500 Miles For M.E.

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500 Miles For M.E.

New Challenge for 2025! Rob is running the Wrexham 10k on 27th April (his 70th birthday!), to raise funds for Invest in ME Research.

Please consider supporting and donating - thank you!

18/07/2025

Severe ME Difrifol Cymru is an informal group of people in Wales with Severe/Very Severe ME and carers. On Tuesday 15thJuly, we had a stall at Y Farchnad (The Marketplace) in the Welsh Senedd, where we hoped to recruit as many Senedd Members (MSs) as possible to support the Motion for debate being sponsored by Adam Price (MS) (Motion8884: https://record.senedd.wales/Motion/8884

We were very busy - with one, two, and sometimes three MSs at a time, engaging with our patient stories, listening whilst we explained the rationale behind the Motion, and each going away with a pack of info. 17 MSs signed our register and there were probably a couple more we missed, and others who were absent from the Senedd on the day but who have written to add their support - in all more than a third of all MSs, most saying they will support the Motion and several offering to speak in the debate. And, of course, they all wanted a photo with the banner and the Team!

We came away very encouraged, and hopeful that the motion will now stand a better chance of being selected for debate after the Senedd’s Summer Recess. We’ll keep you posted.

A BIG THANK YOU: to all of you who lobbied your MSs to attend – it paid off! ; to WAMES, ME Association, Action for ME and the 25% ME Group for supporting our efforts - because we are STRONGER TOGETHER!; to Jeremy Jeffs who lent us his amazing photos; to the Team who variously designed and prepared the display, spent hours printing, paid for the pop-up banner, took the risk of sharing their very personal lived experiences of Severe / Very Severe ME in writing or in person on the day; to those who remained at home as carers so that others could attend; and most especially to those who were too ill to be there themselves but who we knew were right behind us.

What a TEAM EFFORT!!!

Diolch yn fawr iawn, Pawb – Thanks Everyone!

Team on the day: Myfanwy, Eleri, Ian, Gwenda, Rob.

27/05/2025

“The Invest in ME Research International Conference is a beacon of hope and progress for the ME/CFS and Long Covid community. It’s where top minds unite to share groundbreaking research, inspire collaboration, and accelerate the path to effective treatments. Biomedical research is the key to unlocking answers and improving lives—and every voice and every effort brings us closer to a cure.”

- Linda Tannenbaum, Founder & CEO/President, Open Medicine Foundation, USA-Canada-Australia

Invest in ME Research Charity Open Medicine Foundation

19/05/2025

It was great to be running the Wrexham 10k alongside my friend Yanto(aka Gareth aka Deadpool)Evans,Trustee of Long Covid - who, like me, believes that we’re stronger together!

Invest in ME Research Charity Long Covid Support

https://www.justgiving.com/fundraising/br-bpjt2ttucxu7-wrexham-10k

10/05/2025

https://www.eventbrite.co.uk/e/me-voices-wales-tickets-1348201740699

I've been part of a small team organising a new collaborative project - Lleisiau ME Cymru / ME Voices Wales to build a louder voice for people with ME in Wales. If you have ME, or care for someone who does, please consider registering to take part in one of the first on-line sessions - it's the same thing repeated at different times to give you an option: next Tue May 13th 11.00-12:30 and Fri 16th May 6.00-7.30pm.

Looking forward to seeing you there!!

25/04/2025

Today’s my last day of prep for the 10K…and tomorrow we travel up to Wrexham for the race on Sunday. I’ve been taking Paula Radcliffe’s advice and stocking up on the carbs…but that’s just a normal everyday occurrence for me anyway!

It’s been a busy day, so here’s one I made earlier that reminds us what this all about.

There’s still time for you to make a donation to support Invest in ME Research by visiting my Just Giving page: https://www.justgiving.com/fundraising/br-BPJT2TTUCXU7-wrexham-10k?utm_medium=FR&utm_source=CL&utm_campaign=015

Thanks Everyone!

See you in Wrexham!

Invest in ME Research Charity

24/04/2025

Thought I’d just rest on this gate during today’s 10K prep and tell you a bit about what’s going on in Wales and how it relates to my fund raising efforts for Invest in ME Research.

The Welsh Government has given its 7 health boards some money to set up services for people with Long Covid and ME – and told them these services should be ‘co-produced’ – It recognised that patients and carers have a kind of lived knowledge and expertise about the illness that health professionals need to listen to and learn from if they’re going to come up with services that really make a difference to people’s lives.

‘Co-production’ is all about health professionals and people with lived experience working together - as equal partners - to design, and then evaluate and adapt services over time.

So I’m raising funds to support health profs from Wales to attend next month’s international Invest in ME Research conference and get right up to date about the latest research on the causes of, and potential treatments for these life robbing conditions.

So if you can spare a few quid – visit my Just Giving page and any donation you can manage would be greatly appreciated…Thank you 😊

Please let me know if you’re a Welsh health professional interested in attending the Invest in ME Research Conference in May!

https://www.justgiving.com/fundraising/br-BPJT2TTUCXU7-wrexham-10k?utm_medium=FR&utm_source=CL&utm_campaign=015

23/04/2025

Only a few days to go and my prep has been stymied by two things – my knees! They’ve hurt me a lot…so I’ve had to rest ‘em, nurse ‘em…slowly get back to jogging…just a K or 2….musn’t mess ‘em up again…on Sunday they’ve got to carry me 10K…in 90 mins...it’s touch and go!

