Gloucestershire Friends in City News


Mike Harley met with members of the Gloucestershire ME/CFS Friendship Group on Sunday after completing the Gloucester Half Marathon in training for the next of his 28 EU Marathons charity challenge for Invest in ME Research.

Congratulations to Mike and his supporters for tipping over the £15k mark towards his fundraising target of £26,200!

Mike raises awareness of the issues around ME (Myalgic Encephalomyelitis) in every country he runs in, supported in his outstanding efforts by his wife Cat.

Team Harley now includes baby Lucy who watched Daddy race for the first time on Sunday and achieve a personal best!

Mike and Cat fund all their own travel and other expenses for the challenge so every penny raised goes the vital biomedical research funded by the charity.

The following extract is from a great article by Ed Stilliard, Chief City Reporter for Gloucester Live, published prior to the race, which includes the story of one of Mike’s friends with ME, Rachel Ephgrave, pictured below.


Bristolian Mike Harley, 36, is also running that race for his friend Rachel Ephgrave from Cheltenham who suffers from ME (myalgic encephalomyeltis), also known as chronic fatigue syndrome.

He wants to raise cash for the ME research charity Invest In ME ( and is dedicating the race to the Gloucestershire ME/CFS friendship group.

The Gloucester race is training for a challenge which he already part of the way through completing – a marathon in all 28 EU countries.

His next marathon is on March 17 in Cyprus which will be followed by marathons this year in Slovakia, Latvia, Hungary, Romania and Portugal.

He said: “I have raised nearly £15,000 so far and up to £250 for the race next Sunday already.

Former physics teacher Rachel Ephgrave, 43, who has had ME for 12 years, said: “It is so encouraging to see Mike raising awareness of ME and raising funds for biomedical research by running marathons across the EU.”

She said a quarter of those affected are either housebound or bedbound and it has forced her to rely on others to help her.

“Since becoming unwell I have had to give up my teaching career, I generally need to use a wheelchair to leave the house and have lost a large amount of my independence,” she said.

“I rely on my family and friends to help me with basic things like doing the washing, cooking, collecting my son from school and giving me lifts to medical appointments.

“ME is a difficult illness for others to understand as you can often appear well when seeing someone for an hour or two, then [a range of symptoms hit] later when you are on your own.

“When I am at my worst I struggle to think, have difficulty finding words and speaking in sentences, I find sound and light difficult to tolerate, I cannot concentrate to read or watch TV.

“I can be too weak to sit up or move around, and become freezing cold as I cannot control my body temperature.

“I have no choice but to lie still in the quiet, often in pain, until I start to feel better, while relying on others to look after me.

“Having been ill this long I know that my best hope is biomedical research into understanding the causes of this illness, hopefully leading to treatments.

“I have so many things that I want to do in life; an effective treatment cannot come soon enough for me and my family.”

To find out more about Mike’s challenge visit his webpage and to sponsor him click here.


Extract above from Road closures announced for marathon in Gloucester today.

Many thanks to Ed Stilliard, Gloucester Live, Mike Harley, Cat, Lucy, Rachel Ephgrave, Linda Hending and the Gloucestershire ME/CFS Friendship Group and to all Mike’s sponsors and supporters.

Please share the links widely to help Mike achieve his fundraising target and to help raise ME awareness across Europe.

Invest in ME Research is Chair and founding member of the European ME Alliance, which formed the European ME Research Group in 2015 and has just formed a European ME Clinicians Council.

Find Mike’s EU Marathons on Facebook and @MikesEUmaras on Twitter.

Mike’s excellent EU Marathons website and JustGiving page for donations.

Thank you for supporting Invest in ME Research!


International Ambassador for ME: Mike Harley

By Barbara Fifield via MillionsMissing Canada on Facebook and Twitter

Mike Harley, a very personable young man from Bristol England, has a best friend, Ian, who has been ill with Myalgic Encephalomyelitis for more than a decade.

Frustrated at seeing CBT and GET pushed on those suffering with a biomedical condition and wanting to do something substantial to help his friend, Mike decided to bring attention to, and raise funds for, biomedical research into ME. He then decided to do that by running in marathons.

