NICE ME/CFS guideline - draft published for consultation - 10th November 2020

@Suffolkres

Did they say why you weren’t allowed an extension? I too wish I could get one. There’s lots of things happened over the past 2-3 weeks and I would like to write a submission about how I think the access to care section and even the severe ME section needs to be strengthened substantially. But I’ve only got 2 days and need time to think properly and write it.

 

Does anyone know how to actually use the form they link to?

https://www.nice.org.uk/guidance/GID-NG10091/documents/comments-form

How do I write in it? It’s a pdf. Tried to find instructions and can’t?

 

It's a Word document for me. I've attached it below in case that helps.

 

Also write in your response that you are unable to comment on all the parts you would like to due to the time constraints imposed on you by the short deadline.

 

Thanks Andy. After how I feel this morning, I think that I won’t be able to do a submission in time, even a short one. It’s too much for me right now, I just got over enthusiastic thinking I could do it. But there’s no way. It’s ok, I’ll just write my thoughts and post it on the forum when I can.

 

This is why the NICE guidelines need to be really, really strict in what they say about Hospital care. I just got another “final offer” from the NHS hospital telling me they couldn’t definitely get a room but may just try to give me one on the day. This is after the other Hospital was going to tell them to provide me with “reassurance”. All I can say is, they don’t get it. Doctors and medical staff do not understand how vulnerable we are to harm and that I cannot go somewhere if I’ll be put on a ward and I will get worse. I was having to go through old emails yesterday and it made me cry, reading how much I’ve had to write to them and how desperate I’ve been, and what they were replying to me with or just ignoring me. Honestly at this rate I would question what I would even do in an emergency. I find it so hard to even tolerate the lights in my flat’s lift for gods sake, and that’s a few seconds.

The only protection for us is the NICE guidelines so it’s so important to get it right.

 

Article written by Jerome Burne

https://healthinsightuk.org/2020/12...ment-for-mecfs-was-wrong-and-damaging-repost/

 

Looking back at the 2016 link, there is a comment by "Ian" on 30 Sep 2016 that I'd better not repeat here. But amongst all the other excellent comments, this one really tickles me as a very eloquent piece of Anglo-Saxon, that in a way says it all .

And of course, very well done to Jerome Burne for writing about this again.

 

Jerome emailed me to say that the papers were being slow to take stuff - presumably with Covexit and Brid-19 and all so he put this on the blog. Hopefully he will get a piece in a daily shortly.

 

Just a few things re his piece;

"patients and therapists over the best way to treat debilitating chronic fatigue"

"ME (Myalgic Encephalitis)"

"The therapist said it proved the treatment worked, the patients claimed they found the treatment so ineffective and unpleasant that the results must be false."

"The patient activists, who had been campaigning for this change for years were on the committee that drew up the new guidelines. "

I am concerned about the way he has phrased this that implies (what a number of the bPS opponents of the new draft have been saying) that the changes have only come about because of a few patient activists on the committee.

(I don't know if Jerome Burne is aware of the recent articles (eg BMJ).)

 

Jerome is aware. His wording may not always seem ideal but he does his best to support patient interests.

 

What is HealthInsightUK? haven't heard of it before.

 

I think it may be basically Jerome Burne, the freelance journalist, but it may be a group of like minded people who like Jerome are suspicious of Pharma and medical cant.

 

https://healthinsightuk.org/about/

https://healthinsightuk.org/contributors/

 

so far only one reply to JBs piece

https://healthinsightuk.org/2020/12...reatment-for-mecfs-was-wrong-and-damaging-rep

 

https://www.dailymail.co.uk/health/...-told-exercise-despite-crippling-fatigue.html

 

Yes Jerome emailed yesterday to say he had finally got a result.