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

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Amw66 said:
When I see sleep hygiene mentioned I remember Maddie Bourlet , a teenager ( I think under Bath) who was left bedbound and tubefed after trying to restructure sleep.
It can be as dangerous as GET
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It is one of many things that I tried. I took a whack at it myself though, without any outside coercion and reading it from a book. The advice was that if you couldn't fall to sleep at the designated times you'd go do something. It were a horrible couple of weeks and wouldn't recommend it to anyone.

A couple years ago I visited a sleep clinic for some help as they did all sorts of stuff including a lot of research in earlier years. Was very disappointed when they said the only thing they could offer me was CBT and when they heard I had M.E. they offered it for that too. Declined, said it only made me worse when I tried it and then got the hell out of there and haven't tried anything like it since.
 
Jonathan Edwards said:
In effect there were two physician and two GP representatives at RT. My reading now is that NICE were confident enough of their position to invite a genuinely representative range of objectors (the main comments were from physicians and GPs), being just about able to make that fit protocol. They also chose a chair who could not be considered in any way biased against the objectors.

Which meant that when the objectors' representatives ran out of steam trying to articulate the simplest points nobody could call foul.
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If that is the case that was a very clever move in hindsight, but could have backfired so badly for patients. Having been involved in this tossing and turning quagmire that patients have been put through, it was understandable that people were skeptical and in a way perhaps, that is why they or the chair behaved ?

We must remember the Academy of Royal Colleges are also union reps for those colleges members and what would be worth knowing is were they representing those like your self that had worked hard on the guidelines and wanted them published or those that have so much to lose if they are published?

They are also entrusted with patient safety and ethics, how can they do all four at one time. I do understand from what has bee written about the RT that there was a determined effort to protect the patient, but it should not be that difficult for any professional to stand up for patients who have been harmed over decades?

Another role is to educate and set the criteria for Doctors training that is then sanctioned by the GMC, who also have a patient safety role.

They have so much control and no real way of patients making sure they do the right thing? For instance if a member was taken to court over or GMC of harm, caused by CBT and GET how would the Academy or GMC, who have so many conflicts of interest it would surrender them mute on all their roles? A constant loop that never ends rolling down the road, like that Victorian hoop game.

So where could that young man who brought the JR against NICE have gone to get remedies for the treatment he suffered or watched his mother suffer? There is a lot to learn for NHS England, NICE, AoRC, GMC through the patient safety role with regards to ME and this whole process.
 
I had my sleep monitored once. Even hooked up to a machine measuring everything, and feeling that I had been tossing and turning all night, the dr said that according to my graphs I had had a better night's sleep than most of his other patients, and had nothing to worry about. I wasn't worried in the first place, I've always been a pretty good sleeper. In the first couple of years of ME I had unrefreshing sleep and woke up feeling worse than I went to bed, but I'm back to sleeping normally now without any interventions or advice, through just pacing and being lucky. Last thing I need is to be sent to someone who gives me advice on "sleep hygiene". What next, "breathing hygiene", "listening hygiene", "looking hygiene" - how to use your eyeballs correctly? These things tend to be automatic and take care of themselves, and if there are any issues a quick google is usually enough to be reminded of the bleedin' obvious. Sleep hygiene probably has its place and is appropriate and useful in some circumstances, but to just prescribe it for PWME because you can't think what else to do with them is rather annoying.

Tilly said:
Oh how I wish that was how it worked. Firmly pressing buttons is my occupation at the moment and I do wish the computer and others would take notice of my intent.
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Did you remember to flutter your cape whilst pressing firmly? Otherwise it doesn't work.
 
Barry said:
WaybackMachine captured 5 snapshots on 20 Oct ...
View attachment 15407

The 12:22 snapshot still had ...

https://web.archive.org/web/2021102...ps-for-publication-of-its-guideline-on-me-cfs

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But by the 13:33 snapshot it had changed to ...

https://web.archive.org/web/2021102...ps-for-publication-of-its-guideline-on-me-cfs

View attachment 15409

So what did Gillian Leng actually say, given she is quoted as saying two different things? And more to the point, why was it deemed necessary to change the original quote.
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It is shocking what they can change subtle changes have big impacts.
 
