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Newsletter September 2019

Invest in ME Research is an independent UK charity campaigning for and facilitating biomedical research into myalgic encephalomyelitis (ME).
More details of the charity are here.

Welcome to our September newsletter.
Norwich Science Festival Week Event
The charity is arranging a public meeting at the Assembly House in Norwich on 25th October 2019 - in the Norwich Science festival week.

The event will include Professor Simon Carding from Quadram Institute giving an update about the research and information about the planned clinical trial at the Centre in Norwich.

The PhD students performing research at Quadram will also be present to answer questions.

 
Additionally, Norfolk and Great Yarmouth CCG will be represented and explaining the new Clinical Fellowship scheme which is being funded by IiMER and Quadram Institute, with the CCG.

The event is free for those who have contacted us in advance to confirm participation. Numbers are limited so please contact the charity at info@investinme.org to be added to the attendee list.

If you are interested in clinical trials for ME or want to hear of the research strategy for ME research at Quadram and how the charity, in partnership, is working to find solutions for ME, then come along to this event and become aware of the development of a Centre of Excellence for ME and high-quality biomedical research and treatment for ME.


Read more...
New Project Funded by IiMER
The intestinal virome and viral immune responses in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients after faecal microbiota transplantation (FMT).

This is the next PhD to be funded by Invest in ME Research, in collaboration with University of East Anglia.

More details here
IiMER Conferences - A Historical Archive
More videos from our past conferences are being released on our web site.

Videos from our first two conferences - #IIMEC1 (from 2006) and #IIMEC2 (from 2007) have now been uploaded.

It is very illuminating to listen to some of the presentations and reflect on what was being said in those early days, and compare them to today. And then look at the porgress that has been made since then, or not.

 
#IIMEC1 videos can be seen here - http://www.investinme.org/IIMEC1.shtml#report

#IIMEC2 videos can be seen here - http://www.investinme.org/IIMEC2.shtml#report
#IIMEC15: A 2020 VISION for ME
SUSTAINING and DEVELOPING the FOUNDATIONS of RESEARCH into ME
The registration for the #IIMEC15 - the 15th International ME Conference on 30th May 2020 is now open.
 
The IiMER Chairman's opening message takes the opportunity to welcome delegates to the conference and mention a few of the things that the charity and its supporters are achieving with their constant efforts to make and maintain progress

We welcome back the NIH to the conference and hope to see many friends again at the event.

Registration for the conference can be made here
Meanwhile we are very pleased to have registered already top researchers from twelve countries across North America, Europe and Australasia for the 10th Biomedical Research into ME Colloquium - #BRMEC10 - in London on 28-29 May 2020.

http://www.investinme.org/BRMEC10.shtml
The Thinking the Future network for young and/or early career investigators was created to international collaboration amongst the next generation of ME researchers and provide support for careers in this field. After successful conferences in London and Washington we are pleased to welcome the Wellcome Trust to next year's TtF2020 conference on 27th May 2020. This will allow some discussion on careers and funding for young investigators.

http://www.investinme.org/TtF-London2020.shtml
Letter to BMJ
IiMER does not usually advertise the business called LP in any shape or form. We view it purely as a pyramid business - unscientific, unregulated, unaccountable.
We refuse to help promote nonsense posing as cures or providing any oxygen of publicity.
We made some statements in the past and left it at that -
http://www.investinme.org/IIMER-Statement-1709-01.shtml
In this increasingly dystopian world that becomes even more bizarre each day the conduct of the BMJ fits like a glove - an organisation ever more irrelevant to real needs of patients.

David Tuller has been looking at how the BMJ has been acting by publicising this.

Despite our stance on junk science and pyramid businesses we are happy to mention David’s latest article which takes on the BMJ and their "ethically bankrupt actions".
Read more -
http://www.virology.ws/2019/08/28/trial-by-error-an-open-letter-to-dr-godlee-about-bmjs-ethically-bankrupt-actions/
EMEA Slides Stuttgart
The slides from the recent presentation from the meeting in Stuttgart organised by EMEA Germany member Fatigatio e.V.by European ME Alliance are now on the EMEA web site.

Click here
Useful Research
Mark Vink has published a paper which should be extremely valuable to employers as well as clinicians

Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies
by Mark Vink 1,* andFriso Vink-Niese 2
https://www.mdpi.com/2075-4418/9/4/124
NIH NANDSC Working Group
The report of the NANDSC Working Group for ME/CFS Research is now online:
https://www.ninds.nih.gov/…/report_of_nands_council_working….

The Working Group presented its report at the meeting of the National Advisory Neurological Disorders and Stroke Council.
To watch the presentation click here  

To learn more about the NANDS Council Working Group, go to: 
https://www.ninds.nih.gov/…/Advisory-C…/ME-CFS-Working-Group

 
Clinical Fellowship Scheme Advert 
The advert for the new Clinical Felloship scheme - jointly funded by IiMER and Quadram Institute - will be placed again by Norfolk and Great Yarmouth CCG.

Despite some good candidates being interviewed in the summer it was felt by all that it would be better to re-advertise to get the correct person for this important initiative.
The new position will allow a GP to become acquainted with ME by working with the QI team investigating ME and the gut microbiome and more on this position will be discussed at the Norwich ME Update event on 25th October.

More details - 
https://quadram.ac.uk/vacancies/funded-gp-fellowship-opportunity/
 
Clinical Council Meetings
The European ME Clinicians Council will meet again soon in London.

Invest in ME Research are planning a 1st International ME Clinicians Conference in London next May and hope to bring US and European clinicians together to agree on common approaches and standards for ME.

The USA ME Clinicians Council recently published a document entitled -
Diagnosing and Treating Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Read more

 
28 EU Marathons for ME
Thanks to Mike Harley for completing his 23rd European marathon for IIMER.
This time in Budapest, Hungary.
 
One can read his story and donate here:
https://buff.ly/337tPVa

 

Supporters

We would like to thank the Peterborough ME Support Group for their amazing gesture in donating £1000 to IiMER.

Thanks to Our Supporters


Thanks again to everyone who has helped promote the work of the charity to raise awareness of ME and funds for biomedical research.

We captured some of the efforts being made throughout September will appear here -

http://www.investinme.org/IIMER-Newslet-190903-fundraisingSep19.shtml
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