Why does GET work for some and not for others?

[Bluebottle]

I believe that the people who improve with GET have chronic fatigue from a cause other than the neurological illness myalgic encephalomyelitis, which is worsened by exercise - as many of those permanently harmed by GET keep trying to tell the medical profession.

[Jessica Bavinton]

Dear cornwall13

The answer to this question is currently unknown, and I know that this is a question the research community is interested to find out.

My hunch (not scientifically founded) is that actually doing the programme has to be a key component - I know it sounds obvious, but unless someone actually does the agreed plan, then it won't work. It also won't work if the agreed 'dose' has been set at a 10min walk and someone does 20mins instead. But it's much more complex than that - I suspect a number of factors are involved in outcomes.

There are also therapists out there who have not been trained in CFS and GET: this is a very specialist area, and not something covered by undergraduate study.The NICE guidelines is clear that this is a treatment delivered by "a suitably trained GET therapist with experience of CFS/ME" (p246).

The patient survey issue has been explored, and I was involved a number of years ago in talking to a patient charity about their findings as they seemed so different from the good results we were finding in clinical practice. The survey was re-done, and asked people "what do you mean by GET"? This is how I know we are talking 'apples' and 'pears', because what the survey participants thought of as GET was not how we defined it at all. It's the therapeutic equivalent of asking people about paracetamol, when in fact all this time they have been taking insulin (which they thought was paracetamol).

With regards to why GET works, we don't entirely know and this is being further researched. We know that the effective element is not about reconditioning, although people do get stronger and fitter which certainly helps. A change in the perception of effort is involved, but other factors may also be involved that have yet to be understood.

Watch this space and we will know more given time. This will clearly be aimed at helping those who do not improve with GET, and those for whom a different approach should be sought.

[Bluebottle]

Why are GET and CBT the only treatments available for our neurological illness please, particularly as many people report being made very much worse by GET? The severely affected, a quarter of all sufferers, receive no specialist treatment at all.

[goblinff]

Picking up then from what you say Jessica (hopefully without sidetracking too much from the OP) that what patients are talking about in surveys as GET (apples) and what GET for ME/CFS actually is (pears) - can I ask what, if anything, is being done in terms of training/ retraining the therapists etc who've been inflicting what appears to be harmful apples on patients instead of helpful pears?

Because to me, that's the gap, if properly applied GET works (helpful pears) but what's actually being provided is not GET at all (potentially harmful apples) - how is that gap going to be fixed? Are there any plans for that? How far have such plans got?

Also, per the OP, I'm a bit confused about what GET/ Adaptive Pacing & CBT are supposed to achieve, my understanding is it's a way to cope with the symptoms until they find out what causes CFS/ME, not that it fixes the underlying issues (which is not what the OP has been told?). Or is it that current thinking is that it's a bit of both?

It's very hard to trust anything with such muddy waters!

[ChrisofCabra]

Dear Cornwall 13.
Thank you for this, I hadn't noticed it before:

...when I read the PACE manual for therapists for GET Pg 20, it clearly states:

Aim: The aim of this treatment is to reverse the physcial inactivity that helps maintain CFS/ME, and to re-engage the participant in physical activity

it goes on to say

Theoretical model: GET assumes that CFS is perpetuated by deconditioing (lack of fitness), reduced physical strengh and altered perception of effort consequent upon reduced physical acticity

Also: "participants are encouraged to see symptoms as temporary and reversible, as a result of their current physical weakness, and not as signs of progressive pathology"

later on it does say There maybe other mechaniusms involved in the success of GET apart from reversing deconditioning

If I wasn't being economical with emotions to save energy I'd be horrified.
That is such a mismatch with the slowly progressive *onset* of my condition for one thing, and a mismatch with my mental attitude and "perception" for another, that a therapist would have to make a very good case for why I should consider it anything but insulting.

Fortunately the occupational therapist who visits me feels as I do!
For my "altered perception of effort" to be that marked as to account for my level of pain, weakness and lack of stamina and me not to realise it, I suggest I'd have to have a brain as internally divided as Syria.
And I think I'd notice that, on a few other symptoms

(Sorry. that wasn't directed at you but at some unknown medical person or group, apparently engaged in "groupthink")

Regards, Chris.