What is and isn't MECFS?Explaining the Neuroimmunological Disease Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
MECFS is: Myalgic Encephalomyelitis
ME (ICD-10-G93.3) is a neuroimmunological disease that causes extreme fatigue as well as metabolic, cardiac, gastrointestinal, immunological and neurological symptoms made worse by exertion in a process known as post-exertional malaise or post-exertional neuroimmune exhaustion.
Diagnosis is by symptoms and the International Consensus Criteria requires:
1.) Post-exertional malaise
2.) Extreme fatigue lasting over 6 months in adults and 3 months in children
3.) Symptoms in each of 3 categories
•Neurological / Pain
•Cadrdiac / Metabolic
•Gastrointestinal / Immunological
If symptoms are only present in 2/3 categories a diagnosis of ayptical ME can still be made. ME is not a diagnosis of exclusion and can be diagnosed alongside other conditions.
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MECFS is: misnamed Chronic Fatigue Syndrome
The name chronic fatigue syndrome or CFS is sometimes used to refer to ME.
This is confusing because chronic fatigue is a symptom of many diseases and the distinguishing feature of ME is not fatigue but PEM, the cascade of metabolic and neuroimmunological consequences of exertion.
For every 20 people with chronic fatigue only 1 has ME and treatments for chronic fatigue will not fix ME.
The name CFS is also extremely dismissive of the severe disability caused by ME.
"It is the equivalent of saying someone with dementia has a chronic forgetfulness syndrome."
-Dr. Charles Shepherd
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MECFS is: defined by Post Exertional Malaise
PEM also known as Post Exertional Neuroimmune Exhaustion (PENE) is an exacerbation of symptoms 24-48 hours after physical or cognitive exertion.
Exertion can be anything from a run in newly diagnosed or very mild patients to rolling over or sitting up in very severe patients. Cognitive exertion can include tasks like reading, math and administrative work.
Symptoms made worse or triggered by PEM include (with prevalence):
-Fatigue 99%
-Cognitive dysfunction 97%
-Muscle pain 88%
-Muscle weakness 87%
-Insomnia 87%
-Temperature dysregulation 87%
-Flu-like symptoms 87%
-Wired but tired 82%
-Headaches 78%
-Increase heart rate / heart palpitations 77%
-Ataxia 77%
-Nausea 62%
-Trouble breathing 58%
-Migraine 46%
-Paralysis 29%
Symptom prevalence from (Lenord A Jason et all, 2019) with less than half of the 39 studied symptoms listed.
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MECFS is: a spectrum disability
Mild ME is a severe illness. Severe ME is a life-threatening illness.
MECFS is a fluctuating disability, patients may move between stages of illness, especially during PEM. Cognitive impairment, physical impairment, and impairment from symptoms all vary independently between patients.
@m.e_and_more unofficial severity scale
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MECFS is not: caused by deconditioning
Patients with MECFS may experience deconditioning as a result of their illness.
However, deconditioning does not explain metabolic and cardiac abnormalities seen on 2-day cardiopulmonary exercise tests and tilt-table testing in MECFS (1, 2). Nor does it explain evidence of neuroinflammation (3) or the abnormal immune response to exercise in these patients (4) .
Therefore, treatments for MECFS that simply presume patients are deconditioned such as graded exercise therapy (GET) will not work.
Trying to cure a patient with MECFS through reconditioning is like trying to cure a broken leg by pretending the leg is healed and trying to walk on it. You have not addressed the underlying dysfunction causing post-exertional malaise. Therefore, you will only trigger more PEM potentially causing permanent damage.
GET is not recommended as a therapy or cure for MECFS by NICE, Mayo Clinic, or the CDC. Instead, the opposite is recommended: pacing or learning to live within your energy limits and listen to your body so that you do not trigger post-exertional malaise.
Sources:
(1)https://doi.org/10.2522/ptj.20110368
(2)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8097965/
(3)https://doi.org/10.2967/jnumed.113.131045
(4)https://pubmed.ncbi.nlm.nih.gov/24974723/
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MECFS is not: depression or burnout
While MECFS may cause someone to burnout or get depressed it is not a mental health problem.
