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

https://twitter.com/user/status/1105897763294887937

 

Maybe they are trying to find some science in it.

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.

 

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.

 

well...I'm crowdfunding in April, when Berkeley's platform is open. So maybe it will be helpful.

 

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.

 

https://www.youtube.com/watch?v=BZwuTo7zKM8

"When danger reared its ugly head/he bravely turned his tail and fled..."

 

Prof Crawley does not say this in research papers but she does say it is a 'biological' condition in press interviews:

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.]

 

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.

 

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.

 

I've been using the hashtag #sharegoodscience and even #CFS because that's how they're tagging their article. If people want to click on that hashtag I want them to get some good things, too.

 

There was no quote from Racaniello's interview.

Is there another article in the pipeline or has Kelland just dismissed whatever did not fit her narrative?

Wasn't there also supposed to be a video?

 

She somehow didn't bother to include one and then said my 15,000-word piece was posted on the site of a Berkeley colleague. So, you know, she got that obvious fact wrong.

 

It's an amazing amount of spin collected in just one single article...! It's like it should win a prize of some sort?

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.

 

Ah, clever I'm not good at twitter, so wouldn't have thought of that.

 

Yes. Unhelpful beliefs indeed.

 

Well that didn't last long then did it!

 

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".

 

I would guess he might be treating comorbid psychological problems. Hopefully even he would not seek to attenuate or cure cancer itself with CBT and GET?

 

These kinds of journalistic displays are always timed judiciously. In the past Wessely has cried foul to the press around the same day when the MEICC published. This time around, there is an international conference in Australia. It always happens when they feel threatened.