August 8th Severe ME Awareness Day
What is Severe ME?
Myalgic (muscle pain)
Encephalomylitis (brain & spinal cord inflammation)
is a post viral illness that causes widespread metabolic, cardiac and neuro-immunological dysfunction.
There are 20 million ME patients worldwide and the cardinal diagnostic symptom is post exertional neuroimmune exhaustion (PENE)
PENE causes immunological and metabolic changes affecting energy, cognition and symptoms that occur 24-48 hours after physical or mental exertion. These changes are measurable and not a feature of other fatiguing diseases.
25% of people with ME have severe ME. Severe ME patients are housebound or bed bound.
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August 8th
In Memory Of Sophia Mirza & Those We Have Lost
The blue rose symbolizes deaths from ME. The top causes of death in ME are heart failure, suicide, and cancer. Based on the CFIDS memorial database, patients with ME die an average of 24.4 years earlier from heart failure and 24.2 years earlier from cancer. 20% of patients in the database died of suicide compared with 2% of those with a diagnosis of major depressive disorder.
Severe ME day is August 8th, the birthday of Sophia Mirza, a young woman in the UK who was psychiatrically incarcerated for being bed bound with severe ME. The graded exercise therapy (shown harmful in over 80% of patients) she was forced to perform lead to a rapid deterioration of health and she died shortly after returning from hospital at the age of 32. Her post mortem showed widespread spinal cord inflammation.
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Massive Severity Spectrum
ME already has a broad spectrum of disability but severe ME has its own spectrum as large as mild and moderate combined. From patients unable to move, communicate, eat or drink and suffering unbearable sensory sensitivity and pain all the way through to patients who are "only" housebound and can "even" be driven in a normal car to the hospital or doctors office.
Some things people with severe ME may or may not be able to do include:
Leave the house
Walk a short distance
Stand
Use a normal or reclining electric wheelchair
Sit up
Shower with a chair
Travel in a car
Bathe
Bed bath
Roll over
Eat normal foods (intolerances, allergies, exertion)
Swallow
Talk or communicate
Fill out a form
Use a computer or smartphone
Watch movies
Listen to music or audiobooks
Write or craft
Play a video game
See a friend
Turn on lights
Opening a window
Be around fragrances (chemical sensitivity)
Manage medications
Take pain killers (medication sensitivity)
Brush teeth or hair
Additionally, they may be able to do these things occasionally, with great effort, with assistance, or not at all and may suffer varying symptoms or relapses as a consequence.
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Living Death
Imagine waking up and the air around you has turned to quicksand with every movement digging you deeper into the hole. This is ME.
Now imagine that light and noise have turned to lightning and gunfire forcing you to hide away in dark and quiet. That even thinking too hard about the world around you can further pull you into darkness. This is severe ME.
Now imagine you are chained to your bed and food and scents have become toxic to you. That acid runs through your veins instead of blood and that sitting up feels like getting off a tilt a whirl. This is very severe ME.
Now imagine all of that but you are paralyzed, dependent on tubes and IVs, unable to communicate or move, unable to explain how careless noise and light further burns through your muscles and tightens your chains. This is extremely severe ME.
Severe ME is often called living death because of the severity of disability and suffering it causes. Severe ME patients are as ill as late stage AIDs patients, yet they can survive in this state for years or decades.
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Vulnerability
ME is an extremely poorly recognized illness and disability. The lack of commercially testable biomarkers and the conflation with chronic fatigue, misdiagnosed chronic fatigue syndrome, and mild ME/CFS patients all make receiving disability and funded caregiving for severe ME very difficult.
The severe sensory sensitivity in combination with frequent chemical sensitivities and food intolerances can make living in a nursing home a dangerous or life threatening situation for many patients leaving some people to choose horribly inadequate homecare or lack of care instead.
The lack of safe housing and care options for people with ME leaves patients vulnerable to abuse from facilities, family, and partners who all know the person has little to no options to remove themselves from the situation. Standard shelters and homeless resources are simply unreachable to someone who cannot survive walking a single block. Homelessness for anyone with ME is lifethreatening. For severe ME patients it is a death sentence.
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Medical Neglect
Being unable to leave the house or bed and with the most severe patients at risk of severe relapse even from patient transport to hospital, patients with severe ME are often left with no way to access medical care.
While there are no FDA approved treatments or cures for ME, the potential for palliative care to improve the lives of people with ME is massive.
Treating pain, nausea, sleep dysfunction, orthostatic intolerance, infections, nutritional deficiencies, low blood volume, mast cell activation, gut dysfunction, dental issues, comorbid mental health and autoimmune dysfunction as well as simple checkups and screenings can all improve quality of life and life expectancy.
So to leave these patients with no access to healthcare at all, is simply inhumane. Yet when countries systematically remove support for telehealth and even more importantly doctors home visits this is exactly what they are doing.
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Adrenaline Surges
One of the survival mechanisms present in severe patients and all patients is adrenaline surges. When the body feels it is in a life threatening and/or highly painful situation it can release adrenaline which keeps the patient alert and conscious. Yet for patients with ME, adrenaline surges serve two highly negative roles.
