A very large genetic study into ME/CFS.
The ME/CFS Biomedical Partnership are asking for help.  Sign up on the website, to indicate if you want to hear about the study, and whether you want to take part.  The FAQs page answers many questions, under several topics - Science/Research; Recruitment/Taking Part; Funding; The Partnership; and Public & Patient Involvement.
ME/CFS Biomedical Partnership: Genetics and Biomarkers is a partnership of researchers, people with ME/CFS, carers and the public.

Early in 2020, the partnership will make a grant application to the Medical Research Council and the National Institute for Health Research for a very large genetic study into ME/CFS known as a genome-wide association study.
The project will be led by Prof Chris Ponting at the University of Edinburgh in partnership with the UK ME/CFS Biobank at the London School of Hygiene & Tropical Medicine.

The study will analyse DNA from the saliva of 20,000 ME/CFS patients to see whether ME/CFS is partly genetic and if so, what causes it. The study should help us understand the disease and find treatments.

The ME/CFS Biomedical Partnership Patient and Public Involvement (PPI) Steering Group is made up of people representing groups or networks from the ME/CFS community, including Sonya Chowdhury of Action for ME (AfME), Dr Charles Shepherd of the ME Association (MEA), and the Countess of Mar of Forward-ME.

Find out more -
AfME and the MEA both recently gave further explanations, and the MEA January monthly survey asks -  would you be willing to take part in research that will investigate the genetics of M.E.?

Two recent useful explanatory blogs, both with comments and responses -
• Trial By Error: The UK’s Proposed Genetics Study, By David Tuller, DrPH.
• Sign up! Your support could help win funding for a game-changing ME/CFS study, By Simon McGrath.

Further background information can be found from the AfME article “ME/CFS Biomedical Partnership”, plus the Forward-ME six page leaflet “The ME/CFS Biomedical Partnership: Genetics and Biomarkers Genome-wide association study: Questions & Answers”, and the MEA article “ME/CFS Biomedical Partnership PPI Steering Group Update”.

•  Action for ME  •  DecodeME  
•  Forward ME  •  M.E. Association 
•  Research 

Please invite your MP to the meeting. 
Following the well-attended Westminster Hall and House of Commons debates that were secured by Carol Monaghan MP in the last session of parliament, and the interest this has created in the various problems faced by people with ME, Carol Monaghan has decided that the time is right to re-establish the APPG on M.E.  Dr Charles Shepherd, Hon. Medical Adviser, ME Association, met Carol Monaghan following the election and it was decided to hold an inaugural APPG meeting as soon as possible.  This will be on Tuesday 14th January.
Contact information for all Worcestershire MPs is on our website.  Your MP will be able to obtain times, venue, etc from Carol Monaghan MP.  If they are unable to attend, they can still register their interest by emailing Carol Monaghan’s office.
Background:

• 2019 Parliamentary briefing paper on key issues facing people with ME
• Blog post: Commons M.E. Debate, 24 January. Transcripts, YouTube and Reports.

 
The ME Association and Action for ME give further details on their websites, including template email examples for your use.

Join us at our social gatherings in 2020.
All people with M.E., CFS, FMS, and their carers, friends and relatives, are welcome at all Worcestershire M.E. Social Group gatherings - please join us at whichever suits you.  Join us for a bite to eat, or just a cuppa and chat.
All 2020 Social Gatherings are shown on our meetings page.  We have Group Lunches from January to November and Afternoon Cafe Meetings from May to August, at various locations throughout Worcestershire.

For your convenience, download our Group Handout, containing 2020 Social Gatherings dates and venues.
 
ME Awareness Week in May - Monday May 11 to Sunday May 17. 
Join us at our Afternoon Café Meeting on Thursday 14 May, at the Olive Grove Café (David's Garden Centre by Cherry Lane, Martin Hussingtree, Ash Lane, Worcester, WR3 8TB)

Look out for the #Millions Missing Birmingham announcements.  Last year held on Friday 10 May in St Philip’s Cathedral Square, Birmingham.
 
New NICE Guideline on ME/CFS is delayed until the end of 2020.
The publication date will be 9 December 2020.  Last month, the ME Association (MEA) published a letter received from National Institute of Health and Care Excellence (NICE) announcing this date.

The MEA gives detailed information about the NICE Clinical Guideline review.
For more information about the guideline review, visit the NICE section of the ME Association website.