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?

People with ME have a lower Quality Of Life compared to other chronic illnesses
such as COPD, chronic renal failure and lung cancer

"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:

  • Deterioration in cardiopulmonary function

  • Early intracellular acidosis , increased intramuscular acidosis and abnormal increases in lactic acid

  • Abnormally increased levels of oxidative stress with prolonged recovery

  • Significant increases in activators of inflammatory immune cells

  • Altered gut microbiome and increased bacterial translocation

  • 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!