Help M.E. – Final Call

This is an interruption to my current series on chronic conditions and Celtic mythology to ask for a minute of your time and the price of a cup of coffee or a pint for the charity ME Research UK.

As you may know if you read this blog, I have had ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) since July 2024. To summarise the condition in a word, it’s a nightmare.

“In its most severe form, this disease can consume the lives of those whom it afflicts.” — National Academy of Medicine

The symptoms have included profound fatigue, post-exertional malaise, exercise intolerance, irritable bowel syndrome (IBS), brain fog, orthostatic intolerance, dizziness, unrefreshing sleep, wheezing and breathlessness, small fibre neuropathy, chronic 24/7 headache, neck and shoulder (‘coat hanger’) pain, and heart problems including new atrial fibrillation.

Yes…it’s a lot. And that’s mild-moderate ME/CFS. Those with severe ME are bedbound and often require carers in order to live.

“People are often housebound or bedbound for long periods, sometimes lasting many years.” — NICE, UK

For me, it has meant I’ve been unable to work for months, unable to exercise, unable to tolerate time pressure or stress, unable to socialise much, unable to stand for long, unable to tolerate heat (thanks summer 2026!), and even unable to drink alcohol!

I’ve found that – suddenly – I’m disabled. It’s a dynamic disability because symptoms fluctuate and appear in different patterns. At worst, I’m housebound and in bed most of the day. At best, I can work and get about, slowly. But I pay for it. I spend weekends and days off recovering, often horizontal. I described my experience of ME/CFS in this post using text messages from the last two years.

Anyone who knows me will know that this is a special kind of torture. I have many ideas, which now take so long to come into fruition. Most just can’t. Not yet.

“It is distressing, debilitating, and affects a very large number of people.” — Sir Kenneth Calman, former Chief Medical Officer, UK

I don’t know what the future holds. I don’t know whether I’ll be able to work long term. This is because there is no cure for ME. And the reason for this is that ME/CFS is the most underfunded, most neglected and probably least well understood chronic illness.

My eldest brother Gary Shorrock is an ultra-long distance runner. He’s 6 years older than me, now in his late 50s, and this coming weekend 27-28 June is running 66 miles for ME.

“ME/CFS impacts on all aspects of daily life.” — Royal College of Anaesthetists, UK

The route is called the Bob Graham Round, in the Lake District, England. To complete it, he must cover 66 miles, summit 42 fells, and climb more than 8,200 metres – approximately 26,900 feet of ascent – all within 24 hours. It will involve steep, rocky, possibly boggy terrain, with sections in darkness and perhaps harsh weather. The Bob Graham Round is an exceptional test of endurance, preparation, judgement, and determination. Just over 3000 people have ever achieved it.

The funds raised through this challenge will go to ME Research UK, a charity that commissions and funds high-quality biomedical research into the causes, consequences, and treatment of ME/CFS. 

“CFS/ME should be classified as a chronic condition with long-term effects on health alongside other illnesses such as multiple sclerosis and motor neurone disease.” — Sir Liam Donaldson, Chief Medical Officer, UK

There is an urgent need for better scientific understanding of a disease that affects hundreds of thousands of people in the UK – millions worldwide – and leaves many housebound or bedbound, with their lives on hold.

Fundraising is hard. Really hard. It’s even harder with an energy limiting condition. But I’ve persisted, for weeks. And I know times are hard and we delay even small things until tomorrow. But readers, I’m asking for your support.

If you’d buy me a pint (alcohol-free nowadays) or a cup of coffee – perhaps you or your company has got something from what I’ve written here since 2012 – then you can! You can do that by giving the equivalent to ME Research UK via our Just Giving page. At the time of writing (horizontally, in bed, via my phone), 105 people have supported me, us and ME already. I hope you will join us. It’s not the amount. It’s the act of support.

“The Greatest Medical Scandal of the 21st Century.” — George Monbiot, Journalist

Thank you to those who have already. I’ve noticed. I appreciate it. And thanks to those who will. If you can’t, then spreading this post is also a positive act.

Please donate

🔗 Here is the link or go to bit.ly/gary66

If you’d like to understand more about myalgic encephalomyelitis, I encourage you to watch UNREST, an award winning feature documentary. This is what we’re dealing with.