NHS England web pages on ME/CFS

Suffolkres said:
Moved post

Well NHS have not hung about,,,,
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
Page last reviewed: 29 October 2021
Next review due: 29 October 2024

Treating ME/CFS
Treatment for ME/CFS aims to relieve the symptoms. Your treatment will depend on how the condition is affecting you

While there is currently no cure for ME/CFS, there are treatments that may help you manage the condition.

Treatments include:
  • cognitive behavioural therapy (CBT)
  • energy management – where you're given advice about how to make best use of the energy you have without making your symptoms worse
  • medicine to control symptoms such as pain and sleeping problems
Most people with ME/CFS will improve over time, especially with treatment, although some people do not make a full recovery.

It's also likely there will be periods when your symptoms get better or worse.

Children and young people with ME/CFS are more likely to recover fully.

Find out more about treatments for ME/CFS
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Just reading about one of the attendees from NHS England......
Celia is also the interim National Director of Patient Safety at NHS Improvement.

Posts by Celia Ingham Clark
Celia-Ingham-Clark.jpg



Celia Ingham Clark is the Medical Director for Clinical Effectiveness at NHS England.
She trained in Cambridge and London and was appointed as a consultant general surgeon at the Whittington Hospital in 1996.
After early work in medical education she developed an interest in quality improvement and this took her through several medical management roles to become Medical Director of the trust from 2004-2012.
More recently she worked as national clinical director for acute surgery and enhanced recovery, and as London regional lead for revalidation and quality.
For two years from 2014 she was the NHS England Director for reducing premature mortality, and in 2016 became the Medical Director for Clinical Effectiveness.
She was awarded an MBE in 2013 for services to the NHS.

Celia is also the interim National Director of Patient Safety at NHS Improvement.
Thoughts about harms anyone?
 
If I remember correctly CIC attended the RT by Zoom. I am not in a position to repeat anything specific but she was involved in a discussion in which there was strong agreement with emphasis from the committee officers that patients' concerns about safety should be taken seriously. There was reference to a previous 'debacle', which I think was known as the Liverpool Care Pathway. I got the impression that there was agreement that the new ME/CFS Guideline was putting right an injustice.
 
Just skimmed the website, there's nothing there about long term harm from exercise, no surprise. When I was misdiagnosed as having Fibromyalgia the NHS Choices information was pure gas lighting, telling me my pain didn't denote damage and the video of a patient claiming positive thinking was the best treatment.
 
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Ariel said:
I think this is more of a case of the charities and other parties/organisations making a group effort. Although some of the phrasing seems deliberate, much of this is likely down to incompetence and laziness and could be changed. I think it's fairly likely this could be achieved.

But starting again entirely? Not so sure. I am not sure how it works and so I have no idea. I hope there is a big effort on this. The website is sadly the first port of call for many, and is likely viewed as authoritative or trustworthy by many due to its association with the NHS. Most people trust and feel very positive about the "NHS" and their feelings about it confer to the materials.
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I don't see the charities making any effort to go against the establishment otherwise they would have done this decades ago.

As far as I understand the Law which is very limited ignorance or incompetence is no excuse. With the round Table, the release of the Association of Royal colleges and the other collages and the many delays, I would very much doubt that any of them could argue it was not a deliberate ploy by them to go against the NICE guidelines. Remember NHS was party to the RT.

But then they can accuse a mother of possible emotional harm saying her child needs a break and not a researcher that insists "through tough" love, you can make a child work until they drop and never get back up and they can do that to thousands of children, so what do I know. All it has to be said under the watchful eye of charities and one that promoted LP. Mary jane willows was the the reason SMILE trial went ahead.
 
Jonathan Edwards said:
If I remember correctly CIC attended the RT by Zoom. I am not in a position to repeat anything specific but she was involved in a discussion in which there was strong agreement with emphasis from the committee officers that patients' concerns about safety should be taken seriously. There was reference to a previous 'debacle', which I think was known as the Liverpool Care Pathway. I got the impression that there was agreement that the new ME/CFS Guideline was putting right an injustice.
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Sadly I would say she had no hand in writing the NHS website; I would say this was a preplanned release. Let us hope those who preplanned the release are the ones that get into trouble. FOI to whom authorised and asked for the writeup? I would also say that about most that attended. It is those at the top that need our focused attention with supporting those like CIC. They probably feel as hijacked as we always do. that has to be publicly shared to protect the Community from more accusations of irrational targeting.
 
