Trigger warning: gaslighting, ableism, death, coercive control, cult psychology
Note: this a long blogpost, take it easy!
Politics pervades everything, and healthcare is no exception. This can arguably be exemplified through tracking the twists and turns of dominant thinking around Long Covid management, and how this is positioned vis-à-vis other chronic illnesses, notably myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). This blogpost will examine the evolution (for want of a better word) of thinking of Professor Paul Garner, professor of infectious diseases at Liverpool School of Tropical Medicine, regarding Long Covid management (and it would also appear regarding the management of ME/CFS). This will be done largely through considering a series of blogposts that Prof Garner wrote in the British Medical Journal (BMJ) on the subject, culminating in a recent change of philosophy that has come as unexpected to many.
To preface, I am not suggesting that Prof Garner is actively involved in the politics permeating either Long Covid or ME/CFS conceptualisation and management. I don’t know whether he is or not. I know that it is possible to be swayed by the political interests of others, in good faith, without realising that those interests are indeed political. My interest here is to highlight how apparent sudden and rather fundamental changes in thinking may coincide with political agendas; whether that is just coincidence or there’s something more to it – the reader can decide. I'm also interested in use of language and social positionality in empowering, or oppressing, the other.
I am not questioning the veracity of Prof Garner’s recovery, and I am happy to hear that he has recovered. Writing about a person’s recovery through a critical lens does not come naturally to me as an erstwhile therapist; however, this is not therapy practice. Prof Garner chose to write in a respected medical journal with a wide readership, as a scientist as well as a patient, with implicit and sometimes explicit suggestions of what other people with Long Covid should do to manage their condition. Given Prof Garner’s social positionality (intersected sociodemographic privilege with the added weight of scientist and doctor status), a case could be made for greater consideration of social responsibility.
Negotiating Long Covid management
Prof Garner’s first piece on his Long Covid journey appeared in early May last year, where he described his experience following covid-19, noting symptoms that were strikingly similar to those of ME/CFS and post-viral fatigue syndrome (PVFS) which inevitably sparked discussion and debate from readers. His general narrative could have been that of millions of people worldwide with contested (typically politicised) illnesses: disbelief and psychologisation from within healthcare, leaving the patient to self-manage with the support of other patients. Despite initial hints of misunderstanding or downplaying PVFS, Prof Garner went on to engage with ME/CFS patient organisations and the ME/CFS patient community, notably adopting pacing as a management strategy. He also showed himself to be sympathetic to the plight of people with ME/CFS, whom he recognised had been very poorly served by the medical profession and health services.By September, Prof Garner was still emphasising the importance of rest and pacing for Long Covid and arguing that accommodating the virus, as opposed to attempting to dominate it, was the way forward. He also endorsed an individualised approach
Up until this point, Prof Garner’s approach to managing his experience of Long Covid seems pretty much in line with the thinking of ME/CFS patient organisations and grassroots advocacy organisations. There is also a very welcome repeated emphasis on the importance of listening to patients and believing patient testimony. All this, of course, runs counter to the ideology of biopsychosocial (BPS) proponents of ME/CFS, who have historically believed that ME/CFS is perpetuated by aberrant illness beliefs and fear of activity, which should be addressed with graded exercise therapy (GET) and cognitive behavioural therapy (CBT), despite evidence of patient harms. Some influential BPS proponents are still advocating CBT and GET to aid ‘recovery’ from ME/CFS, despite the fact that the recent NICE draft on diagnosis and management of ME/CFS repudiated GET and downgraded CBT on grounds of a glaring lack of evidence. In contrast to this BPS stance, Prof Garner appeared very dubious of CBT and critical of GET, and encouragingly engaged in a talk with Dr David Tuller, senior fellow in public health and journalism at UC Berkeley’s Center for Global Public Health, on the methodological and ethical flaws of the PACE trial. During a webinar on Long Covid management in September, hosted by the BMJ, Prof Garner continued to appear sympathetic to people with ME/CFS, taking a very clear ‘pacing and rest’ stance on Long Covid, whilst underlining the value of support groups.
