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What is known about severe and very severe chronic fatigue syndrome? A scoping review

Dolphin

Senior Member
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17,567
What is known about severe and very severe chronic fatigue syndrome? A scoping review

Victoria Strassheima, Rebecca Lambsonb, Katie L. Hackettc and Julia L. Newtond,e

aCRESTA Fatigue Clinic, MClinRes, Newcastle upon Tyne Hospitals, NHS Foundation Trust, Newcastle upon Tyne, UK;
bFaculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, UK;
cCRESTA Fatigue Clinic, Newcastle upon Tyne Hospitals NHS and Musculoskeletal Research Group, Institute of Cellular Medicine, Newcastle University, Newcastle upon Tyne, UK;
dCRESTA Fatigue Clinic, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK; eClinical Academic Office, Faculty of Medical Sciences, Newcastle University, Newcastle upon Tyne, UK

ABSTRACT

Background:

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) affects 0.4% of the population. It is characterised by disabling fatigue and a combination of self-reported symptoms which include impairments in concentration, short-term memory, sleep disturbances, post-exertional malaise and musculoskeletal pain. There are four categories of severity in the CFS/ME population: mild; moderate; severe; and very severe which are expanded on elsewhere and adopted by the National Institute for Health and Care Excellence [NICE. Chronic fatigue syndrome/ myalgic encephelomyelitis diagnosis and management in adults and children; 2007]. Objective: Identify research relating to those severely and very severely affected by CFS/ME.

Methods:

We searched electronic databases for relevant studies using pre-defined search terms: ‘chronic fatigue syndrome’ and ‘sever$’ which covers ‘severe’ and ‘severely’. Included were English language papers published in full that discretely identified severely and very severely affected CFS/ME populations from the broader CFS/ME population.

Results:

Over 2000 papers were reviewed and 21 papers met the selection criteria. The capture produced both adult and paediatric populations with a variety of methodologies. Wide differences in illness characterisation, definition and measurement were found. Case studies reported that in extreme presentations very severe CFS/ME individuals may be confined to bed, requiring reduced light and noise exposure.

Conclusion:

This review highlights the limited research focusing on the severely affected CFS/ME population. The heterogeneity of the condition contributes to the lack of consensus concerning definitive diagnostic criteria and functional measures to assess disability. Focused research to understand the disease characteristics of the most severely ill will help to advance our understanding of possible phenotypes associated with distinct severity categories.
 

Dolphin

Senior Member
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17,567
I didn't find this exciting but I suppose they can only write about published studies.

They found 7 intervention studies: all 7 approaches were behavioural, with one also mentioning antidepressants.

A bit depressing that so little has been tried for the condition in its severe form.
 

Dolphin

Senior Member
Messages
17,567
I have to say I get nervous when physiotherapists are involved with ME/CFS especially in its more severer forms.

I didn't find much in this paper that was particularly reassuring.
Notes on contributors

Victoria Strassheim, BHSc Physiotherapy, Masters Clinical Research, is a clinical researcher working in
a clinic for fatigue. She is researching individuals with severe CFS/ ME and has a specialist interest in
the rehabilitation of complex disabilities.

Rebecca Lambson, MBBS, MRes, is a foundation doctor at Queen Elizabeth Hospital Gateshead, currently
working in acute medicine, following graduation from Newcastle University Medical School.
She has an interest in the symptoms of fatigue, particularly the management and treatment of
CFS/ME.

Katie L. Hackett, BSc (Hons) Occupational Therapy, MSc Research Methods, is an arthritis research UK
training fellow. Her PhD research is focused on developing service user-informed, evidence-based,
non-pharmacological interventions for people with primary Sjogren’s syndrome in order to
improve participation in everyday activities.

Julia L. Newton is the director of Newcastle Academic Health Partners & Clinical Professor of Ageing
and Medicine. Her research programme focuses upon the integrity of the autonomic nervous system
in health and disease, specifically the role of autonomic dysfunction in the pathogenesis of fatigue
and its clinical consequences, namely cognitive impairment.
 

Dolphin

Senior Member
Messages
17,567
National Health Service (NHS) specialist CFS/ME services have demonstrated improvements in some areas such as fatigue, anxiety and depression using cognitive behavioural therapy (CBT) and graded exercise therapy (GET). However, differentiation between severity categories has not been made when investigating such improvements [15].

[15] Crawley E, Collin SM, White PD, et al. Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM. 2013;106(6):555–565.
Results were not particularly good. I would have preferred if they hadn't mentioned this.
 

Invisible Woman

Senior Member
Messages
1,267
I didn't find this exciting but I suppose they can only write about published studies.

They found 7 intervention studies: all 7 approaches were behavioural, with one also mentioning antidepressants.

A bit depressing that so little has been tried for the condition in its severe form.

Very true but far better to leave the severe and very severely affected alone until they can at least guarantee they will do no harm.
 

Dolphin

Senior Member
Messages
17,567
Focused on disability evaluations, the Workwell group’s two-day Cardiopulmonary Exercise Testing (CPET) and disability [47] protocol objectively measures functional capacity in CFS/ME. CPET has been used in other areas of medicine [48,49]. By characterising ventilatory response to maximal exercise, CPET measures overall oxygen uptake from the lungs to the blood and metabolism in the peripheral musculature [48]. Therefore it may be useful in identifying potential causes of fatigue such as oxygen uptake deficiencies and carbon dioxide and peripheral metabolic abnormalities [48]. Although as yet, CPET has not been tested in severe and very severe CFS/ME individuals, its reported application in documenting post exertional malaise is interesting.
Although the results are interesting, it seems very odd to mention this test in relation to those with severe and very severe ME/CFS. It clearly would not be suitable.
 

