I’ve done it! I’ve contributed to the world’s largest genetic study of M.E. Hooray!
Story So Far
Ya know, when I was first diagnosed with M.E six years ago, the future looked bleak as fuck. With zero treatment and a poor prognosis, losing my independence and quality of life was a grim reality to face.
Sadly, until recent years, there hasn’t been any meaningful change on the horizon due to the relentless stigma, misunderstanding, and lack of funding for biomedical research into the cause and potential treatment of M.E. It’s been the stuff of nightmares.
There’s plenty of horror stories out there – especially during Severe M.E Awareness week. Throughout that week, my news feed was filled with face after face of the MANY people with Very Severe M.E who have died of this condition, due to medical negligence – consistently perpetuated by the idea that M.E is ‘all in the head.’
People – decent human beings who should have had their whole lives to look forward to – now cease to exist (or they exist but cease to live), because of the gargantuan egos of a few psychiatrists (and related fields) who, years ago, managed to convince the medical world that M.E is a psychological, not biological, condition. And the worst thing is – they continue to stand by this viewpoint today.
Aaanyhoo, good news – the so-called research those psychiatrists produced has now been widely discredited, and no-one gives a flying fuck what they have to say anymore.
Hooray! Let’s conga!
Although great progress has been made in recent years, with research repeatedly demonstrating the biological nature of M.E – we are yet to see a study on the same scale as the Decode ME Study. This to date, is the largest genetic study of M.E in the WORLD.
I’ve no idea what the results will mean in terms of finding a diagnostic biomarker and treatment for M.E – if anything. But what I do know is … this is a HUGE stepping stone in the right direction. The findings from this study could very well influence the direction and funding for future large-scale studies, each one guiding us closer to the answers our M.E community has been waiting way too many decades for.
… And I for one, along with my 2mls of spit, are so proud to be a part of it!