At some point after this, Prof Garner clearly had a change of heart.
A new direction
Another of Prof Garner’s blogposts appeared in the BMJ on 25 January this year, where he reports that he has recovered from Long Covid. Confusingly, he also seems to think he might have recovered from ME/CFS, given that he says he met the Canadian Consensus Criteria for ME/CFS and was referred to a ME/CFS ‘specialist’. This, with an approach that appears to fly in the face of much of what has come before. Prof Garner writes about how initially pacing made sense in his recovery, but he became ‘obsessive’ as the months wore on. He mentions monitoring body signals, becoming fearful of overdoing it, and believing that his experience of Long Covid was a purely biomedical one, factors which are all positioned as problematical in his recovery. That particular narrative will sound very familiar to people with ME/CFS, because it could have been lifted from any one of a multitude of papers outlining the biopsychosocial (BPS) conceptualisation of ME/CFS. (In fact, this narrative underlines any illnesses which can be shoehorned into a 'medically unexplained symptoms' box). Echoes of CBT, and in particular GET, can be observed in Prof Garner’s account.
Prof Garner then recounts how he was put in touch with a PhD candidate in psychology from Norway, who apparently had ME/CFS before fully recovering, who asked Prof Garner to be “open to the idea that you can have an impact on your symptoms with your conscious mind”. Reference to Norway is suspicious. A new and much debated Norwegian study is looking to test the effectiveness of the Lightning Process in treating ME/CFS. The PhD candidate for this research project is reported to have recovered from ME/CFS using the Lightning Process and is now a Lightning Process instructor (researcher conflict of interest?). Prof Garner appears to have taken the advice of the PhD candidate which was, he said, “the door that led to my recovery”. Prof Garner then goes on to talk about ‘false fatigue alarms’, a ‘vicious cycle’ and how he learned to change his symptoms through brain re-training, using conscious thoughts, feelings and behaviour to change bodily reactions. This is strongly redolent of Lightning Process principles, an approach based upon a theory of chronic stressors - including illness - locking the patient’s autonomic nervous system into a vicious cycle of sympathetic overdrive. The purported way forward is to disrupt this cycle with thoughts, behaviours, postures / movement and various elements of NLP, life-coaching, mindfulness and self-hypnosis.
The Lightning Process has been widely critiqued within the ME/CFS community and beyond: reports of false advertising, patient harm, suggestion of cult-like dynamics and lack of evidence base feature amongst concerns (see here for an overview and further links). In the field of ME/CFS, a number of attempts have been made to push the Lightning Process, both by Lightning Process developer Phil Parker and colleagues, and BPS (CBT and GET) proponents. It would also appear that there are associations between some Lightning Process aficionados and and certain BPS proponents and/or their academic institutions (here and here). The recent NICE draft on diagnosis and management of ME/CFS explicitly listed Lightning Process as an approach that should *not* be offered to people with ME/CFS.
No matter what the controversy, this approach appears to have been life-changing for Prof Garner. In the same January blogpost, he describes how he stopped monitoring symptoms, reading stories about illness and discussing symptoms with others and – notably – dropped out of the Facebook support groups he found so helpful some months previously. This shift in behaviour is of course towards a management style highly consonant with BPS ideology around the management ME/CFS, where tales of illness as a socio-cultural phenomenon abound and support groups have been framed as a predictor of poor outcomes – although only where support groups object to BPS ideology. It is also highly consonsant of the Lightning Process protocol where, in my experience, patients are asked not to engage in anything illness-focused, including support groups - unless they are Lightning Process support networks. (As an aside, the behaviour of isolating a person from their support network, and/or insisting they should only engage with people who share a particular philosophy, is a feature of both coercive control and cult psychology). Whilst Professor Garner’s description of how he overcame his ‘fear of exercise’ through ‘graded physical activity’, is another hallmark of BPS (in this case, GET and CBT) management, this narrative also sits very comfortably with the Lightning Process. Meanwhile, the positive psychology flavour to elements of Professor Garner’s management style, for example seeking out happiness, joy, humour and laughter, also sit very well with Lightning Process principles. Is there a theme developing here?