TiredSam said:
I had my sleep monitored once. Even hooked up to a machine measuring everything, and feeling that I had been tossing and turning all night, the dr said that according to my graphs I had had a better night's sleep than most of his other patients, and had nothing to worry about. I wasn't worried in the first place, I've always been a pretty good sleeper. In the first couple of years of ME I had unrefreshing sleep and woke up feeling worse than I went to bed, but I'm back to sleeping normally now without any interventions or advice, through just pacing and being lucky. Last thing I need is to be sent to someone who gives me advice on "sleep hygiene". What next, "breathing hygiene", "listening hygiene", "looking hygiene" - how to use your eyeballs correctly? These things tend to be automatic and take care of themselves, and if there are any issues a quick google is usually enough to be reminded of the bleedin' obvious. Sleep hygiene probably has its place and is appropriate and useful in some circumstances, but to just prescribe it for PWME because you can't think what else to do with them is rather annoying.


Did you remember to flutter your cape whilst pressing firmly? Otherwise it doesn't work.
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Will give that a go. I have a wicked witch cape somewhere will dig it out and get back to you
 
Trish said:
That was Chalder 30 years ago, and she hasn't learned anything. It must be quite something to be able to hold on to such fantasies for so long in the face of mounting evidence that she's wrong. I wonder whether the BPS group will even face up to the harm their fixed beliefs have done to many thousands of sick people. There's something very wrong with science/medicine that allows perpetuation of myths like this.
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with all the funding she has she should be challenged on that ? If she cannot fully explain PEM she should be thrown out?
 
Lucibee said:
NICE provide monthly primary care updates: https://www.nice.org.uk/news/nice-newsletters-and-alerts

The roundtable meeting was mentioned in the September update.

I think it's the GPs' responsibility to stay on top of guidance updates.
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They should have a toolkit as they do with EDS hEDS this is one thing a RT event could be useful for as it has been used in the past as a training aid. If there was a toolkit it would be easier for YP to enable to fight the battles they face.
 
A reminder from the Development Process and Methods Manual [PMG20] of the launching and implementation stages following publication of a guideline:

https://www.nice.org.uk/process/pmg...blication-and-implementation-of-the-guideline

(...)

1.7 Publication and implementation of the guideline
Guideline recommendations are published on the NICE website alongside the rationales for the recommendations, evidence reviews, including summaries of the committee discussions, and methods. Any resources to help users implement the guideline are also published. The guideline recommendations are also included in NICE Pathways – an online tool that brings together everything NICE says on a topic in an interactive flowchart. Pathways are structured and signposted so users can find relevant recommendations quickly and easily. They are not care pathways.

Resources to help people put the guideline into practice include tools that help users assess what needs to change. These resources inform action planning or audit, estimate costs and savings to help build a business case, or meet the education and learning needs of practitioners (see the chapter on resources to support putting the guideline into practice for information about the support available to help implement guideline recommendations).

(...)

https://www.nice.org.uk/process/pmg20/chapter/finalising-and-publishing-the-guideline#publication

1.4 Publication
The guideline, including evidence reviews, methods, NICE Pathway, key messages for the public and most support tools (see the chapter on resources to support putting the guideline into practice) are published on the NICE website at the same time.

11.5 Launching and promoting the guideline
The developer and committee work with NICE's media relations team and, if implementation support projects are planned, the implementation lead to disseminate and promote awareness of the guideline at the time of publication and afterwards. It is useful to consider at an early stage of guideline development how the guideline and its support tools will be promoted.

Members from the NICE media relations team discuss with the developer and the committee opportunities for promoting the guideline. Committee members may be asked to take part in such activities.

With help from the committee and the developer, they identify how to reach relevant audiences for the guideline, including people using services, carers, the public, practitioners and providers.

NICE may use a range of different methods to raise awareness of the guideline. These include standard approaches such as:

  • notifying registered stakeholders of publication

  • publicising the guideline through NICE's newsletter and alerts

  • issuing a press release or briefing as appropriate, posting news articles on the NICE website, using social media channels, and publicising the guideline within NICE.
NICE may also use other means of raising awareness of the guideline – for example, training programmes, conferences, implementation workshops, NICE field team support and other speaking engagements. Some of these may be suggested by committee members (particularly members affiliated to organisations for people using services and carer organisations). Each guideline is different and activities for raising awareness will vary depending on the type and content of the guideline.

