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

It got buried in the pages.

A UK crossbench peer offering her home to a fleeing Ukrainian family has said the UK’s visa scheme is “unwelcoming” and adding to refugees’ trauma.

Lady Finlay is offering space in her Cardiff home to a mother and two children, but has been waiting for three weeks for their visas to be cleared through the Homes for Ukraine scheme, PA reports.

Her husband, Professor Andrew Finlay, spent eight hours filling out forms for their visa applications on 18 March, the day the scheme launched, she said.

The father of the family, who were already known to her and her husband, is a doctor and has remained in Kyiv, she said. The couple has also submitted an application for him in the event he also leaves Ukraine due to injury or other reasons.

Finlay added:

He’s decided to stay to serve his country and he’s basically entrusted his wife and two children to us. We’ve said we will do whatever is needed for however long to support them, and we know that it might be years.

Each of the family’s four applications had to be made separately. And despite repeated efforts in person at a visa information centre and over the phone, the only official response has been four separate emails on Thursday to say each applicant is “in the system” to be processed.

She said:

The silence is awful... nobody can help me find out what’s happened to these people’s applications. I think there is a failure of recognition that this uncertainty is adding to the trauma that these people have already experienced.

These aren’t just pieces of paper, these are people... and these are people who have lost everything.

We need to provide an environment where they know that they are welcome and they are safe - how can they feel welcome?

The message from the system is that the country is not welcoming them.

Finlay described the preparations she and her husband have taken to make their home welcoming to the family - including clearing space in their kitchen, installing a radio which can be tuned into Ukrainian radio and washing soft toys for the younger child.

Finlay said the Home Office was “not functioning as it should”.

This feels as if it’s totally reactive, as if nobody had looked carefully at the visa application processes over recent years and said: ‘in the event of a major conflict in the world, where all of a sudden, we have to deal with a mass migration of people, how are we going to do it?’

A government spokesperson said:

We continue to process visas for the Homes for Ukraine scheme as quickly as possible, but accept progress has not been quick enough.

The Home Office has made changes to visa processing - the application form has been streamlined, Ukrainian passport holders can now apply online and do their biometrics checks once in the UK, and greater resource has gone into the system.
 
Barry said:
Yes, your link is a bit different to @Jonathan Edwards' one, and goes directly to that article. How did you manage to get that link? I use Google Chrome, and I cannot see a way to get a link to a specific individual article, only to the whole news page. Would be good to know how to do it.
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In place of a screenshot:
9h ago
09:36


A UK crossbench peer offering her home to a fleeing Ukrainian family has said the UK’s

Lady Finlay is offering space in her Cardiff home to a mother and .....
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Right-click on the time stamp at top left of the news article & click 'save link'.

Edit (had confounded top and bottom....)
 
Last edited:
Key learning points: revised NICE guidance on ME/CFS
By Dr David Strain 21 April 2022

Dr David Strain defines best practice management of the chronic, poorly understood condition ME in six key learning points

Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a complex, chronic medical condition affecting multiple body systems.1 At least a quarter of a million people are living with the condition in England and Wales alone.1 However, this number may underestimate the true prevalence of the condition, which is under-reported as a result of the prejudice, disbelief, and stigmatisation that people with ME/CFS often experience from people who do not understand their illness (including family, friends, health and social care professionals, and teachers).1

This scepticism about ME/CFS is the result of insufficient understanding of the underlying pathophysiology of the disease.2 The lack of a diagnostic test for ME/CFS has led it to be regarded as a ‘hysterical’ or ‘functional’ condition, similarly to how conditions such as multiple sclerosis were viewed before the advent of technology to identify them.3 In the case of multiple sclerosis, magnetic resonance imaging (MRI) enabled the routine visualisation of sclerotic plaques in a population previously labelled as functional, and helped the biological mechanisms of the condition to gain acceptance.4 The absence of measurable pathology, the disbelief around ME/CFS has persisted. Another significant contributor is the label ‘chronic fatigue syndrome’, coined by Dr Anthony Komaroff of the US Centers for Disease Control and Prevention when describing an outbreak of a chronic, flu-like illness at Incline Village (Lake Tahoe, Nevada, USA) in 1984.5 Subsequently, Dr Komaroff described the terminology as ‘a big mistake because the name, in my opinion and the opinion of a lot of people … both trivializes and stigmatizes the illness. It makes it seem unimportant. Maybe not even real.’6
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full article
https://www.guidelinesinpractice.co...evised-nice-guidance-on-me/cfs/456897.article
 
