Discussion in 'General Treatment' started by Tired of being sick, Sep 26, 2014.
Also I would appreciate it if you would post your personal experiences as well..
I am mostly housebound. I used to function better, though was obviously still sick. GET made me as sick as I now am. A huge drop
In quality of life, which I never clawed back. It's dangerous, but they don't tell you that!
And by the way, I only did five minutes on the lowest setting on an exercise bike. Previous to being ill I was very fit and used to cycle miles on much higher settings. At the time, I felt I could have easily done more. It was the next day I was hit.
I was talking to my NHS specialist about GET, and her opinion is essentially that the people who administer GET are generally woefully undertrained and have no idea what they are doing. This leads to experiences like Snowathlete's above.
I am doing GET with her, but at the moment it would be better phrased GAT (Graded Activity Therapy) and to begin with we actually drastically reduced my activity levels. I have since been slowly building up and though I am in a bit of a dip right now I am generally a lot more able. Only a long way down the line would be actually consider any exercise whatsoever, and really it is going to be gentle walking for a long, long time. Only when I am basically free of PEM will we be introducing things that get the blood pumping.
So I can't answer your poll yet, but keep in mind what people mean when they say GET will vary widely.
When I was a mild patient I could get short term benefit from GET. In other words, for a week or two there would be some slight gains while I was in the very mild initial phase. Then I crash and wind up worse than before I started, long term.
On another occasion with massive nutritional support I did well for a while, but then went into long term decline. I never recovered.
I gave up on exercise (GET, anyway) in the mid 90s.
I don't think a lack of training explains my experience though, at that point I was walking and getting about ok, at least fairly short trips. If you believe in GET then my first prescription by the therapist was appropriate. The problem though is that GET actually isn't appropriate for most. There's no significant evidence it works yet it's the treatment of choice and there is under reporting of damage events. I certainly was not told there was any risk whatsoever, something I obviously know now that they should be telling people. If it was a drug and had such evidence it would be banned.
I've heard this claim from other practitioners before that the case they hear of where someone got harmed by GET was down to poor application, but this is said without sufficient examination of facts and is dangerous because it makes excuses for those events and then discarding them, rather than taking them onboard, investigating and concluding that it's down to the therapy being inappropriate.
I've found that those practitioners [edited for clarity] talking about GET being misapplied by those with poor training rarely seem to be interested in ensuring disciplinary action is taken against those who have harmed patients, or in providing compensation to patients mistreated. If poorly trained people were conducting surgery that harmed patients then I think that would be taken rather more seriously.
It does seem this line is just a way of saying 'GET that leads to people reporting problems is not real GET, only GET that leads to people reporting improvements is real GET.'
Having said that, if a small number of patients do really benefit from GET then they are likely to be under-represented here... probably off playing hockey or something. The poor results from PACE seem to indicate that this is likely to be less of a problem than I would have previously thought though.
When I was in 'remission'... I was able to tolerate GET (which wasn't what they called it - but was a gradual increase activity program I was told to start when I went to a pain management clinic). The end result was that I'd hit another flare up and EVERY bit of an attempt at GET would make it worse. Start it up again during the next remission, and I could tolerate it. Next time I crashed? Try it again? Can't tolerate it and it lengthens my down time.
Now I only exercise to tolerance level during remissions and don't try to keep pushing to a new level.
My approach to exercise was too intense at first and I paid the price. However, careful approaches ie GET didn't help either and just delayed the inevitable failure and consequences. I'll believe GET is helping patients increase their activity levels over the activity ceiling when objective evidence demonstrates it. So far it hasn't and actually shows no increases. Activity substitution and the placebo response are potential confounders for alleged successes. Maybe GET is helping a small minority but it is certainly over-hyped at the expense of the majority. I think most patients already stay as active as reasonably possible, some may need guidance on how to do that, but the rationale for GET is flawed.
I think when we find something to make us better FIRST, then gradual exercise can work. But something has to happen before we can tolerate any exercise at all. I remember very well when simply lifting up my arm to brush my hair was exhausting. This has nothing to do with deconditioning in my mind. It was a sign that I was very very ill with CFS.
During my treatment with chemotherapy drugs for cancer, the weakness/fatigue component of my illness was much reduced. Suddenly I could go for walks, and wasn't sure where my boundaries were. Now, ten years later, I find that tiny doses of the methylation supplements have enabled me to make progress with exercise. I still am troubled by chemical sensitivity, pain, and various other problems, but I do find now that I can walk faster, exercise more, and make some progress.
