Welcome to our Newsletter
January 2018
|
|
Invest in ME Research is an independent UK charity campaigning and facilitating for biomedical research into myalgic encephalomyelitis (ME).
More details of the charity are here.
|
|
Thanks to everyone who donated to and/or supported the Invest in ME Research Christmas / New Year fund appeal.
The appeal was to raise funds to establish more research and education for our Centre of Excellence for ME and it runs until the end of January.
We have had several very generous donations already and campaigns to raise funds.
They can be seen on our Christmas Tree fund page - click here
Our associated advent calendar brought out several of the issues with ME.
One of the topics in the advent calendar was concerning the awareness of the Chief Medical Officers of the UK regarding ME. We invited them to give a New Year message to people with ME and their families.
See the results later in the newsletter.
Some of the posters from different days are shown below as a reminder
|
|
Question to UK Chief Medical Officers
|
|
Our contact to the Chief Medical Officers of UK asked a very simple question. Rather than send in another request, another list of points, we decided instead to do things differently and pose a question that they could easily answer -
What message will you give for this Christmas/New Year to all people in UK who have Myalgic Encephalomyelitis, and to their carers and families and their friends, regarding the prospects for people with ME?
The results are disappointing.
After having to resend the letter to each CMO we have had one reply - from the CMO of Northern Ireland.
From CMO Scotland a promise to respond once they have discussed with their advisors.
From CMO Wales nothing.
From CMO England - perhaps the most shameful of all given their resources - nothing - demonstrating perhaps the contempt shown to this disease and to those who suffer from it.
In the spirit of cooperation we have reached out to the Northern Irish CMO and offered support for their plans to establish a clinical specialist With our European ME Alliance colleagues at Hope 4 ME Fibro (H4ME), who have made an offer to fund places at the IIMEC14 conference, we have made an offer to facilitate networking in London for their newly appointed consultant, if that consultant has the endorsement of H4ME.
We can also look for support and cooperation with other initiatives that are going on.
And the other Chief Medical Officers of the UK? We will ask again.
|
|
Royal Parks Half Marathon
|
|
|
For 2019 we have six places for the Royal Parks Half Marathon. One place has already been allocated.
If you wish to run to raise awareness and funds for biomedical research for ME and to support the charity then please contact us.
Here is a link to last year's events.
|
|
|
Our international conferences (now fourteen arranged) and research Colloquiums (nine arranged) have brought together researchers from around the world and been instrumental in forging new and promising collaborations.
We feel it is important for experienced clinicians to share their knowledge on diagnostic and treatment methods and produce documentary aids for the research community focused on clinician guided treatment trials, identification of possible illness subsets, and observations of illness presentation.
The charity is, therefore, initiating and facilitating the formation of the European ME Clinicians Council (EMECC) - a network of clinicians working together
Read more
|
|
|
Perceptions of Care in a Hospital’s Emergency Department
|
|
|
A very useful paper just published by Timbol and Baraniuk discusses Emergency Department visits by ME/CFS patients.
"CFS patients present to the ED with a complex list of chronic symptoms, but the acute reasons for presentation are related to orthostatic intolerance, fatigue, PEM, and diarrhea."
|
|
|
|
Jim Baraniuk is a regular at IiMER colloquiums and conferences and always has very interesting and useful contributions.
Read more
|
|
|
Neuroinflammation and Cytokines in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Critical Review of Research Methods
|
|
|
 The full paper has now been published by VanElzakker et al. The paper is a comprehensive review of ME/CFS neuroimaging studies.
"The ME/CFS research field has been stuck in a somewhat defensive posture, with a focus on demonstrating “this is a real condition” by showing significant biological differences between patients and controls. We believe this has led to a situation in which too much is made of the specifics reported by descriptive studies (such as the average “cytokine profile” present in cases vs. controls at the moment of assay) and not enough emphasis has been placed on potential mechanisms driving symptoms. The field is ready to move past proving “this is a real condition” and to start elucidating the specific relationship of ME/CFS symptoms to neuroinflammation."
Read more
|
|
ME Conference Week 2019 News Update
|
|
The ME Conference Week in May 2019 is building up with participants and delegates from around the world being invited or registering.
Registration for the fourteenth International ME Conference is open - click here.
|
|
Thinking the Future - the Young/EarlyCareer Researchers International Network - is building up momentum.
We already have researchers from four countries planning on attending.
Read more
|
|
|
|
Funding Research and Awareness of ME
|
|
|
This is the 7th consecutive year of fundraising!
The original idea behind Walk for ME was that friends and family of an ME sufferer did a sponsored walk on their behalf, hence the name. Since then, supporters have chosen several other activities too, in their quest to help us raise money for biomedical research.
Walk for ME has had walkers, runners and swimmers across England, Scotland, Wales, Ireland and the Isle of Man as well as in France, Germany, Spain, Malaysia, Australia, New Zealand and on both coasts of America. So far we have raised over £127,952.62 including gift aid. Every penny of which goes towards the search for a cure.
Walk for ME 2019 is again supporting Invest in ME Research. Please visit our website for more information at www.walkforme.co.uk.
If you would like to join the Walk for ME team (and we really hope you will!) you need to follow these steps. They may look complicated but they are actually quite quick once you get started:
1. Go to www.justgiving.com and click on "make your page"
2. Either log in to your justgiving account or click "No - I'm new" to set one up
3. Search for Invest in ME. (You may need to search for Invest in ME as IIME in the search box)
4. Click on personal challenge and follow the online steps
5. Choose your justgiving web address
6. Click on "create your page"
7. Personalise your page. You can say who you are walking for and why you are walking
8. Then go to www.justgiving.com/teams/walkforme2019 and scroll down and click on "Join the team"
9. Select your fundraising page to add it to our team!
10. You can then send your own justgiving address to friends to raise sponsorship. Any target you set on your own page will automatically add to the team target.
|
|
"ME Conference Week now includes a conference for young/early career researchers; a dinner where young researchers can meet more experienced scientists; a two day closed research Colloquium where researchers can share ideas and discuss and plan and collaborate; a researchers' dinner where more discussions can be had; a pre-conference dinner which allows a special gathering of researchers, clinicians, media folk, politicians, ME support representatives,carers and patients to interact; a public international conference; a post-conference dinner which allows researchers and patient groups to discuss further after the main events have finished and plan the next steps; and an annual general meeting for the main European collaborative patient organisation.
A small charity with wonderful supporters has achieved this."
- from Chairman Kathleen McCall's welcome to the conference - http://investinme.org/IIMEC14-chairman-message.shtml
|
|
|
|
|