Dolphin

Senior Member
Messages
17,567
The trajectory leading to increasing disability in severe CFS/ME is also poorly characterised, possibly because of the broad range of symptom presentations and multiple manifestations of physical dysfunction. For example, if a patient has positional orthostatic tachycardia syndrome (POTS) [53] in combination with CFS/ME, they will feel dizzy upon standing and therefore limit their upright posture. This could result in muscle weakness in anti-gravity muscles, further autonomic symptoms and post-exertional malaise. Such restricted exposure to the environment over an extended period of time may be detrimental to the individual severely affected by CFS/ME, in extreme cases leading to hypersensitivity to light and sound. POTS would constitute an identifiable physiological dysfunction that leads to a physical dysfunction, providing an objective measure.
I am frustrated that this trajectory, basically deconditioning, is the only one explicitly mentioned.
 

Dolphin

Senior Member
Messages
17,567
Biopsychosocial model and severity

Jason et al. [16] defined the SF-36 to measure CFS disability stating that criterion would be met by scoring at or below the 25th percentile on any of the following four SF-36 subscales: Physical Functioning (≤70), Role Physical (≤50), Social Functioning (≤75) or Role Emotional (≤66.7). This approach lends itself to the biopsychosocial model that both Burley et al. [14] and Cox and Findley [4] refer to within their common service, which encompasses the many dimensions of disability and function.

Any connection between using different subscales and the bio psychosocial approach seems very tenuous

This is a model which varies from the purely biomedical model taught to medical students, an issue discussed by Bayliss et al. [33].
A bit concerning the they seem to be recommending the biopsychosocial approach over the biomedical approach

Within the biopsychosocial model, it may also be worth considering the international classification of functioning, disability and health (ICF) [54] when defining disability and function within this group. Schneidert et al. [55] set out to describe the role of the environment in the ICF, describing disability as an expression of the outcomes of the interaction between a health condition and the context (environmental and personal) in which the person finds themselves. This is a classification that allows a comprehensive and detailed description of a person’s experience of disability, including the environmental barriers and facilitators that have an impact on a person’s functioning [55]. The inclusion of the social environment of a severely affected CFS/ME individual in a treatment programme as suggested in the research is evidence of such a consideration [8].
People with ME/CFS can certainly benefit from energy-saving devices and support. However I'm not sure this is what they are saying and instead seem possibly to be blaming the environment causing people to become ill and/or suggesting changing the environment can help treat the people rather than simply not changing the medical status of the patient.
 

Invisible Woman

Senior Member
Messages
1,267
Such restricted exposure to the environment over an extended period of time may be detrimental to the individual severely affected by CFS/ME, in extreme cases leading to hypersensitivity to light and sound.

Right but the hypersensitivity / hyperacusis is one of the more common symptoms for people ranging from mild to very severe. Obviously it affects some worse than others, but the symptom is there regardless of illness severity.

Does illness severity also indicate severity of hyperacusis? Maybe if comparing the mildy affected to the very severely affected. However, is it not possible that the hyperacusis of someone who is severely affected might, at times, be milder than of a moderately affected pwME?
 

Dolphin

Senior Member
Messages
17,567
Treatment approaches

As reported, the intervention study [32] suggested that in the presence of severe functional limitation, CFS/ME was not responsive to behavioural intervention. It may be important to understand which treatment approaches are more effective within each severity category. This would allow treatment approach to be tailored depending upon presentation and might require the MDT approach with specific skill sets as mentioned in several of the papers. A MDT approach [4,12,14,56] from a neurology speciality may provide a more diverse rehabilitation approach (taking into account physical, emotional and environmental factors as recommended by the British Association of CFS/ME [57]) than a psychiatric unit.
Good that they say her psychiatric unit might not be the best place. But it is still mentioning rehabilitation which I find concerning.
 

Dolphin

Senior Member
Messages
17,567
Table 1.
Defining the identified papers: study type, participants, treatment approach, unit speciality, diagnostic criteria, and functional measure.

Number Title Author/year Type Participants Treatment approach Unit speciality Diagnosis criteria Functional measure
If I refer to this paper again, it will most likely be to look up table 1 which lists the studies that have been done on the topic.
 

bombsh3ll

Senior Member
Messages
287
Right but the hypersensitivity / hyperacusis is one of the more common symptoms for people ranging from mild to very severe. Obviously it affects some worse than others, but the symptom is there regardless of illness severity.

I have always been light and noise sensitive long before becoming ill. It hasn't changed noticeably either way. I'd put myself at moderate, plus severe OI.
 

Solstice

Senior Member
Messages
641
Same as you. I can't remember a time that I wasn't hypersensitive to touch, sound, light...

The light and sound insensitivity I don't quite remember. I do remember strongly disliking people touching me. F.e. when you're in the kitchen with 2/3 people at the same time and keep bumping in to eachother and stuff like that, or worst of all hugs.