• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

PACE Trial and PACE Trial Protocol

D

Dolphin

Senior Member
Messages
17,567
Dolphin said:
Somebody asked me about this:
P.White's chapter on CFS in that medical textbook where White claims that CBT is effective for 60% of patients (without mentioning of course that this was in comparison to the 45% of SMC patients reporting the same scores).
Click to expand...
It rings a bell. Can anyone remember anything about it. I and this person want to look for it.
Click to expand...
One person has uploaded the file somewhere. Not sure I should share it.

Here's the prognosis chapter of the medical textbook:
Prognosis
Prognosis is poor without treatment, with less than 10% of hospital attenders recovered after 1 year. Outcomes are
worse with greater severity, increasing age, co-morbid mood disorders, and the conviction that the illness is entirely physical. A large trial showed that about 60% improve with active rehabilitative treatments, such as graded exercise therapy and cognitive behaviour therapy when added to specialist medical care.
Click to expand...
 
Cheshire

Cheshire

Senior Member
Messages
1,129
White said:
Prognosis
Prognosis is poor without treatment, with less than 10% of hospital attenders recovered after 1 year. Outcomes are
worse with greater severity, increasing age, co-morbid mood disorders, and the conviction that the illness is entirely physical. A large trial showed that about 60% improve with active rehabilitative treatments, such as graded exercise therapy and cognitive behaviour therapy when added to specialist medical care.
Click to expand...

Whatever we think of the stats White refers to, his comparison is manipulative: he compares 10% recovered with 60% improved. He knows how numbers matter. And these numbers are coming from two different studies whose measurement scales may be very different.
 
Last edited:
A.B.

A.B.

Senior Member
Messages
3,780
Is there any doubt that the authors are engaging in scientific misconduct by changing the trial protocol to eliminate objectivity while maximizing bias, exaggerating the findings and attempting to silence critics as harassers?

I wish we could draw more attention to just bad the science is. Soon we would have an army of outraged scientists on our side.
 
Esther12

Esther12

Senior Member
Messages
13,774
A.B. said:
Is there any doubt that the authors are engaging in scientific misconduct by changing the trial protocol to eliminate objectivity while...
Click to expand...

They didn't really do much to change the protocol to eliminate objectivity. By the time the protocol was published they'd already dropped actometers as an outcome, and their two primary outcomes were based on subjective questionnaire scores. The way that they had planned to present those primary outcomes should have helped reduce problems with bias, but they still weren't objective measures of anything.
 
V

Valentijn

Senior Member
Messages
15,786
Esther12 said:
The way that they had planned to present those primary outcomes should have helped reduce problems with bias, but they still weren't objective measures of anything.
Click to expand...
Like the initial plan to use self-rated patient CGI (Clinical Global Improvement) scores specifically to help avoid bias from the unblinded therapists. That later morphed into the unblinded therapists scoring patients who didn't score themselves. Going beyond even "subjective" and well into the absurd.
 
B

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Dolphin said:
Here's the prognosis chapter of the medical textbook:
Prognosis
Prognosis is poor without treatment, with less than 10% of hospital attenders recovered after 1 year. Outcomes are
worse with greater severity, increasing age, co-morbid mood disorders, and the conviction that the illness is entirely physical. A large trial showed that about 60% improve with active rehabilitative treatments, such as graded exercise therapy and cognitive behaviour therapy when added to specialist medical care.
Click to expand...
Click to expand...
This google books link takes me straight to the quote within the medical text book, but I don't know if the link will always work.

Edit: @Dolphin, there's a thread about the book, here:
http://forums.phoenixrising.me/inde...fs-via-a-chapter-in-a-medical-textbook.27358/
 
S

Sean

Senior Member
Messages
7,378
changing the trial protocol to eliminate objectivity
Click to expand...
They dropped one objective outcome measure (actometers), and did report outcomes for the remaining ones*, but didn't let the poor or null results on those measures get in the way of hyper-hyping the wonders of CBT and GET and the failed model they are based on.

* 6MWD, Self-paced Step Test, and Client Service Receipt Inventory (employment participation, reliance on welfare or on disability/income insurance, total service usage and costs).

EDIT: All the objective measures were secondary measures. The two primary measures were subjective self-report measures (Chalder Fatigue Scale, and SF-36 Physical Functioning).
 
Last edited:
D

Dolphin

Senior Member
Messages
17,567
Ellen Goudsmit:
Some of the issues are non-issues e.g. the dropping of the bimodal scoring system. That was evidence-based (the scale has a low ceiling anyway and using the bimodal scoring system isn't sensitive to minor change, so it has been dropped. All perfectly fair. If new evidence comes in, you should respond to it and they did. Why waste your time doing pointless analyses. Also, some other comments might not be relevant in the UK. Most of what they did is acceptable and virtually everyone does it. The real issue is the missing scores for the two main outcome measures after treatment and at follow-up. That is why someone needs to test the data. St Mary's are giving the info to someone using the MRC guidelines, whatever they are. I think a decision was made a week ago. I applied but application was rejected. I wanted to see how many, if any of participants were in the normal range post-treatment at at FU. Anyway, i've answered one question so there are now 67.
Click to expand...
https://www.facebook.com/MEActNet/posts/1683984895217243?comment_id=1684299818519084&comment_tracking={"tn":"R0"}

Aside: Don't agree with her on the likert/bimodal point. Think the bimodal threshold of 3/4 is better than the Likert threshold of 18/19. There are some other problems with likert scoring e.g. some people report scores better than healthy people.
 
Last edited:
Esther12

Esther12

Senior Member
Messages
13,774
Also, bimodal scoring might be less prone to distortion from placebo effects, as it distinguishes only between self-reported normal fatigue and worse than normal, rather than variations of worse than normal. Would be interesting to have that examined.

Good to hear that someone has the data though. Wonder who. Could it be an insider who is just expected to give them a clean bill of health? Not sure who'd be willing to do that publicly at this point.
 
D

Dolphin

Senior Member
Messages
17,567
Somebody has asked me for the cost of CBT or GET per patient in the trial.

Do we have much information on costs? The main thing that comes to mind for me is what is in the PACE Trial Identifier:
http://bit.ly/14A0T3z
 
You must log in or register to reply here.