Summary
Two new campaigns have been launched by ME Foggy Dog. Redefining Gravity is a challenge to hold a concert to raise funds for MEcfs biomedical research.
Hello!
By now, you should all know that ME Foggy Dog has launched a concert challenge project called ‘Redefining Gravity’, it launched on Monday 17th July 2023 during this event to mark the launch of Foggy’s Global Challenge – yes – Foggy is back to global adventuring!! He’s currently on his way to Munich – it’s his first time outside of the UK since March 2020!
Please note: Both Foggy’s Global Challenge AND ‘Redefining Gravity‘ are fundraising challenges and both have year-long JustGiving pages. Both are raising funds for biomedical research for Cure ME / MEcfs biobank. Please donate if you are able to.
The challenge –
To hold a fundraising concert for at least 1500 people somewhere in the UK in the week of
17th July 2024 to mark ME Foggy Dog’s 10th anniversary of M.E campaigning and fundraising.
The ‘challenge’ is to do this relying solely on the goodwill and voluntary contributions of materials, skills, time, and effort of individuals and businesses.
Please take a look at www.redefininggravity.co.uk to see what the campaign is all about! There are also Twitter (X?) and Instagram accounts if you want to keep up to date with the latest info – sign up via the website.
I am using the universal language of music to reach as many people as possible with this fundraiser.
I’ve just written to Coldplay’s PR team and asked them to pass this email on to Chris Martin / Coldplay.
But just in case that doesn’t happen, I’m posting it here as an ‘open letter’.
Hi,
I know you contributed to a fundraising concert in 2022 for Hal Walker and I am now cheekily, but sincerely, asking for your help to improve the lives of millions of M.E/C.F.S patients in the UK and internationally.
I’m a social entrepreneur who works for the benefit of the global Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patient community. I am currently working on a challenge to host a fundraising concert (July 2024 – UK) to raise as much money as possible for M.E/C.F.S biomedical research. My social enterprises are ME Foggy Dog (mefoggydog.org) and Stripy Lightbulb CIC (stripylightbulb.com), I have had M.E/C.F.S myself since 2006.
Launch event – Redefining Gravity launched in last 20 minutes of event. https://youtu.be/x0jCEWau5t0
Why?
There are now an estimated 1.25 million people living with M.E/C.F.S and post-covid M.E/C.F.S in the UK – it is impossible to estimate global prevalence but it is likely that the pre-covid19 prevalence of 17-30 million has tripled over the past 3 years and it will continue to rise.
M.E/C.F.S is now one of the biggest health crises the world faces in 2023.
There is no biomarker for M.E/C.F.S (no tests to diagnose it)
Zero treatments
Zero cures
The quality of life for severe/very severe M.E/C.F.S patients (25% of all cases) is worse than that of those with late stage HIV AIDS and some cancers at end of life. M.E/C.F.S is a very serious, severely debilitating, multi-system affecting, disease.
Governments have yet to increase research funding into the life-altering disease and so we are having to raise our own funds if we are ever to have any hope of getting better. Pre-covid, in the UK, M.E/C.F.S was given no more than £1.50 per patient per year by the UK Government when comparable diseases (M.S /Parkinsons) were given £40 per patient per year. This is inequitable funding. This situation is replicated internationally.
If we were given equitable funding by the UK Government we would have an annual research funding allocation of £50 million. As yet, we have not received more than £420,000 in one year (no data available 2021-23).
We, the M.E/C.F.S patient community, cannot get better without research funding.
The challenge is to host a concert for AT LEAST 1500 people somewhere in the UK in the week of 16th July 2024 by relying solely on the goodwill and voluntary contributions of individuals and businesses.
Could you be our Bob Geldof? (Live Aid) Could you help to bring about this desperately needed concert and help to raise research funding for this neglected and heavily stigmatised patient group?
Please check out www.redefininggravity.co.uk for more info.
I’ve also linked ‘A Politician’s Guide’ – https://www.stripylightbulb.com/mpdoyourjob4me/ this will give you an idea of how bad M.E/C.F.S can be. This level of severity – severe/very severe- now impacts around 300,000 people in the UK.
I look forward to hearing from you,
Best wishes,
Sally Callow
It’s going to be an AWESOME whirlwind of a year isn’t it?!!
Love Sally
and Foggy (OBVIOUSLY)