They confuse doctors about the severity of the illness.
Most patients have severe anxiety about doctor interactions after years of dismissal and many may have PTSD from traumatic medical experiences. This leads to a massive adrenaline surge during medical interactions allowing the patient to converse and appear far more functional than they are.
They mask and increase the severity of crashes.
When patients are in an adrenaline surge it decreases pain, increases cognitive functioning, and massively improves energy. But the body cannot sustain adrenaline indefinitely. When the adrenaline wears off the patient often finds themselves in a far worse energy deficit and position of post exertional neuroimmune exhaustion than would have ever been possible without the adrenaline.
It is essential that doctors and caregivers recognize the signs and symptoms of adrenaline surges so that they can avoid worsening the patient's condition and encourage them to rest when running on adrenaline.
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Severe ME Facts
☆Severe ME affects 25% of people with Myalgic Encephalomyelitis, a debilitating post-viral neuro-immunological disease.
☆Severe ME has a massive range of severity from "only" housebound, to patients who are bedbound with severe symptoms constantly and require tube feeding and IV hydration.
☆Severe ME day is August 8th, the birthday of Sophia Mirza, a severe ME patient who died from inappropriate treatment and psychiatric incarceration.
☆Very severe ME patients are as sick as late stage AIDS patients but can live like this for years or decades in a state often referred to as "living death."
☆Adrenaline surges can mask the severity of ME.
☆Severe ME patients suffer medical neglect due to their inability to access telehealth or home visits from doctors.
☆Severe ME patients do not often have good choices for safe care and living arrangements leaving them extremely vulnerable to abuse.
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Severe ME Resources
The Hummingbird Foundation
For ME (hfme.org)
3 part ability scale▪︎Information about adrenaline surges ▪︎Severe ME guidance
The 25% ME Group
Facebook support group for severely affected patients & their caregivers
Workwell Foundation
CPET studies & evidence against Graded Excercise Therapy
Whitney Dafoe & Galen Wardens Blogs
Very severe ME experiences & wisdom ▪︎Gurney guide to patient transport
MEPedia
Wikipedia style site for ME commorbidities, research, symptoms & treatments run by ME Action
ME Action
Advocacy for social change and government research into ME
Health Rising
Latest research into ME & complex chronic illness
Stonebird.co.uk
Books providing guidance on all things severe ME
Bateman Horne Center
Crash survival guide ▪︎Communication cards▪︎Treatment guide for physicians ▪︎Severe chronic illness support group
ME-International
Text, voice & video support groups ▪︎ Door warning poster for severe ME▪︎Advocacy for ICC Diagnostic Criteria research
How To Get On
Sleepy Girls Guide To Disability ▪︎SSDI & SSI help for Americans w/ ME/CFS
The Bedbound Activities Masterlist
By Sarah Stanton
ME Association
Look for your local branch.
Links to all of these resources and more available at meandmore.net/resources
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Today is August 8th Severe ME Day
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Myalgic Encephlomyelitis aka ME or ME / CFS is a neuroimmunological disease with broad impact on the
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•Brain
•Immune System & Gut
•Heart & Circulatory System
•Mitochondria & Energy Production
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All of this causes symptoms including
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▪︎Muscle cramps, spasms & Chronic Pain
▪︎Muscle weakness & Periodic Paralysis
▪︎Migraine & headache
▪︎Severe fatigue, flu like symptoms, sore throat & nausea
▪︎Mast Cell Activation & Allergic Symptoms
▪︎Functional neurological disease or FND
▪︎Irritable bowel syndrome or IBS
and the defining symptom Post Exertional Neuroimmune Exhaustion or PENE (aka Post Exertional Malaise or PEM) which causes an increase in all of the above symptoms 24-48 hours after an exertion. This is often called "crashing." Repeated crashing can permenantly worsen a patients disability.
People with ME are termed the Millions Missing due to how the illness steals us from our lives but does not kill us. Severe and especially very Severe ME and Extremely Severe ME are termed living Death.
ME can happen to anyone and long Covid is often a trigger. Patients with ME, especially severe ME are immunocompromised and infection can cause severe relapse or death.
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Severe ME refers to the bottom 25% of patients with ME who are housebound or bedbound. Beyond the loss of their previous lives, jobs, and often friends & family, these patients face additional challenges including
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☆Difficulty accessing necessary medical care particularly palliative care and supplemental hydration and nutrition. Innability to travel to access medical services.
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☆Homelessness, housing insecurity and financial insecurity as well as innability to pay for necessary caregiving. This can lead to further strugles with activities of daily living.
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☆Severe light, noise, and fragrance sensitivity. Even minor changes to the environment can precipitate a crash.
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☆Forced innapropriate treatment such a improper physical therapy, psychiatric incarceration, and dangerous levels of stimulation.
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☆Abuse from family members or caregivers who do not understand or choose to neglect the disease and patient.
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