Myalgic Encephalomyelitis/Chronic Fatigue

Syndrome (ME/CFS)

Summer Demeuse, SPT

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 What is
Definition:
ME/CFS? A life altering and complex multi-system disease
that can present as an array of different
symptoms that may change over time and differ
from patient to patient.1

Most common symptoms:

- Post-exertional malaise* 1
- Unrefreshing sleep/sleep disturbances 1
- Profound fatigue 1
- Cognitive impairment 1
- Orthostatic intolerance 1
- Pain (muscle/joint, headaches) 1
Statistics
• Are bed- or house-
bound for long periods
At least during their life2
one in
four

• Have not yet been

diagnosed… why?
• Limited access to health
90% care, lack of education
(Open Medicine Foundation) among health care
providers/no diagnostic
test2

3
(Open Medicine Foundation)
PEM

(Institute of Medicine of the National Academies)

4
Sleep

(Institute of Medicine of the National Academies)

5
Cognitive

(Institute of Medicine of the National Academies)

6
  Perceptions
 IOM recommends new name

 Other diagnoses possible:

• Prolonged recovery from
EBV
• Gradual emergence of
another chronic illness
• MS, colon cancer,
primary sleep disorder

 Comorbidities

(Institute of Medicine of the National Academies) 7

“When I do any activity that goes beyond what I can do – I
literally collapse – my body is in major pain. It hurts to lay
in bed, it hurts to think, I can’t hardly talk – I can’t find the
words. I feel my insides are at war.”

—Patient communication to IOM committee

(Institute of Medicine of the National Academies)

8
“My personal experience of having ME/CFS feels like
permanently having the flu, a hangover, and jet lag while
being continually electrocuted (which means that pain
plays at least as much of a role in my condition as fatigue).”

—Patient communication to IOM committee

(Institute of Medicine of the National Academies)

9
 Insight
Some of the daily struggles of living with ME/CFS
 Areas Being Studied as Possible Causes:

1 2 3 4 5
Infections Immune System Stress Affecting Changes in Possible Genetic
Changes Body Chemistry Energy Link
Production

Reference : The basics you can find anywhere 5 Steps To Successful Storytelling Published on April 5, 2014 Featured in: Marketing & Advertising
11
 1
Infections

About one in ten affected with the

following will develop a set of symptoms
that meet the criteria for ME/CFS4

• EBV4
• Ross River virus4
• Coxiella burnetti 4

12
 2
Immune System Changes

Changes the way the body responds to infection

or stress. Shares characteristics of inflammation
with some autoimmune diseases (e.g. RA), but no
tissue damage.

• Chronic production of cytonkines4

• Low-functioning natural killer (NK cells)4
• Differences in markers of T-cell activation 4

13
 3
Stress Affecting Body Chemistry

Physical or emotional stress alter the way our body

regulates immune responses, digestion, energy
usage, and mood through dysregulation of
hormones (CRH, cortisol, etc.)

ME/CFS pt’s often have lower levels of cortisol than

healthy individuals.

14
 4
Changes in Energy
Production

Studies have found differences in the

way cells get their energy. However,
more research is needed on how these
contribute to the illness.

15
 5
Possible Genetic Link

Twin and family studies reveal

there is environmental influence
on gene expression. Further
research is needed to identify
exact genes or environmental
factors.
16
 Post-COVID-19  “Post-Viral” Syndrome
Syndrome  “Long Haulers”

History?
- This post-viral syndrome Predictions:
manifested following Severe
Acute Respiratory Syndrome - There will be a
Concern: (SARS) infection in 2002. 5 subgroup of
remitted patients
- Virus symptoms: - Patients and healthcare likely to experience
From the CDC and workers went on to develop
mild vs moderate- IDSA long-term adverse
severe ME/CFS-like illness which effects resembling
- Affecting mild as lasted >20 mo.5 ME/CFS
- Patients continue well as moderate-to-
to experience symptomology .5
severe disease >6
symptoms related weeks to months.5
to COVID-19 after - Harvey Moldofsky and John

the acute phase of Patcai at the University of

infection. 5 Toronto revealed 80% of 107
subjects with the virus had
17
 Post-COVID-19  “Post-Viral” Syndrome
Syndrome  “Long Haulers”

