ME CFS FM Updates

Latest news from researchers and ME/CFS/FM groups worldwide.

This was preceded by a day for young and new researchers to present and discuss their work, and then a 2-day colloquium for researchers from around the world to gather and discuss their current work in the field.
These unique meetings should result in sharing of ideas and collaboration.
The conference held in Westminster in the shadow of a scaffold-wrapped Big Ben was opened by Dr Ian Gibson.
He formerly acknowledged the sterling work of Invest in ME Research, who have always devoted so much time and energy to organising these meetings over the past 12 years, in a purely voluntary capacity. Ian felt that there was surely an “eureka moment” coming as the research progresses so positively in this illness. Many countries were represented at these meetings.
13th Invest in ME Research International ME Conference - London June 2018 Report by
Dr Ros Vallings and Sarah Dalziel
To read the full report see   IIMEC13 Conference ReportRVSD 2018.pdf
 
  1. FM Update
    A recent research paper suggests Tai Chi type exercise can help with FM pain. In ME/CFS/FM it seems important to do movements, rather than what we would usually call exercise which increases the heart rate. By moving slowly and keeping the heart rate down, movement can strengthen the muscles without causing a relapse. But as in all things, it depends upon the persons level of ability and we all respond differently so no one size fits all. When starting something new caution is advised. But the results of the study are very encouraging. http://www.bbc.com/news/health-43485851
    26/3/18
  2. Open Medicine Foundation
    A video from the Open Medicine Foundation explaining where they are at re - research. Very good and very informative. Ron Davis who heads this Foundation has a son who is severly ill with ME/CFS and is working to find what causes ME/CFS and to find a cure. Linda Tannenbaum is the CEO of the Foundation and has a daughter with ME/CFS. https://www.youtube.com/watch?v=Uul2HCWhIF4
    11/1/18
  3. IOM ME CFS Report
    A very informative report commissioned by the Institute of Medicine in the USA. Recommending that more research was needed into ME/CFS and saying the recommended treatments to date for these illnesses - Cognitative Behavioural Therapy and Graded Exercise Therapy could endanger the health of patients and were not the best therapies to offer. https://www.ncbi.nlm.nih.gov/books/NBK274235/
    2017
  4. ME more debilitating than MS
    News on a research paper showing that ME/CFS is more debilitating than many of the illnesses we know and accept as debilitating. Here it is compared to the level of disability in Mulitple Sclerosis. http://www.meassociation.org.uk/2018/03/me-association-press-release-people-with-m-e-measurably-more-disabled-than-people-with-multiple-sclerosis-16-march-2018/
    15/3/18
  5. Video from Open Medicine Foundation
    The Open Medicine Foundation are working on innovative technologies and research to unravel the mystery of ME/CFS/FM with ground breaking initiatives. Video at http://bit.ly/CRCUpdate2
    20/4/2018
  6. International ME Awareness Day - May 12th.
    Interntional ME Awareness Day is May 12. Millions Missing with MEAction are organising Visibilty Actions world wide to demonstrate that so many are missing from society, schools, employment, families because of ME/CFS/FM. To symbolise the number shoes will be laid out with photographs attached to show those who are unable to participate in these places and to raise awareness of the many it affects. To find out more go to https://www.meaction.net/tag/millionsmissing/
  7. May 12th
    Millions Missing Auckland's ME/CFS Display above. It was a hugely successful event and many stopped to talk and ask questions. The level of knowledge about the illness seems low in the community and it provided a chance to engage with the community and health professionals who stopped to read the messages. Most were shocked to know how many were affected, how serious the condition was, how little help was available and the lack of teaching on this subject in medical schools.
    12/05/18
  8. New: ME/CFS Clinical and Research Guide – 2019 Edition!
    The 11th edition of our clinical and research guide is a must-have for anyone who has been affected by – or has an interest in – ME/CFS. (PVS) https://www.meassociation.org.uk/shop/books/mecfspvfs-an-exploration-of-the-key-clinical-issues/ It has been written by ME Association medical adviser, Dr Charles Shepherd, and consultant neurologist, Dr Abhijit Chaudhuri, from the Essex Centre for Neurosciences.
    2019