Hey Esther, I want to just say that your illness experience shouldn't be degeligimised here just because you disagree with people on certain points. I think the whole "psychological" thing is a touchy subject for some, because, as a community, we have been abused by the medical/psychiatric profession in such a way. Its healthy to question things as you do and to try and maintain some neutrality in evaluation of certain procedures.
I don't think anyone on an internet forum could deligitimise me! I quite understand that some people will be touchy about these matters, and I've been trying to handle them delicately. Thanks.
"Originally Posted by Esther12
If I increase my activity levels, my fatigue gets gradually worse. Suffering more muscle pain, trouble with concentration, etc. It just all gets progressively worse in relation to the ammount of activity. When I was first ill and pushing away, I was vomiting, minor halucinations, etc. I never got a sudden onset of a 'bust' though (or whatever term you might prefer). I just got progressively worse until I took the time to rest up more, and then my level of fatigue would gradually reduce.
I don't see why it would be difficult to understand why I would not continue to increase my acitivity levels, seeing as it seemed to bring no beneift, and only made life progressively more difficult."
That makes more sense.
In your previous post, you said:
"I did not assume that 'complaints of fatigue' necessarily meant a worsening of symptoms. I thought it was more likely to refer to the slight increase in exertion leading to a worsening of fatigue. As I said, much depends upon intrepretation though."
So in fact you appear to be agreeing with me that the authors have not expressed well the problems that can face patients when they try to increase their activity levels. It is not simply a little fatigue that stops patients increasing activity.
I don't see any contradiction between those two posts. I do not expect I would get such extreme a fatigue reaction from a cautiously implemented GET program, but I also think it would probably bring a worsening of fatigue without bringing any benefits.
Possibly I wasn't clear enough when talking of 'worsening of symptoms'. You used this as distinct from merely an increase in fatigue, so I'd assumed you meant something like a 'bust', whereas perhaps you see what I would describe as an increase in fatigue (which for me, includes muscle pain, concentration etc) as requiring a broader term like 'worsening of symptoms'.
I challenged her on the suggestion that more activity would bring on just a bit more fatigue. With challenging she agreed, that more activity would bring on more than just a bit of fatigue. So it is detailed questioning that brought clarity on the issue. Not delegitimising her illness.
From what you've written, it seems like we're still not clear. I do not see 'fatigue' as being only a minor problem. I consider myself to be pretty severely ill because of fatigue. The different aspects of fatigue can be dissected and described, but I don't see them as necessarily distinct. Muscle pain, trouble concentrating, etc, etc, all fit within my conception of what 'fatigue' is.
A bit more activity brings on a bit more fatigue.
I was challenging what they wrote, through you. You agreed that you would get more than just a little fatigue if you tried to increase your activity levels. So proving that that their description did not adequately describe the symptoms some people face or why people don't keep increasing their activity levels.
Hold on... the protocol was not predicting responses in that section, it was offering guidance on how to respond to particular responses. The protocol was also so loose that if followed cautiously, it should not lead to people having anything like the sort of extreme fatigue responses I stupidly pushed myself to. I think you're interpreting the protocol in its most damaging manner - and the fact that it can be interpreted in this way is indeed a problem, but it can also be interpreted in a far more cautious and (I think) sensible manner.
But is that enough? You go up to a certain level of activity and you start getting A LOT more symptoms. I think it's better to reduce to a level where you don't have symptoms. I think that is a safer option.
Also how realistic is to suggest that people won't increase when they start feeling symptoms. In reality, most people don't put the exact same burden on their bodies every day through mental, physical or emotional exertion. About the only people who might be able to approach doing that are hermits who live in a bubble and don't communicate with others.
As Ellen Goudsmit PhD has said before, the important issues regarding the differences with regard to GET and pacing are with regard to a ceiling of activity. GET proponents and models don't mention there is a ceiling of activity that many people will not be able to go past in the course of a GET program. And it's not simply because patients are wimps and scared of a little fatigue. Or misinterpret the symptoms of their bodies.
You keep doing things like adding in the A LOT I capitalised. It makes things sound worse, but it means we're often talking about different things. We can be imagining very different circumstances being described by the same words.
I quite agree with your middle paragraph about the difficult of actually applying GET.
I think the most common conceptions of GET are seriously flawed. I'm sceptical as to the use of psychological and behavioural treatments for CFS. I've not said otherwise. I just think some people's attacks on CBT and GET are too broad and can be exaggerated by the personal experiences we've had with them, and a desire to reject the prejudices they can feed.
And does the latter interfere with your ability to do the former? e.g. you won't write in to challenge CBT and GET because you think it might would be misinterpreted in some way. If everyone does this, we are left with the current situation.
With everything, it can be difficult to communicate clearly, but I don't think there's any particular tension here. I certainly don't think there's any particular reason to avoid saying what I think about CBT and GET just because it's easy to be misinterpreted. I suppose I might be more cautious because I've not taken the time to be sufficiently well informed, but I think you can be honest about your ignorance and still express your opinions based upon what you do know, and this can be of some use. I'm always hopeful that someone better informed and brighter than myself will come along and express my oppinions for me though (especially today - I feel rather foolish for typing away in this thread).