Tag: pacing

The ME Association has submitted its formal response to NICE as part of the stakeholder consultation for the new ME/CFS clinical guideline.

Graded exercise therapy should no longer be offered for the treatment of ME/CFS, says NICE in its draft clinical guidelines.

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 continues his BMJ Blog, explaining his experiences with Long-Covid and calls for appropriate guidance and support.

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.

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 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.

“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.”

In response to a letter from Drs. Shepherd and Weir, NICE produced a statement about graded exercise therapy for Post-Covid management.

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.

Paul Garner, Professor at the Liverpool School of Tropical Medicine, talks about those who have not recovered from Covid-19.

Rest, Nutrition and Sleep – should be new norm working with patients with PVFS, physios urged.

“I am reading materials about pacing and CFS/ME and listening to the CFS/ME community.” Prof. Paul Garner.

“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.”

“I’ve tried so many different methods to manage my symptoms. Medication helps to a degree alongside self-management techniques.”

“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.”

We have listened to your feedback and can now provide an updated guide to the most important aspects of management.

Catherine Allen, 22, was initially told she was just tired like most teenagers until she was diagnosed

This latest article continues to shine an uncritical spotlight on an issue that we really don’t think stands up to scrutiny…

The ME Association and our medical adviser, Dr Charles Shepherd, are both cited in a Nursing Times review this week – which looks at a new DVD and booklet package produced by the Shropshire Enablement Team at Telford and Wrekin Primary Care Trust to promote the use of pacing as a symptom control strategy for […]