Having completed 14 London Marathons, on Sunday 23rd April I’ll be running my second Virtual London Marathon (VLM) near my home as again I wasn’t fortunate enough to obtain a place in the ballot. It might seem very soon to ask for support after the October 2022 VLM but I don’t have any control over the date. This changed to October in 2020 due to COVID and has now reverted to April as usual.

Most importantly, I’ll be running for the second time exclusively for the ME Association. 

ME / CFS is a cruel long-term medical condition that causes extreme fatigue and affects many body systems. There are over 250,000 people in the UK with ME. Sadly, these numbers are swollen by those with Long Covid which looks pretty much the same.

Just waiting for a medical miracle to happen does not feel like an option - not least for my wife’s daughter who is now chronically ill with ME. She remains my inspiration and motivation for this solo marathon.

After the VLM last October, we visited her in Australia. It became overwhelmingly clear to us how severe the effects of this condition can be and how they can reduce someone to existing rather than living.

Our time together had to be very limited, activities cut out and still this did not prevent her suffering a “crash” which left her bed bound. Sadly, post exertional malaise can hit suddenly and unexpectedly from almost anything good or bad, physical or cognitive, no matter how much you try to prepare and manage the hazards.

In Anna’s words: 

“It’s scaring us how bad I actually am and how I can’t do anything. It’s a constant learning experience but everything we try is too much. And we never know until after.” It can take weeks or months to recover even some of the ground lost. She says “Trying not to crash is the priority here. We don’t know, my next crash could be one I don’t recover from.”

It is still not understood how this illness is caused. There are no drugs to treat it and, currently, there is no cure. ME continues to be under-researched in comparison with other illnesses but it can be more disabling and have a greater impact on quality of life than some other serious medical conditions. We continue to hope that Anna’s condition will improve but more than hope is needed.
This marathon of 26.2 hard miles is my offering towards doing something positive.

Last year every penny of the money donated went to the ME Association’s Ramsay Research Fund. I received an update on the current medical research projects which your donations are helping to fund. 

The charity has launched a new in-house project to focus on work with the NHS to ensure that reliable specialist services are set up for people with ME / CFS. Additional funds have also been committed to support the work of the UK ME / CFS Biobank run by the Cure-ME team at the London School of Hygiene and Tropical Medicine.

We have also been working with the charity’s Fundraising Manager and he and I have come up with this wish list of 4 items:

• An hour’s listening on the ME Connect volunteer helpline = £12

• Half a day’s work on the charity’s NHS improvement project = £50

• Preparation to speak at an ME/CFS medical conference = £100

• A day’s work by a scientist working on ME research = £150

The figures represent a mix of volunteer and professional inputs and include training and supervision costs. I hope this information will give you concrete examples of how your donations help.

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