(UK) CFS/ME – Guidelines for the Disability Analyst

[Dolphin]

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) – Guidelines for the Disability Analyst

http://bit.ly/1osX9Qq
i.e.
https://www.whatdotheyknow.com/requ...13 MED S2 CMEP 0017 Mod 6 Chronic Fatigue.pdf

This was obtained today by Connie Nelson with a freedom of information request
https://www.whatdotheyknow.com/request/cfsme_guidelines_for_the_disabil_2#incoming-770712

 

[Denise]

Because you knew it HAD to be in there....

 

[Esther12]

A few references to that Crawley Outcomes paper, including in their further reading section:

Further Reading
 DWP’s published medical guidance for DLA/ AA, available on sharepoint or
on the internet http://www.dwp.gov.uk/publications/specialist-guides/medical-
conditions/a-z-of-medical-conditions/
 Occupational aspects of the Management of Chronic Fatigue Syndrome: A
National Guideline (2006)-
http://www.anhops.com/docs/92_8_273539_CFSyndrome_full_review.pdf
 Treatments for chronic fatigue syndrome (Occupational Medicine review – K
A Rimes & T Chalder 2005) - http://www.ncbi.nlm.nih.gov/pubmed/15699088
 Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic
encephalomyelitis in adults or children - NICE Guidelines (National
Collaborating Centre for Primary Care & Royal College of GPs) –
http://www.nice.org.uk/nicemedia/live/11824/36191/36191.pdf
 A systematic review describing the prognosis of chronic fatigue syndrome (R.
Cairns & Hotopf 2005) - http://www.ncbi.nlm.nih.gov/pubmed/15699087
 Chronic Fatigue Syndrome: A Review (Afari N & Buchwald, D) -
http://www.ncbi.nlm.nih.gov/pubmed/12562565
 CDC information on Chronic Fatigue Syndrome http://www.cdc.gov/CFS/

 Carruthers BM, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM
et al. (2003) Myalgic encephalomyelitis/chronic fatigue syndrome: clinical
working case definition, diagnostic and treatment protocols. Journal of
Chronic Fatigue Syndrome 2003; 11(1):7- 115
http://www.aqem.org/includes/documents/consensus canadian(full).pdf -
page=18
 Crawley E et al. Treatment outcome in adults with chronic fatigue syndrome:
a prospective study in England based on the CFS/ME National Outcomes
Database. Quarterly Journal of Medicine, 2013, 6, 555- 565
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/pdf/hct061.pdf
 CMO Working Group Report –
http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.go
v.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitala
sset/dh_4064945.pdf
 NHS - http://www.nhs.uk/conditions/chronic-fatigue-
syndrome/pages/introduction.aspx
 Holgate ST et al. Chronic fatigue syndrome: Understanding a complex
illness. Nature Reviews Neuroscience, 2011, 12, 539 – 544
http://www.ncbi.nlm.nih.gov/pubmed/21792218
MED-CMEP~0017

 Having to stop work or education is generally detrimental to people’s health
and well-being. Address each person’s ability to continue in education or work
early, and review it regularly.
 Proactively advise about fitness for work and education, and recommend
flexible adjustments or adaptations to help people to return to them when they
are ready and fit enough. A graded return to work is often helpful

Lots of slightly interesting bits. This on PACE, including the paragraph at the end that sounds like pure PD White BS. I wonder who wrote it?:

An article published in The Lancet in March 2011 gave details of results from a
randomised trial - PACE study - which looked at Adaptive Pacing Therapy (APT),
Cognitive Behaviour Therapy (CBT), Graded Exercise Therapy (GET) and Specialist
Medical Care (SMC) in the treatment for Chronic Fatigue Syndrome (CFS). The
results suggested that CBT and GET could safely be added to SMC to moderately
improve outcomes for CFS but APT was not an effective addition14. There were no
differences between the groups of reported serious deterioration or serious adverse
reactions.
The ME Association issued a press statement on the results of the PACE trial on the
18th of February 2011, which stated that ‘the results are at serious variance to
patient evidence on both cognitive therapy and exercise therapy’. This was based on
results from a survey performed by the ME Association in 200815, during which a
comprehensive questionnaire was sent to people with Chronic Fatigue Syndrome
and their carers, which suggested that pacing was found to be more beneficial than
Graded Exercise therapy.
Recent research reviewed treatment outcomes for patients attending NHS CFS/ME
specialist services16. One of the aims of the research was to see whether the
outcomes were similar to those of the PACE trial. Patients attending NHS specialist
CFS/ME services were treated with CBT, GET, a combination of both or activity
management, in group and/ or individual treatment sessions of varying numbers and
lengths. The evidence showed that although improvements in fatigue similar to the
PACE trial were present, there was far less improvement in levels of physical
function in a clinical setting. One of the factors postulated for the difference was the
amount of treatment patients underwent. In NHS it appeared that patients were
offered 5-6 sessions, whereas in the PACE trial it was 12-14 sessions. There may
also be differences in the content of the treatment offered between the trial and
clinical settings. However it is clear that further research is required for further
clarification of treatment outcomes.

