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NICE Health topics: Tiredness/Fatigue in adults (includes CFS).

Discussion in '2020 UK NICE ME/CFS Guideline' started by Suffolkres, Apr 7, 2021.

  1. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Moved from this thread

    It was suggested yesterday that this Member of the House of Lords local to me is joining Forward ME? She has been asking pertinent questions....



    [​IMG]
    Baroness Scott of Needham Market Liberal Democrat

    To ask Her Majesty's Government why Chronic Fatigue Syndrome (CFS) is not listed on the topics covered by the NHS Clinical Knowledge summary; who authorised the decision to combine CFS with “Tiredness/fatigue in adults”; and when that change was made.

    [​IMG]
    Lord Bethell The Parliamentary Under-Secretary for Health and Social Care

    The National Institute for Health and Care Excellence (NICE) Clinical Knowledge Summary Tiredness/fatigue in adults was published in October 2009 and there has been no change in the way it is titled over the subsequent period. NICE advises that the inclusion of Chronic Fatigue Syndrome (CFS) within the tiredness/fatigue topic is to ensure that clinicians will consider CFS as a potential diagnosis as early as possible in the course of care of a person presenting with symptoms of tiredness and fatigue.

    In 2007 NICE published the guideline, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. This is currently being updated and a draft guideline is out for consultation with the final guidance expected in April 2021. The CFS diagnosis and management sections in the Clinical Knowledge Summary on Tiredness/Fatigue are kept in line with NICE guidance on CFS and will be updated following publication of the new guidance if necessary.
     
    Last edited by a moderator: Apr 8, 2021
  2. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    For consistency, shouldn't we be asking for this https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults also to at least have a risk warning on it, or to be withdrawn pending?
    Coould Forward ME or APPG ask?




    https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/ (my emboldened)

    'Tiredness/fatigue in adults: Summary
    • There is no universal definition of tiredness/fatigue, and its experience and perception are subjective.
      • Fatigue may be defined as severe mental and physical exhaustion, which differs from somnolence or lack of motivation, and which is not attributable to exertion or diagnosable disease.
      • Chronic fatigue syndrome (CFS) may be defined as persistent or recurrent debilitating fatigue that is not lifelong, or the result of ongoing exertion, or alleviated by rest, or explained by other conditions, and that results in a substantial reduction in activity.
    • Fatigue symptoms can be a non-specific indicator of underlying physiological or physical pathology, psychosocial distress, or a combination of causes. The exact aetiology and pathophysiology of CFS is unknown.
    • Risk factors for self-reported fatigue include being female, having a higher body mass index (BMI), lower socioeconomic status, and having an associated physical or psychosocial comorbidity.
    • Possible complications of fatigue include negative impact on work, family life, social relationships, and quality of life; increased risk of anxiety and depression; and excess mortality risk.
    • Assessment of a person presenting with tiredness/fatigue should include asking about:
      • What the person means by tiredness.
      • The onset, duration, severity, and precipitating factors.
      • The effect of sleep, rest, and exercise on symptoms, and the impact on daily activities.
      • Sleep pattern and quality.
      • Any psychosocial life events or stressors.
      • Any comorbid anxiety and/or depression.
      • Any comorbid chronic conditions.
      • Any contributory medications.
      • Possible symptoms of CFS, such as persistent unexplained fatigue for at least 4 months, post-exertional fatigue or malaise, cognitive difficulties or memory problems, sleep disturbance, and chronic pain.
      • Any red flags suggesting a serious underlying condition, such as significant unintentional weight loss, fever, night sweats, persistent lymphadenopathy, and localizing or focal neurological signs.
    • Investigation of unexplained persistent tiredness/fatigue may include, depending on clinical judgement:
      • Arranging first-line blood tests, such as full blood count, inflammatory markers, renal and liver function tests, thyroid function tests, HbA1c, and coeliac serology.
      • Considering additional tests on a case-by-case basis.
      • Arranging second-line tests if symptoms persist for 3 months or longer.
    • Management of a person with persistent tiredness/fatigue includes:
      • Arranging referral to an appropriate secondary care specialist if there is a suspected or confirmed underlying physical cause that cannot be managed in primary care.
      • Arranging referral to a specialist CFS service for possible cognitive behavioural therapy (CBT) and/or graded exercise therapy, if CFS diagnostic criteria are met.
      • Managing any underlying causes and contributory factors.
      • Offering advice on sources of information and support.
      • Managing any associated stress, anxiety, and/or depression.
      • Offering advice on sleep hygiene.
      • Offering lifestyle advice, including on physical and cognitive activities, rest periods, relaxation techniques, and healthy eating...'
     
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  3. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Seriously. this must be addressed and NICE challenged! Otherwise they will lose what little credibility they have and the BPS are doing their deeds by the back door!
    This is aimed at health professionals!



