Invest in ME Research is an independent UK charity campaigning for, and funding and facilitating biomedical research into myalgic encephalomyelitis (ME).
More details of the charity are here.
|
|
|
|
Welcome to Invest in ME Research newsletter for October 2020
|
|
IiMER Signs Clinical Trial Contract
|
|
|
|
During the summer Invest in ME Research completed the signing of the contract with the Quadram Institute for the RESTORE-ME project that is performing a clinical trial in Norwich Research Park.
The latest award was announced in the press release (click here).
The project officially started in August and the Clinical Trals Unit now has a manager appointed and working on this.
The team is designing a logo for the project and this will be announced soon - allowing easy identification in news items.
We appreciate any help that we can receive to raise awareness of this research, and support for the research that the charity is funding at a UK/European Centre of Excellence for ME.
More on this |
|
|
|
|
National Institute for Health and Care Excellence (NICE) will soon release their revised (draft) guidelines for ME.
After the numerous letters that IiMER had written to NICE in the past, and the admittance from NICE that was elicited by our letters that the existing guidelines had failed and the recommended treatments were flawed, then we have expected the token removal of Grade Exercise Therapy (GET) from their forthcoming recommendations and a watering down of their recommended treatment of Cognitive Behaviour Therapy (CBT).
Anything to save face (see here) rather than admit what patients have known for years. Ahead of the publication of the draft guidelines we can already see some re-aligning their official stance on GET and CBT - decades late!
IiMER will examine the draft guidelines when they are published and respond (as we did when the existing guidelines were published 14 years ago - though we hope that we will not have to write another 110 page response to the draft guidelines this time as we did back in 2006).
|
|
Sunderland and South Tyneside Donation
|
|
|
It is always sad when an ME group closes - especially when the people have been stalwarts in defending and representing people with ME over many years. So it was sad to hear news of the closure of Sunderland and South Tyneside ME/CFS Support Group run by Pauline Donaldson.
|
|
|
Pauline was at our very first international ME conference in London and she has been a great source of information and a dedicated advocate over 27 years - also supporting the work of Professor Malcolm Hooper and the John Richardson group. Pauine was awarded the British Empire Medal for services to people with ME and their carers in 2015.
Pauline sent a note to us informing us of the group's closure, along with with a cheque for £5000 that her group had decided to donate to IiMER.
Our grateful thanks to Pauline and all at the Sunderland and South Tyneside ME/CFS Support Group for this very generous gesture - we will add this to the biomedical research fund supporting the Restore-ME clinical trial in Norwich Research Park. We will keep in contact with Pauline in the future.
|
|
David Tuller - #TearItUp (cont.)
|
|
|
Maybe people remember our IIMEC12 pre-conference dinner presentation by David Tuller where he went through the PACE Trial - a flawed and historically absurd peice of research that contributed to so much of what has been wrong with ME over the last decades (NICE guidelines, lack of fundamental research, failed research council policies, disingenuous organisations claiming to represent people with ME etc).
We gave the pre-conference dinner presentation the title - Tear it Up - for obvious reasons [click here] - but mainly based on a rumour of what David did at a previous conference when he had a copy of the trial.
David is now fundraising for his continuing work at Berkely and a fundraising page has been set up for those wishing to support his work - details are here https://crowdfund.berkeley.edu/project/22602
|
|
Despite all of the constraints presented by the Covid-19 pandemic, with all marathon events cancelled or severely modified, Mike Harley overcam all sorts of problems to continue his Euro marathon campaign by actually travelling to Bulgaria for the Sofia marathon.
Thanks to the generosity and support of followers Mike smashed his original funding target and reset it to £42,195 - equivalent to the number of kilometres he will run in completing his campaign.
|
|
|
Due to everything that has been happening this year we have decided not to offer Christmas cards to support the charity's work.
Instead we are just using e-cards for Christmas - which allows the unrequired postage to be donated to IiMER.
By using Don't Send a Card then Christmas cards can be sent via email and the cost of the saving in stamps can be a donation to research.
We are also providing stickers if people do wish to send actual cards. The designs above can be applied to cards or to envelopes. Available from IiMER
https://www.investinme.org/shop.shtml
|
|
Dr Jonathan Kerr was one of the first researchers whom we invited to our international ME conferences. Dr Kerr is now working in Norwich Research park at the university hospital and he has continued research into Epstein–Barr virus induced subtype of ME.
His recently published paper - Early Growth Response Gene Upregulation in Epstein–Barr Virus (EBV)-Associated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - is here https://mdpi.com/869602
|
|
|
The European ME Alliance is embarking on a new programme of work after the summer AGM.
Four new European members have joined EMEA recently as the Alliance expands to enable more influence on European policies toward ME.
In this work EMEA will be working closely with the European Federation of Neurological Associations (EFNA) to collaborate and support each other in Europe.
More EMEA news here
|
|
|
|
|
