Russell Fleming, Content Manager, ME Association
BBC Newsnight on Thursday 8th April entered controversial territory when it discussed the treatment of Long Covid and ME/CFS. The programme focused on the use of incremental and graded exercise programmes, which as we know are something that many people with ME/CFS find impossible to accomplish without harm.
While the broadcast was interesting, Dr Shepherd (Hon. Medical Adviser to the ME Association) had briefed the producers and pre-recoded a comprehensive review of activity and energy management in both ME/CFS and Long Covid. However, only a very small part of his contribution to the discussion was actually broadcast.
The ME Association has concerns about how Newsnight covered this controversy and how it failed to balance the discussion as well as it should have done. We also objected to the inappropriate Long Covid survey results and the way in which they were used to support the claims being made about exercise therapy in both ME/CFS and Long Covid.
As a result, we sent a letter of complaint to the BBC following the broadcast, and our concerns are now being investigated.
Newsnight raised issues that have been discussed more widely by Professor Paul Garner (who was featured in the show) and others who support graded exercise therapy.
These discussions are continuing, for example with George Monbiot in the Guardian and in a video he did for DDN News, and in letters from Paul Garner and Michael Sharpe published by the Guardian in response to Monbiot’s article.
With this in mind, and in light of concerns about the delay in publication of the NICE clinical guideline for ME/CFS, we felt it was time that the ME Association issued a statement that again explains our position on the use of exercise in both ME/CFS and Long Covid.
The statement has been made available as a separate blog, which can be found here.
Professor Paul Garner
Paul Garner appeared in the recent Newsnight programme and has been speaking out recently about his recovery from Long Covid and the use of intense exercise. He approached the ME Association last year seeking advice about the problems he was having at that time managing the effects of Long Covid following Covid-19 infection.
Dr Shepherd helped Paul to learn the necessity of convalescence, of pacing activities, and trying to avoid symptom exacerbation and the ‘boom and bust’ scenario of doing too much too soon. Paul adopted these techniques and found them helpful, until such time as he felt he could do more.
Pacing is not easy. We all want to force recovery and return to the lives we have lived before an infection led to Long Covid or to ME/CFS. It is frustrating and can feel like we are doing nothing, which can then affect our mental health. But it is necessary, and we all need to learn how to accept, adapt, and accommodate chronic illness the best way that we can.
Paul Garner BMJ Blogs:
- Covid-19 and fatigue – a game of snakes and ladders | 20 May 2020
- “A post-viral tsunami is hitting our health services, yet in the UK it doesn’t even seem to be on the national agenda.” | 25 June 2020
- “Don’t try to dominate this virus, accommodate it!” | 08 September 2020
“I could exercise myself out of this state of lethargy. I was so wrong. After twelve hours, I was completely floored. I was more exhausted than ever and could not get out of bed for three days. The sweats came back. The tinnitus. The foggy head. The headaches.
“I am sick of you high-performing medics,” a friend and specialist in rehabilitation said to me. “Don’t expect to be able to do what you did before.” I listened.
“After being confined to the house for seven days, I went for my first gentle walk. It was effortless, and the sun was shining. I extended it a little further than I had intended, a total of 2 miles.
“What a mistake. The next day, the covid-19 fatigue was back with a vengeance, and I was in bed for two days.”
Paul Garner, May 2020
Paul wrote several opinion pieces about his progress for the British Medical Journal (above and below). In January, his article surprised many in the Long Covid and ME/CFS communities because it detracted visibly from his previous publications. The ME Association had not been in contact with Paul, so it came as a surprise to us as well.
He had gone to Norway and consulted with and found benefit from what seems to have amounted to neuro-linguistic programming and might have been linked to the Lightning Process – a pseudoscientific method that the ME Association does not recommend.
While we are pleased to see that Paul considers himself recovered, we cannot condone the way he now seems to be saying that if this approach and his vigorous exercise workouts worked for him then they can work for anyone regardless of how sick they might be. The implication here is that if individuals don’t adopt his methods then they are at fault for not getting better which is abhorrent.
As a scientist, we feel that Paul should know better than to comment publicly on pseudoscientific methods and on intense physical exercise that is not appropriate when people are still finding their way with Long Covid let alone with ME/CFS. His call for more research on people who believe themselves to be recovered is something we would support, but it has to be rigorous research using longitudinal studies and not research that is reliant on unsubstantiated personal testimonies.
The use of vigorous ‘military’ training methods is clearly not suitable for people who might barely be able to brush their teeth, dress themselves, walk unaided or as so affected that they are housebound. Similarly, even people who can manage to work in a limited way, often do not have the strength to do more and spend their free-time having to rest and recuperate.
Paul is only one person and while he may have found allies in those who still endorse graded exercise therapy – the authors of the PACE Trial for example – we stand by our recommendations that GET should not be recommended for Long Covid or ME/CFS.
The ME Association will continue working with the Long Covid community and sharing our expertise in managing ME/CFS and promoting the safe and effective management technique known as pacing.
“I suspect people recovering at home and their doctors may not recognise this, and thus do not realise it may be exertion – both mental and physical – that is causing their symptoms to return. Without instituting careful pacing, people suffer, and their recovery is delayed.
“These people are trying to navigate an illness that bites back like a demon if you overdo it, batters you physically and mentally, and leads you to doubt your own sanity. Pushing themselves because they have no choice will lead to further illness, suffering, and distress. They are being left behind.
“This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. We have messed up before, let’s not do it again with long term covid-19 illness.”
Paul Garner, June 2020