    Tiredness/fatigue in adults: References
    Last revised in March 2020



    https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/how-this-topic-was-developed/

    Tiredness/fatigue in adults: Supporting evidence
    Last revised in March 2020


    This CKS topic is largely based on the National Institute for Health and Care Excellence (NICE) clinical guideline Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of CFS/ME in adults and children [NICE, 2007], two Cochrane systematic reviews Cognitive behaviour therapy for chronic fatigue syndrome in adults [Price, 2008] and Exercise therapy for chronic fatigue syndrome [Larun, 2019], several cohort studies of the prevalence and impact of fatigue and chronic fatigue syndrome, and expert opinion in review articles. The rationale for the individual recommendations is discussed in the relevant basis for recommendation sections.
     
    Last edited: Apr 8, 2021
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  4. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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    This is terrible! I can't believe they are just using those two Cochrane reviews which have been excluded from the draft ME/CFS guideline. I will also write to them and point out that Cochrane have put a note on the CBT review to say it should not be used. And tweet it.
     
  5. Midnattsol

    Midnattsol Moderator Staff Member

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    3,591
    I am not able to read these webistes outside uk, could someone post a summary? :)
     
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  6. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Thank you Caroline. I am beside myself fearing the worst when I submitted my stakeholder review response in December. I objected to the word"Suspected" in the draft but was asked not to comment or make that objection by my group.
    Seeing the content of this backdoor approach by NICE ( Revision of this March 2020) conforms my worst fears about what is really going on.....
     
    Last edited: Apr 8, 2021
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  7. Trish

    Trish Moderator Staff Member

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    It seems that as well as guidelines like the ME/CFS one for specific diseases, NICE also has 'Health Topics', of which one is 'Tiredness/Fatigue in Adults'. As in the sections quoted above, it refers the reader to the current (out of date) CFS/ME guideline, and it appears from the parliamentary response above that it will be updated when the new guideline is finalised.
    It has sections on Diagnosis, Management and Background Information, plus the summary posted above.
     
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  8. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I don't believe so, as the 'review' for 'Tiredness/Fatigue in Adults' is 'programmed' and was done March 2020!

    Scope of search
    A literature search was conducted for guidelines and systematic reviews on primary care evaluation and management of tiredness/fatigue in adults, and the initial presentation/management of people with chronic fatigue syndrome (CFS).

    Search dates
    January 2015 - January 2020

    Key search terms
    The terms listed below are the core search terms that were used for EBSCOhost MEDLINE (searched 7th October 2019, update searches completed 28th January 2020). These were combined with filters to identify guidelines, systematic reviews and primary care relevant literature in EBSCOhost MEDLINE. The strategy was adapted for The Cochrane Library databases.

    S5 S1 OR S2 OR S3 OR S4
    S4 AB ( fatigue* or tired* or letharg* or TATT or CFS or myalgic encephalomyelitis or myalgic encephalopathy ) OR TI ( fatigue* or tired* or letharg* or TATT or CFS or myalgic encephalomyelitis or myalgic encephalopathy )
    S3 (MH "Lethargy")
    S2 (MH "Fatigue Syndrome, Chronic")
    S1 (MH "Fatigue+")

    Sources of guidelines
    Sources of systematic reviews and meta-analyses
    • The Cochrane Library:
      • Systematic reviews
      • Protocols
      • Database of Abstracts of Reviews of Effects
    • Medline (with systematic review filter)
    • EMBASE (with systematic review filter)
    Sources of health technology assessments and economic appraisals
    Sources of randomized controlled trials
    • The Cochrane Library:
      • Central Register of Controlled Trials
    • Medline (with randomized controlled trial filter)
    • EMBASE (with randomized controlled trial filter)
    Sources of evidence based reviews and evidence summaries
    Sources of national policy
    Patient experiences
    Sources of medicines information
    The following sources are used by CKS pharmacists and are not necessarily searched by CKS information specialists for all topics. Some of these resources are not freely available and require subscriptions to access content.

     
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  9. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Tiredness/fatigue in adults: Changes
    Last revised in March 2020

    Changes
    February to March 2020 — reviewed. A literature search was conducted in February 2020 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of the topic. The topic has undergone minor restructuring. Recommendations have been updated in line with current evidence. The section on Red flags in the Diagnosis section has been deleted and the content incorporated into the Assessment node. No major changes to the recommendations have been made.

    Previous changes
    January to February 2015 — reviewed. A literature search was conducted in January 2015 to identify evidence-based guidelines, UK policy, systematic reviews, and key randomized controlled trials published since the last revision of this topic. No major changes to the recommendations have been made.

    July to October 2009 — this is a new CKS topic. The evidence base has been reviewed in detail, and recommendations are clearly justified and transparently linked to the supporting evidence.
     
  10. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    New evidence
    Evidence-based guidelines

    • Brown, J., Makker, H.K. (2020) An approach to excessive daytime sleepiness in adults. BMJ. www.bmj.com [Abstract]
    HTAs (Health Technology Assessments)

    No new HTAs since 1 March 2020.

