Nature: A reboot for chronic fatigue syndrome research

I cannot see any misrepresentation in the article -just an account of what has happened. David Tuller did write a blog. The CDC has changed its guidelines and NICE are reviewing. Letters have been written to journals. The article expresses no opinion on the quality of PACE. Nothing is misrepresented. Is it that Dr Sharpe does not like real history? Is he disappointed that there has been no news blackout on peer debate?

 

[my bold]

Again reaffirming he believes it's just down to hard work and determination for PwME.

 

Based on his behavior during the PACE debacle, I would've thought he'd be one of the first to appreciate any actual misrepresentations But perhaps he's simply confused when it comes to differentiating between reality and spin.

 

And of course as usual, no substance, just candy floss.

 

https://twitter.com/user/status/950849463123263488

 

Oh how the tides are turning. People that have wronged us so much are now on the defensive. Great sight to behold. Keep up the pressure!

 

I'm not on twitter; Has someone has pulled the drawbridge up?

 

What would be the ethical (and maybe other) considerations of administering a 'placebo' to controls that exhibits similar symptomatic side effects? I appreciate that cancer treatments can have risks attached, and it would be wrong to expose controls to those risks. But is it possible to mask who is getting what if all trial participants agreed to accept they may be administered placebos that make them feel ill?

 

A very interesting thought. I am not sure that it would ever be taken on. You would need something that gives people the same sort of nausea as cyclo. Referees would question whether maybe the patients could tell the difference.

Probably the more plausible option is to do a dose response study. It is unlikely that side effects would track exactly with efficacy. But it would be far from simple.

 

I'm not aware that this has been established. I've had several courses of IVIG with no impact whatsoever on my ME.

 

So with a "healthy" dose of denial they think that making patients worse is a good thing because it might help them

 

Well....you could either retire or go off and work in some entirely unrelated fields.

 

Possibly ones full of cabbages, or in siberia.

 

The Cochrane mental health group which has laid claim to ME/CFS reviews is one which was started by Simon Wessely, probably for that express purpose. It was founded as a conflict of interest, and I very much doubt that it has since cleansed itself of that. They should not be reviewing ME/CFS, full stop.

 

It was suggested that I write a response to the PACE authors' response. But their response is so trivial and peevish I see no point. They might note that CDC did not change its recommendation because the patients' illness was 'dismissed' by behavioural therapy but because the evidence is either unusable or actually points to no benefit. Cochrane asked me to look at the GET studies and I would regard them as equally unhelpful. Time to move on.

 

To you its these things but to professionals who know little about ME/CFS except what they see published it could easily mean more.

 

I doubt it. Sharpe and Chalder are just saying 'Not fair you meanies. I am going to tell my daddy on you!' without raising a hint of a rational argument.