Sly Saint said:
Key learning points: revised NICE guidance on ME/CFS
By Dr David Strain 21 April 2022
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I am wondering what 'Guidelines' is - who produces it and who funds it and what relation if any it has to NICE?

I find this article quite disappointing because it seems to be a mish mash of repeated material from various sources rolled into a 'recipe' without any background thought.

Why is CBT give a 'place'? Why should it be done by people trained in CBT for ME when we know that CBT for ME (rather than just supportive CBT) is not supported by any reliable evidence?

Should a guideline article like this include the several politically laden statements at the beginning? The bit about MS not being recognised until there were MRI scans is very misleading.

It seems in some ways more like medical journalism than evidence-based practical advice.

Why can't we admit that nobody really knows what to do and all we have to go on is what the patients have found helpful through experience?
 
Jonathan Edwards said:
I am wondering what 'Guidelines' is - who produces it and who funds it and what relation if any it has to NICE?

I find this article quite disappointing because it seems to be a mish mash of repeated material from various sources rolled into a 'recipe' without any background thought.

Why is CBT give a 'place'? Why should it be done by people trained in CBT for ME when we know that CBT for ME (rather than just supportive CBT) is not supported by any reliable evidence?

Should a guideline article like this include the several politically laden statements at the beginning? The bit about MS not being recognised until there were MRI scans is very misleading.

It seems in some ways more like medical journalism than evidence-based practical advice.

Why can't we admit that nobody really knows what to do and all we have to go on is what the patients have found helpful through experience?
Click to expand...

Guidelines in Practice and guidelinesinpractice.co.uk are now part of the Medscape Professional Network—working together to support evidence-based best practice. Access a personalised clinical news feed and tools to support your daily practice at medscape.co.uk.

https://www.guidelinesinpractice.co.uk/about-us
 
Jonathan Edwards said:
So who produces and funds Medscape?

We seem to live in a world of predigested information served up 'on message' in line with nobody quite knows who.
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https://en.wikipedia.org/wiki/Medscape

Medscape launched May 22, 1995 by SCP Communications, Inc.[2] under the direction of its CEO Peter Frishauf.[3] In 1999, George D. Lundberg became the editor-in-chief of Medscape. For seventeen years before joining Medscape he had served as Editor of the Journal of the American Medical Association.

In September 1999, Medscape, Inc. went public and began trading on NASDAQ under the symbol MSCP. In 2000, Medscape merged with MedicaLogic, Inc., another public company. MedicaLogic filed for bankruptcy within 18 months and sold Medscape to WebMD in December 2001. In 2008, Lundberg was terminated by WebMD. The following year the Medscape Journal of Medicine ceased publishing.[4] In January 2013, Eric Topol was named editor-in-chief of Medscape.[5] The same year, Lundberg returned to Medscape as editor-at-large.

