On the 31st of May 2023, with the help of my pals Will Barnes and Tom Clifton, I will be attempting to play 100 holes of golf in one day at Bridport and West Dorset Golf club in order to raise money for the disease ME/CFS (Myalgic encephalomyelitis / Chronic Fatigue Syndrome). All donations will be split equally between the Ramsay Research Fund (operated by the ME Association) and the ME/CFS Alliance. The challenge should take around 14-18 hours to complete and will cover approximately 25-30 Miles (no buggies included!).

We are doing this in support of one of our closest friends who has been suffering with the disease since November 2021. Many of you will know Sam and will know his story. But for those who don't, here is a brief description of his situation:

In November 2021, Sam caught a virus called 'Labyrinthitis' which lasted for about a week. Unfortunately, two weeks later he started experiencing severe crashes and a whole host of other nasty 'post-viral' symptoms which left him mostly bed bound for a couple of months. Those symptoms included chronic fatigue, severe PEM (Post Exertional Malaise), gastrointestinal issues, sound and light sensitivities, headaches, nausea, poor sleep quality and a huge increase in eye floaters affecting his vision. The Doctors had no real explanation as to why this was happening to someone who was previously fit and well, other than a post viral fatigue diagnosis. He was told to just rest and he should recover quickly. However, this was not the case. Since then, he has battled a series of symptoms, primarily chronic fatigue which has drastically affected his lifestyle, to the point he has had to take a 6-month period out of work and almost completely isolating himself from the outside world, in an attempt to let his body recover. Thankfully, he has seen some brilliant progress recently and the complete break from normal life has benefitted his condition. Although his condition has improved, his symptoms remain and, as such is the nature of the disease, they often fluctuate in severity between weeks, days and even hours.

ME/CFS is an anomaly of a disease as an understanding of firstly what it is, and secondly how to treat it, is lacking. With no known cure or conclusive treatment, ME/CFS is a complex multisystem disease with symptoms that cut across several medical boundaries – genetics, endocrinology, immunology, muscle pathology, and neurology in particular. It is a fluctuating medical condition that affects everyone differently, in which symptoms and their severity can change over a day, week or longer. Symptoms include Fatigue, Cognitive dysfunction, Myalgia (muscle pain), Neck and Spine stiffness, Brain fog, Chronic sore throat, flu-like symptoms, Dizziness and Nausea (McDonald & Webster-Philip).

The disease has been heavily stigmatised in the past as an 'epidemic of mass hysteria', with patients just being told the problems they were experiencing were manifestations of their minds and were not really taking place. Patients of ME/CFS and Long Covid still face a huge amount of misbelieving. Two thirds of patients working in the UK say they have experienced some form of unfair treatment at work, ranging from harassment to being disbelieved about their symptoms or threatened with disciplinary action. One in seven said they have lost their jobs...

However, as a result of the fantastic work and research done by the likes of Opal Webster-Philip (ME Alliance) and others, the disease is becoming more and more understood and less stigmatised within mainstream medicine. An estimated 17 million people suffer with ME/CFS globally (not including the 70 million people suffering with Long Covid), of which 285 thousand are living with it in the UK (McDonald & Webster-Philip). Additionally, an estimated half of the people suffering from Long Covid now meet the criteria for ME/CFS, so numbers of patients are expected to rise by around 400% as a result of the Covid Pandemic.

Sam’s condition will hopefully continue to improve, but many patients aren’t so lucky with only 7% of patients said to be ‘improving’ with the vast majority either seeing their condition worsening or continually undulating (Chris Ponting, Decode ME Study). Around 25% of patients have severe or very severe ME/CFS which means they require 24 hour a day care, often provided by a loved one as there are no benefits for a disease like this with no physical diagnostic test. Patients in the most severe cases are 100% bedbound, tube fed and stay in a dark room with no visitors. Only 5% of people ever fully recover.

I would love to raise money to continue to build awareness for this awful disease and also to contribute to the Ramsay Research fund which invests in biomedical research studies and infrastructure projects that will help lead to: A better understanding of underlying disease mechanisms, the development of reliable diagnostic tests for use in surgeries and clinics, and safe and effective forms of treatment.

Any contribution to this cause would mean the world to me and my mates.

Thank you.

Will

(Photo descending order: Sam, Tom, Will B, Will W)