    Economic appraisals
    No new economic appraisals relevant to England since 1 March 2020.

    Systematic reviews and meta-analyses
    No new systematic reviews published since 1 March 2020.

    Primary evidence
    No new primary evidence published since 1 March 2020.

    New policies
    No new national policies or guidelines since 1 March 2020.

    New safety alerts
    No new safety alerts since 1 March 2020.

    Changes in product availability
    No changes in product availability since 1 March 2020
     
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  11. Trish

    Trish Moderator Staff Member

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    It gets stranger and stranger. Why would they have two completely separate review processes happening at the same time for the same condition and coming to different conclusions?
     
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  12. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Tiredness/fatigue in adults: Supporting evidence
    Last revised in March 2020

    Supporting evidence
    This CKS topic is largely based on the National Institute for Health and Care Excellence (NICE) clinical guideline Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of CFS/ME in adults and children [NICE, 2007], two Cochrane systematic reviews Cognitive behaviour therapy for chronic fatigue syndrome in adults [Price, 2008] and Exercise therapy for chronic fatigue syndrome [Larun, 2019], several cohort studies of the prevalence and impact of fatigue and chronic fatigue syndrome, and expert opinion in review articles. The rationale for the individual recommendations is discussed in the relevant basis for recommendation sections.
     
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  13. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I suspect there is mischief afoot; me thinks of what Prof Mark Baker described as the "ME Mafia" to me in a private conversation at the engagement event!

    Plus NICE adhere to their own process manual even if it outlines a process outside Government best practice or statutory Guidance (eg on consultation length).
     
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  14. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I have copied over from website text (I hope this is ok mods)
     
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  15. Caroline Struthers

    Caroline Struthers Senior Member (Voting Rights)

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  16. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    https://cks.nice.org.uk/topics/tiredness-fatigue-in-adults/diagnosis/diagnosis-of-cfs/

    Basis for recommendation


    • Note: NICE recommends that a diagnosis of CFS should be reconsidered if none of the following features are present:
      • Post-exertional fatigue or malaise.
      • Cognitive difficulties.
      • Sleep disturbance.
      • Chronic pain.
    Basis for recommendation (my emphasis)
    The recommendations on diagnosis of chronic fatigue syndrome (CFS) are based on the National Institute for Health and Care Excellence (NICE) clinical guideline Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management of CFS/ME in adults and children [NICE, 2007], a cross-sectional study on the prevalence of CFS [Slomko, 2019], and expert opinion in review articles on investigating unexplained fatigue [Bansal, 2016] and on chronic fatigue syndrome (CFS) [Fukuda, 1994].

    Suspecting a diagnosis of CFS
    • The diagnostic criteria for CFS are largely based on the NICE clinical guideline [NICE, 2007].
    • A cross-sectional study in Poland of people presenting with self-reported fatigue (n = 1400) who had a diagnosis of CFS (n = 69) noted that CFS can be challenging to diagnose, as it is not a clearly defined, uniform disease, but presents as non-specific symptoms that overlap with other conditions. Of the subset of people identified with CFS [Slomko, 2019]:
      • 50% of people had diagnosed 'orthostatic intolerance' or autonomic dysfunction.
      • 62% had excessive daytime sleepiness.
      • 38% had significant anxiety.
      • 32% had symptoms of depression.
    • Expert opinion in a review article notes that confidently diagnosing CFS as the cause of persistent fatigue may help reduce patient and doctor anxiety, reduce the need for further investigations, allow early intervention, and improve prognosis and likelihood of recovery [Bansal, 2016].
    • The recommendation to ensure that symptoms are not explained by other conditions including severe obesity is based on expert opinion in a review article that notes that severe obesity may exclude a person from a diagnosis of unexplained CFS [Fukuda, 1994]. In addition, a Swiss population-based cross-sectional survey notes that people with obesity have excessive fatigue scores independently of the increased risk of sleep apnoea and associated daytime sleepiness [Galland-Decker, 2019].
    • The information that severe obesity does not rule out a diagnosis of CFS is pragmatic, based on what CKS considers to be sensible clinical practice.
    • The clinical criteria for when a diagnosis of CFS should be reconsidered is based on the NICE clinical guideline [NICE, 2007].
     
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  17. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    :nailbiting:
     
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  18. Andy

    Andy Committee Member

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  19. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Yes, outsourced to a "private" sector company answerable to Companies house but not patients or carers even though funded from the public purse...
    Clarity Informatics Ltd
    Information Technology and Services
    Newcastle upon Tyne, Tyne & Wear


    allegedly......the following available on the internet.....
    Company size
    11-50 employees


    Privately Held
    Founded
    1993
    Specialties
    Clinical Knowledge, Web Software, information sharing, compliance, e learning, clinical decision support, clinical guidelines, appraisal software, workforce solutions, and eportfolios

    Employees at Clarity Informatics Ltd

     
    Last edited by a moderator: Apr 8, 2021
  20. Andy

    Andy Committee Member

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    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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