In 2009, WebMD released an iOS application of Medscape,[6] followed by an Android version two years later.[7] In 2015, WebMD launched Medscape CME & Education on iOS.[8]

https://en.wikipedia.org/wiki/WebMD

WebMD is an American corporation known primarily as an online publisher of news and information pertaining to human health and well-being.[3] The site includes information pertaining to drugs. It is one of the top healthcare websites.[4][5]

It was founded in 1998 by internet entrepreneur Jeff Arnold.[6] In early 1999, it was part of a three way merger with Sapient Health Network (SHN) and Direct Medical Knowledge (DMK). SHN began in Portland, Oregon, in 1996 by Jim Kean, Bill Kelly, and Kris Nybakken, who worked together at a CD-ROM publishing firm, Creative Multimedia. Later in 1999, WebMD merged with Healtheon, founded by Netscape Communications founder James H. Clark.[7]

https://www.company-histories.com/WebMD-Corporation-Company-History.html

WebMD Corporation, based in Elmwood Park, New Jersey, is best known for its consumer-focused healthcare information web site, but the company also offers a range of transaction and technology solutions for physicians, providers, and health plans. The company's WebMD Health unit operates the health information web site, which attracts more than 20 million visitors each month. WebMD also distributes its content and services to other Internet portals such as AOL and MSN, and media distribution partner News Corporation. Medscape from WebMD offers online education tools and medical information to more than 575,000 physicians and 1.6 million other healthcare professionals. WebMD Envoy provides electronic data interchange for the healthcare industry to determine eligibility and coverage, bill patients, process claims, and make reimbursements. WebMD Practice Services, through The Medical Manager, provides integrated practice management systems to help physicians automate appointment scheduling, maintain medical histories and charts, and streamline billing. The unit's professional Internet portal also offers members medical research, news, professional journals, and Web-based continuing medical education. WebMD is a public company trading on the NASDAQ.
 
CRG said:
https://en.wikipedia.org/wiki/Medscape

Medscape launched May 22, 1995 by SCP Communications, Inc.[2] under the direction of its CEO Peter Frishauf.[3] In 1999, George D. Lundberg became the editor-in-chief of Medscape. For seventeen years before joining Medscape he had served as Editor of the Journal of the American Medical Association.

In September 1999, Medscape, Inc. went public and began trading on NASDAQ under the symbol MSCP. In 2000, Medscape merged with MedicaLogic, Inc., another public company. MedicaLogic filed for bankruptcy within 18 months and sold Medscape to WebMD in December 2001. In 2008, Lundberg was terminated by WebMD. The following year the Medscape Journal of Medicine ceased publishing.[4] In January 2013, Eric Topol was named editor-in-chief of Medscape.[5] The same year, Lundberg returned to Medscape as editor-at-large.

In 2009, WebMD released an iOS application of Medscape,[6] followed by an Android version two years later.[7] In 2015, WebMD launched Medscape CME & Education on iOS.[8]

https://en.wikipedia.org/wiki/WebMD

WebMD is an American corporation known primarily as an online publisher of news and information pertaining to human health and well-being.[3] The site includes information pertaining to drugs. It is one of the top healthcare websites.[4][5]

It was founded in 1998 by internet entrepreneur Jeff Arnold.[6] In early 1999, it was part of a three way merger with Sapient Health Network (SHN) and Direct Medical Knowledge (DMK). SHN began in Portland, Oregon, in 1996 by Jim Kean, Bill Kelly, and Kris Nybakken, who worked together at a CD-ROM publishing firm, Creative Multimedia. Later in 1999, WebMD merged with Healtheon, founded by Netscape Communications founder James H. Clark.[7]

https://www.company-histories.com/WebMD-Corporation-Company-History.html

WebMD Corporation, based in Elmwood Park, New Jersey, is best known for its consumer-focused healthcare information web site, but the company also offers a range of transaction and technology solutions for physicians, providers, and health plans. The company's WebMD Health unit operates the health information web site, which attracts more than 20 million visitors each month. WebMD also distributes its content and services to other Internet portals such as AOL and MSN, and media distribution partner News Corporation. Medscape from WebMD offers online education tools and medical information to more than 575,000 physicians and 1.6 million other healthcare professionals. WebMD Envoy provides electronic data interchange for the healthcare industry to determine eligibility and coverage, bill patients, process claims, and make reimbursements. WebMD Practice Services, through The Medical Manager, provides integrated practice management systems to help physicians automate appointment scheduling, maintain medical histories and charts, and streamline billing. The unit's professional Internet portal also offers members medical research, news, professional journals, and Web-based continuing medical education. WebMD is a public company trading on the NASDAQ.
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Wondering if this will give Cochranites bright ideas - launch on the stock market and make some money ---- you can see the dollar signs!
 