Simbindi said:
Looks like it's been written by someone who couldn't be bothered to read through all the new guideline but has just cherry picked parts of it and cut and pasted them into the old version. This is a very damaging approach to have taken.
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I think it was prewritten possibly hoping they would get their way but also to fight back if things went wrong for them. Over the years they have felt they could do what they like so why change now?
 
Suffolkres said:
Just reading about one of the attendees from NHS England......
Celia is also the interim National Director of Patient Safety at NHS Improvement.

Posts by Celia Ingham Clark
Celia-Ingham-Clark.jpg



Celia Ingham Clark is the Medical Director for Clinical Effectiveness at NHS England.
She trained in Cambridge and London and was appointed as a consultant general surgeon at the Whittington Hospital in 1996.
After early work in medical education she developed an interest in quality improvement and this took her through several medical management roles to become Medical Director of the trust from 2004-2012.
More recently she worked as national clinical director for acute surgery and enhanced recovery, and as London regional lead for revalidation and quality.
For two years from 2014 she was the NHS England Director for reducing premature mortality, and in 2016 became the Medical Director for Clinical Effectiveness.
She was awarded an MBE in 2013 for services to the NHS.

Celia is also the interim National Director of Patient Safety at NHS Improvement.
Thoughts about harms anyone?
Click to expand...

Haven't read the posts here but I assume you've noticed the response from "NHS ENGLAND & NHS IMPROVEMENT" to NICE*


*"Paul, I have read the new guideline. To me, it reads very much like the previous guideline with little change in emphasis and doesn’t really address the key criticisms highlighted in the consultation. Appallingly, it continues to tell patients that there is nothing to “cure” ME, something I have never seen in another guideline (I haven’t seen many of the physical health guidelines in detail, so perhaps some of these stress this?).

The main focus of the guideline is on the opinion of the GDG and it ignores the areas for the best evidence for interventions by excluding trials on spurious grounds. As NICE has approved this, which I do find extraordinary, the danger, as we discussed, is the damage to NICE’s reputation and credibility. NICE has established itself as a world leader in evidence based medicine, through using processes now widely regarded as ones which remove bias, whether from poor/biased evidence or from the influence of key interested parties, whether that’s the drug industry, academics/professionals with vested interests or pressure groups.

This guideline, in my view, is fundamentally biased in ignoring and excluding important evidence; instead, substituting the opinions of the guideline committee. I am saying this as someone with no interests in the condition (ME/CFS) but with a strong interest in using the most reliable evidence available to underpin decision making in health. This guideline replaces the most reliable evidence available with opinion, in my view.

As I said when we discussed this, I think publishing this guideline will risk, in the short term, damage NICE’s reputation by undermining professional confidence in NICE and harm people with ME/CFS by undermining public confidence in the current treatments available for ME/CFS. I am unsure what the impact will be long term. I am very happy to further discuss the way forward. Shall we try to speak tomorrow? To reiterate, as , I would delay/postpone publication so as to find a way forward. I would be pleased to try to help find that way forward. With best wishes,"
Document 4
https://www.s4me.info/threads/foi-r...lay-publication-of-the-final-guideline.23023/
 
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FMMM1 said:
Haven't read the posts here but I assume you've noticed the response from "NHS ENGLAND & NHS IMPROVEMENT" to NICE*


