Seven Slides for Physios
An accessible text-only version of our seven slides for physios.
References and links to more resources can be found here
Slide one: What is Myalgic Encephalomyelitis and why do I need to know?
What is Myalgic Encephalomyelitis (ME) ?
Also known as Chronic Fatigue Syndrome (CFS) or Systemic Exertion Intolerance Disease (SEID)
Chronic, multi-system disease that is serious, complex and profoundly affects the lives of adults and children
Symptoms:
Cognitive impairment
Autonomic dysfunction
Sleep dysfunction
Pain
Neuroendocrine symptoms
Immune dysfunction
Fatigue
I’m a physio – why do I need to know about ME?
Physiotherapists may treat people with ME directly, for co-morbidities, or an unrelated matter:
ME / CFS specialist centres
MSK Outpatients
Neurological physiotherapy
Fatigue services
Community
Paediatrics
Rheumatology
Pain services
In 2020, 54% of UK Universities did NOT cover ME in their physiotherapy undergraduate courses
Hallmark feature Post Exertional Malaise (PEM): symptoms exacerbated by exertion
Physiotherapy practices may trigger PEM
Slide 2: How Serious is ME?
"Mild" : Significantly reduced activity levels. May be able to work and carry out ADLs unaided but “mild” is an insufficient description
Moderate: Approximately 50% reduction in pre-illness activity levels. Significant restrictions on mobility if outside. May need assistance for some ADLs
Severe: Mostly housebound, may spend long periods in bed. May require a wheelchair. Requires help with ADLs
Very Severe: Mostly bedbound, dependent for all ADLs on 24-hour basis
Symptom severity can often fluctuate
25% are classed as Severe or Very Severe
50% are unemployed
75% are housebound most of the time
There is currently no cure
Slide 3: Post Exertional Malaise
Post Exertional Malaise (“PEM”) : The Hallmark Feature of ME
Also known as Post Exertional Symptom Exacerbation (PESE) or Post Exertional Neuroimmune Exhaustion (PENE)
A significant worsening of symptoms triggered by physical, cognitive, sensory or emotional exertion
PEM can be triggered hours or days after the event and last hours, days, weeks or much more
Physiotherapy interventions that may cause PEM
Exercise
Manual therapy
Subjective questioning
Physical assessment
Sensory stimulation: auditory, visual, smell, touch
Researchers use exercise to aggravate symptoms in people with ME so their abnormal physiological responses can be studied, including:
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Deterioration in cardiopulmonary function
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Early intracellular acidosis , increased intramuscular acidosis and abnormal increases in lactic acid
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Abnormally increased levels of oxidative stress with prolonged recovery
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Significant increases in activators of inflammatory immune cells
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Altered gut microbiome and increased bacterial translocation
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Reduced oxygenation of the prefrontal cortex
Slide 4: PEM, Fatigue and Diagnostic Issues
The unique hallmark feature of ME is Post Exertional Malaise (PEM): a significant worsening of symptoms triggered by physical, cognitive, sensory or emotional exertion
Not every diagnostic criteria used in research requires PEM as essential for diagnosis, leading to possible inclusion of other fatigue-producing conditions
“Fatigue” is a symptom that can be found in:
Metabolic / endocrine diseases
Neurological disorders
Cardiac / Pulmonary diseases
Mental Health disorders
Infectious diseases
Vitamin deficiencies
Medication side effects
Cancer
Pregnancy
And more…
Criteria and whether PEM is required for diagnosis
IOM/NAM: Yes
ICC: Yes
Canadian: Yes
CDC (Fukuda): Not essential
Oxford: Not mentioned
Systematic Review (2021) of Physiotherapy Interventions in relation to diagnostic criteria
Of 18 RCTs, only 1 used criteria that required PEM
Any positive intervention effects were diminished when criteria became more specific
Conclusion: There is no evidence for effective physiotherapy interventions for patients with PEM
Slide 5: Physiotherapy Assessment of ME
Adapt assessment to minimise sensory triggers of PEM
Location
Time of day
Environment
Length of interaction
… and adapt yourself
Volume of voice
Avoid strong scents
Avoid bright / patterned clothes
Simple, brief questions
Help to identify PEM triggers
Map daily/weekly routine, looking for activity types:
Physical
Cognitive
Sensory
Emotional
Remember PEM can be delayed, average 1-2 days
What are their priority symptoms?
ME is a multi-system disease with varied symptoms
Establish patient priorities and goals
Build picture of all symptom severity and triggers so treatment plans can be adapted to avoid exacerbation
Outcome measures / Screening Tools
Select a measure to assess two factors:
1) Is the intervention achieving desired effect?
2) Is the intervention causing PEM?
Examples:
Overall ME impact: DePaul Symptom Questionnaire / CFIDS Disability scale
Orthostatic Intolerance: Active Stand / NASA Lean test
Symptom specific: Fatigue Severity Scale, Compass 31 (autonomic symptoms), Numerical Rating Scale (pain), Heart Rate Variability (autonomic function)
PEM: Hard to standardise measurement as PEM is individual, unpredictable and multi-faceted.
DePaul has a PEM subscale. Or consider basic numerical rating scale (0-10 of PEM severity) for regular monitoring
Slide 6: Physiotherapy Management of ME
Aim to assist with symptom management to improve quality of life
Management options
Advice on activity management, aids and adaptations
Pain management
Postural management and maintenance for bed-bound
Guidance on physical activity within energy envelope
If working with a patient for an unrelated matter, treat diagnosis of ME as a precaution for any intervention
Post exertional malaise can be caused by physical, cognitive, sensory and emotional triggers
Treatment plans must take ME into account and be adapted in order to avoid symptom exacerbation
Using Heart Rate Monitors to pace
HR monitors can help monitor physical exertion and alert to thresholds that may trigger PEM
International survey of over 500 people:
72% - better understanding of PEM triggers
32% - improved ability to do ADLs
Transcutaneous Vagus Nerve Stimulation
Electrical stimulation of vagus nerve to influence autonomic nervous system symptoms
International survey of 116 users with ME:
67% would recommend
Beneficial: mildly (21%), moderately (19%), very (16%)
Unhelp / made worse (6%)
Slide 7: Research Opportunities for Physiotherapists
Qualitative work
Interviews / Focus Groups / Open Questionnaires
Explore patient experience of physiotherapy interventions or patient-led management strategies
Quantitative work
Pilot studies / Feasibility studies / RCTs
Physiological measurements in relation to PEM and everyday activities, eg:
Heart rate variability
BP
VO2
Lactic acid levels
Pulmonary function
Cognitive function
Pain
Mixed methods to explore safety and effectiveness of management options:
Activity Management to reduce PEM
HR Monitoring to reduce PEM
Vagus Nerve Stimulation for autonomic function
Massage / manual techniques for pain
Compression garments / calf strengthening for orthostatic intolerance
*Often missed from research: Children and those with Severe / Very Severe ME
Physios for ME are happy to collaborate with clinicians and patient experts – if you have a project idea please get in touch!