Press launches
The media relations team may set up interviews or filming with committee members ahead of the guideline launch or on the day itself. NICE can make good use of case studies or experts to illustrate or explain the guideline recommendations. They help to give context to the guideline, explain why the work has been carried out and can illustrate where recommendations have already been put in place or where lessons have been learned. Information may be provided to the media under embargo until the launch date for the guideline. Committee members should ensure that NICE is made aware of any press enquiries they receive before the guideline is launched, and should not answer them without involvement of the media relations team.

A guideline launch is usually accompanied by activity on social media which may include graphics, animations, videos and quotes from key committee members or NICE directors. In most cases, this work will be prepared ahead of the launch.

Committee members may also wish to arrange separate events at which practitioners, providers, commissioners and people using services and the public can learn more about the guideline. Developers should inform committee members that in such cases, the NICE's media relations team should be notified at the earliest possible opportunity. Any materials developed from guideline content by committee members should be submitted to NICE staff with a quality assurance role. Committee members who wish to publish their materials for a UK audience only may do so under the NICE UK Open Content Licence. This is a self-assessment exercise and no fee is involved. The international use of NICE content is subject to a formal licensing agreement, but without a fee for those who have contributed to the development of NICE guidance. Please see NICE's webpage on reusing our content.

When there is likely to be substantial media interest, NICE may hold a press conference before publication of the guideline. This form of briefing allows for a more structured and considered exchange of information between NICE and the media, during which any potentially controversial aspects of the guideline can be explained and set in context. It also gives journalists an opportunity to interview people involved in developing the guideline and other contributors – including people with experiences related to the guideline or representatives from charities and other stakeholders who are supportive of the work.

https://www.nice.org.uk/process/pmg...o-support-putting-the-guideline-into-practice

12 Resources to support putting the guideline into practice

12.1 Introduction
Guideline committees consider implementation issues as an integral part of developing a guideline, and take account of comments on the draft guideline. NICE teams work with committees to consider what can be done to address implementation challenges, for example, by producing tools to help people put the guideline into practice, in line with our implementation strategy.

12.2 Tools for planning and resource impact assessment
NICE provides a baseline assessment tool for each guideline at the time of publication. This is a modifiable Excel spread sheet that organisations can use to identify whether they are in line with practice recommended by NICE, and to help them plan and record activity to implement the guideline recommendations.

NICE resource impact assessment tools are intended to help organisations assess the potential costs and savings associated with implementing the guideline. A resource impact report and an associated resource impact template are produced for guidelines that will have a substantial resource impact. The template enables a local estimate to be made of the potential costs and savings involved in implementation. If the resource impact is deemed not to be substantial, a 1‑page resource impact statement is produced.

12.3 Tools to support decision-making by practitioners and people using services

Visual summaries and quick guides
For some guidelines, there is a need for a visual summary of part of the guideline for health or care practitioners. For example, where practice needs to change, a practitioner needs to make quick decisions, or a specific audience needs support in implementing the recommendations.

Discussions about any visual summary or quick guide should happen as soon as possible. If NICE and the developer agree that a tool of this type will be helpful, the NICE editor will work with the developer to develop it for publication alongside the guideline.

For some topics, a quick guide is produced to help practitioners with putting recommendations into practice (for example, in a care home), or to support people using services to understand what to expect, and make decisions about their care.

Decision aids
If the committee identifies a preference-sensitive decision point in the guideline (see the section on supporting shared decision-making in the chapter on writing the guideline), NICE may develop a decision aid.

Decision aids supplement or support the discussion between the person and their health or care practitioner about a preference-sensitive decision point, rather than replacing it. The person facing the decision can also refer to the aid after their appointment, and discuss it with their family and carers if they wish. NICE decision aids are written in non-technical language and include information about:

  • the treatment or care options recommended in NICE guidance

  • the aims of treatment or care and how likely the person is to benefit

  • possible adverse effects from the treatment or care options and the likelihood of experiencing them

  • other issues likely to be important to the person facing the decision (such as additional monitoring requirements and duration of treatment).
Decision aids usually include a visual representation of the likelihood of benefits or harms. They may also include a table to support the person to think about the relative importance to them of different factors in their decision.

