Welcome to the Invest in ME Research October 2021 newsletter
NICE - Legitimising the Omnishambles
The debacle that has transpired since the pausing of publication of the NICE guidelines for ME continues.
On 29th September, three weeks after Invest in ME Research wrote our third letter to the CEO of NICE, Professor Gillian Leng, we received a response.
The response failed to address most of the concerns that we raised about the irregular pause and the subsequent clandestine meetings and lack of transparency from NICE.
Our reply to Professor Leng is here - click here.
The disregard for the lives of people with ME and their families continues - assisted by those who continue to support the NICE tactics by compliance or by particpation for self-interest.
Meanwhile, NICE is facing a legal challenge for the pause of their guidelines - from a patient!
Ben Scott
Ben Scott has been running marathons for IiMER and collecting donations for research into ME along the way - recently another £500 was received from Shorts of Belfast.
Last weekend Ben ran the Belfast marathon - and last month it was marathon number 24 at Monaghan Phoenix Marathon Festival 2021
An incredible effort to raise so much awareness for ME from this modest yet determined guy doing so much to help people with ME.
Ben's fundraising page is here so share the page on social media -
Perhaps due to the publicity surrounding long covid, or perhaps due to ME gradually becoming more recognised, there appears to be more and more new people being drawn to this disease - either as patients, family members or even researchers.
Newcomers to ME may often be unaware of the history around ME - both the poltics and the scandals. This may lead to innocent naivety when believing what some organisations are doing or where they stand.
The PACE Trial is one example of a scandal that has affected millions in direct and indirect ways.
In order to facilitate awareness of the scandalous waste of public funding we have made up a page carrying links to all PACE Trial articles, in chronological sequence, made by the charity and some others.
The link is here - click here
Invest in ME Research has consistently called for the PACE Trial to be retracted. We would hope other organisations support us by doing the same.
#KingRegis Helping IiMER
International film star Jon Campling is aiming to raise £10,000 for Invest in ME Research.
Jon often makes appearances at venues and highlights ME - thus increasing awareness and knowledge.
This great effort can be shared on Twitter - look out for Jon's Twitter userid - @joncampling
It would be wonderful to get Jon more followers and help with the cause by publicising and sharing this link http://justgiving.com/WalkTall4ME
Royal Parks Half Marathon 10 October
This Sunday Kate and Lee will be running the Royal Parks Half Marathon in support of Invest in ME Research.
All support on social media for them would be greatly appreciated. Their fundraising pages are here -
This weekend Mike Harley is running the penultimate marathon in his multi-year EU Marathon campaign that is raising funds for the charity and raising awareness of ME.
This Sunday 10 October Mike runs in the Croatian marathon in Zagreb - number 27 of his 28 EU marathons.
For anyone wishing to suppport Mike (and research into ME) here is his fundraising page -
Mike was recently interviewed by Croatian TV programme Good morning Croatia. Mike talked to Ivan Ivezic about life with ME in Croatia.
As always Mike is using this opportunity to shed light on the situation at a local level - something that is helping the work of members in the European ME Alliance.
Read more about ME in Croatia here - http://www.mikeseumarathons.eu/croatia.html
Thank You - IiMER Wins £1000
Thanks to everyone for the wonderful support that led to Invest in ME Research being awarded £1000 in the recent MyGivingCircle ccompetion. With this great support we finished in the top 20 - quite an achievement for an ME charity that competed against many USA organisations and others from different countries around the world.
Another opportunity presents itself over the next three months and simply requires a vote to enable the charity to have a chance of winning funding for biomedical research into ME. Here is the link to vote.
Thanks again to all supporting the charity.
It is with great sadness that we heard the news this week of the passing of Graham McPhee.
Graham was a retired British mathematics school teacher living with ME and was involved in the "citizen-scientist" analysis of the PACE trial.
Those who knew him will also remember him for his 'dad jokes' and his support for all who needed it.
His son Ian (also a person with ME) wrote:
''The hospital rang yesterday evening to say dad has passed away. He went fairly quickly and peacefully, and wasn't in pain. We'd been to see him that afternoon, and although he was mostly out of it, he had a good smile and we held his hand, which we're so thankful for now.
I already terribly miss his support, wisdom and awful jokes. He has left a huge hole, and I'm so glad we managed the short walks together just 2 weeks ago."