Mike’s ambitious plan is to run a marathon in every country in the EU (European Union). That makes 28 in total, and so far he’s right on target.

Starting his venture in May 2015, Mike has run in an incredible nine races in nine different countries! He’s run in the UK, Czech Republic, Finland, Ireland, Greece, Sweden, Poland, Belgium and France. He plans on running in five more each year, for the next three years, finishing up in 2020.

Next marathon up is number 10 in Barcelona, Spain, this coming weekend on Sunday March 12th, 2017. He’s hoping to meet up with a group of patients as well as some ME researchers.

Wherever Mike runs, he convenes with international ME associations, support groups, patients and press/media to promote the need and put pressure on governments to fund biomedical research projects. It’s his intention and mission to help highlight the struggle that ME patients live with, in each country that he visits.

He’s been on BBC Radio and featured on running websites. He’s also had previous press coverage in France, Czech Republic and Belgium.

Mike’s goal is to raise £26.2K ($42,000 Canadian approx.) So far he’s raised a whopping £5892.90 ($9,600)! All funds are going towards Invest in ME’s Rituximab Trial and the creation of their exciting new ME Centre of Excellence.

The ME community is well acquainted with the outstanding work that Invest in ME has done over the past 12 years of so. We’re all looking forward to their next conference coming up soon, where the ‘best of the best’ and the ‘latest and greatest’ is always featured on their agendas!

In our communication with Mike, he writes:

“I pay for all of my expenses (hotels, flights, race fees and kit) as I don’t want to spend a penny of patient’s donations on this. If I did, it would delay their access to a cure or treatments. I’m trying to secure corporate sponsorship to keep the challenge going as each race costs close to £700. If anyone within a business might be interested in helping from this perspective, which would be fantastic.

I’m not a natural runner. I’m 5ft 6 and not naturally athletic, so I find the running tough, but the support I’ve had over the first 2 years of the challenge has been genuinely life-changing for me. I now consider myself an advocate for the ME community and actively try to recruit others to complete sponsored events to fund ME research.”

What an inspiration this young man is – giving hope to millions.

With much thanks from the international ME community and your friends here at MillionsMissing Canada.

Go Mike! ♥

Please consider donating to Mike’s page. For those with ME, a donation to Mike and IiME is an investment in the future of us all!

Donation Page:

Donate by Texting: IIME82 and £3 to 70070

Facebook Page:



Mike’s EU Marathons for Invest in ME Research

April Updates

April Updates

Dr. Nigel Speight was showered with expressions of support and gratitude in April by patients & families across the world upon news that the General Medical Council had published the conclusion of an Interim Orders Tribunal hearing that this wonderful doctor’s practice in the field of ME/CFS may be deficient (there were no findings of fact). The interim order states that Dr. Speight must confine his practice to NHS posts as a Consultant General Paediatrician. It prevents him from carrying out any work in relation to ME (including speaking or lecturing on the subject) and will be reviewed after 6 months. In January 2016 Invest in ME sent a letter to the GMC in support of Dr Speight. They have never heard of Dr. Speight being criticised by any patients or their families. On the contrary, he is extremely well regarded by everyone in the international ME field and has presented at the CPD accredited international Invest in ME conferences and invited to speak at numerous conferences in Europe. He gave the pre-conference dinner speech for the 9th international Invest in ME conference in 2014. His talk was on very severe ME and is included in the IIMEC9 DVD of presentations. So we patients with severe ME driving the Let’s Do It for ME awareness and fundraising for Invest in ME Research sincerely hope that Dr. Speight is relieved of these restrictions by the GMC at the earliest possible opportunity. We fully support high quality education of medical students & in-service training of NHS doctors. Our doctors deserve this and our lives depend upon it. Far from being denied the specialist expertise of Dr. Nigel Speight, the world needs more like him.

April Updates on the Invest in ME Research ..

Our update on the IiME B-cell / Rituximab Research

Our update on the IiME Gut Microbiome in ME Research

April Awareness & Fundraising for Invest in ME Research Funds ..