Last year at work the administration decided we could no longer use the elevators, and I was really worried. But after acclimating to going up the stairs, now I can even hop up two at a time, at least some of the time.
I still think about Rich Vank so often; may God bless him!!!
In your opinion excluding the fact that cancer is extremely deadly if not caught and treated in early stages,
which was more debilitating ,CFS/ME or Cancer?
By reading your post it seems to me that you have CFS/ME in remission..
Do you accredit chemo for this?
What chemo drugs were you taking?
Please do not take these questions the wrong way since these types of questions can be extremely touchy..
Why do you assume I am not interested in disciplinary action being taken?
Your first prescription, if you really were well enough to commence exercise, should have been 15 seconds, not 5 minutes. Anything that causes symptoms should be avoided, so extremely small periods of activity to test for symptom reactions would be necessary. Your therapist was terrible.
Sorry - may not have been clear. I wasn't talking about you, I was talking about medical professionals who say this sort of thing.
Ah! My paranoid mistake
Snowathlete, I think the point I should really make is that GET is different to different people. I am not clued up on how it was defined in the PACE trial, but I guess it's real world applications vary widely. What I am doing with my therapist could perhaps be called Assisted Activity Management, or something along those lines, as really we're focusing on creating the conditions for my body to heal, hence our first act to be cutting back my activity levels.
Interestingly my therapist is actually enthusiastic about me pursuing other therapies alongside this, but is just wary of things that have the capacity to make me worse. The quality of services provided vary greatly, and when I was in my previous foundation trust area, I was essentially told to gradually increase what I was doing then was discharged. I seem to be lucky with my current service who will keep me on as long as I want and are keen to focus on balance rather than force.
I'm unable to work out how to start a new thread but since this is on a similar ish topic of CBT etc i hope you dont mind me putting this here (sorry!) , the online patient.co.uk which features 'CFS' is going on about CBT being the best treatment out there and advocates GET too- i think it's trying to be balanced but is ultimately favouring the same old story. They're inviting people to comment on the site via a survey which runs out in 2 days from today so i just added my thoughts. Maybe other might like to do the same?
A mod should be able to help move this to a new topic for you. @Kina @Sushi
I think, where symptoms are stable to begin with, graded increase of activity is often going to be tolerated at the right levels and of the right (not too difficult) activities, which has been my experience, and I know that there are therapists who work in this way, sometimes calling themselves 'graded exercise' or a 'combination of graded exercise and pacing' and the like.
I've had GET and the problems came from a complete refusal to understand that symptoms were real and would not go away if they were ignored. If they were being flared up in such a way that not only wasn't settling down but was progressively getting worse and I pulled back, I would be harangued and repeatedly told that any pain would simply go away if I went at it for long enough. Mindful that I had been told to keep busy when I was first ill until I reached the point when I could barely walk, I held my ground. Also, the fact that I was moving activity forward at a speed that made my symptoms worse, substantially so at some parts of the year, was never questioned - all symptoms except fatigue were figments of my imagination or products of de-conditioning, that would go away if ignored.
Eventually, under provocation from a GET who wouldn't accept that symptoms weren't improving and new things couldn't be introduced, I pushed myself to a point where my symptoms went into free-fall, at which point I was told I wasn't motivated to recover. It took months to get my activity levels right again, largely as I felt bad about cutting things back and, in the end, made it much worse for myself, losing over two hours of (very light, largely lying down) activity in the day (about a third of what I was doing).
When I got things moving forward, it was on a principle that if something flares up symptoms outside a manageable range, it's too much and has to be left off or cut back. Also, there should be no increase it the rate of increase until your symptoms feel genuinely under control ie not setting you back for tiny infractions. If this principle were applied by GETs, with the proviso that not everyone is even going to be able to move forward at all, it might help people. The problem is that they are, in my experience, extremely rigid and dogmatic, and even those who have some sort of experience are vastly out of their depth with the severely affected (my own 'expert' didn't seem to understand the concept that some people had to stay in bed most of the day). I can imagine if someone were not very ill, then if they had a particularly problem-free recovery, they might just be able to keep with the pace. I'd imagine this becomes more rare the further down you go in the severity spectrum, the result being that Wessely, White, et al haven't even been able to fix results for GET from severely affected patients.
Nah,you are definitely not paranoid..
We have been mistreated by the medical and society communities for so long that our defense system is shooting it's patriot missiles off at every offensive suspicion..
This post has helped me to understand where you are coming from a little better
You can also try a Google Site Search
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