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If NICE don't publish the new guideline we are stuck with the old one indefinitely. Our community needs to see it. NICE have played right into the hands of the Royal Colleges by delaying - they hold every ounce of power to make it worse now unless NICE reverse their decision.

https://www.independent.co.uk/news/health/nice-chronic-fatigue-exercise-therapy-covid-b1904127.html The Independent have picked up part of #MEAction UK press release too.

I'll deffo take the idea back to #MEAction @Snowdrop and @tomnext. Can't make any promises as capacity is low atm, but I do see this as an important area.

Live from the desert!

https://www.sheffieldmegroup.co.uk/post/meet-cort-johnson-of-health-rising Register here to join the event: bit.ly/CortJohnson_SMEFG As always the recording will be available to view on Facebook and YouTube afterwards, and will be broadcast live to Facebook.

This was discussed a while ago and I'm unsure if we actually got to featuring/sharing them. We totally should tho. I'll raise it.

Yep I'm a member and sometimes volunteer. And yes keeping an eye but do always feel welcome to drop our communications officer Elyane a line on info@sheffieldmegroup.co.uk I would guess NICE won't consider this a major conflict of interest for Chris Burton as it's not studying ME/CFS... This...

Sorry for slow reply, been attempting to remain off duty over the break. Unfortunately this isn't something we've had capacity to advocate around due to work on NICE, and the UK volunteer team isn't back until the 11th, but I would strongly support all individuals who can email their MP about...

Ah yes good spot Andy.

They do also say: Still, I can't comprehend why it's fine to mention POTS in the guideline but ME is out of bounds.

So no Lynne Turner-Stokes or Trisha Greenhalgh - wonder why Greenhalgh said she and Turner-Stokes were on the guideline committee... Trudie Chalder however is a member.

Not sure if anyone has yet pointed out on this thread that Turner Stokes is on the NICE Long Covid committee... :banghead: Edit to add evidence: https://www.s4me.info/threads/longcovid-and-cfs-nice-guidelines.17338/ Guessing Turner-Stokes at least won't want them to be aligned anymore!

Just to say that this is exactly what they did with comments on the scope 2 years ago. If you look at the scope consultation document you'll then see they are ordered by page and line number so that comments from different organisations in the same points are collated next to each other. It is...

Thanks for posting Andy. Super proud to have worked alongside a fab bunch of people at #MEAction UK to make this change happen, and for the many many people who sent us their stories along the way - I believe the 6-metre-long care we sent earlier this year genuinely had an impact on Helen...

Sorry for posting this so late! 2:30pm Friday 20th November Dr Diane O'Leary, philosopher and bioethicist is giving an online talk hosted by Sheffield ME & Fibromyalgia Group. Seeing the big picture: ME, Fibromyalgia, MUS, FND and Long Covid Information and registration here...

Really pleased to have been able to work with #MEAction to get some better coverage in the Guardian (of all places) around ME. Thank you especially to our press volunteer for her work on this. Agree though that it is so deeply ingrained that exercise can only ever be good - gonna be a long road...

@Suffolkres it's in the supporting documentation here: https://www.nice.org.uk/guidance/gid-ng10091/documents/supporting-documentation Parts of it make for pretty depressing reading, a bunch of quotes from children demonstrating awful treatment: “my mum wasn’t allowed to come in with me… it...

:yuck::banghead:

My reading is that CBT is still an entirely optional adjunct (e.g. non essential) therapy. However I take your point that what Symptom Management on page 12 links to is odd. It excludes orthostatic intolerance, but includes psychological support. Despite the former being noted as a symptom of...

Just to clarify that CBT is not part of the management plan as defined in recommendation 1.5.2 (page 12), nor is physical activity, but physical maintenance is.