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

Status
Not open for further replies.
Peter Trewhitt said:
Opposing MEGA point out on their Facebook page that the Bedfordshire Chronic Fatigue Service appear to already be seeking to subvert the new NICE guidelines by offering CBT and GAM (graded activity management) as treatments.



Obviously it needs clarifying if they include ME/CFS within ‘people living with … … … medically unexplained fatigue as their main symptom’ [added - though the confusing sentence about referring people not diagnosed with CFS to other services implies they do.]

This also highlights the need to ensure that NICE updates any other guidance, such as those that more generally relate to fatigue, are updated in line with the publication of the new ME/CFS guidelines publication.
Click to expand...

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.
 
Lucibee said:
I'm going to keep an eye on that - because if that doesn't automatically update when they release the new ME/CFS guidance, they need to be told about it.
Click to expand...
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.
 
Lucibee said:
I'm more worried about WAMES tbh - it might be better if they simply remove access to the file for the time being?
Click to expand...

If you’d like to get in touch, please ring or email our helpline or use the contact form.

Email: helpline@wames.org.uk 029 2051 5061

Chair Jan Russell jan@wames.org.uk

Youth and Care Officer, & Media Contact
Sylvia Penny 029 2051 5061, sylvia@wames.org.uk

Volunteering Coordinator
Sharon Williams sharon@wames.org.uk

Web queries
Tony Thompson wames@myphone.coop
 
Joel said:
I agree, given we are stuck with (non curative) CBT in the new guideline, what we need is to influence how that is now implemented so that it is only for psychological suppport in coping with having got this awful disease and not warped into something brainwashy focused on the disease itself. There must be something similar in place in other diseases, something with realistic limits, that is already respected to some degree and can be adopted in ME/CFS?
Click to expand...
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.
 
Lucibee said:
I'm going to keep an eye on that - because if that doesn't automatically update when they release the new ME/CFS guidance, they need to be told about it.
Click to expand...

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.
 
dave30th said:
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.
Click to expand...
Surely NICE should push this new information out to medical professionals, and not rely on medical professionals to pull it from NICE.
 
Trish said:
I think we need a combination of consultant led accessible specialist nurses to help with symptom management including pacing and medications, arranging practicalities like carers and finances, and emotional support with dealing with having a chronic illness; and information about patient support organisations for the person to join and get advice and support from if they wish.
Click to expand...

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

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

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.
 
Barry said:
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.
Click to expand...

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


MeSci said:
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.
Click to expand...

sorry I was being lazy, should have stayed in bed today.
 
Status
Not open for further replies.
Back
Top Bottom