I watched with horror and dismay the very biased item on Long Covid on Newsnight. The reporter had clearly decided to base the story on one man's claim that his recovery from long Covid was achieved through overcoming his fear of exercise and by changing his thoughts. To base a story on a single case and that individual's interpretation is completely unscientific. It is just as likely that he was recovering anyway by the time he tried that approach. It certainly seemed so from his tweets.
Post viral fatigue is a well recognised phenomenon following many viral infections. There has not been time for research to discover the best way of treating people with long Covid. There are already reports of some people gradually getting better, and others with ongoing problems due to organ damage and the after effects of intensive care treatment.
It is the group in between, with no detectable organ damage, but whose symptoms don't resolve in a few months or a year or two as Paul Garner's did, and who have the ongoing problem of post exertional malaise whenever they try to increase their activity we need to consider here, and these are the ones Dr Shepherd was referring to when he drew parallels with ME/CFS.
NICE published a draft ME/CFS guideline last November. Their detailed evidence review of multiple trials of graded exercise and CBT as treatments for ME/CFS found all studies were low or very low quality. None of the trials, including the PACE trial referred to, showed any significant objective or long term benefit from either treatment. The expert committee therefore recommended neither method be used to treat ME/CFS.
The so called 'controversy' is a result of the people who did those trials refusing to accept that the slight short term 'improvement' on subjective questionnaires was not either sustained or supported by objective evidence and was no better than placebo effect. Patient objections to these treatments are based on sound scientific review of the evidence, and the fact that large patient surveys show that many patients with ME/CFS get much sicker when they follow GET programs.
As we have seen, there is now clear evidence that the CBT/GET approach has been shown not to be effective treatment for those with ME/CFS like symptoms that include post exertional malaise. This may well be the case with a subgroup with Long covid too.
Nobody knows yet whether exercise based treatment is appropriate for everyone with long Covid. The doctor featured who claimed exercise is helping her patients has not, as far as I know based this on any research. At this early stage some of her patients will be well on the road to recovery anyway, regardless of rehabilitation treatments, and others with lung damage may be helped by her treatment. Others may not, and some may be harmed.
I understand Dr Shepherd's interview lasted about 15 minutes, in which he explained the basis of his comments about ME/CFS organisations being able to help some people with Long covid. It was highly irresponsible of the BBC to pretend to 'balance' by taking clips so short as to be meaningless from Dr Shepherd's interview, immediately following the second one with Prof Garner's completely unfounded 'explanation' of his recovery.
The mischaracterisation of hundreds of thousands of sick people with ME/CFS as 'adverse advocacy groups' who want to 'shut down' good research and saying you should only listen to those who have recovered, is gaslighting of the worst sort. I am shocked that the BBC allowed that comment without any chance for anyone to rebut it.
Please provide an opportunity for people with long Covid who have not recovered to put their perspective, and show the whole of Dr Shepherd's interview on a future program to redress the balance.
This is not something to be taken lightly. That broadcast will have been watched by millions who will now be telling their family members, employees and patients with long Covid that the 'experts' on the BBC report has told them that they need to stop being afraid to exercise and to do graded exercise programs. This risks making many many thousands much sicker. It will also make it harder for people with ME/CFS to get the help, understanding and support they need. That is highly irresponsible of the BBC. Shame on you.