• 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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Rehabilitative treatments for chronic fatigue syndrome: long term follow up from PACE trial

Anna Wood

Anna Wood

wood/sheridan
Messages
487
Might be of interest- I've plotted the fatigue and physical functioning scores (taken from the Lancet article supplementary material http://www.thelancet.com/…/PIIS2215-0366%2815%…/supplemental) as a function of total number of sessions of CBT/GET. Patients in the CBT/GET arm of the trial automatically had 15 sessions during the trial. All participants could have extra sessions after wards. Note lower fatigue and higher physical functions is good.
 

Attachments

  • fatigue_followup.png
    fatigue_followup.png
    24.4 KB · Views: 17
D

Dolphin

Senior Member
Messages
17,566
Anna Wood said:
Might be of interest- I've plotted the fatigue and physical functioning scores (taken from the Lancet article supplementary material http://www.thelancet.com/…/PIIS2215-0366%2815%…/supplemental) as a function of total number of sessions of CBT/GET. Patients in the CBT/GET arm of the trial automatically had 15 sessions during the trial. All participants could have extra sessions after wards. Note lower fatigue and higher physical functions is good.
Click to expand...
Here's a bigger version of the same image:
fatigue_followup.png

(I did "full image" rather than "thumbnail")
 
SOC

SOC

Senior Member
Messages
7,849
Anna Wood said:
Might be of interest- I've plotted the fatigue and physical functioning scores (taken from the Lancet article supplementary material http://www.thelancet.com/…/PIIS2215-0366%2815%…/supplemental) as a function of total number of sessions of CBT/GET. Patients in the CBT/GET arm of the trial automatically had 15 sessions during the trial. All participants could have extra sessions after wards. Note lower fatigue and higher physical functions is good.
Click to expand...
What are the double markers? What they reported at the end of the study and what they reported at follow up? Different arms of the study?
 
Anna Wood

Anna Wood

wood/sheridan
Messages
487
What are the double markers? What they reported at the end of the study and what they reported at follow up? Different arms of the study?
Click to expand...

Ah, yes. So the data come straight from a table with all 4 treatment arms. Data for 0, 5 and 10 are in pairs for SMT and APT, Data for 15, 20 and 25 are for CBT and GET. I didn't want to average them, to give the data the best chance, but as you see it really doesn't matter much. For PF - 5 sessions the high point is CBT, for 20 sessions the high point is GET.
 
SOC

SOC

Senior Member
Messages
7,849
Anna Wood said:
Might be of interest- I've plotted the fatigue and physical functioning scores (taken from the Lancet article supplementary material http://www.thelancet.com/…/PIIS2215-0366%2815%…/supplemental) as a function of total number of sessions of CBT/GET. Patients in the CBT/GET arm of the trial automatically had 15 sessions during the trial. All participants could have extra sessions after wards. Note lower fatigue and higher physical functions is good.
Click to expand...
So if I'm reading this correctly, the people in the APT/SMT arms who bought into the CBT hype and tried it post-study got worse during the follow-up period. Maybe they were just bummed that the magical therapy didn't actually work despite the hype and that disappointment/anger/frustration was reflected in how they answered the questionnaires. :p

At the same time, those who continued with CBT/GET also got worse (or stayed the same given there's not much difference in fatigue scores). Perhaps the gloss started wearing off and they realized even with brain-washing booster shoots that they weren't getting better.

It looks like they might all have just done nothing (I assume SMC provided nothing of substance in terms of treatment for ME) and saved themselves the energy involved in going to treatment, filling out forms, and whatever else they had to endure.

I guess we all know this -- that CBT/GET had no benefit and was possibly harmful in this particular group (whatever that may have been -- that's another question), but it's still satisfying to see it in another clear graph.
 
Anna Wood

Anna Wood

wood/sheridan
Messages
487
So if I'm reading this correctly, the people in the APT/SMT arms who bought into the CBT hype and tried it post-study got worse during the follow-up period. Maybe they were just bummed that the magical therapy didn't actually work despite the hype and that disappointment/anger/frustration was reflected in how they answered the questionnaires. :p
Click to expand...

They certainly ended up with worse scores. But we can't say from this data that they got worse during the CBT/GET follow-up stage - actually they improved on both fatigue and PF (as did everyone else) during this period.
 
SOC

SOC

Senior Member
Messages
7,849
Anna Wood said:
They certainly ended up with worse scores. But we can't say from this data that they got worse during the CBT/GET follow-up stage - actually they improved on both fatigue and PF (as did everyone else) during this period.
Click to expand...
Oh, right. :bang-head: I've been looking at this too long and my brain is fried.
 
D

Dolphin

Senior Member
Messages
17,566
Dolphin said:
I think there should be some focus on the table in the Appendix that actually looked at the effects of CBT and GET after treatment.
View attachment 13276
The authors suggest that it is the CBT and GET after APT and specialist medical care alone that is the reason the differences between the groups disappeared. However the table doesn't bear this out. Indeed those that had 10 or more sessions of CBT and GET tended to have the lowest improvements of the three groups ((i)10+ sessions of CBT and GET post-trial; (ii) 1-9 sessions of CBT or GET and (iii) no sessions of CBT or GET post trial).
(We're looking at the first two columns)

(For the Chalder Fatigue Questionnaire (CFQ), the lower the score the better the result. For the SF-36 physical functioning subscale, it's the opposite: the higher the score the better. The main thing of interest is the change scores i.e. mean difference).
Click to expand...
For future records:
I set up a thread to discuss this table here:
http://forums.phoenixrising.me/inde...having-cbt-or-get-after-52-weeks.40884/unread
 
Ellkaye

Ellkaye

Senior Member
Messages
163
The Lancet PACE paper can no longer stand.
There may well be a retraction.
A lot of noise being made for some parts of it to be red inked or deleted.
It just can't stand if that happens.
 
D

Dolphin

Senior Member
Messages
17,566
worldbackwards said:
Vanessa Feltz on Radio 2 was a touch better. Up against a Dr. Mike Smith (?), she did at least put the idea that it was cruel to push patients through exercises that made them worse but he was having none of it, talking up the great "expertise" of the therapists (as if they aren't just psychiatric nurses armed with a handbook and a nice line in teeth-sucking) and making damn sure we don't fall into self destructive patterns or some such.
Click to expand...
Somebody sent me a recording of this. It's available here:
https://www.mediafire.com/?chub4wi4nd9rtjf
 
W

worldbackwards

Senior Member
Messages
2,051
Chrisb said:
Sadly I cannot claim that it is original. I have forgotten who deserves the credit and the original context. It was a British journalist about 10 years ago.
Click to expand...
Wasn't it Laurie Taylor, of "Thinking Allowed" fame?

That last line written by someone who's clearly never worked a day in his life.
 
You must log in or register to reply here.