Guided graded exercise self-help for chronic fatigue syndrome: Patient experiences and perceptions, 2018, Cheshire et al

That is a very odd story about someone who says they used to do triathlon but apparently, after becoming ill, never thought for themselves to try pushing a little more. Does one have to be told that by a therapist? The problem should be in preventing such people from exercising.
 
Other factors that participants from both groups reported as being important motivators included: personal attributes (stubbornness, determined, or positive), life philosophies (e.g., taking personal responsibility for their own destinies, preferring not to be on medication), or overcoming fears/scepticism about GES.

To be fair I had quite a sceptical mind to begin with because I have tried many things to improve my symptoms over the years and actually doing more, even if it is just a little bit more, has never ever benefited me. But I was at a stage where I would do anything to see if it worked. P5, “a little worse”
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Not particularly exciting but just shows that lots of people would be motivated to try to use exercise to help themselves.

If all that was required to recover was exercise, a cheap or free therapy, large numbers of people would have recovered.

While some psychological therapies might have some stigma attached to them which might make the odd person reluctant to try them, exercise doesn't really have the same problem.
 
Support from other people and therapies Participants described how their partner, family, and friends also helped them to maintain their motivation. These significant others could provide practical and emotional encouragement and support.

Definitely the support of my wife. Just you know, supporting me and encouraging me when I’d managed to do a little bit more. And I think again, if you’re living alone and you’re on your own I think that could be very difficult. P8, “much better”
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I think most people with ME or CFS would need more encouragement to pace and do less on some days rather than encouragement to keep pushing themselves.
 
Dolphin said:
Not particularly exciting but just shows that lots of people would be motivated to try to use exercise to help themselves.

If all that was required to recover was exercise, a cheap or free therapy, large numbers of people would have recovered.

While some psychological therapies might have some stigma attached to them which might make the odd person reluctant to try them, exercise doesn't really have the same problem.
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Not if they’re lazy malingerers

Err :wtf: so that makes us lazy malingering type A personalities
 
A number of participants in the “much better” group reported their use of GES being supported by complementary therapies, counselling, CBT, self-help, or peer support (that they either undertook concurrently or after taking part in the GES programme). For example, two participants had used complementary therapy approaches during the trial, which they felt supported their recovery and gave them more energy, making it easier for them to engage with GES.

Even if I was getting better from another method [complementary therapy] it’s still important to gradually start that walking because otherwise I might end up going backwards again. P6, “much better”
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Recovery percentages weren't presented for the study. However, the people with better baseline scores did a lot worse. It's quite possible nobody recovered. Improving a bit is not recovery.
 
Our results suggest that the booklet alone is unlikely to be sufficient to support patients through GES successfully; participants considered the additional assistance from the trained physiotherapists a key to success.
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A bit irritating, given that people didn't necessarily do that well in this study, even by the subjective outcome measures reported (though it is possible that there were a few individuals within the group who did well but we don't have data on them)

However, the results also suggest that individuals who have been ill with CFS/ME for a relatively longer period of time and have additional comorbid conditions may benefit from more intensive and bespoke therapy, additional or substitute treatments (e.g., CBT), or a broader graded activity approach, which also considered mental energy expenditure [30,31].
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So this therapy doesn't work, so they say a very similar additional approach "may benefit", with no evidence.

Such claims by a drug company would be heavily scrutinised, I think.
 
Our findings also show that the “a little worse” group had been ill substantially longer than the “much better” group. It is beyond the scope of this study to establish how this could influence results. It may be that shorter illness duration reflects lower illness severity and/or is linked to exacerbation of symptoms, which was reported as worse in the “a little worse” group and cited as a reason for discontinuing GES activities. It may also be that illness duration influences self-efficacy (confidence that one’s actions will lead to the desired goal): one participant in the “a little worse” group felt the length of time she had been ill made it difficult for her to change her behaviour to help improve her condition. Thus, it may be that an issue such as kinesiophobia (fear of movement and activity), which is known to occur in CFS/ME [36] is more established in those with longer illness duration.
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All speculation. They didn't measure these things.

