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

Not sure if this has been covered on this forum, but Forward ME has managed to get its letter published by The Times today:

ME Association blog:

 

Esther Crawley?

 

Let me qualify that @Sly Saint.

No registrar of mine would have been dumb enough to say, sincerely, what Stone said about PACE in relation to a piece of work they had no vested interest in.

 

He's doing his best to support his mates and his own strongly-held beliefs, but he must have been a little too overconfident to actually read the paper. We provide the answer to his question above right there in the text:

 

Patients undergoing ATP were also told it could not cure them if I remember right.

Therapists probably also favored CBT and GET over ATP.

 

Interesting to see that Clare Ogden of AfME co-signed that letter in Times.

 

@Trish - It's in both

 

Yep. Therapies that brainwash you into feeling much more positive about 'improvement' of your physical illness, will not surprisingly cause you to report that bias into your questionnaire answers. All it shows is they didn't include such brainwashing into APT.

 

Does give some insights into the circular logic that seems to be a BPS phsychologist's ME rationale:

• The underlying illness no longer exists. The only remaining problem is flawed thinking by the PwME. We know this, we just need to prove it.
  
• We need to change the way they think, in which case they will be cured of their thinking illness.
• Apply therapies designed to change they way they think.
  
• How do we check if they have changed the way they think? Ask them questions to see what they are thinking.
• If they are thinking more positively, then because they have a thinking illness, they must have improved!
• What's that ... it's a physical illness? No, don't be so stupid! We just proved to you it's because of bad thinking!

 

Code:

https://twitter.com/mayadusenbery/status/976910927449620480

https://twitter.com/user/status/976910927449620480

 

Thank you! BSP is an acronym familiar to me for many years and I keep typing it by mistake ... British Standard Pipe threads . Edited my post.

 

This is starting to get embarrassing, Henrik Vogt
https://twitter.com/user/status/977283176220495873

 

No not embarrassing, just pathetically tragic.

 

Sorry I haven’t been able to read all and keep up so this may have been discussed already

From Chris Ponting’s comment:
“This reanalysis was required in part because the trial group had revised their analysis from the plan published in their protocol.”

From PACE authors’ reply:
“They report different results from the original trial. However this is not surprising as their analyses used only part of the trial dataset and followed a preliminary PACE analysis plan, rather than the final approved and published one.”

I’ve forgotten the time line of the original protocol. Can they honestly claim the original protocol was a preliminary one as opposed to an approved and published one or this this another blatent lie?

 

Seems deeply shifty to present the trials protocol, published in BMC Neurology once the trial was already underway, as merely the "preliminary PACE analysis plan".

I think you're right to pull that out as an extraordinary claim that we should draw attention to.

 

Yes, this is indeed a falsehood. The protocol was indeed published. I'm not interested in who approved it and who didn't (that's an internal matter for the researchers), but from the point of view of science, publishing a protocol, putting your names to it, and calling it a "protocol" (which is what they did) constitutes a binding promise. That promise should be adhered to unless there are special reasons for not doing so - for example, your analysis of blood samples could not be completed because the lab burned down.

It was not a preliminary analysis plan. in fact, they were very late in publishing it, and concerns were raised about that at the time. They really should have released the protocol before they started to collect data.

 

I was reminded of a previous planning exercise:

SNOUT
Doth the moon shine that night we play our play?

BOTTOM
A calendar, a calendar! Look in the almanac. Find out moonshine, find out moonshine!

QUINCE
(takes out a book) Yes, it doth shine that night.

20 BOTTOM
Why then, may you leave a casement of the great chamber window where we play open, and the moon may shine in at the casement.

QUINCE
Ay. Or else one must come in with a bush of thorns and a lantern, and say he comes to disfigure, or to present, the person of Moonshine. Then, there is another thing: we must have a wall in the great chamber. For Pyramus and Thisbe, says the story, did talk through the chink of a wall.

SNOUT
You can never bring in a wall. What say you, Bottom?

BOTTOM
Some man or other must present Wall. And let him have some plaster, or some loam, or some roughcast about him to signify wall. And let him hold his fingers thus, and through that cranny shall Pyramus and Thisbe whisper.

QUINCE
If that may be then all is well. Come, sit down, every mother’s son, and rehearse your parts.—Pyramus, you begin. When you have spoken your speech, enter into that brake.—And so everyone according to his cue.

 

Deeply shifty seems a tad euphemistic?
And yes, I think I may need to jot this down in my notebook.