long-covid

By David Tuller, DrPH

Professor Paul Garner, an infectious disease doctor at the Liverpool School of Tropical Medicine, has had a rough time with long-Covid. He has written about his experiences in a series of compelling blog posts on BMJ’s site. At first, he bonded with members of the ME/CFS community and expressed shock at the shoddy treatment these patients have experienced for years. He even invited me to give a presentation to his research group on the discredited PACE trial, which I was pleased to do.

This week–around nine months after he first contracted Covid-19–he reported in a new BMJ blog that he is fully recovered. Moreover, he claims to have recovered solely through the effect of positive thinking. Once he began believing he could get better and turned off all the negative messaging from other patients, he went to a military-style training exercise and felt great–in tip-top shape. And that was it. He was recovered.

It is uncomfortable to write critically about someone’s illness journey. But when a perceived expert posits his recovery story as a universal truth despite the lack of any scientific basis for doing so, and when he makes this claim in a major medical journal while implicitly criticizing those who haven’t gotten better, a response is imperative. (Just to add: This kerfuffle is making noise in the UK. In the US, no one will notice it or care, and it will have zero impact.)

We can all be pleased that someone suffering from long-Covid has reported improvements and perhaps full abatement of his troubling symptoms. But Professor Garner then takes the next step and implies that other long-Covid patients and those chronically sick with ME/CFS are losers if they cannot use their own very powerful and very manly thoughts to recover as he has. Not only that–these losers should be ignored because they keep complaining about their illness. What a downer! From Professor Garner’s perspective, such carping seems to have impeded his ability to achieve a full recovery–until he met other people who set him on the proper cognitive path.

What makes Professor Garner’s post particularly offensive is that he posits his recovery as being not only from long-Covid but from ME/CFS as well. Let’s be clear: Professor Garner seems to have had a rough time with post-viral illness, but by all evidence it was self-resolving, like the great majority of such cases. Or perhaps the generous advice Professor Garner received early on from ME/CFS patients about pacing–which he acknowledges he pursued obsessively–helped his body heal.

His apparent belief that his nine-month experience reflects poorly on the countless ME/CFS patients who have suffered through years of sickness is not warranted. It is also insulting. While Professor Garner reached out to members of the ME/CFS community for advice and counsel in the early stages of illness, he now appears to blame them for exacerbating his condition with their suggestions.

Given that his story is unsupported by the evidence from research on “recovery” from ME/CFS, his experience represents no more than his own experience. It’s a shame he wants to extrapolate his tale to apply to everyone, and that BMJ has enabled his efforts to do so. In short, BMJ has demonstrated how one man’s account of recovery from post-viral illness within a very normal time frame can induce smart people to make grandiose claims about the healing characteristics of the proper cognitions.

That approach has already been investigated in a “definitive” study among ME/CFS patients. It was called the PACE trial. And as has been widely acknowledged, PACE was a methodological and ethical disaster that ended up proving the opposite–changing thoughts and beliefs, at least through cognitive behavioral therapy, does not work for these patients.

Professor Garner’s post has attracted dozens of comments–65 at current count. They are well worth reading. I have posted two short ones below.

**********

From Geoff C:

This reads like a wildly irresponsible article. No one will begrudge the writer their improvement but to suffer for a grand total of 8 or 9 months to then declare that he has ‘disarmed’ ME/CFS shows a significant amount of ignorance and disdain for those individuals suffering year after year.

My wife has been ill for approximately 3 years, a good chunk of that being bedbound. We are 33 years old, in the prime of our lives, and being relegated to a subsistent existence because of an illness that is poorly diagnosed and even more poorly treated. If the magic bullet was a 6am boot camp class then you would not have hundred of thousands of people screaming out to be heard.

“I did this by listening to people that have recovered from CFS/ME, not people that are still unwell”

Would the writer recommend this research approach to other illnesses such as cancer/MS/Parkinson’s? Ignore those who are suffering and blame them for their own illness? Are their perspectives not valid or worthy until they have beaten their illness?

Again, I am glad that you have recovered from your condition and can return to work. I hope for your patient’s sake that it is in research and not dealing directly with patients. The stunning lack of empathy in this article is exactly the reason why those in the chronic illness community are terrified of the response they will receive from their own physicians.

**********

From Professor Jonathan Edwards of University College London

Dear Paul,

I am sorry but I think this is inexcusably unprofessional. I was going to make some comments but Geoff C makes them well.

You mention ‘I learnt that our primitive and unconscious defence mechanisms against injury and infection in the brain and other parts of the body sometimes get disturbed, giving false fatigue alarms. A vicious cycle is set up, of dysfunctional autonomic responses being stimulated by our subconscious.’ This seems to be not only a ‘biomedical’ explanation of the sort you disparage but one with no evidence base whatever: pseudoscience, as you should be well aware. Your sources in Norway sound reminiscent of a group promoting a commercial procedure devised by an osteopath and rejected out of hand by NICE in the light of trial evidence.

Coming from someone supposed to be an expert on clinical evidence this is extraordinary. It is also deeply insulting, for reasons that others have made clear.