12/05/2024
Today is M.E. Awareness day, Myalgic Encephalomyelitis, this illness used to be known as Chronic Fatigue Syndrome and at one stage yuppy flu, this is my story as short as I can make it, I became ill in childhood, somewhere around the age of 9 after a sudden impact trauma, it started with me always aching somewhere and always tired, I missed a lot of school, I was labelled a hypochondriac by doctors, yet had everything removed that they could remove to try to shut me up, I’m now fifty, aged 21 I was diagnosed with fibromyalgia and aged 23 I was diagnosed with chronic fatigue syndrome, there was no help except painkillers, which are only a temporary fix, in my mid thirties I was then told by doctors that it was “not a real illness” and was all psychosomatic, so I tried to ignore it for years but never had a normal day to day life as I was constantly exhausted and in pain, I then quit gluten dairy and sugar and this helped my symptoms quite a bit until I had another sudden impact trauma, and started to go downhill again about 6 years ago, over the past 6 years I have had many mris and ct scans, I then got sepsis last May and have gone downhill very quickly since, it took till 3 weeks ago for a specialist to finally give me an official diagnoses of M.E., my issue is this, as I’ve said, I took sick in childhood, hundreds of children around the world have now been diagnosed with M.E., many of the kids being taken from their parents and placed in social care situations as the parents are being labelled munchausen and faking their child’s illness!! As well as thousands upon thousands of adults, I would hate for anyone suffering this illness be cast to the side and treated how I and most others have been treated as patients, long Covid has jumped on board now too as the symptoms are very similar, I ask you to take your time to hear people out on this, severe M.E. Is known to be a worse existence than dying cancer patients and I have many friends with severe M.E. Some who have unalived themselves due to severe pain and trying to exist, some who have passed from the illness in late fifties, and some in their eighties who have it mildly but have struggled in pain and exhaustion all their lives, I have decided to become an advocate for patients and hold as many fund raisers as I possibly can so we can finance researching a cure, so I ask you all, please, if you see or hear of anyone with this illness have a care to tell them your aware, it’s surprising how much it helps a patient when they know people are in the know, and if you see me fundraising, please help
