Myalgic Encephalomyelitis (ME) Awareness Day 2023
What You Need To Know
—-
Myalgic Encephalomyelitis (ME) Is A Severe Neuroimmunological 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).
—-
There Are No FDA Approved Treatments for ME.
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 intollerance can all help patients immensely despite being non-curative.
—-
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)
—-
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.
—-
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://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/
—-
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.
—-
The Defining Symptom of ME Is PEM. It Is Essential To #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 trom (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 PENE.
When patients exert and trigger PEE repeatedly they will decline. With no treatments and research in its infancy, it is essential that patients preserve the health they have.
—-
#GoBlueForACure
Despite having an economic burden of 36-51 billion dollars per year in the US alone, the NIH provides ME with 14x less funding than necessary to be funded equally to its disease burden. (Open Medicine Foundation 2021, Health Rising 2021)
Research into MECFS is still in its infancy. Furthering understanding into the cause and mechanisms of the disease as well as separating patients into more specific subgroups to better target treatment are all important first steps. Genetic studies and biomarkers may be helpful in making diagnosis more accessible and increasing physician acceptance.
However, it is also essential that we fund immediate studies into drugs like LDN, LDA, Saline, IVIG, Ampligen, BC007, and other treatments that have shown symptom improvement in case studies. ME patients must not be left behind in the race to cure long covid.
—-
Why #GoBlueForME ?
MECFS is a severe post-viral neuroimmune disease with no FDA-approved treatments and no cure. Under 6% of pwME recover. (GoBlueForMECFS, 2023)
Severe ME is often described as living death and despite this grave level of illness housebound and bedbound patients still lack the homecare support and palliative care necessary to stop preventable suffering.
Outdated practices such as GET and CBT lead to many patients becoming severe and despite being formally withdrawn must be ended completely. Patients with covid need to be advised to #StopRestPace to minimize the spread of this horrible disease.
Research is extremely underfunded and necessary to improve long-term outcomes for patients with ME.
—
Myalgic Encephalomyelitis or ME is a severely debilitating neuroimmunological disease that causes neurological, metabolic, cardiac, and immunological dysfunction as well as extreme fatigue, and Post Exertional Neuroimmune Exhaustion or PENE also known as post exertional malaise PEM.
⠀
17-25 million people suffered from ME pre-pandemic and 80-90% are undiagnosed. 70% are unable to work and 25% are housebound or bedbound. Even "mild" ME causes a 50% reduction in functional capacity.
⠀
The name "chronic fatigue syndrome" is a gross misrepresentation of the illness. While chronic fatigue is one symptom of MECFS the name is a terrible description of a neuroimmunological disease defined primarily by the severe migraine, muscle pain and weakness, sensory sensitivities, orthostatic intollerance, and neuroinflammation caused by post exertional neuroimmune exhaustion.
⠀
The name myalgic (muscle pain) encephalomyelitis (brain & nerve inflammation) is a clear description of the primary symptoms of this illness.
⠀
Severe ME affects millions and is living death and imprisonment. While all ME patients have extremely low quality of life, severe ME patients are housebound and often bedbound, reliant on caregivers for basic survival. very Severe ME patients are often tube-fed and dependent on IV fluids, forced to stay in dark and quiet rooms at all times and suffer severe symptoms from the smallest movement or activity.
⠀
There are no FDA treatments for ME and the only recommendation is pacing. Pacing means living within your energy envelope to avoid crashing. It is not a treatment it is simply waiting for treatment. Under 6% of pwME recover.
⠀
Doctors must diagnose ME, take it seriously, and treat comorbidities like #Fibromyalgia #POTS #MCAS#Dysautonomia and #Migraine to improve quality of life.
⠀
With millions missing from this illness and millions more developing it each day as a result of long covid it is time to Go Blue For A Cure and research ME now.
⠀
Join me on May 12th to Go Blue For MECFS and raise awareness of this debilitating disease.
⠀
