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

Simbindi said:
Absolutely. When I was in hospital the nurse that showed an interest in understanding ME/CFS went straight to that site to learn more (on his phone). That was incredibly frustrating.
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Are the charities not going to make the NHS website a priority? This is a mistake. I understand implementation issues are key, but this is a part of that as practitioners are going to look it up.
 
Ariel said:
Are the charities not going to make the NHS website a priority? This is a mistake. I understand implementation issues are key, but this is a part of that as practitioners are going to look it up.
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I would think sorting the NHS website to be an intrinsic part of implementation, given it is likely a first port of call for implementers to reference.
 
Trish said:
They may be doing so. The could be asked on their social media or by email.
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The MEA was asked this by someone on Facebook after the guideline was released.

Charles Shepherd replied that it was on the MEA's "to do" list.

ME Association on Facebook

ME Association

"Thanks for all these very helpful comments. Yes - this NHS information needs much more than a quick NICE update. It's on a very long list of 'to do' following publication of the new guideline... CS"
 
There's a heartbreaking post on Reddit today from an nhs patient who is still receiving non-compliant (and atrocious) advice from an nhs physio in what sounds like a cfs or fatigue clinic.



The post is long, but here are a couple of quotes:

It felt like she was saying that I have CFS because I'm in bed not the other way round. All of her advice was based on me doing more activity than I am capable of at the moment and I'm scared to follow her advice because my condition has gotten much worse over time because I was undiagnosed for years and had no idea what was going on so I just kept overdoing it.

I feel like I've been beaten down by the NHS over and over again and I can't take it anymore. I feel so alone and isolated and I don't know what to do, I'm really really sick and I desperately need help but I don't know where to get it.
​
Thankfully the responses there are clear, supportive and anti-get. But this should not be happening. It needs to change. Unacceptable.
 
ola_cohn said:
There's a heartbreaking post on Reddit today from an nhs patient who is still receiving non-compliant (and atrocious) advice from an nhs physio in what sounds like a cfs or fatigue clinic.
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That Reddit Post broke my heart and brought back so many painful memories and emotions. This needs to stop.

I've had ME for nearly 25 years, and you sort of get used to always feeling incredibly unwell, and find ways to cope and make the most of things. But I do remember at the start how terrifying it was not only suddenly to be very unwell, but to seek help and instead be given the opposite.

And that would have vaguely been ok, if they'd just been honest and kind and said we're sorry, we just don't know how to make this better, but here's what we're going to do to help you cope... Whereas the reality, for me, involved being brushed off, disrespected, called lazy, told i must like the attention too much, denied treatment for other things, and manipulated into trying GET which left me in a wheelchair, and CBT which left me completely unsure for a long time of what was real and what wasn't, was i just making it all up? Could i get better if i just tried harder?...

Having ME is bad enough, but the damage these people do... The phrase, "kicking a man when he's down." comes to mind.
 
ola_cohn said:
There's a heartbreaking post on Reddit today from an nhs patient who is still receiving non-compliant (and atrocious) advice from an nhs physio in what sounds like a cfs or fatigue clinic.



The post is long, but here are a couple of quotes:

It felt like she was saying that I have CFS because I'm in bed not the other way round. All of her advice was based on me doing more activity than I am capable of at the moment and I'm scared to follow her advice because my condition has gotten much worse over time because I was undiagnosed for years and had no idea what was going on so I just kept overdoing it.

I feel like I've been beaten down by the NHS over and over again and I can't take it anymore. I feel so alone and isolated and I don't know what to do, I'm really really sick and I desperately need help but I don't know where to get it.
​
Thankfully the responses there are clear, supportive and anti-get. But this should not be happening. It needs to change. Unacceptable.
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@PhysiosforME
 
ola_cohn said:
There's a heartbreaking post on Reddit today from an nhs patient who is still receiving non-compliant (and atrocious) advice from an nhs physio in what sounds like a cfs or fatigue clinic.



The post is long, but here are a couple of quotes:

It felt like she was saying that I have CFS because I'm in bed not the other way round. All of her advice was based on me doing more activity than I am capable of at the moment and I'm scared to follow her advice because my condition has gotten much worse over time because I was undiagnosed for years and had no idea what was going on so I just kept overdoing it.