Jonathan Edwards said:
I am wondering what 'Guidelines' is - who produces it and who funds it and what relation if any it has to NICE?

I find this article quite disappointing because it seems to be a mish mash of repeated material from various sources rolled into a 'recipe' without any background thought.

Why is CBT give a 'place'? Why should it be done by people trained in CBT for ME when we know that CBT for ME (rather than just supportive CBT) is not supported by any reliable evidence?

Should a guideline article like this include the several politically laden statements at the beginning? The bit about MS not being recognised until there were MRI scans is very misleading.

It seems in some ways more like medical journalism than evidence-based practical advice.

Why can't we admit that nobody really knows what to do and all we have to go on is what the patients have found helpful through experience?
Click to expand...


Guidelines and effective Implementation??.... Getting the message across- and making sure everyone is singing from the same hymn sheet for CYP, especially as a ministerial Review is underway for Children and Families....

In 2018 Minutes for NICE.
(https://www.nice.org.uk/Media/Defau...board-meetings/agenda-and-papers-march-18.pdf)

Page 74 Social care

22. NICE guidance and quality standards for social care are commissioned by the Secretary of State for Health and Social Care, and in the case of children’s social care, the Secretary of State for Education.

They are intended for use in conjunction with the frameworks and regulation already in place, providing practical support to help drive up the quality of adult and children's care.

They also support the work of local Health and Wellbeing Boards and help local people hold commissioners and providers to account.
........

NICE’s role in this sector was consolidated in 2017 with the publication of Quality Matters, which set out NICE’s role in delivering quality for social care alongside other partners.



The NICE Guideline NG 206 delivers for Children and 'Young People' (i.e. young adults up to the age of 25 under Department of Education Guidelines-)

NICE reference 1.9.3 Health and social care professionals should follow the Department for Education's guidance on supporting pupils at school with medical conditions or equivalent statutory guidance.

I believe highly relevant and critical to protection of CYP -to NG206 - are the 2 following NICE Guidelines which should be crossed referenced within the NICE ME Implementation process.

* key guideline has been issued by NICE on March 9th: NICE guideline [NG213]
Published: 09 March 2022

1. Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across health, social care and education-
(https://apcp.csp.org.uk/news/2022-0...children-young-people-25-severe-complex-needs)


Also in development and is likely to be supportive and needing cross referencing is :

2. Social, emotional and mental wellbeing in primary and secondary education

References & Context

School-based interventions: physical and mental health and wellbeing promotion

In development [GID-NG10125] Expected publication date: 06 July 2022


Project Team

Developer- NICE Public Health and Social Care Guidelines Team


Email enquiries If you have any queries please email sewbineducation@nice.org.uk https://www.nice.org.uk/guidance/population-groups/children-and-young-people

Why is this so important?

King's Fund quote 2016 email re APPG on ME _ From the Kings Fund

Scroll down to section titled, 'How have STPs been developed so far?'

Final para in this section;

‘In this context, incentives for NHS providers to work together can be weak. The very real danger is that organisations take a ‘fortress mentality’ instead, acting to secure their own future regardless of the impact on others. The dissonance between place-based planning and the continuing focus on organisational performance in the NHS is therefore stark.’

https://www.kingsfund.org.uk/topics/integrated-care/sustainability-transformation-plans-explained
 
Suffolkres said:
Guidelines and effective Implementation??.... Getting the message across- and making sure everyone is singing from the same hymn sheet for CYP, especially as a ministerial Review is underway for Children and Families....