A (bio)psychosocial framework
All of the management techniques that Prof Garner depicts and reports as exceedingly helpful could theoretically be placed within a BPS framework, with emphasis on the psychological or psychosocial pillars. History has shown us how the biological tends to get played down in the BPS framework. Although of course Prof Garner is not (overtly) following a formal or specified therapy or protocol, there is potential for this to be developed, and presented as a possibility for Long Covid management. The BPS 'model' (it's more of a framework) is not synonymous with CBT and GET; it was combined with CBT and GET in the case of ME/CFS and many so called ‘medically unexplained symptoms’, but it is sufficiently eclectic and conceptually under-developed (not a good thing) to accommodate all manner of hybrid psychological approaches. And that includes Lightening Process principles, if it serves the intended purposes to frame it in that way. I wryly pondered whether a hybrid approach to Long Covid management might be proposed for a clinical trial or two; something sufficiently conceptually distanced from CBT and GET so as not to cause too much of an outcry, but related enough to keep the door ajar. Then I discovered that Professor Trisha Greenhalgh, professor of primary care health sciences at the University of Oxford, had already tweeted that a clinical trial (apparently for graded exercise) might be indicated on the basis on Prof Garner’s n=1. (I cannot provide a link to the tweet as I have been blocked by Prof Greenhalgh, as have many people with ME/CFS who have never interacted with her, in an apparent blanket blocking just after her RCT tweet). Anecdotes are a long way from being statistically generalisable, yet there appears to be an assumption in Prof Garner’s writing, and perhaps more broadly within the scientific community, that his experience can be extrapolated to the greater Long Covid population. Is this because it’s the anecdote of a doctor and scientist as opposed to a patient, or because it serves a broader purpose?
Cause or coincidence?
I accept that the approach taken by Prof Garner coincided with his recovery. I do, however, question the causal relationship that Professor Garner assumes between his approach and his recovery. Correlation does not equal causality, and it is strange that a scientist of Prof Garner’s standing would overlook that. In many cases, post-viral sequelae resolve within the time-frame Prof Garner is reporting; his recovery may have absolutely nothing to do with the approach he outlines. Perhaps as he started to recover naturally, he was able to become more active, cognitively focus more, and thus engage with the approach he described (i.e. temporally the reverse of what Prof Garner assumes). Prof Garner previously wrote about what appeared to be severe biological pathology, for example, his infected brain, and inferred life-threatening heart complications. It’s unclear how Prof Garner thinks a psychologically-informed management approach (with no apparent biomedical intervention) can effect recovery from such severe biological pathology.
I’m not downplaying the value of psychological interventions. Psychologically informed approaches (most of which can be said to acknowledge mind-body connections in some way), can be incredibly helpful in certain scenarios, whether as primary treatments for certain primary mental health conditions, or as adjuncts for many other illnesses. I just don’t believe that psychological interventions can ‘treat’, let alone cure, physical illness, disease, pathology or however you want to language it. Maybe there’s a biomedical element of Prof Garner’s management that was omitted in his account, or maybe the aftermath of the virus merged with prominent psychological sequelae amenable to the approach taken. Whatever the truth of the matter, what interests me most is what lies behind this sudden change in attitude and management approach. And what concerns me most are the ramifications of this change in approach, and the way it is framed, both for people with Long Covid and for people with other chronic illness, notably ME/CFS.
