Proposed Letter to NICE

Looks a positive letter, and I would be happy to have my name added.

 

Good letter. Just a couple of minor points:

I would re-write the above sentence to make it easier to read. Something like: “Not only did it seem unusual for NICE to state that, in its view, the results confirmed its recommendations as appropriate, but the speed at which the statement followed publication appeared unwise.”

I don’t accept that this is necessarily true. I would say it was a purported attempt. In my view it was actually an attempt to prove that CBT and GET are effective treatments for ME/CFS.

Thanks to all who have worked on this.

 

I can recognise the difference in the two points, but perhaps they could be combined?
So that transparency is described as applying to both the process and the choices made?

 

Thanks for all your suggestions, and I agree that they are valid points, but I have decided to stop tweaking and let the letter stand as it is. It's only the start of a conversation, so it doesn't need to be perfect. Otherwise I'll be tweaking all through Christmas, and that's not a pretty sight. It's the overall tone and message that are important.

And of course, there is no reason why any of you shouldn't also write to him expressing your concerns.

I'll transfer the letter to a new, locked thread soon, then if you want to inform others about it, you can link them to that one. I'll not actually send it until early January - there's little point in sending it over the Christmas break.

If you would like me to add your signatures, you can do so until early January, but they won't appear on the version on the locked thread unless you tell me tonight.

 

Once you have produced your final version and we've got it in it's separate thread, we could start a petition to more easily collect signatures? My personal opinion would be that the petition be left open to continue collecting signatures but you could refer to it at the point that you send the letter in, i.e at that point in time the petition had collected so many signatures of people agreeing with the content of the letter. And I'd assume that, due to the impact of NICE guidelines worldwide that we'd accept non-UK signatures?

 

@Sasha The bolded bit could be a bit tricky, because no matter how much you try to identify roles with potential COI there will always be others - friends, family, classmates, etc. Does it need to be less specific but try to eliminate any conflict of interest. Require to declare potential COI.

Struggling with iPhone at minute.

 

@Graham a comment from our Facebook page that I promised to copy over to this discussion.

 

Should the drafting of a letter be public before it is finalised?

 

Yes.

 

I agree with this. It is a strong possibility the authors already had built in bias to prove their favoured treatments worked, rather than a truly objective (that word again!) assessment of efficacy.

 

Seeing as this is an open thread as against For Members Only I sent the link to my husband. His comment was "It's a damn fine letter" and he'd like his signature to be added too. John Wallace.

 

Please add my name too, Graham - Veronica Jones

 

Very good indeed. Thank you.

 

Iain McGinn

 

We had discussed it and finalized it elsewhere, but nobody is perfect, and on a forum like this, nothing is ever "finalized". I value the input, the comments, the advice: it's what makes this forum zing. But equally, I have to decide when to stop. This is only going to be one of a large number of arguments and presentations put forward to NICE: feel free to write yourself with a different slant - they need to know how strongly we feel about this and how clearly we see why it is wrong.

I don't have a problem with letting people see that we are fallible, nor that we help each other out to improve things: that is one of our greatest strengths, and something that I am proud to be a part of. Equally, the good-natured way in which we make suggestions, but accept that they won't always be acted on: that too is a very strong plus for this forum. Greatly appreciated!

 

Excellent letter @Graham, please add my name.

 

Heerrrruuummmpphhh! [Sulk!] ...

Sorry Graham, I was in iPhone mode yesterday, and missed your earlier post.

 

Hi @MEMarge , I know I should know your name, but each of my two brain cells are blaming the other.

@Barry , I never took it any other way than a helpful comment. Well, apart from the sulking. And boasting about having an iPhone.

 

Well done @Graham. You've put together a good letter.

I would, however, like to make a couple of points:

1. I would like to see highlighted, the fact that the particular brand of CBT advocated by the PACE trial crowd, is directive (hand in hand with GET) and therefore not of the supportive kind, which CBT is conventionally thought to be.

2. On the back of the robust arguments you have made against the use of CBT and GET, I would reiterate the call for them to be suspended / removed from the current guideline as a matter of urgency in order to protect patients from potential harm.

Thank you for your efforts.

 

Thanks Paul. I'm noting all the comments, and when/if we get a response, we may well use them in a reply.