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:

Forward ME Letter to The Times: Patients with ME/CFS ‘are not simply “deconditioned” as claimed by many psychiatrists’

Treatment for patients with M.E.

Sir,

The article by Tom Whipple, (“Findings of £5m ME chronic fatigue study ‘worthless’,” Mar 22) highlights a long-standing problem.

The National Institute for Health and Care Excellence (Nice) is in the process of replacing its guideline for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but this will take time.

Patients with ME/CFS in this country continue to receive damaging treatment in the form of graded exercise therapy (GET). Despite evidence of disabling metabolic abnormalities in their muscles, patients are advised to “exercise back to fitness”.

They are not simply “deconditioned” as claimed by many psychiatrists. Forced exercise above very low levels characteristically incapacitates most patients.

The “exercise will make you better doctrine” applied to ME/CFS is profoundly incorrect and has no scientific evidence base.

The human cost is enormous, with many sufferers from ME/CFS rendered worse by inappropriate medical management.

Even worse, such management is inflicted compulsorily on some patients, both adults and children, with their informed consent being bypassed via the use of mental health and child protection legislation.

Signatures

Countess of Mar, Forward-ME; Dr William Weir, infectious disease consultant; Dr Nigel Speight, paediatrician; Dr Charles Shepherd, ME association; Dr Vance Spence, ME research UK; Jonathan Davies, ME research UK; Dr Gareth Tuckwell, ME trust; Dr Paul Worthley, ME trust; Jane Colby, Tymes trust; Helen Brownlie, 25 per cent ME group; Tanya and Christine Harrison, Brame; William and Janice Kent, Remember; Hannah Clifton, ME trust; Clare Ogden, Action for ME



Forward ME website
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Kalliope said:
Science Media Centre
Expert reaction to reanalysis of the PACE trial for CFS treatments
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Jon Stone said:
“One of the assertions of this reanalysis, that treatment effects seen may simply be the result of unblinded self-report measures, would not explain why patients undergoing adaptive pacing therapy (APT) did worse than those receiving CBT and GET in the original study who were also unblinded to therapy. .
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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:
Rethinking paper said:
The PACE investigators have argued that expectancy effects alone cannot account for the positive self-reported improvements, because at the start of treatment, patients’ expectations of improvement were not greater in the CBT and GET groups than in the other groups [2, 23]. However, they fail to point out that CBT and GET participants were primed during treatment to expect improvement. The manual given to CBT participants at the start of treat- ment proclaimed CBT to be “a powerful and safe treat- ment which has been shown to be effective in... CFS/ME” ([32], p. 123). The GET participants’ manual described GET as “one of the most effective therapy strategies currently known” ([33], p. 28). Both interventions emphasised that faithful adherence to the programme could lead to a full recovery. Such messages — from an authoritative source — are likely to have substantially raised patients’ expectations of improvement. Importantly, no such statements were given to the other treatment groups
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Such messages — from an authoritative source — are likely to have substantially raised patients’ expectations of improvement. Importantly, no such statements were given to the other treatment groups
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Patients undergoing ATP were also told it could not cure them if I remember right.

Therapists probably also favored CBT and GET over ATP.
 
dave30th said:
I am sure Ponting's response was not what SMC wanted to see. It demolishes the Stone statement and the absurd response from Sharpe et al. And why didn't they ask my BFF Esther Crawley to comment? Surely she would have given them a slam-dunk statement that despite any criticism, PACE remains a "great, great trial."
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At least they didn't use the expert Dr James Thompson who they used to comment on Smile He was also organizing eugenics conferences.
 
Carolyn Wilshire said:
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:
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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!
 
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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?
 
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sea said:
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?
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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.
 
sea said:
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?
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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.
 
Esther12 said:
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.
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Deeply shifty seems a tad euphemistic?
And yes, I think I may need to jot this down in my notebook.
 
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