Thank you for helping with our formal response to NICE!
The ME Association has submitted its formal response to NICE as part of the stakeholder consultation for the new ME/CFS clinical guideline.
pacing
BMJ: NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance
Graded exercise therapy should no longer be offered for the treatment of ME/CFS, says NICE in its draft clinical guidelines.
ME Association Statement on the NICE clinical guideline for ME/CFS and the NICE guideline for Post/Long Covid-19
In this statement we explain why we have been working to help people with Post/Long Covid and how these syndromes overlap with ME/CFS.
Paul Garner on long haul covid-19—Don’t try to dominate this virus, accommodate it!
Paul Garner continues his BMJ Blog, explaining his experiences with Long-Covid and calls for appropriate guidance and support.
Forward ME Letter re: Post-Covid/ME/CFS Management with Caution about Exercise
This letter is now available for anyone to download and share to help raise awareness of Post-Covid management and the similarities with M.E.
NHS England & Department of Health and Social Care Dismiss Concerns about Graded Exercise and Post-Covid Illness Management
The responses from Chris Whitty at the Department of Health and Social Care and Stephen Powis at NHS England to ME Association concerns, were very disappointing.
The Times: Warning over conflicting medical advice to coronavirus recovery patients
“The NHS is urging people to exercise at a time when many, just like people with post-viral ME, need to rest, recuperate and pace themselves,” Countess of Mar.
Severe ME: Why is improvement subject to such harsh judgement and not celebrated?
“Having M.E. robs us of just about everything, but not the ability to be supportive or kind. We are a community, and it should be us against the world not us against each other.”
Clinician’s Letter to NICE Results in Statement on Graded Exercise for Post-Covid-Syndrome
In response to a letter from Drs. Shepherd and Weir, NICE produced a statement about graded exercise therapy for Post-Covid management.
BBC Spotlight: Covid-19 and Post-Viral Fatigue Syndrome with Dr Charles Shepherd
The uncertainty surrounding recovery from Covid-19 is something that we hope is being discussed within the NHS and Government, but pacing and self-management remain the only options for many people.
“A post-viral tsunami is hitting our health services, yet in the UK it doesn’t even seem to be on the national agenda.”
Paul Garner, Professor at the Liverpool School of Tropical Medicine, talks about those who have not recovered from Covid-19.
Physiotherapists taught three little words for the care of people with Post-Viral Fatigue Syndrome | 3 June 2020
Rest, Nutrition and Sleep – should be new norm working with patients with PVFS, physios urged.
British Medical Journal Opinion: Covid-19 and fatigue – a game of snakes and ladders | 20 May 2020
“I am reading materials about pacing and CFS/ME and listening to the CFS/ME community.” Prof. Paul Garner.
ME Awareness: The Lost Years: Missionary forced to give up vocation to do battle with ME | 18 May 2020
“I guess my Christian faith sustains me even though a lot of the time I feel like I’m just holding on with my fingertips.”
ME Awareness: “ME is a cruel illness and whether we have it mild or severe, we all still suffer,” by Naomi Gilchrist | 15 May 2020
“I’ve tried so many different methods to manage my symptoms. Medication helps to a degree alongside self-management techniques.”
ME Awareness: ME Symptoms and Management by Ann Jones | 14 May 2020
“Managing energy is the most difficult but important factor. My advice would be to try to establish a routine to get the best balance between sleep, activity and rest.”
New MEA Guide: ME/CFS The Ten Key Aspects of Management | 05 February 2020
We have listened to your feedback and can now provide an updated guide to the most important aspects of management.
The picture that hides illness that can make young woman feel like she has run a marathon after two bottles of wine | 18 December 2019
Catherine Allen, 22, was initially told she was just tired like most teenagers until she was diagnosed
The Guardian: ME and the perils of internet activism | 29 July 2019
This latest article continues to shine an uncritical spotlight on an issue that we really don’t think stands up to scrutiny…
ME Association cited in Nursing Times review of new pacing DVD and booklet
The ME Association and our medical adviser, Dr Charles Shepherd, …
ME Association cited in Nursing Times review of new pacing DVD and booklet Read More »