At times it appears that the arguments and controversies around the aetiology of
CFS/ME detract from the management of the condition itself. Following a
biopsychosocial model of illness reinforces the idea of an illness having both
physical and mental components with social influences. Understanding and treating
CFS/ME should be less about the dichotomy of whether it is a physical illness or a
mental illness and more about recognising the complex nature of the condition. The
management regime offered should be effective in helping the patient and improving
their condition no matter what the aetiology of the condition.


.7 Prognosis
CFS/ME is not associated with increased mortality. Studies have shown that whilst
some patients do improve (figures vary from 17 to 64%), between 10-20% worsen
over time and less than 10% recover fully to a pre-morbid level of functioning.
CFS/ME often follows a variable fluctuating course with periods of remission
interspersed with relapses.
Factors that have been associated with a poorer prognosis include17:
 Older age
 Longer illness duration
 Fatigue severity
 Comorbidities ( psychiatric or physical)
 Physical attribution of symptoms
However a recent study looking at treatment outcomes did not find that depression,
anxiety or duration of illness predicted outcome. 18

 

[Esther12]

A lot of the bits likely to be damaging to claimants are from NICE. I wonder what evidence there is for this?

Proactively advise about fitness for work and education, and recommend
flexible adjustments or adaptations to help people to return to them when they
are ready and fit enough. A graded return to work is often helpful
Liaise, with the person’s informed consent, with
 Employers and occupational health services
 Disability services through Jobcentre Plus
 Social care and Education services

"Psychological and social factors appear to be involved in perpetuating the symptoms of the illness. Factors associated with increased fatigue and severity of the condition include: a strong belief in the physical cause of the illness, a focus on bodily sensations and a poor sense of control over the complaints 6,7. Evidence suggests that patients with CFS/ME use more avoidance strategies to cope with the debilitating effects of fatigue. However avoidance strategies have been associated with more fatigue and more functional impairment, including greater psychosocial
disturbance in CFS/ME 8,9."

[Just found this post had been saved and not posted]

 

[Sean]

"Psychological and social factors appear to be involved in perpetuating the symptoms of the illness. Factors associated with increased fatigue and severity of the condition include: a strong belief in the physical cause of the illness, a focus on bodily sensations and a poor sense of control over the complaints 6,7. Evidence suggests that patients with CFS/ME use more avoidance strategies to cope with the debilitating effects of fatigue. However avoidance strategies have been associated with more fatigue and more functional impairment, including greater psychosocial
disturbance in CFS/ME 8,9."

All of which can also be explained (in principle) as the direct or indirect consequences of a chronic primary physical pathology.

But not in the Church of BPS, where all causal roads lead to somatising, and there is never any need to consider alternative explanations.

 

[anciendaze]

While ME/CFS still lacks a convenient biomarker, there are a number of genetic diseases which have them and can be mistaken for CFS if there are no clear clinical signs. One such is Ehlers-Danlos syndrome. It turns out that many people with the genes, even for autosomal dominant forms, do not exhibit the joint hypermobility most clinicians expect, if they even consider this. There is also the problem that new genetic variants continue to be found.

I've checked that such patients do show up in psychiatric practice, not just rarely in the literature, but also in common practice, when psychiatrists are aware of the possibility. Since the classic clinical sign of joint hypermobility is not always present in adults, and can be overlooked, it seems likely that a diagnosis of CFS by Oxford criteria must concentrate such patients from the general population. A ratio of 1:100 in incidence could result, with the implication that such patients are far more likely to be found in a "CFS" cohort than most doctors expect. This raises the probability of seeing one to the point that it cannot be ignored.

These patients exhibit fatigue and pain with: "a strong belief in the physical cause of the illness, a focus on bodily sensations and a poor sense of control over the complaints".

Anyone know about genetic testing for EDS in ME/CFS cohorts?

Anyone doubt that standard Oxford advice for treating CFS could harm EDS patients?