Lancet Infectious Diseases: Editorial, "A proper place for retraction", 2017, mentions PACE in passing

I have only just noticed that Cochrane have substantially revised their conclusions on the HCV DAA review that was the main point of the editorial. Hey ho!

Although it seems that the HCV community are still unhappy: https://twitter.com/user/status/910506046963273728

 

I've just followed that up with this: https://lucibee.wordpress.com/2018/...view-on-the-pace-trial-a-line-by-line-debunk/

I don't know whether it will do any good. But if you think it might do harm, please let me know immediately!

 

Not had time to read all of it yet @Lucibee, but looks excellent. Really does make you wonder what planet these folks are on.

 

Sorry - I don't know why the formatting isn't coming through. Anyone better versed at Wordpress who can advise?

It seems OK on Firefox, Internet Explorer and Safari

 

I wonder if, 7 years on, Richard Horton finally realises what a ridiculously uninformed statement this was ...

 

I said the same thing on another thread where Lucibee posted the same link. For me the problem only occurs when I read it on my phone. It's fine from a real computer.

 

I suspect that phone apps strip all formatting to save space.

 

I think it depends on the 'theme'. If your theme is 'responsive' it should sort out the problem. A 'responsive' theme will automatically adjust the presentation to the size of the viewers screen size.

As an example, look at this theme http://themes.simplethemes.com/skeleton/ and try changing the width of your browser window. It changes format from Desktop to tablet to phone.

If you need any help, feel free to PM me and I'll try.

 

Better to write as you did well, than let things go unchallenged

 

I've done a wee fix, using lozenges to indicate beginnings and ends of quotes (where it is unclear).
hth

 

I think he was well briefed by the authors, but some of his responses show that he really hasn't read Prof Hooper's "diatribe".

 

Your blog won't accept my comment @Lucibee (I know, sorry )

I'll add it here for now.

Thanks for the post Lucy.

Was the patient community representative of the wider patient community? Did you try to find out?
How was adaptive pacing therapy 'much endorsed' when it was invented for the trial? Who endorsed it? Where is the evidence of endorsement?

How is 'dozens' a deluge?

If the population does not contain a substantial number people who are bed ridden, what was the population studied in the FINE trial? Where is the evidence that there is not a substantial number of bed ridden people?

Why mention "chronic fatigue"? What does it have to do with ME/CFS? Chronic fatigue is a symptom of many illnesses, it does not make those illnesses ME/CFS.

The breach of the Declaration of Helsinki was due to the investigators not gaining informed consent of the participants, and not warning them of potential harms involved in the treatments.

There is a group of patients who are not desperate to get good evidence on which to base their future treatment? Where is the evidence of this?
As a participant in a group of patients who don't praise the PACE trial, I see a constant questioning of evidence and a enthusiasm for good evidence on which to base future treatment.

Now I'm part of a damaging group of individuals! What am I damaging? Should I be stopped? If so, how? Why?

What is wrong with groups from civil society being organised and vocal? Would you prefer them to be large, unorganised and quiet? Why?

Lastly I would like to ask Richard Horton:

1. What if you are wrong?
   
2. Have you considered that?
   
3. If you are wrong, how would you expect people to react?

 

No idea why! I do pre-moderate, but nothing has come through yet.

 

It seems to be accepting now.