Severe ME Awareness Day – August 8
I’m struggling right now through another bout of malaise/illness. I’m posting today because it is Severe ME Awareness Day, so this is a short post because I’m sick.
As most of you know, I add to and update my posts later with additional information.
**Although I am not a Severe ME patient, I think many of you are aware of how often I am sick and how much it affects my day to day life. That tells you how awful it is to live with this terrible illness that affects so many of us.I live with (and accept) life with strict limitations and I am grateful my body is carrying me.
But there are times it is so hard for me to raise awareness when I have no energy. I am better than I was several years ago though! I’ve had a few decent months and frankly I think I pushed myself too hard despite trying to take great care of my health this summer. I need rest.
I’m posting for awareness today for my fellow ME patients who are classified as ‘severe’ and ‘very severe’ MECFS patients. Many of them are completely bed bound and haven’t been able to walk, eat, talk, or get out of bed in years. And while the MECFS community has made amazing progress in the past six years since my diagnosis, I am still amazed at how very hard things are for patients like ME.
Thanks to so many of you who continue to check in and for your support and encouragement.
From my blog for Open Medicine Foundation’s Millions Missing campaign in 2020:
“ME is a life-altering disease that comes with a massive array of symptoms. The most common symptoms of ME are:*post-exertional malaise (PEM crash)*un-refreshing sleep*profound fatigue*cognitive impairment*hypersensitivity to noise and light*orthostatic intolerance*pain*nauseaAround 25% of ME patients are affected severely by this disease. This means they are housebound, bed bound, or they might require a wheelchair IF they can mobilize during various stages of this illness.Many ME patients can track the development of this disease back to a viral infection like Mononucleosis. Instead of recovering, they developed ME which is a post viral disease. I had my first bout of mono at age 14. My medical team considers this a link to the beginning of my story with chronic illness.“
This is why we are seeing so much research and talk about long COVID being linked to MECFS.
It is my hope, along with many other MECFS patients, that the research that has occurred because of long COVID patients coming down with MECFS will finally bring more awareness and potential treatment options to the millions of people suffering from MECFS around the world.
There are approximately 20 million people suffering from MECFS around the world that we know of. 25% of these patients are affected by severe MECFS, which means they live in a room and can’t leave their bed, talk, tolerate light or sound, or eat. The view never changes. I can attest to this!
As someone who has been through mild to moderate forms of this awful illness, I can say that it’s horrific. There is no way to describe how awful it is. We live with no hope of treatment. We are disbelieved and discredited. We are still waiting for the world to see us.
It took a global pandemic for us to be seen and to be taken seriously.
In many countries, like Taiwan, ME is barely recognized and there are no treatments available. Many patients (or their caregivers if the patient is unable to do so themselves) must resort to finding treatments online or by connecting with other ME patients to try and reduce the severity of their disease symptoms.
If you’d like to learn more about Severe ME Awareness Day, one of my favorite organizations, Open Medicine Foundation, is doing great work with research into the link between ME and Long COVID while highlighting patient voices around the world.
In the above-mentioned post about a patient with ME in Canada, please consider reading his letter to the former Minister of Health in Canada. Learn about his battle with ME and his comments about the lack of healthcare options for ME patients at: http://bit.ly/3p6tQ5C