Nature: A reboot for chronic fatigue syndrome research

[Jonathan Edwards]

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?

 

[Barry]

Nice to see coverage of new research, but very disappointing to see Nature misrepresenting research on rehabilitative studies

[my bold]

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

 

[Valentijn]

He's not angry, he's just very disappointed.

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.

 

[Barry]

Looking for responses to Nathalie Wright's piece in the Independent, I saw this from Sharpe on the Nature piece:



He's not angry, he's just very disappointed.

Makes me like this piece even more.

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

 

[Valentijn]

 

[Solstice]

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!

 

[Skycloud]

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

 

[Barry]

The first problem with the cyclophosphamide trials is that they have to be unblinded because cyclophosphamide makes most people very nauseous. So responses may be placebo effects of one sort or another.

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?

 

[Jonathan Edwards]

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.

 

[Louie41]

Also, ivig helps patients.

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

 

[Cheshire]

(Very poor) Response:
Don't reject evidence from CFS therapies
Michael Sharpe, Trudie Chalder & Jon Stone

We welcome your article on research into chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis or systemic exertion intolerance disease (see Nature 553, 14–17; 2018). In our view, however, you underestimate the benefits of current treatments: namely, graded exercise and cognitive behaviour therapy (CBT).

As you point out, people with the disease often feel ignored or dismissed by the medical profession — a situation that, as clinicians, we deplore. It is regrettable that some patients and others link behavioural treatments with dismissal of a person’s condition, when in fact these therapies can be beneficial. Aside from the results of the PACE trial you mention (co-authored by two of us, T.C. and M.S., among others), further scientific evidence supports the effectiveness of interventions such as exercise and CBT (see, for example, L. Larun et al. Cochrane Database Syst. Rev. http://doi.org/cjp6; 2017 and J. R. Price et al. Cochrane Database Syst. Rev. http://doi.org/dcs37d; 2008).

We think that patients deserve the best research and treatments. In our view, there is no place for stigmatizing any avenue of research or therapy that might help us to improve the lives of people with this long-term debilitating illness.

https://www.nature.com/articles/d41586-018-01285-x

Edit: this response now has its own thread: https://www.s4me.info/threads/nature-publishes-response-from-sharpe-et-al.2253/

 

[Alvin]

Don't reject evidence from CFS therapies
Michael Sharpe, Trudie Chalder & Jon Stone

...

We think that patients deserve the best research and treatments. In our view, there is no place for stigmatizing any avenue of research or therapy that might help us to improve the lives of people with this long-term debilitating illness.

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

 

[Invisible Woman]

help us to improve the lives of people with this long-term debilitating illness.

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

 

[Wonko]

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

Possibly ones full of cabbages, or in siberia.

 

[Adrian]

(Very poor) Response:
Don't reject evidence from CFS therapies
Michael Sharpe, Trudie Chalder & Jon Stone

Aside from the results of the PACE trial you mention (co-authored by two of us, T.C. and M.S., among others), further scientific evidence supports the effectiveness of interventions such as exercise and CBT (see, for example, L. Larun et al. Cochrane Database Syst. Rev. http://doi.org/cjp6; 2017 a

https://www.nature.com/articles/d41586-018-01285-x

Given the biggest trial in the GET Cochrane meta analysis is PACE there comment about other evidence is misleading. Cochrane rated PACE as high quality evidence and included it in a meta analysis with small trials (that make similar methodological mistakes) so Cochrane cannot be considered as 'further scientific evidence' as it is not independent.

 

[Valentijn]

Given the biggest trial in the GET Cochrane meta analysis is PACE there comment about other evidence is misleading. Cochrane rated PACE as high quality evidence and included it in a meta analysis with small trials (that make similar methodological mistakes) so Cochrane cannot be considered as 'further scientific evidence' as it is not independent.

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.

 

[Jonathan Edwards]

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.

 

[Alvin]

But their response is so trivial and peevish I see no point.

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

 

[Cheshire]

Aside from the results of the PACE trial you mention (co-authored by two of us, T.C. and M.S., among others), further scientific evidence supports the effectiveness of interventions such as exercise and CBT

They now resort to citing small studies to back the PACE trial, which doesn't seem to be able to stand alone by itself.

 

[Jonathan Edwards]

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.