NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

Andy said:
I've reached out behind the scenes and the question on whether this health topic will be updated so that it will be inline with the new ME/CFS guideline will be raised with the appropriate part of NICE.
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This was paid for and reviewed in March 2020!

So, why does it not carry a health warning like the NICE web page for ME?
When will it carry a health warning like the NICE guideline web page?

I think the NICE ME Guideline lead Rupert F needs to answer this question ...!
Is it conspiracy or cock up .. or both?
 
Andy said:
Tweet from @Caroline Struthers

"Just left some feedback for @NICEComms to question their use of the @cochranecollab reviews of CFS in their Clinical Knowledge Summary for managing tiredness in adults"
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I heard back from NICE today. I find it a bit chilling/threatening. "...however the updated guidance is still draft and may change prior to publication."

Dear Caroline

Thank you for contacting NICE about the Clinical Knowledge Summary (CKS) on tiredness/ fatigue in adults.

We commission an external organisation, Clarity Informatics, to develop the CKS, and make them available as a source of information for health professionals working in primary care, including GPs. They are designed to collate and summarise all the published evidence and guidance, they use a wide range of sources, including NICE guidance if there is any that is relevant, however, the CKS do not represent formal NICE guidance.

You note that we are currently updating the NICE guideline on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome and we are due to publish final guidance on 18 August 2021. In the meantime, the recommendations in our current guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management [CG53] contain our current advice and the CKS is consistent with these recommendations.

We appreciate that there has been a lot of interest in our recommendations on cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) and the draft recommendations in the update differ from the current guideline, however the updated guidance is still draft and may change prior to publication.

The CKS are regularly reviewed to see if an update is needed, the CKS on tiredness/fatigue in adults will be reviewed when we publish final guidance. Updates to the library of CKS topics are generally uploaded to the website monthly. Please revisit the website for updates.

I hope this information is helpful. Please tell us how we did by completing our short survey. It will only take you a couple of minutes.

Kind regards
Janet

Communications Executive
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BD | United Kingdom
Tel: 0300 323 0141 | Fax: 0300 323 0149
Web: http://nice.org.uk
 
Caroline Struthers said:
We commission an external organisation, Clarity Informatics, to develop the CKS, and make them available as a source of information for health professionals working in primary care, including GPs. They are designed to collate and summarise all the published evidence and guidance, they use a wide range of sources, including NICE guidance if there is any that is relevant, however, the CKS do not represent formal NICE guidance.
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This is a pretty shocking admission. We send out info to docs that isn't necessarily what our guidance says - just something dumbed down they can read quickly.

And of course the message comes from a communication executive (just called Janet). So she wouldn't realise just what a howler she is making.
 
Caroline Struthers said:
I heard back from NICE today. I find it a bit chilling/threatening.
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Caroline Struthers said:
We commission an external organisation, Clarity Informatics, to develop the CKS,
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About Clarity Informatics:
https://clarity.co.uk/about-us/

https://clarity.co.uk/about-us/our-team/

The only team member that appears to have medical, clinical and methodological knowledge seems to be a person with interests in "cognitive behavioural therapy, end-of-life care and patient involvement".

Here are his publications on Research Gate.

e.g.
Garland, S. N., Roscoe, J. A., Heckler, C. E., Barilla, H., Gehrman, P., Findley, J. C., Peoples, A. R., Morrow, G. R., Kamen, C., & Perlis, M. L. (2016). Effects of armodafinil and cognitive behavior therapy for insomnia on sleep continuity and daytime sleepiness in cancer survivors. Sleep medicine, 20, 18–24. https://doi.org/10.1016/j.sleep.2015.12.010
 
MSEsperanza said:
About Clarity Informatics:
https://clarity.co.uk/about-us/

https://clarity.co.uk/about-us/our-team/

The only team member that appears to have medical, clinical and methodological knowledge seems to be a person with interests in "cognitive behavioural therapy, end-of-life care and patient involvement".

Here are his publications on Research Gate.

e.g.
Garland, S. N., Roscoe, J. A., Heckler, C. E., Barilla, H., Gehrman, P., Findley, J. C., Peoples, A. R., Morrow, G. R., Kamen, C., & Perlis, M. L. (2016). Effects of armodafinil and cognitive behavior therapy for insomnia on sleep continuity and daytime sleepiness in cancer survivors. Sleep medicine, 20, 18–24. https://doi.org/10.1016/j.sleep.2015.12.010
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Quite a white male dominated enterprise too, I couldn't help noticing...
 
To be fair, this guy has a medical degree:

Russell Mulcahy
Strategy Director
Russell supports the Board and the senior team in developing long term strategy. After qualifying in Medicine, Russell followed his true calling and went on to complete an MSc in Computer Science. Following a long career developing software, and then managing IT businesses, he came full circle by founding the company that developed TeamNet for GPs which joined the Clarity group in 2016.
 
