Today, May 12th, is ME awareness day. A day that I almost dread coming around each year, signifying another year of my body being invaded by countless chronic illness, including ME. Positive, non tired and grouchy Amie, however, sees this as a day for all of us to come together, to recognise the millions missing due to this illness, to give voices to those who no longer have them and to campaign for the recognition and research we all deserve.
Let’s start with some basic facts:
ME is NOT tiredness or ‘just’ fatigue. ME causes a total body breakdown. Simply being tired doesn’t mean you have ME and those who do experience so much more than being ‘tired’.
Tired to an ME Warrior is not the same as tired for others. Overwhelming, painstaking exhaustion doesn’t even come close to describing the fatigue and exhaustion these Warriors fight through.
ME has mistakenly been previously labelled as something hypochondriacs get, something completely in your head, however recent research has indicated that we have problems with the biochemical processes that turn food into energy.
This inability to process food into energy leaves many unable to do everyday tasks, walk, care for themselves or even to sit up by themselves.
It’s estimated that 250,000 ME warriors are fighting throughout the UK, with 62,500 of those being patients with severe ME.
All 62,500 who have been silenced by ME, and the rest of the 250,000 warriors need the world to demand the care and voice we all deserve. Everybody has a right to care, to treatment and to be heard.
So, today we protest, not only in the U.K., but all over the world, to demand the biomedical ME research funding that’s needed. To demand medical education that will stop us from being treated as liars and hypochondriacs. And to demand the removal of GET (graded exercise therapy) which has caused so many ME warriors to fade from life even more.
I personally have lost 6 years to this illness, nothing compared to those who have lost 40+ years. This isn’t all I have lost. As an ME warrior I have faced losing family, many friends, the right to an education, my job and the ability to have any sort of ‘normal’ 21 year old life. I fight my own body to be able to get out of bed each day, losing these battles more often than not, to wash myself, to eat and many days to even find the energy to brush my own hair.
We may be warriors, fighting our own bodies, but we need you. Your voice added to ours could be the difference between more silence and suffering, and being given the funding and adequate research that we so desperately need. Share posts on Facebook, Twitter, Instagram, write blogs or make YouTube videos, go out and tell everyone you see about #MillionsMissing and ME and how they could help. Be the extra voice that we have been dreaming of for so many years.
Head to MILLIONSMISSING.ORG to find out more.
To all ME warriors, your voice is being heard, your story is being told and the care you need is coming.
Find me on Twitter @Amie_Addison and Instagram @amie_addison