In 2018 Minutes for NICE.
(https://www.nice.org.uk/Media/Defau...board-meetings/agenda-and-papers-march-18.pdf)

Page 74 Social care

22. NICE guidance and quality standards for social care are commissioned by the Secretary of State for Health and Social Care, and in the case of children’s social care, the Secretary of State for Education.

They are intended for use in conjunction with the frameworks and regulation already in place, providing practical support to help drive up the quality of adult and children's care.

They also support the work of local Health and Wellbeing Boards and help local people hold commissioners and providers to account.
........

NICE’s role in this sector was consolidated in 2017 with the publication of Quality Matters, which set out NICE’s role in delivering quality for social care alongside other partners.



The NICE Guideline NG 206 delivers for Children and 'Young People' (i.e. young adults up to the age of 25 under Department of Education Guidelines-)

NICE reference 1.9.3 Health and social care professionals should follow the Department for Education's guidance on supporting pupils at school with medical conditions or equivalent statutory guidance.

I believe highly relevant and critical to protection of CYP -to NG206 - are the 2 following NICE Guidelines which should be crossed referenced within the NICE ME Implementation process.

* key guideline has been issued by NICE on March 9th: NICE guideline [NG213]
Published: 09 March 2022

1. Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across health, social care and education-
(https://apcp.csp.org.uk/news/2022-0...children-young-people-25-severe-complex-needs)


Also in development and is likely to be supportive and needing cross referencing is :

2. Social, emotional and mental wellbeing in primary and secondary education

References & Context

School-based interventions: physical and mental health and wellbeing promotion

In development [GID-NG10125] Expected publication date: 06 July 2022


Project Team

Developer- NICE Public Health and Social Care Guidelines Team


Email enquiries If you have any queries please email sewbineducation@nice.org.uk https://www.nice.org.uk/guidance/population-groups/children-and-young-people

Why is this so important?

King's Fund quote 2016 email re APPG on ME _ From the Kings Fund

Scroll down to section titled, 'How have STPs been developed so far?'

Final para in this section;

‘In this context, incentives for NHS providers to work together can be weak. The very real danger is that organisations take a ‘fortress mentality’ instead, acting to secure their own future regardless of the impact on others. The dissonance between place-based planning and the continuing focus on organisational performance in the NHS is therefore stark.’

https://www.kingsfund.org.uk/topics/integrated-care/sustainability-transformation-plans-explained
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Heather Stephens Implementation.....

'Thank you for your email. I have now retired and therefore will not be able to respond.
If your email is urgent or requires a response or action, please re-send to implementationSupport@nice.org.uk.
If you have an F.O.I request please forward it to nice@nice.org.uk.'
 
Jonathan Edwards said:
Why is CBT give a 'place'? Why should it be done by people trained in CBT for ME when we know that CBT for ME (rather than just supportive CBT) is not supported by any reliable evidence?
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This is a consequence of the new NICE guideline - unavoidably - not being perfect I guess, where it says:
1.12.31 CBT should only be delivered by a healthcare professional with appropriate training and experience in CBT for ME/CFS, and under the clinical supervision of someone with expertise in CBT for ME/CFS.
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Jonathan Edwards said:
I don't see it as a consequence. To repeat it as advice you have to think it merits repeating.
Strain wasn't on the committee so I don't see that he is obliged to repeat it.
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But it still enables people to quote the guideline misleadingly, irrespective of the reason. If that bit had not made it into the guideline then that would not be possible. But I am not complaining about the new guideline, nothing is ever perfect, and I think we ended up with an incredibly good compromise. Could easily have ended up far far worse but for the excellent work of the committee and experts.
 
Barry said:
But it still enables people to quote the guideline misleadingly, irrespective of the reason. If that bit had not made it into the guideline then that would not be possible. But I am not complaining about the new guideline, nothing is ever perfect, and I think we ended up with an incredibly good compromise. Could easily have ended up far far worse but for the excellent work of the committee and experts.
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It is a good guideline and given the make-up of the committee, it was likely parts would later emerge that would come under question.
 
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