I feel like I've been beaten down by the NHS over and over again and I can't take it anymore. I feel so alone and isolated and I don't know what to do, I'm really really sick and I desperately need help but I don't know where to get it.
​
Thankfully the responses there are clear, supportive and anti-get. But this should not be happening. It needs to change. Unacceptable.
Click to expand...

@PhysiosforME
Sadly I think you may be very busy
 
Sly Saint said:
I would have thought that getting the NHS England website to clearly explain just what is in the new guidelines would have been top of 'the list of things to do' followed by the other NHS sites then there is a clear point of reference to what is required.

The biggest omission is no information on PEM, which needs to be put in as the defining symptom of ME.
As it stands individual clinics can all make their own interpretations and cherry pick from the guidelines.
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Charities are already on this, as are NICE.
 
Dx Revision Watch said:
It's on a very long list of 'to do'
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why I said it should be top of the list.
The NHS have reviewed and put back the old MEA video. The MEA could have at least come up with a new one that explains PEM properly there are several out there that could be used as a start point.
But presumably they agreed to have the old one reinstated.

I still haven't been able to find out about the CIAG
https://www.s4me.info/threads/nhs-e...ice-publication-date.23065/page-3#post-388431
 
Sly Saint said:
why I said it should be top of the list.
The NHS have reviewed and put back the old MEA video. The MEA could have at least come up with a new one that explains PEM properly there are several out there that could be used as a start point.
But presumably they agreed to have the old one reinstated...
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I don't know, but I doubt they were asked.

I'm not on FB, I deleted Dx Revision Watch on FB, in 2010, so I can't raise it with them there. Not sure who is managing their Twitter ATM but probably better taken up directly with the BoT members. I can give you Neil Riley's (Chair BoT) email address if you want to take it up with them.
 
https://www.nhs.uk/our-policies/governance-of-the-nhs-website/
Governance of the NHS website

https://www.nhs.uk/our-policies/content-policy/
Content policy


Chair of the Clinical Information Advisory Group (CIAG):

https://www.lsbu.ac.uk/business/res...n/health-systems-innovation-lab/meet-the-team

Rishi Duggal

Rishi is an Anaesthetist, working within the NHS for fifteen years, and Stadium Lead Doctor at Tottenham Hotspur FC.

Specialising in digital health, he works at NHS England as Clinical Lead for Digital Development and is Chair of the Clinical Information Advisory Group (CIAG) at NHS Digital overseeing the clinical governance of digital content for NHS.uk. An advocate for the safe use of technology in health,he worked at the Care Quality Commission where he co-wrote National regulations currently used to inspect digital health primary care services in England. He was later invited to brief the Prime Minister’s special advisor on the unique regulatory challenges within the sector.

Having completed a Darzi Fellowship, followed by a National Medical Director Clinical Fellowship he understands the value of clinical leadership in healthcare.
 
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Dx Revision Watch said:
I don't know, but I doubt they were asked.

I'm not on FB, I deleted Dx Revision Watch on FB, in 2010, so I can't raise it with them there. Not sure who is managing their Twitter ATM but probably better taken up directly with the BoT members. I can give you Neil Riley's (Chair BoT) email address if you want to take it up with them.
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Re the video, I raised it ages ago, long before the new guidelines.

https://www.s4me.info/threads/dialo...y-wellcome-foundation.6186/page-4#post-205561
 
Snowdrop said:
…

And they have yet to show -- via evidence -- that those people who do recover with their help -- that it was in fact the treatment and not that the person was improving anyway. Because some people do. People who do no therapy at all have recovered naturally over time. But we don't know why or what percentage.

This is all old news to us. And they have been confronted with many questions many times which they have declined to answer. Instead choosing to restate their preferred message while answering nothing.

This is not how evidence works.
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With the high level of misdiagnosis and lack of recognition of PEM no wonder they can argue some find GET helpful.
 
AknaMontes said:
With the high level of misdiagnosis and lack of recognition of PEM no wonder they can argue some find GET helpful.
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I doubt anyone much gets better with GET.
I think the diagnostic uncertainty is a red herring - after all in PACE the patients DIDN'T improve.
As Peter Barry has said, forget the diagnostics, the level of benefit if there was any was too small to be cost effective or meaningful.

If it is conceded that 'others' with fatigue benefit from GET then GET will creep back into treating ME yet another way. Better to focus on the fact it doesn't work.
 
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