Summary
YOLO is all well and good but what happens if the risks people take lead to Myalgic Encephalomyelitis? (M.E) M.E is 'unfixable' and can be as a result of viruses, surgery, or vaccines. What is M.E Foggy Dog doing to change the narrative?
Myalgic Encephalomyelitis can happen to anyone, it does not discriminate in terms of age, sex, or race. It doesn’t care whether you have a ‘positive mental attitude’ or walk on the pessimistic side of life.
You know THOSE people?
THOSE people who say YOLO? (You Only Live Once)
THOSE people who throw caution to the wind and take risks due to the widespread belief that the medical profession can fix everything and get bodies ‘back to normal’ if anything ‘goes wrong’?
What happens when the problem is common but not fixable?
Caught a virus? Take paracetamol and stay hydrated. You’ll be better in a fortnight.
Having surgery? You’ll most likely be better and fully functioning within a few months after participating in physiotherapy.
Getting vaccinated? You might have minor side-effects for 24 hrs but then you’ll be fine.
These 3 things are some of the triggers for Myalgic Encephalomyelitis.
Viruses, surgery, vaccines.
People living with M.E/C.F.S become unwell and start looking to be fixed.
This is when patients face –
– nothing showing up in tests
– disbelief from medics,
– being told there are no treatments or cure
– being told that 5% get better and most will be ill for the rest of their life OR not being told this at all and having their illness downplayed.
– snake oil salesmen promising the world, costing the earth, but M.E-related quality of life and ill health will not improve.
– loss of relationships and friendships due to poor understanding of the disease and stigma.
– loss of employment as employers struggle to understand/support people with Myalgic Encephalomyelitis.
– being denied disability benefits because of the rife deliberate misinformation on the disease.
Individuals living with the disease are worth £1.50 per year to the UK Government. That’s how much funding we were given per patient per year in 2019 (around £450,000). I am currently waiting for responses to Freedom of Information requests asking for information on how much funding M.E was given in years 20/21, 21/22, and 22/23 as this information is not available/impossible to find online.
With that negligible level of funding, M.E will never get a biomarker/diagnostic test, treatment, or cure.
There are now 1.25 million people living with this disease in the UK, an updated global prevalence statistic is near impossible to estimate at the moment due to multiple factors including variable Covid19 rates, and lack of data. However, I believe it is likely that the pre-COVID19 global prevalence of 17-30 million has at least tripled since 2020.
All of the above is why I have reached my limit of putting up with the status quo. If Governments will not take M.E seriously and continually reinforce the brick wall that I have been banging my head against for years, then I will take another route. I will go around the wall.
That’s why I set the Redefining Gravity challenge. Let’s change the narrative –
Redefining Gravity
See redefininggravity.co.uk for all info.
Get in touch if you have the skills, talent, expertise, knowledge, or connections to help with this challenge. Thank you.
Sally
ps. Foggy’s Global Challenge is running at the same time as Redefining Gravity, both campaigns aim to raise as much money as possible in one year. Both JustGiving links and Foggy’s *NEW* Google Maps map can be found on mefoggydog.org