ME Awareness Day 2024 : What You Need To Know #TeachMETreatME #MillionsMissing
Myalgic Encephalomyelitis (ME) Is A Severe Neuraimmunalagical Disease
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 (PEM) or post-exertional neuroimmune exhaustion (PENE).
Diagnosis is by symptoms and the International Consensus Criteria requires:
1.) Post-exertional neuroimmune exhaustion
- 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
There are an estimated 17-24 million people affected worldwide and 80-90% are undiagnosed (GoBlueForMECFS, 2023).
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ME is Severely Disabling
Even Mild ME results in a 50% reduction in functionality. (ICC Diagnostic Criteria, 2011) 25% of people with ME are housebound or bedbound and 70% are too sick to work. (25% ME Group 2021, Open Medicine Foundation 2021)
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There Are No FDA Approved Treatments for ME
MECFS Recovery Groups
85% Relapsing-Remitting
15% Declining
4% Improving
Despite these recovery odds, quality of life improvements are possible. It is essential that physicians not be afraid to prescribe symptom management and treat comorbidities provided that treatment does not cause post-exertional malaise. Medications for pain, nausea, and POTS or orthostatic intolerance can all help patients immensely despite being non-curative.
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The Defining symptom of ME Is PEM. It Is Essential Ta #StopRestPace
PEM also known as Post Exertional Neuroimmune Exhaustion (PENE) is an exacerbation of symptoms 24-48 hours after physical or cognitive exertion.
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.
The most common warning of ME patients is to pace before it is too late. Pacing means living within your energy envelope, which for people with ME is the amount of energy you can spend in a day without triggering PEN.
When patients exert and trigger PENE repeatedly they will decline. With no treatments and research in its infancy, it is essential that patients preserve the health they have.
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Severe ME Patients Are Invisible and Begging #Don'tLetMEDie
Severe ME patients describe the experience as "living death." These patients are bedbound, for decades at a time, so light and noise sensitive that even the light leakage of a curtain or the noise of someone whispering can be painful. They often cannot stand even the presence of others and may require tube feeding and IV hydration to stay alive.
Patients who are housebound or bedbound often struggle to access any sort of medical care. Visits from home doctors are rare and often only available to the wealthy if at all.
Severe patients may be too light and noise sensitive for hospital environments. Leading them to go years without any medical care, or to continually deteriorate due to the strain of hospital visits. Patients also go without vital symptom management and palliative care.
Patients who do report to hospital due to no other choice from severe dehydration, malnutrition, low oxygen, or infection are often dismissed as psychiatric, placed in inappropriate sensory environments, or discharged in worse state than they entered to pass away at home.
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ME Is not Deconditioning Or Depression
There are numerous biological malfunctions found in the bodies of ME patients that prove the illness is not caused by deconditioning or depression. These include metabolic and cardiac abnormalities seen on 2-day cardiopulmonary exercise tests and tilt-table testing in MECFS (1, 2). Evidence of neuroinflammation (3) and abnormal immune
response to exercise (4).
While patients with ME may become depressed or deconditioned due to their illness this does not mean that their illness is due to depression or deconditioning. Trying to cure patients by treating these secondary symptoms can be deeply harmful.
The guidelines from Mayo Clinic (2020) and NICE 2021) as well as the CDC webpage all advise that previous treatments such as GET and curative CBT should not be prescribed. This is following evidence from a 2019 UK survey of over 2,000 patients showing that 81% of patients who engaged in GET & CBT had new or worsened symptoms. GET & CBT doubled the percentage of severe patients.
Sources:
(1) https://doi.org/10.2522/ptj.20110368
(2)https://ww.ncbidiora/nov/pmc/articles/PMC8097965/
3)https: /doi.org/10.2967/jnumed.113.131045
(4)https://pubmed.ncbi.nIm.nih.gov/24974723/
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The Name "Chronic Fatigue Syndrome" Is A Joke & Patients
Aren't Laughing
Calling Myalgic Encephalomyelitis "Chronic Fatigue Syndrome" is like calling dementia chronic forgetfulness syndrome.
The name chronic fatigue syndrome has led to massive confusion between chronic fatigue a symptom of hundreds of diseases and ME a neuroimmunological disease that causes severe symptom exacerbation in response to exertion.
Post-exertional neuroimmune exhaustion, malaise, and symptom exacerbation is the defining factor of ME.
These post-exertional symptoms reflect widespread muscle pain (myalgia) and brain and nerve inflammation (encephalomyelitis). Something the name myalgic encephalomyelitis clearly communicates. Something the name "chronic fatigue syndrome" obscures and gaslights.
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ME Is Drastically Underfunded
Despite having an economic burden of
36-51 billion dollars per year in the US alone, ME/CFS is drastically underfunded.
A 2020 study found that for ME/CFS to be funded comparably to its 2017 disease burden it would need a 14x increase from $15 Million to $203 Million a gap of $188 Million. As of 2022 the most recently reported year) the NIH budget for ME dropped to $13 Million despite a massively growing patient population.
Fair Funding $203 Million
Actual Funding $13 Million
14x Less
https://report.nih.gov/funding/categorical-spending/
https://pubmed.ncbi.nlm.nih.gov/32568148/
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#TeachMETreatME
ME/CFS is a severe post-viral neuroimmune disease with no FDA-approved treatments and no cure.
Patients are left desperately waiting on essential medical care including:
-Diagnosis
- Advice on pacing
-Management of comorbidities
-Access to mobility aids & social support
Medical professionals can learn more about ME/ CFS at the following sources:
Mayo Clinic Proceedings 2023
#NICE Guidelines 2021
#US Clinician Coalition Treatment
Recommendations - Bateman Horne
*Workwell Foundation
*Open Medicine Foundation
These resources an more are linked at Linktr.ee/teachmetreatme2024
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Myalgic Encephalomyelitis aka ME (ICD-10-G93.3) is a neuroimmunological disease that causes extreme chronic fatigue as well as metabolic, cardiac, gastrointestinal, immunological and neurological symptoms made worse by exertion in a process known as post-exertional malaise (PEM) or post-exertional neuroimmune exhaustion (PENE).
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There are over 36 documented symptoms of PEM and while dehbilitating, fatigue is only a small piece of the picture. The name Chronic Fatigue Syndrome (CFS) minimized the reality of the disease and "is like saying someone with dementia has chronic forgetfulness syndrome."
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ME has lower quality of life than chronic depression, COPH, schizophrenia, renal failure, rheumatoid arthritis, multiple sclerosis, lung cancer, stroke, heart failure and 20 total studied diseases. 70% of patients cannot work and 25% are housebound or bedbound with severe ME. Only 5% recover.
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90% of patients are undiagnosed and only ⅓ of med schools teach about ME/CFS. We demand that doctors will learn to teach ME treat ME and give millions missing the care we deserve.
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I am a Global Voice For ME for the 55 million people and 1.3% of Americans who suffer this devastating illness. It has destroyed my life and left me bedbound, dependent on 24/7 caregiving. It affects my family, finances, food choices, access to healthcare and every waking minute of my life.
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Long Covid has brought attention to post viral illness but it has also multiplied the problem with millions more long hauler patients. 6.8% of American currently report long covid and 17% report having had it in past or present.
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On May 12th #MEAwarenessDay we Go Blue For MECFS to bring attention to this living death, please Ally With ME and share this post to raise awareness of this devastating illness.
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While there is no FDA approved treatment or cure for ME, doctors following the NICE Guidelines or Mayo Clinic Proceedings can greatly improve their patients quality of life. Resources for doctors to provide evidence-based care to ME patients are available at linktr.ee/teachmetreatme2024.