*"Paul, I have read the new guideline. To me, it reads very much like the previous guideline with little change in emphasis and doesn’t really address the key criticisms highlighted in the consultation. Appallingly, it continues to tell patients that there is nothing to “cure” ME, something I have never seen in another guideline (I haven’t seen many of the physical health guidelines in detail, so perhaps some of these stress this?). The main focus of the guideline is on the opinion of the GDG and it ignores the areas for the best evidence for interventions by excluding trials on spurious grounds. As NICE has approved this, which I do find extraordinary, the danger, as we discussed, is the damage to NICE’s reputation and credibility. NICE has established itself as a world leader in evidence based medicine, through using processes now widely regarded as ones which remove bias, whether from poor/biased evidence or from the influence of key interested parties, whether that’s the drug industry, academics/professionals with vested interests or pressure groups. This guideline, in my view, is fundamentally biased in ignoring and excluding important evidence; instead, substituting the opinions of the guideline committee. I am saying this as someone with no interests in the condition (ME/CFS) but with a strong interest in using the most reliable evidence available to underpin decision making in health. This guideline replaces the most reliable evidence available with opinion, in my view. As I said when we discussed this, I think publishing this guideline will risk, in the short term, damage NICE’s reputation by undermining professional confidence in NICE and harm people with ME/CFS by undermining public confidence in the current treatments available for ME/CFS. I am unsure what the impact will be long term. I am very happy to further discuss the way forward. Shall we try to speak tomorrow? To reiterate, as , I would delay/postpone publication so as to find a way forward. I would be pleased to try to help find that way forward. With best wishes,"
Document 4
https://www.s4me.info/threads/foi-r...lay-publication-of-the-final-guideline.23023/
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Wow reading that it feels almost like the NHS page rewrite is a passive aggressive pout.
But i was under the impression the NHS England rep at the RT was supportive? Have i got that wrong @Jonathan Edwards ? Perhaps you cant say because of the Chatham house thing, but there seems, like with the RCs a disconnect between what they said prior & then after the RT, & during it?
 
JemPD said:
Wow reading that it feels almost like the NHS page rewrite is a passive aggressive pout.
But i was under the impression the NHS England rep at the RT was supportive? Have i got that wrong @Jonathan Edwards ? Perhaps you cant say because of the Chatham house thing, but there seems, like with the RCs a disconnect between what they said prior & then after the RT, & during it?
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I think the NHS England rep at RT was Celia Ingham-Clark who is a surgeon by training.
Presumably the author of the quoted comment above is a mental health professional. They say they are not familiar with physical health guidelines.

They also say they have no interests in ME/CFS. That may be a sneaky sort of truth but it seems likely that this is a psychiatrist not directly involved in ME. They nevertheless appear to be very well primed in the issues of how badly the guideline represents the evidence Someone must have been putting them in the picture.

I think we have to remember that people responding on behalf of NHS England and Improvement may be medical people who have taken on administrative roles, with various backgrounds.

The representative at RT was clearly in agreement with the view that the 2007 guideline had not taken patients' concerns into account but the new one did - specifically in relation to this issue of hope vs false hope.

It may be that the mental health spokesperson did not particularly want to be at RT, or was unavailable. Maybe the ground had shifted in some way too?
 
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JemPD said:
Wow reading that it feels almost like the NHS page rewrite is a passive aggressive pout.
But i was under the impression the NHS England rep at the RT was supportive? Have i got that wrong @Jonathan Edwards ? Perhaps you cant say because of the Chatham house thing, but there seems, like with the RCs a disconnect between what they said prior & then after the RT, & during it?
Click to expand...

I barely remember reading it but my impression was that it was way out of order. NICE is an independent body and its role is to analyse the evidence, which it has done, and prepare the guideline. NHS England should not be making these comments at this stage of the process (in fact I've a feeling that they would be inappropriate even at the evidence gathering phase)--- the opportunity to comment has long passed. So really this should not have been submitted; it's time for NHS England to get on with implementing the guidelines.
Someone in NICE should possibly put a rebuttal through the SOS/DHSC --- telling NHS England that this submission was not appropriate --- wind your neck in!
 
If commenting on Doc4, the NHS response to NICE, written 22.29 on 11 August, one should read it alongside TE2, in which the writer texted PC, at an unknown time, that the least worst option was to delay or pull the guideline altogether.
 
I've not been able to find out who are in the CIAG (The Clinical Information Advisory Group). See my post above.

But there is this:

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Evidence updates to published content, as well as feedback from users and stakeholders, are considered on a day-by-day basis as they arrive, and content is reviewed and amended immediately if necessary."

hopefully the charities are on this but maybe S4ME as stakeholders to the NICE guidelines could put together something?

eta: content policy https://www.nhs.uk/our-policies/content-policy/
 
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Sly Saint said:
hopefully the charities are on this but maybe S4ME as stakeholders to the NICE guidelines could put together something?
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I hope some people will work on this. Speaking for myself, I'm burnt out from the last year's efforts on the NICE guideline and can do no more than try to help keep the forum ticking over, and I expect those on the NICE guideline committee feel the same after their marathon efforts over 3 years.

I don't want to speak for others, but I doubt anyone on the forum committee or guideline group will be able to take this up. But we have plenty of other excellent members. Over to the rest of you!
 
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