Proposed Letter to NICE

How about doing both?

 

Not sure if it's been mentioned anywhere here yet, but NICE are advertising for a Chair for the committee. Had this link yesterday in an email on a List I'm a member of
https://www.nice.org.uk/get-involved/join-a-committee/chair--diagnosis-and-management-cfs-me-gc

 

Great letter - takes a bit of reading and concentration!
would love to add my name. Will PM it to you.

Personally i think a long list of patient and patient advocate names has more heft.

 

That's an interesting advert, @ladycatlover , especially when it declares that specific conflicts of interest, whether financial or non-financial, personal, family or non-personal, may exclude an applicant.

@Trish , I'm happy for it to be public - putting it here was a conscious decision. I just wanted a pause before touting it on Facebook etc to give folk here a chance to point out anything that needed rephrasing etc.

 

https://www.s4me.info/index.php?thr...hair-for-the-me-cfs-guideline-committee.1614/

 

Personally, I think a web page looks more formal especially to an external party or organisation. I appreciate its only a cosmetic point, it might help it have more impact. One of the other open letters is spread over multiple posts for example. A forum thread can also easily go off topic, multiple comments, side conversations etc which can potentially detract from the open letters objective.

Just my 2 cents though.

 

Millions Missing Canada will support the letter.

I recently chatted with a person from Health Quality Ontario (Ontario is Canada's largest province) and she said they turned to NICE for treatment guidance for ME. I think l gasped.

I briefly explained the history and current contoversy with NICE. Very surprisingly she requested i meet with and her colleagues in mid January and this letter will support my contention.

 

This is an excellent and important letter, Graham.

Just a small point - do we need to define the bolded bit? How do we define who is a colleague or not, when academia is so highly networked?

For example, would someone who worked in the same department be a colleague? Someone who had co-authored a paper on a topic other than CBT/GET?

@Jonathan Edwards - do you have a view on what might be a suitable definition?

 

The final version of the letter could be posted on a new thread that could be immediately locked, perhaps.

 

I was going to propose deleting this thread once all the discussion had died down, then creating a new thread, possibly locked, with the updated letter. Either that or suggest that we remove most of our comments from this thread so that it is less confusing for outsiders to dip into.

I'm not sure that the letter has to be watertight in the same way that a study would. It is a conversation with Sir Andrew, raising points of concern rather than a reference point, so I don't think we have to be too pernickety.

 

My suggestion would be once you are finished, create a new thread with the finished letter, and then we lock this thread after putting the link to the new thread in the first and last post.

 

That's a good idea, @Andy . In the meantime, is it possible to change the title of this thread to "Proposed letter to NICE"?

 

Done

 

Perfect, I didn’t know you could do that.

 

The IOM is now the National Academy of Medicine, not the National Academy. I'd also spell out the other things (NIH = National Institutes [note the plural!] of Health, IOM = Institute of Medicine).

 

Excellent letter. Do you think we can add a sentence stating that ME has to be recognised as a biomedical condition and investigations and treatments proposed by the new NiCE guidelines must be biomedical and all psychological, psychiatric are a form of health discrimination. Failure of NICE to give the right proposals has been dangerous and harmful to patients plus it has breached patients equality rights to biomedical care.

I very strongly concur that no one who has been previously involved in the committees be allowed to advise again, especially Ester Crawley. As Ester Crawley's research has been shown to be unethical and harmful to children none of it should be allowed to be considered.

 

Lots of interest from Facebook in signing the letter. I think that perhaps using change.org (or similar) to host a petition that allows for people to sign to say that they support the open letter may well be the best way to go.

 

Can I have my name added to he list, please?

 

Can I have my name added to the letter, please? Thx

 

I forgot to ask in my earlier post to be added to the signatures. Maggie Wallace.

Thanks @Andy for me alerting me to the thread on the advert for the Chair of the committee. I'm still at sixes and sevens after journey on Solstice day to Wales.