Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

I'm more worried about WAMES tbh - it might be better if they simply remove access to the file for the time being?

 

Could this actually cause any problems?

 

Not if NICE get a move on, but I don't want them to get into trouble.

I can't seem to contact them directly - does anyone else know them (Wames)?

 

Beds is one of the clinics which fully embraced PACE and the underlying dogma it was based on.

I hope we don't see clinics diagnosing ME patients with some other label to enable them to carry on treating patients the way they want to as before.

 

I think it should be expected that we will have to alert about most of those, I doubt this is a proactive thing. There is especially a lot of archived content out there, things no one will update but will remain published as is unless someone not only points it out but explains it in painful detail.

"Developing" things is basically all people seem to do in this field. They have developed many things and moved on to the next, nearly identical but with the old toys forgotten. This constant churning of "new" stuff means that most of the content produced is completely out of anyone's mind, they have long moved on to a new nearly-identical thing.

 

And she probably didn't have grey hair until the first publication delay.

 

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It's still there.

 

My first thought on seeing "Beds" was that you were talking about those things we sleep on, and particularly sick people spend a lot of time on.

 

What the new guideline does emphasise is that any treatment presuming illness to be due to deconditioning etc. is prohibited, which should make it much easier to block some of the old strategies.

 

The CDC made no effort to mention any change when they did it. It was in the stealth of night. Then someone noticed it and mentioned it on a forum, and then I asked about it. This is obviously a very different and public situation. I assume it will get significant press coverage. Unfortunately I assume part or a lot of the work in letting GPs know will fall on patients themselves, although that won't help patients who go to GPs without knowing what they have.

 

Surely NICE should push this new information out to medical professionals, and not rely on medical professionals to pull it from NICE.

 

When I began hyperbaric oxygen at an MS centre, the local neurology department did not want anything to do with it. Now they send patients as soon as they are diagnosed. There is also a specialist nurse who is very popular with patients.

Before, many patients did not want anything to do with the neurologists and found them unhelpful and unsympathetic.

We could do with the same changes. I think specialist nurses are very useful.

 

Hopefully we will find out soon how NICE plan to launch and publicise the new guidelines, as part of the bigger publication package should cover implementation.

However current confidentiality issues and the lack of information from NICE on their implementation plans make it hard for patient groups and the charities to plan, or a least publicly set out their plans.

 

ha ha ha ha ha ha! Unfortunately, that's not how it works. It's NICE's job to publish it - not to make sure everyone reads it.

 

I've also just realised that everything after that sentence is not from the briefing note to DHSC.

I wonder where it comes from...?

[edited]

 

Well it bl**dy well should be someone's job, to at least make sure it is under their noses.

 

Ultimately, it's a health provider's responsibility to *consider* NICE guidance, but implementation is up to them - obviously depending on their professional opinion of the patient's needs.

It's probably all of our jobs to put it under their noses if we want them to pay attention to it.

 

That's good, I hope, but they might work around that by blaming something else perhaps.

sorry I was being lazy, should have stayed in bed today.