Category Archives: News

ME Association Press Release: People with M.E. ‘measurably more disabled’ than people with Multiple Sclerosis | 16 March 2018

“For people with ME/CFS, this is a very important piece of research involving clinical data collected by the ME Biobank.” Dr Charles Shepherd.

Liverpool Echo: Disease like ‘living death’ means mum can only see toddler son a few minutes a day | 11 March 2018

‘He just wants to be with his mum – I’m so full of guilt. I’m supposed to be his mum and I can’t even see him’.

The CFS/ME Research Collaborative (CMRC) Announces Major Change in Policy and New Deputy Chair | 07 March 2018

The CMRC refocuses its research strategy, welcomes individuals with M.E. onto its executive, and Professor Chris Ponting replaces Professor Esther Crawley as Deputy Chair.

Jersey Evening Post: ‘It’s like having a battery that won’t fully charge…’ Gary Burgess | 06 March 2018

ITV journalist Gary Burgess tells David Edbrooke how being diagnosed with M.E. drove him to the depths of despair.

ME Association Summary Research Review: Vision Impairment in M.E. | 05 March 2018

A research group at the University of Leicester has recently reported the results of a new study examining visual impairment in M.E.

ME Association Website Survey: Pain Management in M.E. | 05 March 2018

We are using this month’s website survey to find out what people with M.E. find to be the two most effective forms of pain relief.

Peebles Hogmanay Torchlight Procession nets over £1,200 for charity | 05 March 2018

The money will be split between three charities, the ME Association, Action for ME and Smile for ME.

The Alliance Neurological Programme and Neurological Alliance of Scotland – Lived Experience of Neurological Conditions Survey | 04 March 2018

This survey is for all conditions which present with recognisably neurological symptoms, whether or not these are accepted or catered for in current neurological services.

Forward ME – Discussion of Green Paper on Mental Health for Children and NICE Stakeholder Workshop | 03 March 2018

  Forward ME Minutes of the meeting held in Residence 1 House of Lords Wednesday 7 February 2018 starting 2pm Present: Countess of Mar (Chairman), Dr Charles Shepherd (ME Association),…

ME Association February Summary of ME/CFS Published Research | 28 February 2018

We have updated our Index to Published ME/CFS Research and here provide an overview of the research that has been published during the month of February.

Feedback Request: PIP Medical Assessments – Ahead of meeting tomorrow with the CMO from Capita at the House of Lords | 27 February 2018

We want to hear from anyone who has a recent example of a medical assessor expressing inaccurate or even sceptical/hostile opinions about ME/CFS.

All Party Parliamentary Group (APPG) on Disability – Meeting at House of Lords to discuss disability benefits | 23 February 2018

  All Party Parliamentary Group (APPG) on Disability  Summary of a meeting at the House of Lords on Wednesday 21st February 2018 By Dr Charles Shepherd, Hon. Medical Adviser, ME…

Fundraising Feature: From bed to Ben Nevis – Emma’s 20-year recovery from severe M.E. | 22 February 2018

Emma Jenkins has had M.E. for around 20 years. She tells us that her journey of recovery is far from over, but she’s much better than she was. Hers is another inspiring tale of patience, courage, and a determination not to be beaten.

Former businesswoman hosts Valentine dance for people who might otherwise be alone | 21 February 2018

Supporters who twirled the evening away during a Valentine dance at the Heacham public hall on Saturday night fulfilled a dream for the event’s organiser.

Government-funded ME/CFS trial ‘one of greatest medical scandals of 21st century’ | 20 February 2018

A controversial medical trial part-funded by the Department of Work of Pensions will emerge as “one of the greatest medical scandals of the 21st century” an MP today claimed.

NHS Personal Health Budgets and NHS England Survey | 20 February 2018

We review what we know of NHS Personal Health Budgets and ask whether people with M.E. are making use of what appears to be a very useful resource.

Fundraising Feature: Can we help Lauren make an exhibition for M.E.? | 20 February 2018

A HUGE thank you to everyone who has kindly supported Lauren Childs’s call for knitted squares for her All about ME Knitathon project. Her aim now is to exhibit the blankets she has been making…

ME Association Index of Published ME/CFS Research | 19 February 2018

This is an A-Z index of the most important research studies (and selected key documents and articles), listed by subject matter, that have been published on ME/CFS.

Pernicious Anaemia: symptoms, diagnosis, Vitamin B12, ME/CFS and the NICE guideline review | 16 February 2018

There is an overlap in symptom presentation between Pernicious Anaemia and M.E. and the lack of routine testing in the current NICE guideline for ME/CFS has now been challenged.

Stanford Scope: Exercise elevates blood signature difference between people with, without ME/CFS | 16 February 2018

A new study suggests that a blood test following exercise may be a very good way to differentiate between people who have ME/CFS and people who don’t.

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