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M.E. and Long Covid discussed on Times Radio

September 11, 2021

Last night, our Chief Executive Sonya Chowdhury and our Medical Adviser Dr David Strain appeared on Kait Borsay’s Times Radio Show to discuss M.E. and Long Covid. A recording of the show is here (listen from 1:06-1:32).

The conversation covered the similarities and differences between M.E. and Long Covid, whether people are being diagnosed with M.E. after Covid-19 and the data gaps that make it difficult to get a good picture.

Speaking about why people with Long Covid might not want to be linked to M.E. Dr Strain said, “I think a big part of this is the stigma that has hung around M.E. for decades. As we’ve done more research into it, we’ve seen significant physical differences in people with M.E./CFS but the stigma is still there. There are still some doctors of my generation and before that were taught that this [M.E.] is not a real physical condition and there needs to be a massive re-education there.”

Dr Asad Khan talked movingly about how it feels to have Long Covid, telling the presenter that he struggled to tolerate light or sound, and that the sound of rustling leaves caused him physical pain. Dr Khan was working as a respiratory consultant on the Covid frontline and contracted Covid at work.

On the topic of the difficulty of getting a diagnosis, Sonya said, “What we need to do is ensure that people with M.E. and those with Long Covid – whether it’s the same thing or a different thing, whether they have one or they have both – everybody needs to have the understanding and be treated with respect and be listened to because people are suffering in extreme proportions and that’s not acceptable.”

At the end of the segment, she said, “We’re seeing money rightly going into studying Long Covid…but we need to ensure that we leverage that so that we get better understanding for other post-viral illnesses like M.E. This is the greatest scientific opportunity that we have to better understand M.E. and every single person suffering with M.E., their families, people with Long Covid, people with other post-viral illnesses deserve better and the government has to step up and redress the paucity of research that we’ve got into those other illnesses.”

Dr Strain remained for the second part of the discussion (1:37-1:50) and was joined by the founder of Long Covid Support, Claire Hastie, and Monique Jackson, who has Long Covid and charts her journey on Instagram with the handle @_coronadiary.