Being grateful for ME/CFS awareness raising organisations:
As someone who’s lived with ME/CFS for 3.5 yrs+ and desperately wants to get back to full health and live a normal life again, I’m so thankful there are groups raising awareness for ME/CFS.
#milllionsmissing (by ME Action) held a powerful global virtual protest today. Sufferers who are too ill to protest in person, sent a pair of their shoes to global locations including London, Washington and Melbourne.
If I’d have known, I would’ve sent a pair of my shoes too.
The empty shoes represent the millions of ME/CFS sufferers missing from their careers, social lives and families due to the debilitating symptoms of the condition.
The message had such a powerful effect on me it made me cry.
I hadn’t really thought of my condition in this way before.
But heartbreakingly, it’s true.
I am missing from my career, I am missing from my social life, I am missing from family get-togethers, I am missing from so many aspects of my life that bring me joy, like travelling, hiking, going to yoga classes, and so much more.
I try not to dwell on it, as it only brings me down and once I start on this downward spiral it’s incredibly hard to pull myself back up.
For my own mental wellbeing, I wholeheartedly believe that I need to keep focusing on the positives and finding the happy in the everyday little things – heck, it’s why I started this blog!
It’s what gets me through and it’s what gives me hope.
The #milllionsmissing campaign also represents how millions of doctors are missing out on proper training to diagnose and help patients manage this illness. And again in my personal experience, this is painfully and shockingly true.
I was led to a petition to Increase Funding For ME/CFS So We Can Find a Cure. Created by Mary Gelpi. I can safely say that she speaks for those who live with this life-upside-down-turning condition.
I’ll hand over to the lovely Mary to explain:
“I am only 31, and yet, simple tasks like taking a bath completely exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic disease that causes disabling symptoms like chronic pain, cognitive issues, and specifically severe weakness and crippling fatigue. Think of being hungover with the flu and running a marathon. Often that’s what walking feels like. Many days I am too weak to do anything but walk to the bathroom and back to my bed. Before I became sick, I was able to travel in college, fall in love, enjoy SEC football and graduate. Now, just a trip to the grocery store can land me in bed for days. I’ve lost my independence and take 25 pills a day just to manage the pain and symptoms of the illness. I have lost my life as I knew it.
Those of us in the ME/CFS community are used to health agencies not taking us seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the result of a lack of funding for research. In the 2016 federal budget, the NIH allocated $6 million toward researching ME/CFS. More than double that amount was spent on male-pattern baldness. We can do better. Please stand with me and the millions suffering with this life-sucking disease in demanding that the NIH drastically increase the allocated funding for ME/CFS research. The burden of this disease is huge, on families and the economy. It costs our country billions every year in lost productivity because more than half of us are forced to leave our jobs, too sick to work.
For now, so many sick people have no where to turn. There are only a handful of specialists in the country who truly understand and know how to manage the disease, but most don’t have the money to travel so far just to see a doctor. Many patients are home-bound or house-bound. Some are confined to dark rooms, unable to tolerate sound, talking, or bright lights. We aren’t “living”, we are just hanging on. I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure. With your signature, we can hold the NIH and congress accountable for taking our illness seriously and honoring our request to increase the NIH research budget to $100 million for ME/CFS funding. #WeCanDoBetter Let’s do it now.”
While Mary speaks from the US, the same is true for the UK and other countries around the world. And increasing the funding for ME/CFS in any country will have a global impact.
Please help us by taking a moment to sign this petition. Please click here. Thank you so much.
And check out Mary’s fantastic blog here.