn't comprehensive. (Which Kelland probably should have realised as her interviewees work wasn't registered).
Apologies for not mentioning this sooner - I have been very brainfogged and clearly just forgot to post.

EDIT: missing 'should' in sentence
 
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Sly Saint said:
I did four advanced searches. sorry didn't save them.
criteria were clinical trials, dates from 01/01/2010 to 12/31/2014 (second search with 'behavioral' in 'Intervention').

repeated both for 01/01/2015 to 03/12/2019 (figured it might not be bang up to date so only went to four days ago)
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OK, thanks, could you please then show me on that page where to enter the dates.
 
I would be very cautious with making any complaint. Make sure you have tripple checked any claim you make so that you are certain you can prove what you are claiming is accurate. It's important that any criticisms of the reporting are cautiously made. Given what we know of the UK media it's worth being aware that there are a lot of prejudices against us which would encourage the view than any complaint is vexatious and driven by the patients own unreasonable rejection of psychosocial approaches.
 
Have upvoted the sensible replies.

George Monbiot has asked

“Why would people who are sick attack medical researchers investigating their sickness?“ and this is all he says.

I think a specific reply to that question would help us get out our msg. There seem to be a few commentators recognising that ME is a real disease but misunderstanding why pwme would not welcome Sharpe’s research.

Am too fuzzy headed to attempt a reply but perhaps someone else can?

ETA: I did reply. Later post.
 
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Binkie4 said:
Have upvoted the sensible replies.

George Monbiot has asked

“Why would people who are sick attack medical researchers investigating their sickness?“ and this is all he says.

I think a specific reply to that question would help us get out our msg. There seem to be a few commentators recognising that ME is a real disease but misunderstanding why pwme would not welcome Sharpe’s research.

Am too fuzzy headed to attempt a reply but perhaps someone else can?
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For anybody attempting a reply, make the point that we aren't attacking the researchers, we are criticising their science, which they are then taking personally.
 
ladycatlover said:
In The Times too:



simon wessely
Daily update ⋅ Trolls force Oxford expert to stop research into ME
The Times
Sir Simon Wessely, of King's College London, said that he had also stopped researching CFS treatment after “relentless internet stalking”. One tweet ...
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It's a minor point of annoyance but it's, well, annoying that the word "troll" is being used incorrectly.

An Internet troll, by definition, is someone who is just annoying people, has no personal reason to be in the conversation and only seeks to annoy. Patients advocating for medical support are the very opposite of that. A "troll" is not just someone who is rude or says things you don't like. It has a specific meaning and the journalists who repeat it show not only how biased they are but how lazy the reporting is.

Sharpe knows the people he is accusing are patients suffering from the disease he claims to be an expert in. He knows they aren't "trolls", yet has no problem with that label.

But the fact that Wessely and Sharpe are content with labeling patients begging for help and pleading for medical support and research as trolls is very revealing and quite frankly completely unprofessional. This is not the way physicians should speak of people suffering from a serious disease. The contempt they hold for us is quite clear and it's a shame on the whole medical profession that this is acceptable discourse by medical professionals.
 
Binkie4 said:
George Monbiot has asked

“Why would people who are sick attack medical researchers investigating their sickness?“ and this is all he says.
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I've had a go at responding. Here's what I said:
A sensible question. The answer is, of course, that the vast majority of people with CFS and ME don't attack researchers. Nor do they condone such attacks by a few people.

Most of what Sharpe, Wessely et al. call harassment is valid scientific criticism of their research methodology, not only by people with ME/CFS but by many scientists. Have a look at the Journal of Health Psychology special issue referred to in the article, or David Tuller's articles on the Virology blog science website.

What Sharpe et al call good science is not recognised as such by hundreds of world class scientists. Unblinded clinical trials with subjective outcome measures, outcome switching, spending a quarter of a million pounds trying, in the end unsuccessfully, to hide their data from reanalysis according to their own protocol are not the marks of good science.

People with ME are desperate for good quality science, and are themselves donating to support it. There has been a good international symposium on ME research in Melbourne this week with lots of excellent scientists doing high quality research to try to get to the bottom of the serious and baffling illness. That is welcomed by people with ME/CFS, and the researchers find patients enthusiastic and co-operative.
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After all that effort I think I'll have to spend the afternoon lying in a darkened room to recover. Who know whether it's worth it and anyone reads the comments.

Edit - looks like it's been deleted. My first comment sat there awaiting approval for a while and was then approved, this one had vanished. Oh well.
 
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