Model Joanna Chamberlain has two grown up children with ME and she hosted a Vintage Fashion Show in Caterham, Surrey raising over £1200 for Invest in ME Research Funds. Watch out for an upcoming blog on this spectacular event. Meanwhile, you can take a stroll back in time through the stunning photos at Joanna And Her Vintage Violets Charity Catwalk on Facebook.

Lee Taylor completed the Spring Wolf Run and exceeded his fundraising target for Invest in ME. Lee explained: “My younger sister Kassandra has suffered from this debilitating condition CFS/M.E for 12 years and most recently been diagnosed with fibromyalgia. I will be giving all donations received via “just giving page” to Invest in M.E on behalf of Solihull and South Birmingham M.E support group of which my sister has been a member for a number of years All donations will be very much appreciated.” What a great brother. Thank you Lee.

It was all Greek to marathon man Mike Harley as he ran the 5th of his 28 EU Marathons in Thessaloniki. Mike is doing a great job raising awareness of this illness and funds for Invest in ME as he makes his way across Europe. Invest in ME is a founder member and current chair of the European ME Alliance of patient organisations. Mike’s epic efforts are inspired by a determination to help all sufferers, like his friend Ian Couch, to have proper recognition and treatments for ME. Before setting off to defeat the Alexander the Great Marathon, Mike conducted an interview to find out what it’s like to be a patient with ME in Greece. Click here for Mike’s Spring Update.

Can it really be a year since amazing dad Mike Shepherd ran a full marathon at the North Pole? Click here to see our Facebook photo album of Mike’s incredible journey to the Arctic for Invest in ME.

Actor Jon Campling was up to tricks at Sci-Fi Scarborough. Not content with waving his Invest in ME Charity collection box with his usual flourish (scroll down Fundraising 2016) our favourite Harry Potter Death Eater unicycled across the stage! Michelle Nunn also tested his ability to learn his lines by challenging him to say ‘Myalgic Encephalomyelitis’. Is there no end to this man’s talent’s? Find out here on youtube.

We were thrilled to see Stacy Hart back at the Watford Observer. To celebrate her return she is giving away two of her exclusive design Runnin On Empty T-shirts and has given Invest in ME a slot in her new fortnightly column for ME news and we must say, didn’t they do well! Read more at Runnin On Empty- Good Grief, I’m Back.

Spreadshirt is offering free standard delivery for 2+ items until 1st May.
Checkout Code: TWOWOO
Valid until 01.05.2016.

All seller profit from our online shops goes direct to Invest in ME.

These are * Let’s do it for ME * Designer-ME * Make ME * The Big Sleep for ME *
* ME Awareness *

Joan Crawford’s coast to coast cycle ride will take place on the last weekend of April/beginning of May 2016 – the bank holiday weekend. Click here to read Joan’s interesting account of why she is doing this for Invest in ME.

Tom Moysey & John Savage set off on their cycle ride from John O’Groats to Land’s End on 29th April. Read all about it here.

Lynne Allan reached her target of 100 sales since opening her online jewellery shop on Etsy in October with which she raises awareness & funds for Invest in ME. See her full range at ME2UDezignz.

May is ME Awareness Month and this year is extra special as May 2016 marks 10 years since a small but mighty group of patients & parents registered as the charity Invest in ME. The first 3 days of June will see the 11th Invest in ME Conference & 6th Biomedical Researchers into ME Colloquium.

We’ll follow shortly with more news and a summary of what supporters are doing for May Awareness & Fundraising for Invest in ME Research. ME Awareness Week is 9th to 15th and May 12th is International Awareness Day for ME and other Chronic Immunological & Neurological Diseases.

We also hope to bring you news and updates throughout the month. So this is may be a good time to click here to enter your email address if you would like to receive our blogs by email and to please contact us if you would like us to feature your event, write a guest post for our blog, or with any questions.

Latest totals for Invest in ME Research Funds ..

£483k raised of £520k target for the B-cell/Rituximab Research

£167k raised of £200k target for the Gut Microbiome in ME Research

There are also current sponsorship opportunities for the Invest in ME Conference Events.

Thank you for your support!

April Updates