Please consider supporting me by donating to Invest in ME Research Charity by following this link to my Just Giving page - Diolch / Thank you! 💙

https://www.justgiving.com/fundraising/br-BPJT2TTUCXU7-wrexham-10k?utm_medium=FR&utm_source=CL&utm_campaign=015

21/04/2025

Dr Vicky Whittemore is Program Director at the National Institute for Neurological Disorders and Stroke, National Institutes for Health, USA. She’s a regular participant at the annual Invest in ME Research International Conference and Biomedical Research Colloquium. I asked her what was so special about the event. She said:

“The annual Invest in ME Research conferences bring together the international leaders in research on ME. Biomedical research on ME is critical to find answers for those with the disease. This conference provides the opportunity for researchers, clinicians and those impacted by ME to come together to listen, learn, collaborate and move forward to find the treatments that are so desperately needed. I’ll be explaining our work to bring together an international group of clinician scientists to form a working group on clinical trials for ME, and meeting with the young investigators to discuss the efforts in the USA supporting research on Long COVID and ME.”

Vicky H Whittemore, PhD

Program Director

National Institute of Neurological Disorders and Stroke

National Institutes of Health, USA

Please consider donating on my Just Giving page: https://www.justgiving.com/fundraising/br-BPJT2TTUCXU7-wrexham-10k?utm_medium=FR&utm_source=CL&utm_campaign=015 , so that we can support the attendance of health professionals and researchers and push forward biomedical research to find the causes of, and effective treatments for, ME. Thank you/Diolch! 💙

Invest in ME Research Charity

16/04/2025

I asked some of the speakers involved in the Invest in ME Research 17th International Conference and 14th Biomedical Research Colloquium what makes the event so special and worth supporting. Thanks to Prof Chris Ponting for his reply.

“This year’s gathering of researchers and people with lived experience of ME at the Invest in ME Research International Colloquium is especially important, coming just as the UK Government announces its Delivery Plan on ME/CFS. The Colloquium will accelerate future biomedical research into this terrible disease.”

- Prof Chris Ponting - University of Edinburgh - Chair of Medical Bioinformatics / Group leader, MRC Human Genetics Unit. He leads , the world’s largest genetic study into ME/CFS, funded by NIHR and MRC (£3.2m), with 18,000 DNA participants.

Please consider donating on my Just Giving page - https://www.justgiving.com/fundraising/br-BPJT2TTUCXU7-wrexham-10k?utm_medium=FR&utm_source=CL&utm_campaign=015 so that we can support the attendance of health professionals and researchers and push forward biomedical research to find the causes of, and effective treatments for, ME. Thank you/Diolch! 💙

Invest in ME Research Charity

10/04/2025

Finding effective biomarkers and medicines would transform the lives of people with ME and Long Covid. So the theme of this year’s Invest in ME Research International Conference is ‘Translating Research into Diagnostics and Treatments’. Invest in ME Research Charity

09/04/2025

86 km done so far of 185 equivalent to Wrexham for 10K on 27th April, raising £ for Invest in ME Research Charity . 99 to go in 18 days sounds OK, but dodgy knee forcing slow up/rest. Av 8.9min/km just inside race cut off (9min/km) - jeopardy! Will I make it?

Thank you to all who have donated or sent encouragement my way!!

To donate, please follow this link to my Just Giving page: https://www.justgiving.com/fundraising/br-BPJT2TTUCXU7-wrexham-10k?utm_medium=FR&utm_source=CL

14/01/2024

I completed my 500 miles for ME in November, but have left the Just Giving pages open for a few more weeks. They’ll be closing tomorrow.

A huge THANKS to all of you who’ve contributed through www.500milesfor.me / www.justgiving.com to the work of ME Research UK, Invest in ME Research and WAMES. We started with a target of £3K (1K for each of charity), and, when Gift Aid is included, have nearly doubled that (£5883). Donations came in £, $ and € - well, it’s a world wide cause!

You can be assured these three great charities will put your donations to good use: looking for the causes of ME, finding treatments, raising awareness and understanding, advocating and providing support for people with ME and their carers. You can catch up with the latest news on their websites: www.investinme.org, www.meresearch.org.uk, www.wames.org.uk

I was honoured that Dr Nina Muirhead (Doctors with M.E.), Karen Leslie (Physios for ME), Sue Waddle (ME Research UK ) and Jan Russell (WAMES ) agreed to record a Discussion at Dawn with me, and that Invest in ME Research Charity produced a special video of their work for us. All of these are still available via the Discussions at Dawn tab at www.500milesfor.me.

I was greatly encouraged by your many messages of support on social media - from family and friends, former colleagues, and from people across the UK and beyond who I’ve never met but who share a common concern. THANK YOU all!

And THANKS to all those who showed their support by walking with me, and to my ‘back up team’ (aka the family) for doing the stuff I couldn’t e.g. social media, video editing, organising the Day 100 celebration.

So what next?

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