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A debt of gratitude

August 26, 2021

Disclosure: I have lived with the discrete illness myalgic encephalomyelitis since 1981. I have written extensively about the NICE process (amongst other topics) in relation to this illness. I work independently and I am not affiliated to any organisation or group in the ME community. For more information see About.

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Yesterday, I published a post entitled “Update on the “paused” NICE guideline for “ME/CFS”: the case for individual/community publication.” For the full background to this post, please refer back to that post. 

56069A84-1601-47EF-A8AA-952FE3EE7E6DIn that previous post, about two-thirds of the way down, I made this statement:

“My assessment of the guideline

It’s rubbish. It still contains far too much latitude for abuse of patients. However, it is less rubbish than the existing guideline from 2007. It is a significant improvement on that and it is the best we are going to get for the foreseeable future.”

It’s right to say that I rarely use such strong, abrupt language. However, that assessment remains my view. 

A few hours after publishing, I received a communication from someone who was extremely angry and upset as a result of reading my post. This reader listed some of the huge improvements to the guideline and reiterated the fact that “ME/CFS” experts and patients on the Guideline Group had given up their time and energy for people with ME.

The reader then went on to say, in the strongest possible terms, that they felt that I had been very unfair in dismissing the achievements of the Guideline Group as “rubbish” (the reader is not a member of the guideline committee). 

 
I replied as follows (edited): 
Thank you for your frank response….. I appreciate it. 
I share your frustration, having spent the last ten years wrecking my own health researching and writing, as well as providing information, advice and support, both publicly and privately, often to [deeply distressed] individuals. I accept, like you, that there is a huge physical and emotional toll in doing this work……..
I am also grateful to you for having the courtesy to reply directly to me…….
Incidentally, the full context of the quote you mentioned gives a rather different tone to what I said:
“It’s rubbish. It still contains far too much latitude for abuse of patients. However, it is less rubbish than the existing guideline from 2007. It is a significant improvement on that and it is the best we are going to get for the foreseeable future.”
Thank you again for getting in touch. 
 
I’m sorry if what I said caused any offence to guideline committee members. It was never intended that way. However, I’m grateful that this matter was raised as it gives me the opportunity to offer my thanks to everyone who gave their unpaid time and sacrificed their health to work on this vitally important process.
 
I, and many others, owe you a debt of gratitude. Thank you. 
 
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