The List

1. Other than on the socials of advocates and people living with M.E, have you seen ANYWHERE that 1.25 million+ people in the UK now meet the diagnostic criteria for Myalgic Encephalomyelitis? It has yet to be stated in MSM.

2. M.E is hardly ever mentioned in articles about Long Covid (est 1/50 articles and then mentioned as ‘similar’ or ‘overlaps’). It has STILL not been made public knowledge that half of long Covid cases meet M.E/CFS diagnostic criteria. Covid19 can lead to M.E or M.E-like chronic illness – again, no mention in MSM.

3.The UK Govt (and most/all Govts worldwide) have not acknowledged Covid causes M.E. (cases meet M.E criteria)

4. This lack of acknowledgement means we have no hope of increased research funding for M.E. M.E has always been GROSSLY underfunded by Govts.

5. Prior to Covid, M.E research received around 50p-£1.50 per patient per year in the UK. Comparable diseases such as M.S and Parkinson’s got around £40-£60 per patient per year. Why the difference?

6. 5% of people living with the disease have a very poor quality of life. Research shows it is as poor as in people with late stage cancer or late stage renal failure – this can go on for years/decades. There is no appropriate care/support for these very ill people.

7. Those on the ‘milder’ end of the spectrum have lost 50%+ of pre-M.E functionality. Yet this is rarely acknowledged by DWP, medics, and others who make ill-informed decisions about the person’s life.

8. Redefining Gravity will raise a MINIMUM of £1million for M.E biomedical research for Cure ME/MECFS Biobank and tackle the stigma by raising awareness of the disease on a large scale.

9. It’s obvious Govts and MSM will continue to stranglehold the funding M.E receives AND the narrative around prevalence/Covid/Long Covid. So we create our own narrative. We ‘redefine gravity’ –

10. We create something ourselves that is so big it CANNOT be ignored.

11. This is why I want A-list artists to perform. Their ‘reach’ is what our cause needs.

12. Redefining gravity is a CHALLENGE. I figure, if I’m going to do it….DO IT!! Dream big, reach for the stars and see what happens.

13. ‘Challenge’ = No budget. It can only be a success through VOLUNTARY and GOODWILL contributions of time, effort, skills, materials, and talent. Think ‘Challenge Anneka’. If Anneka Rice can do it….. why can’t I? (I’ll give it a good try at least!)

Get in touch if you can/want to help. I particularly need guidance from people with experience/expertise in the music industry and event management. But many hands make light work and all that, the more hands the better!

The JustGiving page for Redefining Gravity has been live since July 2023 and will be accepting donations until after the concert in July 2024, you can donate at any time. All donations go direct to Cure ME/M.E./C.F.S. biobank.  DONATE HERE – THANK YOU

Please follow the socials for this challenge, you can find it on X and Instagram using the handle @RDGravityME. Help to spread the word.

We have merch! (as you can see me wearing in the main photo above) Buy yours today via the website.

WEBSITE – WWW.REDEFININGGRAVITY.CO.UK

£1 million (MINIMUM) ….here we come!!

The post List of Reasons Why This Redefining Gravity Benefit Concert Is Needed first appeared on ME Foggy Dog.

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.

Redefining Gravity video

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)

The post ‘Redefining Gravity’ Fundraising Concert – Open Letter to Chris Martin / Coldplay first appeared on ME Foggy Dog.