Politics
What might explain this profound change of heart? Rest and pacing is dropped, graded physical activity is adopted. Criticism of psychologisation of Long Covid and other chronic illness patients is abandoned, and a psychologically-foregrounded management style is adopted in its place. A narrative of accommodating post-viral sequelae is replaced by a rather militaristic narrative of beating them into submission. What happened between Prof Garner’s last BMJ blogpost (to my knowledge, in September) and this latest one?
For one thing, the NICE draft on diagnosis and management of ME/CFS happened, and GET and CBT got very publicly called out for lacking any form of evidence base in the treatment of ME/CFS. A fair few BPS proponents got very cross. Some suggested it wasn’t their interventions at fault, but the way they had been delivered. Others pleaded that NICE methodology must be at fault (notably via an editorial in the BMJ). There was some highly unprofessional, in at least one case ethically egregious Twitter activity on the part of pro-BPS clinicians, framing people with ME/CFS as bullies and bemoaning their unsubstantiated belief that the ‘evidence-base’ had lost out to politics and patient activism. Eminence-based medicine appeared to be under threat. More recently, sympathetic (and accurate) coverage of ME/CFS in the Guardian, in the form of a very well-written and impactful piece by George Monbiot, stood in clear contrast to the historical kowtowing of the UK press to the pro-BPS Science Media Centre. Given that there had been attempts to shoehorn at least a subset of people with Long Covid into a BPS (CBT/GET) paradigm, this apparent fall from grace could have widespread implications for the BPS camp. BPS proponents were arguably in need of support from one or more high profile and well-respected Long Covid advocates who might be persuaded to join their ideological camp. And let's not forget that the final NICE guidelines on ME/CFS are due to be published in April. Any last ditch attempts to sway opinion in that respect need to made sooner rather than later.
Professional and organisational associations might have also impacted on Prof Garner's change in direction. For example, Prof Garner is heavily involved with Cochrane, where he is currently co-ordinating editor of the Cochrane Infectious Diseases Group. As an aside, I can’t help but reflect that the methodology of Cochrane is about as far from Prof Garner’s current thinking as it is possible to get. Anyhow, Cochrane have historically positioned ‘chronic fatigue syndrome’ (as the edifice likes to call ME/CFS) under the ‘Common Mental Disorders Group’ section of the organisation, which arguably speaks volumes about Cochrane’s views on ME/CFS. The debacle that was Cochrane’s series of methodologically flawed systematic reviews on GET (which included the methodologically and ethically flawed PACE trial) in the purported treatment of ME/CFS is beyond the scope of this blogpost; Dr David Tuller has written excellent, detailed blogposts on the subject. However, it’s probably fair to say that the debacle highlighted the apparently very fuzzy lines between science, cronyism, empire-building and shameless scapegoating of chronically ill and disabled people. It’s also also worth nothing that The BMJ’s editor in chief (and editorial director of BMJ) Dr Fiona Godlee, who also chaired the above-mentioned Long Covid webinar in which Prof Garner participated, has defended (or at least not sufficiently addressed) metholodologically flawed BPS research on ME/CFS. Dr Godlee has also reinforced the well-worn tale of 'extremist' ME/CFS patients who ‘abuse’, ‘harrass’ and ‘intimidate’ BPS researchers (conveniently neglecting to mention the fact that patients have been subjected to decades of abuse via neglect and gaslighting, largely owing to BPS ideology).
