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

Andy said:
Interestingly, nothing on the SMC website (yet) about this.
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Maybe they are trying to find some science in it.
DokaGirl said:
Has anyone in the PS group said exactly this before? If memory serves, I haven't noted ME being described as "biological" this group
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Yes, because PACE etc. is premised on pwME being deconditioned (which is biological) but having unhelpful beliefs preventing them from doing what is needed to recondition.
 
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I am amused by this bit:

Reuters contacted a dozen professors, doctors and researchers with experience of analyzing or testing potential treatments for chronic fatigue syndrome.

Note the wording. Not just testing potential treatments but analysing them. What does that mean - analyse but not test. Presumably it refers to people who have reviewed evidence provided by the testers. That could include Cochrane reviewers perhaps? But could it not also include those who have similarly provided commentary in other peer reviewed publications.

Ms Kelland was specifically advised to contact me, as someone with expertise in the field, plus the useful, and rather unusual, quality of having no vested interest in any particular approach.

I had 'analysed potential treatments' in a paper in J Health Psychology.
I had analysed the analysis in a Cochrane review as a referee.
I was the only UK scientist to be recently asked to take part in an advisory board for the MRC on strategy in the context of inviting ME research proposals.
More generally I had been asked to advise, from an independent standpoint, in various ways, NIH, MRC, Wellcome, three ME charities, Cochrane, the UKME Biobank, etc. about the quality of ME research.

But it seems an independent view on research was not part of the agenda.
 
dave30th said:
well...I'm crowdfunding in April, when Berkeley's platform is open. So maybe it will be helpful.
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:woot::woot::woot:

I was just about to leave something aside in hope for that!!

Thank you once again for the important job you're doing, @dave30th I'm sorry to see this portrayal of you. It's very different from the impression given by your writing and speaking. After having seen several lectures, read your blogposts, articles, posts here and on social media, I can only say I wish all journalists were as thorough as you.
 
DokaGirl said:
Has anyone in the PS group said exactly this before? If memory serves, I haven't noted ME being described as "biological" this group.
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Prof Crawley does not say this in research papers but she does say it is a 'biological' condition in press interviews:

"A teenager might say, 'You are just trying to change my sleep', but do you know how much biology you actually change?

"Children who come to my clinic have low cortisol [stress hormone] levels in the morning, that is why they feel so terrible; by changing their sleep, we reverse that.

"The stuff we are doing is not a pill, but it might as well be."

http://www.bbc.co.uk/news/health-37822068

Professor Crawley said: “There is plenty of evidence now to say this is a real illness. But just because this is not a psychological illness, that does not mean psychological therapy cannot help - that is true throughout medicine."

https://www.scotsman.com/news/new-chronic-fatigue-syndrome-treatment-trialled-1-4273699
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So at least Crawley seems to think that ME is a biomedical condition, but one that can be changed/cured by behavioural/psychological intervention.

I don't think there is any consensus amongst the BPS coterie as to what ME is, they vary between themselves and between different statements by the same person: it could be psychosomatic, it could be conversion symptoms, it could be an unspecified biological condition, it could be deconditioning, it could be central sensitisation, it could be a psychiatric catch-all MUS syndrome. The only thing that holds them together is a belief in GET/CBT and perhaps allocating blame either to patients or carers when their interventions fail.

[Added - Perhaps also the BPS crew are unified in believing intervention/treatment can ignore any biological factors. So there seems to be some very strange double think going on.]
 
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large donner said:
As the long awaited "hit piece", if that's what its supposed to be, this is just pathetic. It just rolls out the same old same old see through nonsense.
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I think it's a brilliant article, in that it should do us a power of good. All one has to say about these scientists trying to shore up their house of cards is "Where, amongst all those words, is there a single scientific argument? The very fact you still can do no more than cast aspersions at those who criticise you, with no science-based rebuttals at all after all this time, proves our point as well as anything we could do". In fact it is what they always do: psychological strategies* trying to bamboozle good science. *i.e. BS.
 
Barry said:
I think it's a brilliant article, in that it should do us a power of good. All one has to say about these scientists trying to shore up their house of cards is "Where, amongst all those words, is there a single scientific argument? The very fact you still can do no more than cast aspersions at those who criticise you, with no science-based rebuttals at all after all this time, proves our point as well as anything we could do". In fact it is what they always do: psychological strategies* trying to bamboozle good science. *i.e. BS.
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Yes, that is my suggestion - this article could be used as an marketing effort of S4ME, to get more people exposed to the actual critice and debate going on. Maybe not sharing the article itself, but point out this obvious hole in it:

"Come find out what those terrible patitens are saying - about their science."

Or something like that, and a link to the forum? It also shows that patients are open for dialouge and actual scientific debate, and don't respond to labels.
 
It's an amazing amount of spin collected in just one single article...! :noteworthy: It's like it should win a prize of some sort? :trophy@

I've actually gotten numb to these attempts of stiring emotions, so my reaction is maybe a bit different. I don't think this is that bad, as it may seem at first. There are enough pointers to the underlying story, the general public is also accustomed to actual online abuse and wan't be impressed by those tweets.

But more importantly - the general public is also more aware of the use of news articles to spin one side of a story, and have learnt to seek out the other side. Not all of course, but many. It's not just ME-patients that are getting online savvy. A story like this, trying to go after patients that hard, will make a lot of people curios as to what is actually going on.

We should benefit on that.
 
large donner said:
Shes not fit to write a Cochrane review then if she cant handle the scientific critique.

She admits to not being able to handle the critique. She has been given over two years to address the issues raised against her by Cochrane via Bobs dissection of her review and has failed miserably.

Meanwhile Wessely and Sharp claim to have run away into other fields, actually due to critiques from patients AND their own peers in academia which they fail to be able to address adequately .

White retired and ran way from his University when he failed to address the critiques scientifically and cost the University £250,000 trying to block data release for his dubious claims and Crawley had to make up bogus libel claims as a distraction from critiques raised against her from academics from all over the world.


So what are any of these people doing in the research fields in the first place?
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I think in essence they are running away from themselves, and from their own brand of science which I'm sure they now know in their hearts is doomed. But truth keeps getting in their way.
 
Although the article seems to encompass all ME researchers, that is, the uninitiated reader may think this is the case, the article is only talking about some PS researchers. The article sounds like all researchers are concerned, and the majority of them have stopped their research.

Hmmm.....how about all the biomedical researchers who by definition don't support the unfounded BPS model of ME: the Open Medicine Foundation, Jarred Younger's group, Nancy Klimas' group, Ian Lipkin's group, Maureen Hanson's group, Alain Moureau's group, Don Stain's group etc., etc., etc.!

We don't hear that biomedical ME researchers are being "vexated".
 
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