Solidarity to everyone in the community. We've been hit hard by the cancelled new NICE guidelines, but we have each others back, and that counts for a lot.

:spoonie_anarchism: :spoonie_anarchism: :spoonie_anarchism:

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Why the cancellation of the new NICE guidelines matters, MECFS 

To people outside the community who might not know why this matters... The old guidelines included so-called treatments (GET - Graded Exercise Therapy & CBT) that have been proved, at the least, to do nothing, but at the worst, have caused serious damage to a lot of patients with ME. The new guidelines acknowledged & removed them.

By not publishing the new guidelines, doctors etc, can continue to push these damaging treatments. The DWP can continue to push patients to undertake these treatments and deny anyone who refuses, their benefits. And research into ME continues to be stymied, by both stopping people researching the physical causes of ME, and stopping investment in research.

We thought we were finally seeing the end of the BPS (biopsychosocial) model that GET & CBT are based on. Instead, they are continuing to maintain their control over people with ME.

This will also impact on people with , which has a lot of similarities to ME, and who the BPS lot, are now going after.

@MECFS @ChronicIllness

Why the cancellation of the new NICE guidelines matters, MECFS 

@GwenfarsGarden @MECFS @ChronicIllness That's a good explanation. Are these local or international guidelines?

Why the cancellation of the new NICE guidelines matters, MECFS 

@Corina @MECFS @ChronicIllness UK only guidelines, but they can impact more widely, particularly on investment & research.

Why the cancellation of the new NICE guidelines matters, MECFS 

@GwenfarsGarden @Corina @MECFS @ChronicIllness the CDC (who set federal health guidelines for the US) has recently proposed new CFS guidelines that are very similar to the *old* NICE guidelines

So if NICE doesn’t publish, it’ll make it harder for people to be like ‘no please ignore what the CDC says’ because there wont be anyone contradicting them

Why the cancellation of the new NICE guidelines matters, MECFS 

@Satsuma @Corina @MECFS @ChronicIllness bloody hell. The CDC used to have GET/CBT in their guidelines, but they were pulled a couple of years ago. That's terrible that they want to add them back in. Yes, this will make it harder. *screams*

Why the cancellation of the new NICE guidelines matters, MECFS 

@GwenfarsGarden @Corina @MECFS @ChronicIllness yeah they pulled the old guidelines in 2017 i think? But never replaced them so for a while there was *no* official guidance. Someone, not unreasonably, decided not having any guidelines was probably bad & commissioned a systematic literature review. Its not official yet but….

& yeah the timing between the two really couldn’t be worse

Why the cancellation of the new NICE guidelines matters, MECFS 

@Satsuma it really couldn't be. The systemic review should come to the same conclusion that NICE did. But NICE halting publication won't help. Sigh.

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Rage.love

Generalist Hometown instance with a strong focus on community standards. No TERF, no SWERF, no Nazi, no Centrist.