Tony Britton, Fundraising and PR Manager, ME Association
This has come out at such an important time – the new Natalie Boulton/Wellcome Trust video on pacing and activity management.
It's a free-to-watch movie, with a gentle sound track and a pause button that give viewers plenty of time to read the slides.
It contains interviews with the people who really know what it's all about – two patients at either end of the level of severity.
There's also expert commentary from: MEA medical adviser Dr Charles Shepherd, co-principal investigator with the Cure-ME team at the London School of Hygiene and Tropical Medicine Dr Luis Nacul, Professors Mark VanNess and Todd Davenport from the Workwell Foundation in the United States and Dr Christopher Snell, who used to chair the US Federal Government's Advisory Committee on the illness.
The video gives real food for thought in language we can all understand. It's aimed at anybody who wants to go down the pacing and activity management route or who needs a pacing refresher.
And there's a neat little section on what cardiopulmonary exercise testing demonstrates and how people can make use of activity monitoring devices if they find this approach helpful.
Dr Shepherd recommends viewing of the 16-minute video and says:
“It's arrived at such an important time – coinciding with the launch of the draft NICE guideline and the preparation of the Long COVID guideline.
“I hope the latter group take note – because this information will also be of great help to people with Long COVID.”
Our verdict: watch it, and probably more than once, so you can fix the knowledge in your brain.
- The video is one of a series on important ME/CFS-related topics called ‘Dialogues for a Neglected Illness' that have been made by Natalie Boulton and Josh Biggs with the support of an award from The Wellcome Public Engagement Fund.
The ME Association
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