I mentioned empire-building; there is a broader, macro level context to psychologisation of chronic illness and disability (including of ME/CFS and potentially of Long Covid) that may, or may not, be pertinent to Prof Garner’s sudden change of direction. Since Prof Garner’s articles last year, it has arguably become more apparent that Long Covid risks creating a generation of chronically ill and disabled people, with serious ramifications for the health services and for the economy. A new level of austerity looms. History has shown us that the UK government have dealt with previous economic concerns through a profound reform not only of welfare provisions, but the very definitions of chronic illness and disability, alongside explanatory frameworks of ill-health and ‘recovery’, with significant consequences for healthcare. This has been achieved through the framing of certain chronic illnesses and disabilities (including ME/CFS and anything that can been shoehorned into the ‘medically unexplained symptoms’ umbrella) as something that one can recover from largely through effort and motivation (cue psychologically-informed rehabilitation strategies). If people can be classed as ‘recovered’, they don’t need welfare provision or other financial support. This not only benefits the government, but also the health insurance industry, with whom the government has a long-standing relationship. It should also be acknowledged that some BPS proponents (notably UK psychiatrists) have associations with both entities and have actively worked on this redefinition of disability and the development of rehabilitative treatments such as GET and CBT. Long Covid management (recovery) approaches such as that outlined by Prof Garner would most certainly be of great interest to this government-academia-health insurance industry complex.
Ethics
Whatever the reasons for Prof Garner’s change of heart, there are ethical concerns that should be addressed. Prof Garner enthusiastically addresses this latest piece to people with Long Covid, notably those “whose tissues have healed”. There are implicit and sometimes explicit suggestions that others should do as he has done. How will people with Long Covid know if their tissues are healed? Social media narratives and research suggest some people with Long Covid are being refused biomedical investigations. This raises a possibility that people with Long Covid who think they may be on the mend will follow Prof Garner’s example, potentially with very damaging consequences. The rather gung-ho attitude of Prof Garner – “let’s do it: I will either die or recover” – is quite alarming in this respect. It also seems at odds with the individualised approach that Prof Garner recommended previously and does not sit well with his earlier repeated warnings that over-doing it could cause relapses.
A further aspect of this change of heart that concerns and disappoints me is what I perceive to be a broad undertone of ableist discourse. Prof Garner’s approach ethos of ‘die or recover’ is essentially reinforcing a false binary embedded within healthcare and mainstream social discourse, owing to a primacy of acute care model in healthcare and its ableist underpinnings. This harks back to Parson’s sick role and the ableist suggestion that illness was a form of deviance that required addressing as soon as possible as matter of social responsibility and moral obligation. Disabled and chronically ill people are clearly not dead, yet neither are many of us in the kind of rude health that might be enjoyed by somebody running around the park at a military fitness training session. Where are we, then, in this narrative of die or recover? Where will people with Long Covid be, who are not fortunate enough to fully recover? Will they be treated with the same level of disdain, ridicule, gaslighting and neglect as other ‘contested’ patient groups? Prof Garner’s piece was, in my opinion, permeated with (possibly unintentional) ableist assumptions about harnessing the power of the mind to overcome physical ill-health, about effort and motivation paying off. Perhaps these assumptions are unsurprising; Prof Garner describes himself, prior to Long Covid, as having loved his job, having good friends, and feeling “as high as a kite on life”. These experiences stem from forms of privilege that are not shared by all members of society. This is good example of socially situated knowledge which, when situated in privilege, requires reflexivity to prevent unintentional oppression of others.
Finally, I am disappointed at the way people with ME/CFS have been framed in this latest piece by Prof Garner. The earlier collaborative narrative of how Prof Garner listened to the ME/CFS patient community has been replaced by one of receiving ‘unsolicited emails’ from people with ME/CFS suggesting biological causes. Maybe this is an innocent comment, but it does sit well with the BPS framing of people with ME/CFS as patients who are fixated on a biological cause and lobby others to get their point across, when the psychologically-informed cure is right under their noses. Indeed, it could be construed as blaming people with ME/CFS for creating a purported red herring or obstacle in Prof Garner’s psychologically-inspired recovery. One of the most troubling comments in this piece is one used by Prof Garner on social media to sum up the article: “I feel that I have looked down the barrel of the ME/CFS gun and disarmed it”.
