He's allowed to tell his story but 'finding GET to be helpful' does not equate to being helped by GET. I see no need to suggest his ME is atypical. In adolescents significant improvement or recovery seem to be fairly common and will likely occur at a time when treatment is being provided but that does not mean the treatment caused the improvement. Moreover, his subsequent relapse sounds familiar enough for ME. I hope he recovers again but it is clearly not guaranteed.
It is interesting how hard it is, whether for doctors, charities or patients, to accept that ME may genuinely be a 'chronic neurological disease'. Everyone wants to be optimistic but for lots of other conditions the long term nature of the problem is accepted - diabetes, scleroderma, hypertension, bipolar disorder, Parkinson's disease, whatever.
I am not suggesting one should be totally gloomy. There are lots of PWME known to the forum who have reached a stable enough condition to lead reasonably satisfying lives, just like lots of people with diabetes, but in either case there's rarely true 'recovery'.
It has taken me a long time to get head around this. But the key question is simple - if ME really is a chronic neurological condition, as it says, why the heck should exercise make it better?
Your last comment always makes me think of the ugly sister trying to get her oversized foot in the glass slipper for the kingdom. Never going to work no matter how hard you try and make extending activity if you have PEM after reading a book, how do they think extending your walk distance is going to cure ME.
I think the problem here with accepting that ME has no full recovery is that we have been drip fed false accounts of recovery. As they would say in CBT and GET world what is recovery? We are also told that unless you think there is possibility of recovery you (as patient or carer ) are not doing your job. This idea gets stuck with everyone, due to this kind of reporting; "You don't want to say you have to be kidding me" to the people that are telling you about the journey to recovery, but that is what is shouting in your head. This is what is so wrong with this article.
The questions needing answers here are
1/ What was his recovery? was he able to live a full and active life as we would recognise it? My son's paediatric tells me that they had recovered but they are unable to work full time, not able to doing extra things with their children without resting
However they are not in the state they once were where they were bedbound. They still think after telling me this I should extend my sons activity level. Now to me this does not sound like they have recovered, but living at a better level of life? This could go down again if they do not get the balance right when they are hit say with another stressor to their body.
2/ What level is he at now,
3/ what caused his down turn in his health or ability to keep active. This is the most important one that I would like answered.
4/ Did he have PEM when recovered and what sort of PEM does he have now.
5/ Over exercising for anyone is bad just ask top trainers, it is considered toxic to the heart.
We need to look just as closely to those that have got better and then relapsed, why and how will enable us to understand so much more about ME
