M.E. and the Ghosts in the Room

“I choose to live in the present because when you suffer from chronic illness, you don’t have a choice. It’s day by day, one foot in front of the other. When there is a good day, you soak up that moment. Those ‘good selfie’ moments are captured because they’re a gift.” – Yolanda Hadid

There is no cure for the common cold but, when you get one, everyone sympathizes with you. At first blush of the cold you can trundle off to the local grocery store and spend 37 hours looking in the cough and cold aisle, which offers ten-thousand varieties of cold remedies, til you find the exact powder, pill, liquid, liquid gel, gel tab, powder gel tab, gelled powder liquid, patch, balm, salve, spray, bath salt, inhaler, rub or atomizer that suits your particular cold fighting need. The point being, no one looks at a friend with a cold and thinks they’re faking it. The world legitimizes the common cold by the sheer bulk of the products produced to fight said incurable affliction. Last year alone drug companies spent 6.4 billion dollars on advertising their cold remedies. For something that cannot be cured, that, for the most part, is not life threatening, there is a lot of attention and money paid at the altar of the common cold. In fact, according to webMD, an average of 40 billion dollars is spent every year in the ‘war” on the common cold. Bottom line, if you have a cold, there is sympathy, there is money and there is medicine.

In 1934 there was an outbreak of a new disease. It crippled people. It caused severe pain, neurological problems, weight loss, fainting and a myriad of other symptoms. It was, by all doctor’s standards of the time, incurable. In 1956 this disease was finally named and it appeared in medical literature. The disease is Myalgic Encephalomyelitis or ME. ME was recognized as a distinct disorder and was classified as a specific neurological disorder by the World Health Organization (WHO) in 1969. An estimated 15-30 million people worldwide suffer with ME. Research shows that 75% of people afflicted are unable to work and 25% homebound are bedridden. An exact cause for this disease is unknown. A precise diagnosis for this disease does not exist. A specific set of symptoms for diagnosis of this disease does not exist. However, the people who suffer with this disease, who are tethered to a bed, who can no longer work, who are represented by a shadow of the person they once were, they certainly exist.

ME is a devastating multi-system disease that causes dysfunction of neurological, immune, endocrine and energy metabolism systems. The onset of this disease can be either sudden or gradual and the intensity and frequency of milder symptoms can sometimes increase abruptly. A spectrum disease, all people with ME experience substantial loss of physical and cognitive function, but he spectrum of severity is wide and varied. All of this makes ME difficult to pin down when it comes to diagnosis and treatment. ME also knows no age. It can attack early on or suddenly cripple a person who has been active, athletic and healthy their entire life. Symptoms can fluctuate significantly from day-to-day but the unpredictable progress of the disease is measured in years not in months or weeks.

Unlike the cough and cold aisle at the local Kroger, filled with remedies, there is no FDA approved treatment for ME. The CDC and other agencies acknowledgethat treating the disease is complicated due to its unknown cause and specialists often suggest treatments that are highly personalized and change treatment protocols frequently. This is expensive and disheartening for the ME sufferer. The National Institutes of Health (NIH), which is budgeted to research this disease gives a paltry 5-7 million dollars to the disease research. However, based on the prevalence and the disease burden on world health, ME should be funded at 250 million per year.

All to this information is fact. You can google it, you can go to the CDC and spend a day looking at records and files. It’s all there in black and white, on hard drives and CDs. What isn’t there is the devastation this disease causes to families, relationships and individuals around the world. Unlike a cold or the flu, a visit from a  friend with some homemade chicken soup isn’t going to help. Because this disease is so undefined, people who suffer from it are often seen ask faking it, or as it being all in their heads. Because of the unpredictability of the symptoms, plans made are often broken, sufferers are often unable to leave the house for long periods and, sadly, they become forgotten.

##MillionsMissing is a global campaign for ME health equality. They work hard to advocate for funding, understanding and help for those who suffer from ME. They held their first global protest in 2016. At their gatherings, people who know someone who suffers from ME, a friend, loved one, family member, etc. are encouraged to bring a pair of shoes the sufferer once wore. The image is striking and heart breaking. Fields, lawns of federal buildings, foyers of the offices of lawmakers, covered with hundreds of thousands of empty pairs of shoes. It’s even more terrible when you realize that the shoes represent, not people who have died, who have gone on to “a better place”, but the people who are at home, in bed, still with us, but only as a vague simulacrum of who and what they once were.

Funding is needed, of course. The WHO, the CDC, the NIH need to understand the breadth of this disease and give it the proper amount of attention and funding to find a cure or find better treatment, that’s a given. But, what is needed more is understanding and care. Those who suffer see life as a train moving further and further away. Friends who dropped by now send texts or emails. Family members look at their children, husband or wives with suspicion. Life, for the ME suffer, is in stasis, the only change being the severity of the symptoms. The isolation the ME sufferer experiences is soul crushing and it saps their will to fight.

Groups like ##MillionsMissing are doing their very best to keep awareness high. And now, IVYE joins the fight to help those who suffer chronic illness know they are not alone, not forgotten and still play a vital part in the life of this world. As with other groups who work to raise awareness and ease some of the suffering, IVYE has created a line of clothing that caters to the those who constantly spend days in clinics and doctors offices, having their bodies poked prodded and punctured. These people often find themselves cold, oddly exposed and dehumanized. IVYE’s clothing line is created specifically to reduce exposure, stay warm and make it easier for medical professionals to find veins for IV application and injections. To someone who does not live with ME or any other chronic illness, they cannot begin to understand the relief of comfortable clothes that make a visit to the doctor easier and more human. IVYE, along with groups like #MillionsMissing, understand.

Awareness needs to be raised on a global level, more attention and funds need to be funneled toward better understanding and possibly a cure for this disease, but more importantly, we need humanity. We need to be aware of our friends and family members that feel they are slipping away, going unnoticed and vanishing from their own lives. We need to assure those who suffer from ME or any other chronic disease that they are not gone and they are never forgotten.

If you know of a group that is working hard to raise awareness for ME or any other chronic disorder, please share it with us so we can help in the struggle.


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