05/07/2023
May is Myalgic Encephalomyelitis (ME) Awareness Month. Please take a moment out of your day to learn more about the devastating disease millions of patients, including myself, have been battling for decades.
Many of you, particularly those in the U.S., may have heard this disease referred to more commonly (and, some would argue, incorrectly) as chronic fatigue syndrome (CFS). If you've heard this term and thought, jokingly, "Oh, I have that too!" please think again. ME is a very serious neurological disease that also affects the immune, endocrine, cardiovascular and energy metabolism systems.
As with many diseases, cases can vary from mild to severe. However, even those "mildly" affected have at least a 50% reduction in previous levels of activity. On the other end of the spectrum, about 25% of patients are fully housebound or bedridden. Some patients, like me, cannot stand or walk and can barely speak. The sickest patients cannot eat on their own and must be tube-fed.
Indeed, studies show patients with ME are more functionally impaired and have the lowest median quality of life scores of any disease tested, including congestive heart failure, end-stage renal disease, brain stroke and several types of cancer.
The primary symptom of the disease is a severe and prolonged worsening of all symptoms following any type of exertion. For the sickest patient, "exertion" can be something as simple as brushing your teeth or turning in bed.
Other symptoms include severe / crippling exhaustion not alleviated by rest, orthostatic intolerance, muscle pain and weakness, sleep disturbances, cognitive difficulties, short term memory loss and flu-like symptoms.
While the cause is not known, most patients report a sudden infectious onset (such as the flu or mononucleosis).
ME affects both genders and all races and ages, including young children. It has been estimated that approximately 1 million or more Americans have the disease -- more than double the prevalence of multiple sclerosis. Additionally, at least 17 million people suffer from ME world-wide.
Despite this, ME is one of the least funded illnesses in the U.S. As a result, there are no FDA-approved treatments and no known cure.
What you can do to help:
--Spread awareness by participating in advocacy projects online or in person, or by simply sharing this and other related posts on social media.
--Educate people who may have misunderstandings about the disease.
--Donate to organizations dedicated to researching ME and/or raising awareness.
--If you know someone with ME, ask them what you can do to be helpful. Many ME patients rely on the care of others for survival. Since so many are forced to live in isolation, sending a simple reminder that they are not forgotten (without expecting a reply) can make all the difference.
For more information or to make a donation, please visit:
MEAction
www.meaction.net
Open Medicine Foundation
www.omf.ngo
Solve ME/CFS Initiative
solvecfs.org
Invest in ME (UK)
www.investinme.org
ME Advocacy
www.meadvocacy.org
ME Association (UK)
www.meassociation.org.uk
Millions Missing
millionsmissing.meaction.net
Additional Resources:
Institute of Medicine (IOM) Report on ME/CFS
http://www.nationalacademies.org/.../Rep.../2015/ME-CFS.aspx
MEpedia
https://me-pedia.o
