April 20, 2018 50 pages, packed full of interesting stories, news, research, campaigns, fundraising and medical information. There is nothing quite like ME Essential!

‘I mourn the life Mag could have led. Missing her has only just begun.’ A Personal Tribute to Mag Friel by Marion Michell | 19 April 2018

April 19, 2018 Marion Michell talks about her friend Meg, who took her own life after a long battle with severe M.E.

ME Awareness Week – Events Guide | 19 April 2018

April 19, 2018 Please let us know what events you are hosting for ME Awareness Week (7th – 13th May), and we’ll feature them on our website and social media.

Liverpool Echo: Devastating ME leaves teen girl “unable to leave the house” | 16 April 2018

April 16, 2018 Rosie first suffered ME symptoms at the age of nine when she contracted a viral infection, but failed to recover from it.

Huffington Post: I Am Stuck In The Prison That Is ME | 13 April 2018

April 13, 2018 Have you ever laid in bed and felt so ill that you truly thought you were going to die?

The countdown to ME Awareness Week begins today and we’re focusing on issues relating to work and to education | 12 April 2018

April 12, 2018 The ME Association is going BLUE for ME Awareness Week 2018 and we're also focusing on issues relating to employment and education.

Advertising Standards Uphold Complaint Against Gupta Programme for ME/CFS and Fibromyalgia | 11 April 2018

April 11, 2018 The ASA has today upheld a complaint on three issues relating to claims made by the Gupta Programme in relation to ME/CFS and Fibromyalgia.

ME Association Monthly Summary of ME/CFS Published Research | 09 April 2018

April 9, 2018 The monthly summary of ME/CFS research publications for March 2018.

Forward ME to Science Media Centre ‘Retract and replace your factsheet on CFS/ME’ | 05 April 2018

April 5, 2018 The Countess of Mar writes on behalf of Forward ME to the Science Media Centre asking for a retraction of inaccuracies in their 'factsheet' on ME/CFS.

‘Bed-bound and in unimaginable pain, watching my daughter waste away and die from ME was torture’ | 02 April 2018

April 2, 2018 Merryn Crofts died on May 23 last year, 10 days after her 21st birthday.

Trinity College: New research network will bolster our understanding of Chronic Fatigue Syndrome | 31 March 2018

March 31, 2018 There are substantial gaps in our knowledge of the impact of this complex disease, but the new ‘European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome mission is to address these.

We need your help to exhibit the ME Knitathon in Coventry Cathedral during ME Awareness Week | 29 March 2018

March 29, 2018 Lauren hopes to display the completed blankets in Coventry Cathedral during ME Awareness Week before donating them to people with severe M.E.

The GETSET Trial: Letters to The Lancet and a response from the authors | 26 March 2018

March 26, 2018 A total of five letters have now appeared in the Lancet critiquing elements of the GETSET trial, and the authors have now issued a response to all of them.

Forward ME Letter to The Times: Patients with ME/CFS ‘are not simply “deconditioned” as claimed by many psychiatrists’ | 23 March 2018

March 23, 2018 “Forced exercise above very low levels characteristically incapacitates most patients.”

ME Association Press Release: Reanalysis of the PACE trial finds impressive claims are ‘not statistically reliable’ | 22 March 2018

March 22, 2018 “The message is clear – CBT and GET are not effective ways of treating a serious neuroimmune disease. The sooner this message gets across to health professionals the better.”

Frontiers Press Release: Chronic fatigue syndrome possibly explained by lower levels of key thyroid hormones | 20 March 2018

March 20, 2018 Dr Shepherd: 'This new research demonstrates a defect in thyroid hormone activity rather than actual thyroid gland disease.'

The BACME Conference 2018: A summary report from Joan Crawford of Chester MESH | 16 March 2018

March 16, 2018 Members of the South Sefton ME/CFS Support Group and Chester MESH were were able to hand out leaflets and copies of the ME Association guide to clinical issues to attendees.

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

March 16, 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

March 11, 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

March 7, 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

March 6, 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

March 5, 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

March 5, 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

March 5, 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

March 4, 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

March 3, 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 Monthly Summary of ME/CFS Published Research | 28 February 2018

February 28, 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

February 27, 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

February 23, 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

February 22, 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

February 21, 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.