Mikes EU Marathons for Invest In ME

Jo Best

Jo Best

Senior Member
Messages
1,032
Please could everyone supporting Mike in UK (or access to the BBC website) view and share this link to the late evening BBC Look East TV news report on the Invest in ME Research Centre of Excellence and rituximab trial -
http://www.bbc.co.uk/iplayer/episode/b08bbztq/look-east-late-news-26012017

It is on youtube in two parts - the full report in the early evening news, and the studio interview of Prof Simon Carding (shout if you need the links) - but if you can access the BBC site then it will help show the level of public interest in this research. BBC Look East covers a large region in UK but it would be good to make national news. Thanks :)
 
Mike Harley

Mike Harley

Messages
51
Location
Bristol
Hi all.

Hope you're all ok. I'm 5 weekends away from running number 10; Barcelona Marathon.

Just posting my interviews with 3 very courageous Spanish ME patients here.

Not happy reading and fairly typical of much of Europe but I'm going to do everything I can to share their stories with the media over in Spain and the health authorities. If I can get just one person to understand what ME is and how it affects people there then this will be worthwhile.

http://www.mikeseumarathons.eu/spain.html

I'll be meeting a couple of them in Barcelona if they're well enough, hopefully we can do something to help.

Thanks

Mike
 
Jo Best

Jo Best

Senior Member
Messages
1,032
Invest in ME Research posted yesterday on facebook that the charity has revamped the web page for Mike's EU Marathons slightly. They wrote,
Whenever this great campaign is reviewed we never fail to be amazed and impressed at this enormous effort being made - over 5 years - to help us form a foundation of biomedical research in Europe which will change the future.

Please help us spread the word around Europe

http://www.investinme.org/ce-IIME-Newslet-1504-02.shtml
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Mike Harley

Mike Harley

Messages
51
Location
Bristol
Hi everyone.

So Barcelona went well and I've now ticked off 10 out of the 28 marathons!

Here's my report from last weekend: http://www.mikeseumarathons.eu/barcelona-spain-march-2017.html

We raised £1K on this race for Invest In ME. The ME in Spain blog had over 6,000 views and we met with patients from two different ME support groups in Spain to help raise awareness there.

I'm doing Luxembourg next on May 27th and would like to try to find at least one patient there to interview.

By my calculations there should be 2000 ME/CFS patients there, it'll be hard to track one down but if anyone knows of anyone, I'd love to talk to them.

Thanks for all your support.

Mike
 
Mike Harley

Mike Harley

Messages
51
Location
Bristol
The lovely runner folk over at UKRunchat featured my challenge and Invest In ME this week on their 'Charity Focus'

They posted on Instagram (10,000 followers) and 3 times today on Twitter (50,000 followers), that's a decent bit of awareness and I've had some nice messages from runners with family who have ME.

IMG-20170321-WA0000.jpg


They've been really supportive of the challenge and could prove valuable when Runners World and the other big sports mags come calling in a couple of years.

Mike
 
Mike Harley

Mike Harley

Messages
51
Location
Bristol
Hi All.

My next race (number 11 of 28) is in Luxembourg on May 27th.

I've interviewed a lady called Katja who is one of an estimated 2000 people with ME living there.

Here's what she told me.....

http://www.mikeseumarathons.eu/luxembourg.html

It's a tough read, she's had an awful time but I'm hoping we can get enough views from sharing that someone else from Luxembourg will emerge who she can talk to.

Please feel free to share etc.

Thanks

Mike
 
Jo Best

Jo Best

Senior Member
Messages
1,032
Just read this update on the Pre-Conference evening dinner by IiME Research in their Facebook group:

Our pre-conference dinner is a way of us meeting up and networking before the conference with our colleagues and researchers.

A lot of our friends from Europe and overseas will be attending.

The European ME Alliance will be present.

We are very pleased that a great supporter of Invest In ME Research Jon Campling Actor will be there.

We also have Mike Harley present (Mike has a busy week as his Luxembourg marathon is this weekend) and he will be at #IIMEC12 on Friday - http://investinme.org/ce-IIME-Newslet-1504-02.shtml

Our guest speaker is David Tuller who will be presenting an interesting commentary, on such things as the #PACETrial

David's presentation will be available on the Conference DVD - which can still be ordered in May at the earlybird discounted price.

Last year's pre-conference dinner speaker - Kjersti Krisner will be there also, this year an honorary IiMER-helper also.

There are many others also attending and the evening already has a list of over 100 attendees - making it the largest we have ever had.

News items relating to the conference are here - http://investinme.eu/IIMEC12-news.shtml

Chairman Kathleen McCall has led the charity a long way since that small beginning in 2006 for our first conference.
Here is the chairman's welcome speech - http://investinme.eu/IIMEC12-chairman-message.shtml

For those coming to London - the charity looks forward to welcoming you - and the weather looks to be pleasant - https://weather.com/en-GB/weather/tenday/l/UKXX0085:1:UK





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