The Effect of CBT, GET and Pacing Treatments on ME/CFS Symptoms: Analysis of a Patient Survey compared against Secondary Surveys - 2017 Geraghty et al

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Problem
Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) severely impacts the quality of life of sufferers. Most ME/CFS patients will be managed in primary care. Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are the only evidence-based treatments recommended for ME/CFS. In contrast, patients anecdotally report that CBT and GET deliver little benefit, in comparison to pacing or pacing therapy (PT). Our study explores patients’ symptom and illness changes in response to these treatments. We analyse results from a large patient survey (n=1,428) and compare findings against other comparable surveys (n=16,665).

Approach
Using ordered logistic regression, we first modelled the direct effect of course approach on change in symptoms (post-course); second, we considered the effects of course composition after adjusting for demographic, condition-specific and course-specific variables. We also explored the effect that these variables had on change in symptoms. Finally, we compared our results against findings from other patient surveys that report symptom changes following CBT, GET and PT (2000-2015).

Findings
Only 8% of patients who underwent CBT report improvement (92% no benefit). Only 12% following GET improve, while 74% report worsening (14% unchanged). In comparison, 44% report improving following PT with only 14% worsening (41% unchanged). Adding GET to any other treatment worsens outcomes, whereas adding PT improves outcomes. Analysis of secondary survey evidence show CBT being beneficial for 35% of patients (17% worse/48% unchanged), GET has a negative impact for 54% of patients (28% benefit/17% unchanged), whereas 82% of patients following PT report improvement in symptoms (4% worse/14% unchanged). The pattern appears to be consistent for the high negative impact of GET and the low negative/high positive impact of PT.

Consequences
Our results suggest that CBT and GET are of limited benefit in terms of helping ME/CFS patients improve symptoms. The majority of patients experience no benefit. In contrast, pacing brings about the greatest positive impact with the least negative reactions. GET brings about a substantive deterioration in symptoms for around half of patients and it is the least favoured treatment approach, compared with pacing, which is most favoured by patients. Adding GET in combination with other treatments worsens outcomes and contributes to increases in illness severity, whereas adding pacing in combination improves outcomes. These findings conflict with NICE guidelines and some randomised controlled trials that report CBT and GET to be superior treatments, but are consistent with findings from multiple patient surveys that span fifteen years and multiple countries. Therapists’ views have an impact on patient outcomes, with views of ME/CFS being a physical illness associated with better outcomes than views of ME/CFS being psychological illness. All three treatment approaches have little impact on disability status. Further research is needed to better understand the role of pacing in ME/CFS and potential adverse responses to CBT and GET.
Click to expand...
https://sapc.ac.uk/conference/2017/...treatments-mecfs-symptoms-analysis-of-patient
 
"Further research is needed to better understand the role of pacing in ME/CFS and potential adverse responses to CBT and GET."

I don't understand why we should use precious resources for the latter (my bolding).

Doctors often prescribe or recommend therapies that don't work or cause unwanted side effects, because human bodies are complicated and treatments are often blunt instruments. They note the patient's response and move on. Everyday occurrence.

There's no need for an inquest into this.
 
Kitty said:
"Further research is needed to better understand the role of pacing in ME/CFS and potential adverse responses to CBT and GET."

I don't understand why we should use precious resources for the latter (my bolding).
Click to expand...
That was my reaction too. I don't see any point in simply putting more cohorts of patients through GET again, after multiple trials have shown no objective or long term benefits and multiple surveys have reported high rates of adverse effects. It would surely be unethical to do more trials.

I wonder whether they mean research such as 2day CPET that includes biological studies of the effects of exercise in ME that might reveal why exercise has adverse effects.
 
Trish said:
That was my reaction too. I don't see any point in simply putting more cohorts of patients through GET again, after multiple trials have shown no objective or long term benefits and multiple surveys have reported high rates of adverse effects. It would surely be unethical to do more trials.

I wonder whether they mean research such as 2day CPET that includes biological studies of the effects of exercise in ME that might reveal why exercise has adverse effects.
Click to expand...
I'd like the second kind, although I must admit I would not volunteer to take part in such a study any time soon except on the researcher side.
 
Midnattsol said:
I'd like the second kind, although I must admit I would not volunteer to take part in such a study any time soon except on the researcher side.
Click to expand...

The data from these studies are incredibly valuable, but I'm not sure we know enough yet to recommend repeating them, specially given the potential for patient harm. I'd welcome it if researchers saw specific phenomena occurring in ex vivo experiments, though, and there was a need for confirmation that could only be obtained in vivo.
 
Kitty said:
"Further research is needed to better understand the role of pacing in ME/CFS and potential adverse responses to CBT and GET."
Click to expand...

I think there could be studies of the harm done by GET which would be very worthwhile if NICE continues to recommend it (or even doesn't come out against it). Currently there is very little in research in that direction - one of the things that those backing GET keep arguing is that its only harmful if done wrongly (and then changing the defn of GET). We have the paper that Graham and others did on looking at how clinics fail to record or look for harm which makes a case that they cannot know what the situation is. But some (independant) research that contacted patents treated with GET in major clinics and gathered their experiences could help reduce the hard caused by GET clinics.

But, it is somewhat a waste of money in that they shouldn't be recommending stuff that has been shown to have no benefit.
 
Adrian said:
I think there could be studies of the harm done by GET which would be very worthwhile if NICE continues to recommend it (or even doesn't come out against it). Currently there is very little in research in that direction - one of the things that those backing GET keep arguing is that its only harmful if done wrongly (and then changing the defn of GET). We have the paper that Graham and others did on looking at how clinics fail to record or look for harm which makes a case that they cannot know what the situation is. But some (independant) research that contacted patents treated with GET in major clinics and gathered their experiences could help reduce the hard caused by GET clinics.

But, it is somewhat a waste of money in that they shouldn't be recommending stuff that has been shown to have no benefit.
Click to expand...
Those studies are basically happening as we speak so I don't think there will be a need for it. Most "rehabilitation" programs for Covid are built on this paradigm and many are finding that they have to dramatically change their expectations. In one of the studies they used a program built for 70 year-olds recovering from pneumonia and it was too much even for the young adults, causing crashes.

It will take a few months but GET is currently being put to the test for rehabilitation of post-viral illness / whatchuwantacallit and failing across the board. So I wouldn't worry about that, it's currently happening.
 
You must log in or register to reply here.
Back
Top Bottom