Back in 2019 we became aware of We Are Undefeatable, a campaign led by 15 partner charities and supported by Sport England, which aims to inspire and support people living with long term conditions to be active in whatever way works for them.
Whilst as physiotherapists we completely support the message that activity and exercise is beneficial for a range of long term health conditions, we were obviously keen that the campaign message wasn’t generalised to people with ME. In 2019 we met with the team and were pleased with how receptive they were of our concerns.
Since our meeting, the campaign team has been working on research looking at the benefits and risks of physical activity for people with long term conditions which has just been published. We are pleased to see that the journal article and accompanying material has the following disclaimer;
"The list of medical conditions covered by this consensus statement is not exhaustive. For instance, Chronic Fatigue Syndrome/ME and Long COVID were excluded from this study as evidence regarding the risks of physical activity in these conditions is evolving. Existing guidance should be followed for those conditions."
We are particularly pleased to see that the journal article references further research into physical activity for conditions not covered in the review and the need to report risk and adverse effects in all physical activity studies of people living with long term conditions. We totally agree!
It has been a pleasure to work with the team and we have been really impressed by their collaborative approach. We hope to continue to work with the #WeAreUndefeatable team going forwards to ensure the implications of physical activity for both people with ME and Long Covid are reflected in their campaign.
The statement is buried in the discussion so it's very easy to miss unless someone reads it very well. I struggled to find it even though I knew it was there. I feel like it should have been in the main text as a contraindication. I think many will see the "Benefits outweigh the risks" and statements like "The fear of exacerbating symptoms and causing adverse events is a persuasive barrier to physical activity in this population." and apply it without question. It also says "chronic fatigue syndrome", not "chronic fatigue syndrome/ME".