Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

This is true, for biomarkers to be meaningful, there needs to be an impressive ROC - and of course the same is true for psychological associations if there are claims they are causally related.

 

https://twitter.com/user/status/978197027061424128

I decided to reply politely like this:
https://twitter.com/user/status/978432395111227393

 

I keep forgetting how effective modesty, caution and politeness are in debate.

This has made me think that I should really just completely re-draft an e-mail I've been gradually editing to be less and less irate and self-righteous. So hard to get the right tone when dealing with these $%&#ers!

 

From the BPS perspective, the patient has adopted a maladaptive sickness role following the remission of a viral or similar temporarily disabling condition.
Based on that belief, I guess they would assume that patients have an interest in evidence that 'legitimises the sickness role'.

Of course as we know this is just their theory. Whether it actually holds up to any sort of technical or legal scrutiny is another matter.

 

To get rich on benefits, of course. And to have your mom fussing over you all the time and everyone you know heaping you with cards and flowers and hot soup and stuffed animals.

How else do we get all the reports and graphs showing sick people in general and people with ME in particular are poor, have food insecurity, and isolated?

Either that was a nonsequiter or the first paragraph was ironic.

ETA Wait, that was for the wrong question. I should quit typing now....

 

https://twitter.com/user/status/978596781725450241

I find this an odd account. Not sure it is really a patient:
https://twitter.com/Kdcfsme/with_replies

 

ROC?

 

looks like a Phil Parker LP disciple

 

Yes, there's another similar odd account here: https://twitter.com/cfs_research

Both are relatively new. This one makes me think of a certain person who has a book to sell about 'curing' yourself from CFS using mind over matter.

 

Don't we have shed loads of technology simply because, in 14.3 billion years, no one has ever got mind over matter to work as reliably as, say, a tin opener, or a shelf (if at all, ever)?

The existence of, well pretty much everything people make, proves pretty definitively that mind over matter doesn't work, at least in any meaningful/useful way. Making things is hard, people are lazy, if mind over matter worked.....

Quite apart from anything else even if it did work we would still need to understand the problem needing to be solved, which we don't.

 

1) I'm surprised that Twitter handle wasn't snapped up years ago.

2) The account statistics suggest 92 tweets have been tweeted by that account, but I can only see two. (I don't have an account.)

 

You might need to look at the other tab: "Tweets and Replies". It might be only 2 tweets are tweets not linked under another one as a reply.

 

If you click on 'tweets and replies' near the top of the page on twitter, you can see the rest (if you can stand it). They claim to have had their research published (but were not involved in the PACE trial). Eg,

https://twitter.com/user/status/977274783921418240

 

@Keela Too @Art Vandelay

Very weird... I always have problems with Twitter on Firefox. I can see more when I use Chrome. But I still can't find a way to see all 92 tweets.

I can see this thread : https://twitter.com/user/status/977274783921418240
which contains only one post by cfs_research plus some posts by other people responding to it.

But if the only link I have is this one : https://twitter.com/cfs_research I can only see two tweets.

Bizarre! If the solution is to open a twitter account though, I'll give it a miss.

 

We are talking about him defending his reputation and a large study but a simple long tweet supposedly pointing out once and for all why all the criticisms are wrong is too much effort for him?

*edited for missed word*

 

I'm not sure what you are saying but to see all the tweets for anyone on any browser, you have to click "tweets and replies". If one clicks on "tweets", one doesn't see the replies. Nothing particularly unusual about this.

https://twitter.com/cfs_research
https://twitter.com/cfs_research/with_replies

 

If I click on your first link I only see the above 2 tweets. If I click on your second link I get asked to sign up or log in. I can't bypass that request in any way.

 

OK.