If the committee identifies an area where there is a particular need for support with decision-making, the developer should alert NICE staff with responsibility for quality assurance during guideline development. NICE will decide whether to produce a decision aid. This is based on factors such as:

  • the value of a visual representation of the chance of benefits or harms

  • the complexity of the issues or the number of options the person is choosing between

  • whether or not the decision is 'high stakes' with possible life-changing consequences

  • whether or not the risks and benefits between options are similar, so that preferences will be the determining factor.
Each decision aid is developed by a project group with expertise in the topic area, including practitioners and people who use health and care services.

12.4 Working with other organisations and endorsing resources
Organisations and individuals, both lay and practitioner, can play a key role in supporting the implementation of the guideline and NICE may work with external partners to help with this.

Implementation resources which have been jointly developed by NICE in collaboration with key national partner organisations, can be co‑badged and carry the NICE logo, providing they are approved by a director and the placement of the logo is approved by the communications team.

Organisations other than NICE may produce resources for guideline implementation. These could include implementation and adoption resources, learning modules/educational packages and patient decision aids. These resources can be endorsed by NICE. A guideline should usually only link to externally developed tools and resources when the tools and resources have been endorsed by the NICE endorsement programme. Endorsement confirms that the resources accurately reflect the content of the NICE guideline and can be updated as needed. Endorsed resources do not carry the NICE logo. If developers identify a relevant tool during development of a guideline, they should contact the endorsement team.

NICE's shared learning case studies show how organisations have put our recommendations into practice. If developers hear about any examples of good practice, they should contact NICE's shared learning team.

If a guideline is expected to have a significant resource impact or be challenging to implement, the Guideline Resource and Implementation Panel reviews it, and advises on affordability and workforce issues. The panel works with NICE to produce a statement to support implementation; the statement is published alongside the guideline. The panel includes representatives from NICE, NHS England, NHS Improvement and Health Education England, along with topic experts and other national organisations if needed.

12.5 Other NICE implementation support
The following services and resources help to put all NICE guidance and standards into practice:

  • The implementation support team at NICE works with national partners to support implementation.

  • Members of the NICE field team support local organisations to implement NICE guidance and use quality standards.

  • NICE medicines and prescribing associates and the medicines education team use their local networks to deliver specialist support for high-quality, cost-effective prescribing and medicines optimisation.

  • NICE publishes reports and a database on uptake of NICE recommendations.

  • NICE into practice resources cover the principles of changing practice and practical steps to implement NICE recommendations.

  • An implementation strategy group made up of external academics meets twice a year to inform the NICE implementation strategy with new and ongoing developments in implementation science.

  • NICE's public involvement team works with national and local voluntary and community sector organisations and members of the public to promote the use of our guidance and standards, and support implementation.
We also seek feedback from people who use our guidelines to make them, and any resources to support implementation, as easy to use as possible.
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Coïncidentally I saw a clip of the tv programme QI a couple of days ago where they talked about sleep and how it's still a mystery why we do it.
They said that one current theory is that it is for cleaning the brain. (I remember because I chuckled at the image of tiny spunges and buckets. Sleeping in could be Spring cleaning.)

Then yesterday I came across this image on Twitter with the caption "spinal fluid washing over the brain during sleep to remove waste"




That this supposed mechanism would be prolonged in patients with ME or other illnesses for a reason would not sound far-fetched to me.

I have the opposite problem since I have Lyme, I wish I could sleep more.
I also had a sleep test done once: it showed major disruption with continuous waking throughout the night, which made the neurologist exclaim: "Well of course you are tired!" before he sent me off to a psychologist. (I wasn't tired, it was like someone had dropped a bucket of water on the control panel of my body, I had severe neurological complaints, PEM and spontaneously popping blood vessels. :banghead:)


BPS-ers messing about with sleep is like everything else they do: claiming to have the answer and be knowledgeable about a physical function/expression that is partly known (which they'll ignore) but still being figured out by actual science, in a laughably simplistic way that follows prejudice, not actual expertise or knowledge. And then they give their "treatments" which boil down to advising/prescribing from their ignorance to the people who actually have to live with it and the consequences of what they are advised to do.

It's so on brand.
 
My mother has just asked if I am going to try ‘barbaric oxygen’. Are we still expecting NICE to publish the guideline or have we given up again? Just wondering. And how can we respond to the impending tsunami of clinics changing people diagnoses in order to give them GET? Is there an appropriate complaints process?
 
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