UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Had hoped that the NICE website would have been updated at one minute after midnight, but I guess we will have to wait for the resumption of office hours in the morning.

Disappointing press response so far, given they generally seem to fail to grasp the main points that ME is more than just fatigue, but an abnormal response to exercise characterises the illness and that any exertion can often be harmful. Hopefully there will be some reporting by people that actually attempt to understand the issues in the next few days.

At least the SMC present a more balanced approach than might have been expected, though they continue to allow the Chalders and the Sharpes to persist in total denial. I guess they will continue asserting GET/CBT will cure us till they actually retire in reality and not as PR stunts.

[corrected some typos]

 

i think it's up!

 

Boom..

https://www.nice.org.uk/guidance/ng206

edit to update link to GL

 

But weirdly CG53 is still up

 

I was too impatient, it was published not one minute after midnight British Summer Time, but rather one minute after midnight Greenwich Mean Time (or for those of us more or less on the Greenwich meridian God’s time).

 

It is indeed: "Published: 29 October 2021"

HALLELUJAH!!

 

This does of course mean that now someone has to read it.

Given there are 250,000 of us I think we should divide the work - I'll take the 3rd word on each page.

Report back to merge results in a month?

 

From box 2

• Debilitating fatigue that is worsened by activity, is not caused by excessive cognitive, physical, emotional or social exertion, and is not significantly relieved by rest.
  
  should that read is caused ?
  
  

 

No.

They mean that we get symptoms without (not caused by) excessive activity in any of those domains.

Of course their usage of 'fatigue' to describe these symptoms is far from ideal.

 

I'm knackered, and off to bed. Don't stay up too long celebrating, for those of you for whom that's even vaguely an option

 

I concur. Carry on.

 

The minutes of the Round Table are also there, and I have a concern as to NICE's take on CBT (emphasis mine):

"In the main, what is being delivered matches what the guideline recommends." (!)

"NICE explained that the wording in the guideline reflects the change in emphasis of the recommendations on CBT. That is, it may be beneficial for symptom relief rather than as a cure for ME/CFS. . ."

Just skimming at random: RCPsych's falsely claimed that the London criteria mandated PEM (the committee set them right on that point). And this comment: "We contend that a Committee that remained in equipoise..." - I wonder who wrote that? RCP London's stakeholder response specifically attacks @Jonathan Edwards (pp696-697)! Some of the stakeholder comments are horrific.

This is extraordinary. Utterly extraordinary. I have no words.

 

I can see the need for a book to be written about this whole process and what it has exposed. There's way too much there for just a series of articles.

 

I have an emergency dental appointment for a broken tooth at 9.30am tomorrow (the time of day I am usually asleep). So I wouldn't have been able to sleep tonight anyway. At least all this reading is taking my mind off the dentist appointment!

 

Pulse coverage: https://www.pulsetoday.co.uk/news/c...ecommends-personalised-care-and-support-plan/

 

He needs to be reported for already going against the NICE guidelines and as he runs a centre that NICE say patients should go to and DO NO HARM most definitely needs a slap with a wet cold fish. I have one ready

 

We can only keep pointing out they they do not recognise PEM and the impact on what Baroness Finlay called disordered energy metabolism. If someone who has not worked with or researched ME can see issues then someone who has for decades is doing something wrong.