Someone with MECFS may appear similar to someone with depression on the outside. They may stop engaging in hobbies, socially isolate, and spend most of their time in bed. But the cause of this behavior is completely different.
If you ask a person with depression what it is they wish they could they will have few answers. They lack motivation. In contrast, someone with MECFS will have a million plans and activities they are dying to get back to if their bodies would only allow them to.
Because MECFS is not caused by distorted thinking or a lack of desire or fear of engaging with activity, cognitive behavioral therapy (CBT) cannot cure it. Therapy can only help patients to mentally cope with their disability and chronic illness.
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MECFS is not: fibromyalgia
While MECFS and fibromyalgia share many symptoms they are distinct illnesses and neither is a diagnosis of exclusion. This is important because fibromyalgia responds positively to most exercise therapy whereas MECFS patients must avoid most or all exercise to prevent post-exertional malaise.
Patients may have both fibromyalgia and MECFS in which case care must be exercised to balance treatment for both conditions.
The following ven diagram shows the overlap and differences between MECFS and Fibromyalgia
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MECFS is not: curable
There are no FDA-approved treatments for MECFS. Only 5% of patients recover.
The reason many people online claim to have recovered from MECFS is multifold:
1.) 5% of 20+ million people is still over a million people.
2.) Recovery from post-viral fatigue syndrome a condition that is essentially equivalent to ME but occurs within 6 months of viral illness is common. Recovery from ME is also likely much more common within the first year.
3.) Recovery from chronic fatigue, fibromyalgia, burnout and depression is much more common than recovery from ME and these conditions are often misidentified as MECFS.
The only "treatment" for MECFS is pacing. Pacing means rationing your life. It is not treatment, it is an adaptation for survival.
While there is nothing we can do to cure MECFS, it is still essential that patients follow pacing guidelines to avoid deterioration and maximize their chance of remission.
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MECFS is: severely disabling
The above chart shows the functional disability caused by MECFS compared with other well-known illnesses using the WHO's SF-36 questionnaire. This questionnaire is insufficient to measure the extreme physical disability caused by MECFS with 89% of patients hitting the maximum score on role limitations due to physical health (Murdock et all, 2018).
MECFS is not just being "a bit tired." It is not just life-changing bone-aching fatigue. At its most severe it leaves patients tube-fed and paralyzed facing untold years of extreme pain sensory deprivation and solitary confinement.
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MECFS is Myalgic Encephalomyelitis a severe and debilitating neuroimmunological disease that causes post exertional malaise or PEM aka Post Exertional Neuroimmune Exhaustion or PENE and extreme chronic fatigue, as well as dysautonomia, cognitive dysfunction (brainFog), metabolic, cardiac, and immunological dysfunction.
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It is also an extremely misunderstood disease.
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ME / CFS is not:
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Fibromyalgia
Depression
Chronic Fatigue
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Although these may co-occur
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It is not caused by:
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Distorted thinking
Or
Deconditioning
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And the name "Chronic Fatigue Syndrome" is a terrible misrepresentation of a disease that causes
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-Neuroinflammation
-Extreme Muscle Weakness
-Metabolic Dysfunction & Poor ATP Production
-Low Blood Volume
-Immunologic Dysfunction In Relation To Excercise
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And more.
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ME is a disease defined not by inability but by consequences.
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With over 50 symptoms, post-exertional malaise is debilitating and can cause paralysis and leave patients bedbound.
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The exertion necessary to trigger PEM in severe ME and very Severe ME can be as little as a 5 min conversation or sitting up in bed.
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ME is so much more than being tired. At its worst, it leaves patients bedbound, intolerant of light, noise, scent, foods & medications, in extreme pain, dependent on 24/7 care, feeding tubes, and IV fluids. Severe ME is living death.
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Even mild ME is a permanent life-altering disease that forces a 50% reduction in functioning and completely destroys capacity for aerobic exercise. Imagine being forced to give up half of every single activity in your life. That's the minimum impact of ME.
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Long Covid is not ME. But it is causing extensive post Viral Illness and as many as half of the 118 million long haulers could end up with MECFS.
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This illness is devastating and it is massive. If we do not solve MECFS and cure MECFS we are creating a massive humanitarian and sociological crisis. This is an emergency. It is long past time for everyone to know what MECFS is and isn't.
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