physical activity & exercise

Moderator: talkhealth

Why does GET work for some and not for others?

Postby cornwall13 on Wed Aug 14, 2013 12:33 pm

Hi

I still get confused why and how GET works. I hear that its recommended by NICE, and then hear from other patients surveys that its makes them worse. I get confused what to believe to be honest!!! I try to keep an open mind.

But if GET works for some, and not for others, then why? Is it just the fact that patients aren't following their therapists instructions, or therapists not applying the right treatment advice?

What puzzles me, is that as far as I am aware GET helps because people who have deconditioned? I don't know if I am right in saying this. Therefore, does GET just treats secondary symptoms as a result of the disease and not actually treating the disease itself.

For example, my two main symptions are the overwhelming fatigue and enlarged lymph nodes (in my neck, chest), even after 7 years of illness I still have enlarged lymph nodes. But how does GET as a treatment help my enlarged lymph nodes?

Sorry to sound stupid, but I just don't understand the rationale? Are we saying that GET actually treats the underlying illness?

Regards
cornwall13
 
Posts: 10
Joined: Fri Aug 02, 2013 9:35 am

Re: Why does GET work for some and not for others?

Postby Bluebottle on Wed Aug 14, 2013 4:28 pm

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.
Bluebottle
 
Posts: 36
Joined: Fri Aug 02, 2013 2:36 pm

Re: Why does GET work for some and not for others?

Postby Jessica Bavinton on Thu Aug 15, 2013 2:53 pm

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.
Jessica Bavinton
Specialist Physiotherapist
BSc (Hons) Physiotherapy, MCSP, PVRA, HG (Dip), MBACME
User avatar
Jessica Bavinton
 
Posts: 40
Joined: Wed Aug 07, 2013 9:14 am

Re: Why does GET work for some and not for others?

Postby cornwall13 on Thu Aug 15, 2013 3:56 pm

Thanks for your reply

In regards to your comment Jessica

"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."

But 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

This is why I don't understand how GET works, because the way my respected specialist told me was that my immune system is overactive and I feel my illness doesn't really match the GET model of why I am still ill. I'm not saying that this is for everyone, but perhaps a subset of patients will find GET very useful. Perhaps in time we will understand which patients it works for best and others perhaps not so.

I definitely agree with you the way that people misinterprete the GET treatment plan and must be done by a very knowledge GET specialist.

Regards
cornwall13
 
Posts: 10
Joined: Fri Aug 02, 2013 9:35 am

Re: Why does GET work for some and not for others?

Postby Bluebottle on Thu Aug 15, 2013 5:13 pm

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.
Bluebottle
 
Posts: 36
Joined: Fri Aug 02, 2013 2:36 pm

Re: Why does GET work for some and not for others?

Postby goblinff on Thu Aug 15, 2013 5:47 pm

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!
goblinff
 
Posts: 30
Joined: Sun Aug 11, 2013 6:21 pm

Re: Why does GET work for some and not for others?

Postby ChrisofCabra on Thu Aug 15, 2013 6:16 pm

Dear Cornwall 13.
Thank you for this, I hadn't noticed it before:
cornwall13 wrote:
...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.
User avatar
ChrisofCabra
 
Posts: 23
Joined: Sat Aug 03, 2013 6:57 pm

Re: Why does GET work for some and not for others?

Postby cornwall13 on Fri Aug 16, 2013 7:54 am

Hi, just to add my understanding of GET from my posts, the PACE trial paper peer review paper which can be found via the link:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/

It does seem to suggest that GET is based on reconditioning and exercise intolerance theories of cfs.

"Graded exercise therapy (GET)

GET was done on the basis of deconditioning and exercise intolerance theories of chronic fatigue syndrome. These theories assume that the syndrome is perpetuated by reversible physiological changes of deconditioning and avoidance of activity. These changes result in the deconditioning being maintained and an increased perception of effort, leading to further inactivity. The aim of treatment was to help the participant gradually return to appropriate physical activities, reverse the deconditioning, and thereby reduce fatigue and disability.
"

again this is in contrast with your post Jessica, of what GET is trying to achieve. The PACE trial objectives does really suggest that is to reverse the deconditioning.

Although you stated:

"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. "

Regards
cornwall13
 
Posts: 10
Joined: Fri Aug 02, 2013 9:35 am

Who is online
Users browsing this forum: No registered users and 1 guest