However, studies into patient change attributions for self-management interventions found that those who did not improve often attributed this unchanged behaviour to a lack of time or motivation, or a more general sentiment that everything was the same or nothing will help [14,15].
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They're suggesting the patients are to blame for their lack of improvement/their worsening.

Our findings correspond with other studies that have found recovery is more likely in those who have been ill for shorter durations [37,38],
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Just to point out again that recovery wasn't measured in this study, even though they refer to recovery a number of times in this paper.

and that delaying treatment is associated with reduced treatment efficacy [30].
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That was a small study. When the study was replicated in a larger trial, the FINE Trial, there was little improvement and no improvement on the step test.

Our results also suggest the importance of early diagnosis of CFS/ME [6,9] and targeted GES for those newly diagnosed.
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Yuck
 
It was important for participants to have time in their lives to undertake GES. This included time to do GES activities and, perhaps more significantly, spare capacity remaining to accommodate any exacerbation of symptoms and for such setbacks not to interfere with essential life activities.
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I think this is actually a good point. And why a coercive approach is very questionable e.g. Peter White has turned down at least one individual from a payment saying they could get better with CBT and/or GET.
https://forums.moneysavingexpert.com/showthread.php?t=2356683
 
Our results suggest that it is useful to help patients internalise a convincing theory of how GES works, to support motivation- although this may be challenging given that the exact mechanisms underpinning any improvement following GET are unclear [40].
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I'm not sure that results were good enough to justify this.

And is no mention that convincing patients that their symptoms are down to deconditioning and the like could be risky.
 
Participants in this study developed an understanding of how GES worked in relation to pre-illness knowledge/experiences of exercise, for example, gradually building strength and functioning to reach exercise goals.
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Though pre-illness knowledge may not be a good basis to approach activity management in ME/CFS, it could even be detrimental.
 
Our findings also suggest that patients should be encouraged to enlist the support of significant others and find an activity they enjoy as part of their GES programme.
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Just to be negative: significant others could encourage them to exercise when really they should be resting or at least not exercising.

In addition, working with patients’ existing knowledge of GES and exercise could help them develop a more useful understanding of GES.
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What does a "more useful understanding of GES" mean? The impression seems to be anything which gets people to exercise is good whether or not there is any basis for it.
 
It may also be that illness duration influences self-efficacy (confidence that one’s actions will lead to the desired goal): one participant in the “a little worse” group felt the length of time she had been ill made it difficult for her to change her behaviour to help improve her condition. Thus, it may be that an issue such as kinesiophobia (fear of movement and activity), which is known to occur in CFS/ME [36] is more established in those with longer illness duration.
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Illness duration almost certainly affects cognitions specific to how patients report symptoms to medical practitioners and on questionnaires. My argument is the opposite of the authors, namely that such changes lead to more accurate reporting, with reduced bias due to optimism and the various response/participation biases that are uncontrolled in nonblinded studies.
 
A number of participants from both groups reported an exacerbation of symptoms during their GES programme (particularly pain and fatigue). This contrasts with the usual perceived response to physical activity by healthy people, who frequently report feeling good after physical activity [43]. However, it is not uncommon for healthy people to report pain after exercise in the form of delayed onset muscle soreness, which is more common if unaccustomed to exercise [44].
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This is frustrating to me. I know Peter White has done this before: given the impression the symptoms people with ME/CFS feel after exercising are just like those of people who are unfit.
 
What can also be confusing is that the booklet used for GES suggests that GES will not cause them any “ill effects.” This is specifically in reference to the lack of serious adverse reactions and lack of other increases in adverse outcomes reported in GET trials, and not the exercise-induced symptom exacerbations described later in the booklet. Nevertheless, this may cause patient confusion regarding the usual effect of exercise they might expect and any post-exertional malaise they may experience, and careful editing or clarification of the booklet is recommended here.
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The reporting of harms in trials of graded exercise therapy has not been good. I don't think they should be making such claims to patients.
 
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