NHS Health at Work website

Sly Saint · Nov 10, 2022

In dire need of updating

links to 2006
Occupational Aspects of the Management of
Chronic Fatigue Syndrome: a National Guideline

2008
Healthcare professionals leaflet

2008
Employers leaflet.

https://www.nhshealthatwork.co.uk/chronic-fatigue.asp

@adambeyoncelowe

adambeyoncelowe · Nov 10, 2022

Sly Saint said: ↑

In dire need of updating

links to 2006
Occupational Aspects of the Management of
Chronic Fatigue Syndrome: a National Guideline

2008
Healthcare professionals leaflet

2008
Employers leaflet.

https://www.nhshealthatwork.co.uk/chronic-fatigue.asp

@adambeyoncelowe

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Oh yes, I am aware of this. It's woefully outdated. But thanks for reminding me.

bobbler · Nov 10, 2022

Actually the following looks like quite an important historical document to save: https://www.nhshealthatwork.co.uk/images/library/files/Clinical excellence/CFS_full_guideline.pdf

Worth noting the individuals who were involved in putting this together.

All the cliches we know of historically in suggesting worse outcomes are associated with rest, support groups, accessing financial support

The section on 'history of the condition' is also a bit of a wow in narrative-sewing as it begins by stating that the condition was first discovered as 'neurasthenia' then states 'later on terms that suggested biological like EBV, ME etc'. And covers all the cliches on what doctors think of ME as a term (unproven), and is very much sewing the proposal that all these various things like fibro, IBS, all lie under this 'MUS' term simply because there is overlap (and of course all of this is under that heading of being under that 'what used to be known as neurasthenia' opening gambit).

Historical context

Although the term “chronic fatigue syndrome” is a relatively new diagnostic label, similar syndromes have been described in the past. In the late nineteenth century, a syndrome was described which was characterised by severe fatigue, exacerbated by exertion and accompanied by other symptoms including poor concentration, irritability and muscle pain. This was known as “neurasthenia”, a condition of uncertain cause that at the time was commonly attributed to “the stresses of modern life on the human nervous system” [9].

In the 20th Century, the diagnosis of neurasthenia declined and eventually fell out of common use. It is possible that the incidence of these symptoms in the population also declined. However, it seems more likely that patients with similar symptoms were given alternative diagnoses. These included diagnoses that suggested aetiological agents or specific disease processes such as chronic brucellosis, chronic Epstein-Barr virus and myalgic encephalomyelitis (ME), as well as the psychiatric diagnoses of depression and anxiety.

The term “myalgic encephalomyelitis” (ME) was first used in 1956 after an outbreak of illness among nursing and medical staff at the Royal Free Hospital in London. The cause of this outbreak remains uncertain. The term implies a pathological process of inflammation of the brain and spinal cord which, to date, has not been shown to be present in individuals with CFS. However, the term “ME” is still often used, mainly by patients, as synonymous with CFS and patient organisations are increasingly using the term “myalgic encephalopathy”.

In the past 20 years, the medical profession has increasingly come to believe that the symptoms of individuals with CFS are not readily explained either by recognisable organic disease or by depression and anxiety. The term “medically unexplained” has been used to address the lack of a clearly understood aetiology [10]. Other medical conditions that have been categorised in this group include fibromyalgia, irritable bowel syndrome and chronic pain syndromes.

Although chronic pain syndromes are characterised by pain, fibromyalgia by tender points and irritable bowel syndrome by altered bowel function, these syndromes are all accompanied by the symptom of fatigue. It has also been observed that an individual with one of the foregoing conditions is more likely than average to suffer from another in the group. This has led to the proposal that they share a common pathophysiology and are best grouped together [11].

Before a diagnosis of CFS is made, it is important that other medical conditions are excluded. These include conditions such as thyroid disorders and anaemia, which typically can present with tiredness. Other less common conditions that also cause fatigue, such as sleep apnoea and coeliac disease, may need to be considered. The initial investigations in individuals presenting with fatigue are likely to be undertaken by their general practitioner, with referral on to secondary care at a later stage, if appropriate.
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Reference [10] is: 10. Sharpe M. Chronic fatigue syndrome. Consultation-Liaison Psychiatry 1996, 19(3):549–573.

Reference [11] is: 11. Hudson JI, Goldenberg DL, Pope HGJ et al. Comorbidity of fibromyalgia with medical and psychiatric disorders. American Journal of Medicine 1992, 924)363–367.

Page 23 is an interesting note - they added in a search for neuresthenia.

Selection of papers for critical appraisal

A librarian at the Department of Health undertook the literature search outlined above. This yielded a total of 188 abstracts, after removal of duplicates. The GDG also decided, at a group meeting on 18 February 2005, to repeat the search strategy above using the search terms “ME”, “myalgic encephalomyelitis” and “neurasthenia” instead of CFS. This yielded a total of 54 abstracts. All of these abstracts were reviewed independently by the GDGL and the Project Director to select papers which appeared to meet the criteria for the three key questions.
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I don't know on page 22 whether the databases searched is a complete list or any might have been added. But on page 26 there seem to be some 'limitations' that need to be unbundled e.g. what is the 'grey literature'?

