May Momentum and World MECFS Day on May 12 – MILLIONS MISSING
May is a busy month for awareness and advocacy. Today’s post is dedicated to ME/CFS. I’ve written about this before in an article called Chronic Fatigue Syndrome – I am One of the Millions Missing. I will use ME throughout the rest of this article for brevity and clarity.
ME stands for Myalgic encephalomyelitis. It is also known as Chronic Fatigue Syndrome. CFS doesn’t convey the seriousness of this disease. CFS is also used frequently as a catch-all term for anyone presenting with chronic illness-related fatigue.
Three reasons for focusing on ME today:
- World ME Awareness Day is on May 12. This day is shared with Fibromyalgia Awareness Day. Both diseases are connected. (Fibromyalgia is also linked to Ankylosing Spondylitis, which is my primary diagnosis.)
- I was diagnosed with ME in December 2014. It has been a profoundly disabling process for me. My friends know about my primary diagnosis (AS) quite well. I still get a lot of questions asking about ME and why I include it with my posts.
- COVID19, ME and how they intersect – Experts are suggesting we are likely to see an increase in conditions such as ME as COVID19 patients recover but then develop Post Viral Fatigue Syndrome.
You might be seeing a lot of posts online right now called #MayMomentum. This hashtag is being used by Open Medicine Foundation.
OMF supports medical research to find treatments while identifying diagnostic markers for ME patients. You’re likely seeing a lot of OMF fundraisers online as well right now. The organization and its supporters are pushing for donations during their annual fundraising campaign.
Since 2012, they’ve been able to raise over 24 million for research. This is a drop in the bucket compared to the amount of research funds that are allocated to other diseases.
From Open Medicine Foundation:
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) and related chronic complex diseases (such as post-treatment Lyme disease syndrome, fibromyalgia) are dangerously misunderstood, stigmatized, underfunded and under-researched. Every day over 20 million people around the world are suffering.
Open Medicine Foundation raises the money and accelerates the research required to tackle the global health crisis that is Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
ME is a devastating disease
ME is classified by health organizations as a neurological disease, but it is poorly understood due to lack of funding. Things are changing quickly though!
In 2016 in Canada, ME patients – an estimated 580,000 patients with ME – received less than .11 per day for funding because ME wasn’t recognized officially. Thanks to grassroots efforts along with awareness and fundraising campaigns, ME is being taken seriously in Canada and other places around the world.
In August 2019, for example, the Canadian government announced it’s investing $1.4 million in biomedical research to improve the quality of life of people living with ME.
This is where organizations like Open Medicine Foundation and MEActionNet come into play.
These organizations are dedicated to engaging with the ME community and with clinicians and researchers to ensure new research is being shared.
OMF is focused on chronic complex disease. Experts in immunology, virology, genomics, molecular biology, epidemiology, infectious disease, oncology, pathology, and clinical medicine lend their expertise to help find a cure for over 20 million patients around the world who are suffering from ME.
ME is a life-altering disease that comes with a massive array of symptoms. The most common symptoms of ME are:
- post-exertional malaise
- un-refreshing sleep
- profound fatigue
- cognitive impairment
- hypersensitivity to noise and light
- orthostatic intolerance
Around 25% of ME patients are affected severely by this disease. This means they are housebound, bedbound, 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 from mono, they developed ME. 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.
Things I’ve experienced with my ME diagnosis that are different to AS:
- Chronic pain – Resting causes pain. Moving causes pain. (With AS, moving is supposed to help reduce pain. That’s why we say Motion is Lotion with AS.)
- Poor energy metabolism and total body shutdown with too much activity. This is what is called a CRASH.
- Physical weakness – I started noticing this symptom first. When it happens, my hands are too weak to hold something properly, like picking up a glass of water. My family and friends have often seen me support my arm at my elbow to pass something as simple as a plate.
- Low energy – I have to choose what I do each day. Will I take a shower today or water my plants? I can’t do both.
- Body tremors – My whole body shakes with exhaustion after doing something.
- Isolation due to hypersensitivity to noise and light – It’s hard for me to be around large groups of people because it drains my energy. Some days it’s hard to be around my husband and I just need to be quiet and in the dark.
- Severe chemical intolerance to many things including medications and household items
- Irregular heartbeat
- Low anaerobic threshold – Standing or walking for 20 minutes makes my legs burn. Within hours it feels like my body has been whipped.
- Brain fog – This includes forgetting things in mid-sentence or being unable to focus.
- Blinding migraines
- Flu-like symptoms
- Swollen, tender lymph nodes
- Sleep issues that leave me feeling like I haven’t slept.
- Temperature instability – Some days I can’t regulate my body temperature. This results in pouring sweat or being freezing cold.
No matter where you fall on the spectrum with ME, it WILL disrupt your life.
Most of my readers are likely aware that I’ve been mostly housebound for a few years.
Symptoms also vary from mild to severe. I’m somewhere in the middle of this spectrum. Severe cases are completely bedbound and have next to no quality of life, while other patients have mild to moderate symptoms.
I’m lucky if I get a few hours outside of my home each week. I can’t surpass more than two hours out of my home without causing a post-exertional crash. I spend a lot of time at home engaging in quiet activities that do not cause stress. Stress means a crash, and I do my best to avoid those at all costs.
ME is one of the most common chronic illnesses. Campaigns will be ongoing throughout May as organizations and advocates around the world speak up to raise more awareness about ME. This disease does not discriminate. ME affects all social classes and ethnic groups. It is the most common cause of long-term absence from school, and it can affect more than one family member, which suggests that genetic factors are involved.
This is why we say Millions Missing.
Please help us find a cure. Leave no one behind.