Hello, I thought about not commenting as I too felt disquieted like others. However, the more I thought about it the more I felt I wanted to get out there what I was thinking and the harm that this article can do from his place of authority and power given who he is. So, I have just posted this on the BMJ blog comments section. It's in moderation so who knows if it'll ever appear. So, FWIW:
Dear Dr Garner,
It is excellent news that you have recovered from your debilitating symptoms after Covid-19 infection. This is the usual and most common outcome from post-viral fatigue states which generally resolve between 6 to 24 months duration post infection. From a longitudinal perspective, for example, Dubbo study (Hickie et al., 2006)).
I was, however, rather taken aback by some of your statements. For a man of science and medicine to state, for example, “I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria.” It would perhaps be illuminating to your medical colleagues, fellow long haulers post-COVID-19 and the BMJ readership where you obtained objective evidence for this disease and abnormalities and by what testing method was used to demonstrate such? This would be potentially of great value in figuring out, along with monitoring the progression and recovery from, such states if you could please share.
As a Counselling Psychologist who works with patients with long term medical conditions in and outside of the NHS, I was amused to see that you “… started unconsciously monitoring signals from my body.” I wondered how this could be achieved. By its definition, the unconscious is not available for introspection or therefore self-monitoring.
I would have hoped that given your medical credentials and access to colleagues who would have reassured you that recovery in the medium term was your most likely outcome. I suspect your visit to the CFS/ME specialist did just that – priming you to the idea that recovery was likely. I was cheered to see that you were able to take good advice in your early illness from patients who have not been so fortunate as yourself and who have not had positive outcomes: to rest and pacing yourself initially. I am glad that you were able to receive treatment for your anxiety; however, I am baffled why you felt the need to seek care from an unqualified, non-clinically trained student in Norway? There are plenty of clinically qualified psychologists, with experience of working with post-viral patients, close to home, in the NHS, to support you.
Reading the description of the therapeutic process you engaged in (details of which are sketchy to say the least) I am struck by your absence of critical analysis of both it and the evidence base for it, or lack of. Surely this is an important aspect of credibility and essential if a professional is to be taken seriously by peers and professionals? Belief in one’s recovery (“I suddenly believed I would recover completely.”) while presenting woo-hoo pop psychology theories with no objective demonstration of cause and effect, are you really suggesting that your scientifically trained colleagues buy into this? The conformation bias and other well-known and studied phenomena I would hope would be a key part of your line of work (Director of the Centre for Evidence Synthesis in Global Health and Co-ordinating Editor of the Cochrane Infectious Diseases Group). So, while you had an inclining that all that was ailing you was not purely biomedical you have found your way out of the horrid situation that you were in. You have attributed that to your change in mindset, pushing heroically through your symptoms and “I did this by listening to people that have recovered from CFS/ME.” In the former two scenarios you show extreme bias by not considering the more likely hypothesis that you were naturally recovering anyway (supported by longitudinal evidence in other viral conditions) and having overcome some anxiety and fear avoidance you are able to recover your health. Why dress it up to read like a moral tale and disparage a completely different patient group to boot? And since no one has a reliable, objective test for CFS/ME nor for long-covid it is scientifically incorrect to state or to demonstrate objectively the later. This is at best a tentative hypothesis, a belief of which there are equally valid, alternative explanations. Ironically, the recently updated ME/CFS guidelines by NICE have removed the existing, poor quality evidence base for the approach you took, for ME/CFS, as having low or very low quality. There is evidence that these approaches, as you are advocating, can cause long term harm to people with ME/CFS, which I have borne witness to time after time in my clinic (Kindlon, 2017), with resultant catastrophic physical and psychological consequences. Many people with ME/CFS spend their time seeking “joy, happiness, humour, laughter…” This makes no difference to their condition – but helps them to cope. People with ME/CFS are not so fortunate to be able to overcome their fear of exercise, as they are not fearful of exercise, but exercise intolerant, which is something that can be objectively demonstrated using the two-day cardiopulmonary exercise test or 2-day CPET. That you seem unaware of this consistent finding in patients with ME/CFS is profoundly disquieting.
As a leader in your field in a well-regarded UK institution and a position of responsibility and authority I hope in time that you can reflect on what you have written in this blog. Perhaps if you can take the time to digest how biased your thinking currently is. Perhaps a step back is needed for you to look at this in a more scientific manner. Your blog is I suggest misleading and potentially harmful to patients with ME/CFS. I put it to you that this blog will cause upset, and unnecessary distress by overreaching and conflating your subjective and biased experiences with another patient group, whilst simultaneously not backing up your case study with objective data. All that is being presented here in your blog is a biased talking shop – one that appears to be disparaging a whole group of patients, which I find shocking and irresponsible for someone in your position.
I wish you sincerely all the best in your continued recovery and retention of health and vitality.
Joan Crawford
Chartered Counselling Psychologist
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