Study (France, Most common reported Study (London, Tim

August 24, 2020): symptoms: Spector)
- Surveyed ICU and - Fatigue (55%)7 - Developed a
non-ICU patients’ COVID Symptom
diagnosed with - Dyspnea (42%) 7 Study App to track
COVID-19 - Memory loss (34%) 7 symptoms over
time.
- Assessing - Sleep disorders (30.8%) 7
persistence of - Estimates 1 in 20
symptoms and - Difficulty concentrating of UK citizens
HRQOL after d/c (28%) 7 diagnosed with
COVID-19 are
Prior to infection: reporting
symptoms > 6
- 46.7% active workers 7 weeks. 8
- 69.1% returned to work 7
18
Daria Marie, PT, DPT, ATC
- Tap dancer, distance runner,
Living With ME/CFS
burlesque performer (Diagnosed
with COVID-19 in March)
“Yesterday I got pretty SOB working. So, Nicole Rabanal, PT
for the first time in 14 of being a clinician, I - Diagnosed with ME/CFS in 2014
sat & rested multiple times. I've never done “Today my life is all about pacing and management. I work a 2-hour
this - not even when I had mono or was on shift in the morning, come home and lie down in a quiet room with
crutches. And I limited how much I was O2, ice on my eyes/head for 4 hrs, go back to work for another 2 hr
walking or standing throughout the day. I shift. Then, I return home again and do the same, giving up time
don't like this.”9 with my family and going to bed no later than 8 pm. I give up
weekends with my family and friends because minimal socializing
drains me along with sensitivity to light and sound.” 10
"The knowledge and experience of having been a PT for nearly 25 years has been incredibly helpful to
my personal treatment plan. Listening for and understanding the signs of when I'm pushing beyond my
energy limitations, then implementing appropriate exercise and stretching, is a big part of the
management puzzle. This of course is what PTs do every day with patients, in one form or another—
we listen closely and apply our knowledge to their presentation and what we learn from them."
"I've made significant modifications to my treatment style. "I sit a lot, and lean or move to help manage
my orthostatic intolerance—which does not allow me to stand still, unsupported, for more than 5
minutes. I co-treat with other therapists in my clinic to perform manual techniques that I no longer can
do because of my limited strength.” 10
19
 Physical Therapy Implications?
Main Goals: Symptom relief and improved quality of life!

Pacing/Energy Interventions for

conservation/Activity muscle/joint pain Exercise Program Assistive Devices Referral/Considerati
modification and headaches ons

Plan ahead, Joint mobs, Carefully Individual needs Lymphatic

delegate tasks, STM, MFR, designed to meet Improve drainage
etc. MET, etc. individual needs functioning techniques
Sitting for - Consider Maintain/improv Support groups
ADL/bathing, aquatics, e independence Psychological/Ps
etc. yoga, tai-chi ychiatric
Facilitate
- Kinesiophobia participation counseling
Enhance overall- Orthostatic
wellbeing intolerance 20
References:
1. “What Is ME / CFS?” Open Medicine Foundation, 3 Sept. 2020, www.omf.ngo/what-is-mecfs/.
2. “What Is ME/CFS?” Centers for Disease Control and Prevention, Centers for Disease Control and
Prevention, 12 July 2018, www.cdc.gov/me-cfs/about/index.html.
3. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndome . 2015,
www.nap.edu/resource/19012/MECFScliniciansguide.pdf.
4. “Possible Causes.” Centers for Disease Control and Prevention, Centers for Disease Control and
Prevention, 12 July 2018, www.cdc.gov/me-cfs/about/possible-causes.html.
5. Perrin, Ray, et al. “Into the Looking Glass: Post-Viral Syndrome Post COVID-19.” Medical
Hypotheses, Published by Elsevier Ltd., 27 June 2020,
www.ncbi.nlm.nih.gov/pmc/articles/PMC7320866/.
6. Moldolfsky, H., Patcai, J., “Chronic widespread musculoskeletal pain, fatigue, depression, and
disordered sleep in chronic post-SARS syndrome; a case-controlled study. BMC Neurology, 2011,
doi: 10.1186/1471-2377-11-37
7.Garrigues, Eve, et al. “Post-Discharge Persistent Symptoms and Health-Related Quality of Life after
Hospitalization for COVID-19.” Journal of Infection, 2020, doi:10.1016/j.jinf.2020.08.029.
8. “One in 20 People Likely to Suffer from 'Long COVID', but Who Are They?”  RSS,
covid.joinzoe.com/post/long-covid.
9. Daria Marie. Twitter, Twitter, twitter.com/OnTapPhysio.
10. “The Real Story About Chronic Fatigue Syndrome.” APTA, 1 Sept. 2017, www.apta.org/apta-
magazine/2017/09/01/the-real-story-about-chronic-fatigue-syndrome.
 Thank You! 

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