Interesting message from Gillian Leng NICE CEO in Oct 2020, following the Cumberledge Report.

https://us8.campaign-archive.com/?u=7864f766b10b8edd18f19aa56&id=937cda26e1


"Patient safety is defined by NHS Improvement as: ‘The avoidance of unintended or unexpected harm to people during the provision of healthcare.’ Avoiding harm is inherent in the appropriate implementation of best practice advice set out in NICE clinical guidelines, but we also have a specific programme that looks at safety. This was established in 2002 to determine the safety and efficacy of new interventional procedures including: surgical techniques; radiological procedures; endoscopy and other techniques using electromagnetic radiation."
 
Jonathan Edwards said:
This is a pretty shocking admission. We send out info to docs that isn't necessarily what our guidance says - just something dumbed down they can read quickly.

And of course the message comes from a communication executive (just called Janet). So she wouldn't realise just what a howler she is making.
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@Caroline Struthers On the face of it this should be reported - to the Committee which oversees NICE/Department of Health or whatever. You can't publish something and then write a disclaimer saying --- however, the CKS do not represent formal NICE guidance. We commission it but it's not ours!

Yea if you write this then you should employ a communications person:
"We appreciate that there has been a lot of interest in our recommendations on cognitive behavioural therapy (CBT) and/or graded exercise therapy (GET) and the draft recommendations in the update differ from the current guideline, however the updated guidance is still draft and may change prior to publication."
Should this be "draft recommendations [delete "in the update"] differ from the current guideline"?

Yea, how can you get someone, who doesn't have a clue, to respond to queries - call them "a communication executive"
 
FMMM1 said:
You can't publish something and then write a disclaimer saying --- however, the CKS do not represent formal NICE guidance. We commission it but it's not ours!
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My dog are my homework? No, my dog DID my homework. I'm not responsible for my homework, I just want a good grade.

Is that person really expecting that outsourcing their work counts as them not being responsible for it? That's not how this works, that's not how any of this works.
 
Caroline Struthers said:
I heard back from NICE today. I find it a bit chilling/threatening. "...however the updated guidance is still draft and may change prior to publication."

Dear Caroline

Thank you for contacting NICE about the Clinical Knowledge Summary (CKS) on tiredness/ fatigue in adults.
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If they know the guidance is being updated soon then they shouldn't be wasting time and money updating stuff to guidelines that are about to go out of date.
 
I wrote back to Janet. It's very odd not to know her last name...but hey.

Dear Janet (cc Clare Wohlgemuth)

I am primarily concerned that the Cochrane review Cognitive Behaviour Therapy for Chronic Fatigue Syndrome (https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/full) has a note on it saying it should not be used for clinical decision making.

upload_2021-5-24_21-8-41.png

Regardless of whether the draft guidance for ME/CFS changes before publication in August, this editorial note will not. Please could you update the CKS on tiredness in adults so this review is no longer cited to support the management recommendations aimed at primary health professionals?

I have copied in Clare Wohlgemuth as I have recently written to her on the same topic – see attached

With best wishes

Caroline
 
Adrian said:
If they know the guidance is being updated soon then they shouldn't be wasting time and money updating stuff to guidelines that are about to go out of date.
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Unless... they know something we don't about things happening behind the scenes. Or don't even care.

One thing these people have shown time and time again is that they don't take their job seriously, so it wouldn't be especially surprising that they'd keep pretending.
 
rvallee said:
Unless... they know something we don't about things happening behind the scenes. Or don't even care.

One thing these people have shown time and time again is that they don't take their job seriously, so it wouldn't be especially surprising that they'd keep pretending.
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I wonder if someone wanted to update it before the new version comes out as what they do will stay up for a while
 
Dr Ira Madan MBBS (Hons) MD FRCP FFOM
Consultant and Honorary Reader in Occupational Medicine
Guy’s & St Thomas’ NHS Foundation Trust and King’s College London

https://www.mrc.soton.ac.uk/cmhw/dr-ira-madan/
As well as developing national quality indicators for occupational health, she directed a series of evidence-based guidelines and conceived and set up the former Occupational Health Clinical Effectiveness Unit at the Royal College of Physicians, London. She was a member of the Industrial Injuries Advisory Council ( IIAC) for six years until 2017.

Ira currently chairs NIHR, Health Technology Assessment committee on Maternal, child, mental and occupational health. She has been chief medical advisor to the Houses of Parliament since 1999.

Her research interests lie in the relationship between psychosocial factors, physical symptoms and disability. Together with Dr Suzanne Verstappen she is leading the work stream on developing a core outcome set in occupational medicine research.

Ira was appointed as the new Academic Dean for Occupational Medicine from December 2020.
 
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