"Who is responsible?" blogpost by Sally Burch

[Dolphin]

By Sally Burch

Who is responsible?

Who takes responsibility when National Health Service guidelines cause medical harm?

I am asking because, the National Institute of Clinical Excellence (NICE) guidelines for myalgic encephalomyelitis, ME, still recommend two controversial therapies: Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT).

continues at:

http://sallyjustme.blogspot.ie/2016/08/who-is-responsible.html

 

[Dolphin]

Yet General Practice doctors consult NICE guidelines, see the word "exercise" and regularly tell their ME patients to get out and starting exercising.

I too was given this advice at the start of my illness. "Three short brisk walks a day", I was told. It didn't work for me, and I doubt it would work for anyone with this debilitating disease. Why would it? One of the main problems with the disease is that exertion of any kind exacerbates all symptoms. Indeed, in my own case, trying to follow the advice I was given led only to increasing disability.

 

[Keela Too]

Thank you @Dolphin for sharing this post. I really wish that writing could make an actual difference, but I guess we can just hope we somehow build momentum,and eventually somebody properly notices..

 

[Comet]

Thank you @Dolphin for sharing this post. I really wish that writing could make an actual difference, but I guess we can just hope we somehow build momentum,and eventually somebody properly notices..

Thanks for taking your precious energy to write your latest blog post @Keela Too. I think articles and blogs like yours make a difference in many ways. You are part of the patient revolution! I consider strong, out-spoken women like you to be motivational and am very grateful for your efforts.

 

[Keela Too]

Ah thank you @Comet xx
I have been doing rather better of late, so glad to be able to put the extra spoons to good use!

 

[Comet]

Ah thank you @Comet xx
I have been doing rather better of late, so glad to be able to put the extra spoons to good use!

I am so glad to hear you are felling better lately. Of course, I realize this is relative.