Limitations of the Literature Review

These include:
1. Publication bias – there is a tendency for only studies with positive results to be published.

2. Study bias – there is a bias towards CBT rather than other forms of psychotherapy.

3. Published studies have tended to focus on individuals with CFS who are attending specialist clinics. They may therefore exclude those least affected or more severely affected (who may not be ambulant).

4. Due to time and resource limitations, the “grey literature” on CFS was not comprehensively searched. The two external assessors are experts in the field of CFS and they indicated that they were content that all relevant research had been identified in the review
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Note the two external assessors were White and Sharpe

bobbler · Nov 10, 2022

For those looking for recovery references the following para and reference might be worth a read (I haven't done so in detail due to energy but it seems to have potential):

Prognosis

Published studies have tended to focus on people attending specialist clinics. A recent systematic review of the prognosis of untreated CFS reviewed studies from 1980 to 2003 [46]. This review showed that although full recovery from CFS is rare, many individuals with CFS do improve with time. The median full recovery rate was 5% (range 0–31%) and the median proportion of patients who improved during follow-up was 39.5% (range 8–63%) The duration of follow-up in the studies included in this systematic review varied from six months to 10 years.
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ref [46] is: 46. Cairns R, Hotopf M. A systematic review describing the prognosis of chronic fatigue syndrome. Occupational Medicine 2005, 551)20–31.

A study published in 2003 [47] followed up 65 individuals with CFS for up to three years and showed that only 20–33% were classified as having CFS at follow-up. At some point in the follow-up period, 57% experienced partial or total remission; 10% sustained total remission and 23.1% received alternative diagnoses, of which 20% were sleep disorders.
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ref [47] is: 47. Nisenbaum R, Jones JF, Unger ER, Reyes M, Reeves WC. A population-based study of the clinical course of chronic fatigue syndrome. Health and Quality of Life Outcomes 2003, 11)49–57.

A quick glance at this last one is quite interesting, worth a read by someone when less tired. I can't make my mind up on it from a glance but it for example has a different set of measures to many papers we see. There is discussion of asking about fatigue between clinic visits and the results suggests symptoms were also logged. One is 'Wellness scores, hours spent on activities and sleep during the past month', the other
a different fatigue scale (which includes reaction to things like hot and cold):

Fatigue Assessment Instrument
Fatigued subjects also completed the 29-item Fatigue Assessment Instrument [9] and scores were calculated for four fatigue subscales: overall fatigue severity, situation-specific fatigue (measuring fatigue sensitivity to particular circumstances, such as heat, cold, and stress), fatigue consequences (measuring loss of patience, motivation or ability to concentrate), and fatigue responsiveness to rest or sleep.
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ref[9] is: Schwartz JE, Jandorf L, Krupp LB. The measurement of fatigue: a new instrument. Psychosomatic Res. 1993;37:753–762. doi: 10.1016/0022-3999(93)90104-N. [PubMed] [CrossRef] [Google Scholar]

Esther12 · Nov 10, 2022

re updating it, they say:

Review Date: 2011

And:

A large multi-centre RCT is currently under way, comparing these three treatments as
supplements to medical care with medical care alone. The trial, “Pacing, activity and cognitive
behaviour therapy: a randomised evaluation (PACE) will include work outcomes [43].
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Perhaps the poor results from PACE reduced enthusiasm for an update?

Ira Madan does not seem a great person for us. There are still traces of her discussions around these guidelines on the internet, and I think I remember more from a decade ago.

She supervised this (seemingly still unpublished?) review that won an award (from an organisation Madan was on the board of trustees of) in 2019: https://www.fom.ac.uk/clinical-excellence-awards/peter-taylor-award-winner-announced

CRG · Nov 10, 2022

Just to note although it's not in the organisation's title, this is an NHS England specific body, made clear in its Constitution.

Certainly there shouldn't be any problem relating any update to NICE 2021, although there is a bureaucratic aspect to consider in that the primary guiding principles come via Occupational health regulations, not from NICE guidance - if anyone has the capacity to chase this up - it might be worth contacting the NHS Unions whose members are primarily on the receiving end of NHS Health at Work guidance.

NelliePledge · Nov 10, 2022

Esther12 said: ↑

re updating it, they say:

Review Date: 2011

And:

Perhaps the poor results from PACE reduced enthusiasm for an update?
Click to expand...

Wow that’s some determined overlooking

Suffolkres · Nov 10, 2022

I know MEAction & 25% Group are on this case with DHSC
I have been petitioning and trying unsuccessfully since 2006!
Even with Mark Baker at the NICE Engagements event ....

livinglighter · Nov 11, 2022

Knowing the biomedical research into ME/CFS, I found the document very disturbing to read.

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