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Response to Newsnight item on treatment of long Covid

April 09, 2021

Last night’s edition of Newsnight on BBC2 tackled the issue of treatment for long Covid and drew parallels with treatment options for M.E./CFS.

There are some striking similarities between the symptoms of long Covid and the symptoms of M.E./ CFS. So far, there is no evidence to suggest that they are the same thing. As with all medical conditions, any treatment should be patient-centred and in collaboration with medical professionals.

Through our extensive work with the expert patients, medical profession and the research community in the UK and internationally, we emphatically refute the view that exercise leads to recovery for people with M.E.; this is reflected in the evidence carefully considered by The National Institute for Health and Care Excellence (NICE) in producing its new draft guideline for M.E., advising against physical activity as a cure.

Our own research has shown that, even when people are supported by an M.E. specialist, only one in 10 reported that graded exercise therapy (GET) helped manage symptoms, while nearly half reported a worsening effect. Cognitive behavioural therapy (CBT) makes no difference in almost half of cases and had a worsening effect for one in five.

We agree with Dr Charles Shepherd of the ME Association who was also featured in the programme. He said: “Our experience with M.E. is that exercise can actually make people worse rather than better. There is a group of people with long Covid persisting more than three months who are not getting better and for whom a management plan which is much more consistent with what we do in the M.E./CFS community is going to be far more appropriate.”

At Action for M.E. we are working hard to ensure that our community learns from the research currently taking place into long Covid, but we also want those living with long Covid to benefit from the many years’ experience our community has in managing symptoms. This is why we joined the Long Covid Alliance and we are working collaboratively with people with M.E., other charities, scientists and clinicians to better understand M.E./CFS and long Covid. Our ultimate aim is to find effective treatments for M.E./CFS through research such as DecodeME and to empower people with M.E. to fulfil their potential and secure the care and support they need.