I won’t focus on the disconcerting undertones of machismo and grandiosity, or the typically abled tendency to describe illness with war-like rhetoric (which Prof Garner appeared to find unhelpful in a previous piece). Rather, I’m interested in the suggestion from Prof Garner that he has been able to prevent himself from developing ME/CFS, or prevent his ME/CFS like illness from deteriorating: “I disarmed it”. What does that say about those people who have lived with ME/CFS, or other disabling chronic illnesses, for years and decades? In particular, because Prof Garner is saying that he “disarmed” the ‘ME/CFS gun’ (whatever that is) through exercise and essentially channelling the power of the mind. As a disabled person with a diagnosis of ME/CFS I respectfully find this statement obnoxious and offensive. But it would appear that the greatest insult to the ME/CFS community (and a divisive one at that), has been left for the finale:
“I have recovered. I did this by listening to people that have recovered from CFS/ME, not people that are still unwell; and by understanding that our unconscious normal thoughts and feelings influence the symptoms we experience”
There have been a number of examples of divide and rule tactics deployed by certain clinicians and researchers, and the media, both with respect to Long Covid and ME/CFS, and to ME/CFS as a patient group. These tactics foster inter-groups tensions, in-group and out-group dynamics - perfect for stigmatisation and scapegoating. It may be unintentional on Prof Garner’s part, but this statement reinforces those divisions. Why is that some people recover from ME/CFS and some don’t? Is it because some are doing the ‘right thing’ to recover and others are not (where the right thing is apparently exercise and channelling the mind)? This would appear to be what Prof Garner suggests. What does that say about people who don’t get better?
I suspect who gets better from ME/CFS and who does not has far more to do with the fact that ME/CFS is an umbrella term. (ME was recognised by the World Health Organisation as a neurological disease in 1969, whilst CFS was a term subsequently created and nurtured by what I believe is a mix of lack of sensitivity to context and political interests). I suspect that people with a diagnosis of ME/CFS who appear to get better through cognitive-behavioural or other primary psychological means may have a different clinical entity to those who do not - although correlation of recovery with any given intervention does not necessarily mean that the intervention effected the recovery. There is no ‘us and them’ here, everybody with this diagnosis is genuinely and often horribly ill, beyond the imagination of many abled people. The ‘us and them’ narrative is generated when we cross the line from clinical judgements to moralistic ones. In encouraging people with Long Covid to listen exclusively to the accounts of people with ME/CFS who have recovered (and “not people who are still unwell”), I fear that Prof Garner’s latest article has crossed the line. He has also further stigmatised, isolated and epistemically marginalised an already stigmatised, isolated and epistemically marginalised group of patients. I have previously suggested that medical education needs far greater emphasis on epistemic humility and reflexivity (which should include fostering critical consciousness). Prof Garner’s latest piece exemplifies this need, extending it to broader scientific training.
It remains to be seen whether the seeds sowed by this anecdotal report take sprout and grow into something substantial in the form of yet another (bio)psychosocial intervention, accompanied by an RCT with a punchy brand-like name. However, I think it’s reasonable to say that Prof Garner’s change of heart couldn’t have come at a better time politically.
Postscript
Whilst I was finishing this blogpost a couple of other things came to light which I’ll very briefly mention. Firstly, Prof Garner appeared on BBC Breakfast (28 January) to discuss his recovery. He was interviewed alongside Dr (Dame) Clare Gerada who is well known to the ME/CFS community (as is her husband, Sir Professor Simon Wessely, who may have the rather dubious honour of being one of the world’s most influential figures in the psychologisation of ME/CFS). The interviewees continued to reinforce the activity and positive thinking narrative, with Dr Gerada commenting “there is nothing that isn’t made better through exercise”. Actually, that’s a nonsense (and a pretty ableist one at that - see here for example), but it was enthusiastically lapped up by the BBC Breakfast presenters. Secondly, news of Prof Garner scuba-diving in the Caribbean in November caused some consternation and speculation on Twitter regarding timeframes and how that may or may not conflict with his reported recovery journey. I'm way too exhausted from writing this post to broach that one.
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