I've read your thoughts,
@Esther12, and normally I might well join you in veering towards the sympathetic view in circumstances like this.
But it's not the other pieces. It's
this piece, at
this moment in ME history, in
this publication.
If he's read and understood as much as he tries to suggest, he should absolutely understand the significance of the moment. Maybe the failure to do so is vanity, or the result of manipulation, or simple lack of intelligence – I don't know. I can't see it the way you do, but do of course respect your point of view.
I understand why so many people feel like this is a kick in the teeth and there are a lot of things about the context that make it worse. But the people who appreciate that are not going to be swayed by Garner's personal story. The people who don't appreciate that are going to be made even less sympathetic to our concerns if they think Garner is being unfairly criticised, and criticising him on the basis of the context will seem unfair to those not familiar with the context.
There are parts of the blog that could even seem calculated to cause problems, and it wouldn't surprise me if he got advice from others, but it's impossible for us to know what was going on and when we don't it's best to avoid being too critical imo. I don't see much upside to criticising him for writing his blog, which could just imply that his personal story is particularly important for some reason.
I believe that we can unwittingly reinforce, as Pavlov has shown, the dysfunctional autonomic tracks in the brain set up by a virus long gone.
NOT what Pavlov has shown at all. Pavlov showed that dogs can salivate to the sound of a bell with the bell is usually paired with food. He had nothing to say about "dysfunctional autonomic tracks in the brain", nor about dysfunctionality at all. Pavlov considered learning to be a normal and adaptive phenomenon.
The idea there can be "bad learning" would be totally foreign to Pavlov. Pigeons can learn pairings and will gradually "unlearn" when whatever pairing they learned no longer holds, slugs and learn and unlearn in the same way. It would make no sense to him that there were humans who could fail at these fundamental skills. Except perhaps if there were in a coma (but even then...)
This statement of is not about the author's experiences, feelings of beliefs, it is presented as fact - but it is hokey pseudoscience.
That's fair. An annoying thing about these blogs is that they present a 'folk knowledge' approach to medicine without supporting references in the context of a BMJ blog from a Director of the Centre for Evidence Synthesis in Global Health. At the same time, his blogs have been like this previously, eg his June 23 one:
“Anna explained that the “busts” can be experienced as a reprint of their entire symptom complex in the acute phase. I had fatigue, headaches and tingling nerves as my main symptom, and that’s what comes back when I overdo it. For a neighbour, who pushed herself to get a contract in to secure her salary, her collapse manifested as severe abdominal pain, diarrhoea, and a sore throat: a complete re-enactment of her initial illness. I learnt that in convalescence after a severe assault, the body goes into protect mode, so if it isn’t getting space to recover, it shuts you down by bringing an embodied memory of the illness.”
I think it's fair to criticise lots of things about his blogs, and particularly the most recent one, but I also worry that some people are being too strong and personal in their criticism.
Given the way the blogs are written it does feel like criticising someone's publicly published diary entries, or personal blog, rather than a serious medical paper, but I understand that this is complicated by his position and the fact it's a BMJ blog..
Also, people have been complaining about Garner extrapolating from his N=1 experience in his most recent blog, but probably the closest he comes to doing that explicitly is with the conclusion (happy to be corrected on this if I've missed a better example):
“I write this to my fellow covid-19 long haulers whose tissues have healed. 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.”
Is that any more extrapolation than what he was doing previously (though it certainly implies more than it says)?
eg on 29th September Garner says "We are healing, thanks to a little help from our friends."
https://blogs.bmj.com/bmj/2020/09/2...tting-by-with-a-little-help-from-our-friends/
“Paul Garner and colleagues describe how a self-help pacing group has helped them manage their long covid"
...
"Being ill is a lonely business, and worse with covid-19. Locked away from friends, no collegial coffee breaks, no face to face medical consultations, and a television full of Orwellian government briefings. Add symptoms that your friends don’t quite believe; fatigue that doctors have framed as psychosomatic; and the poison of post-exertional malaise with no advice on NHS or NICE websites. The isolation is complete.
With little formal support, many of us turned to social media. This helps, but has a limit. There are only so many times you can read long stories about other people’s illness, or miracle cures from histamine free diets.”
...
“This self-help pacing group has been a game changer for managing our long covid. Given the variety of our symptoms, we were all astounded that the management approaches that worked were so similar. We were all getting relapses; we jointly concluded that if we overdid it, these relapses were guaranteed, but the items of expenditure were different. The boy in the group could not work out why he was relapsing, so passed around the extensive daily records with heart rate, screen times, and length of sleep. Iulia asserted firmly that five hours working and five kilometres walking each day was too much, and he was put under close watch. Yet the discussion around how much to exercise was important: two members realised that they were frightened to go out, and then started gentle walking outside, sometimes just a few hundred metres a day, building up gradually over time, and this was pivotal in their recovery; whereas one member, disabled with heart symptoms, went for short walks to the beach to seek out the joy of the sound of the waves while watching the sunset.”
...
“Managing pacing helps us prioritise our health. “
...
“For now we have all had to step away from a lot in our work lives: you cannot keep going if you make yourself unwell, so simply say “no”, and negotiate or design adjustments in what you expect of yourself. Learning to recover, learning to potter, learning to relax, was a new experience to us all.”
...
“We all thought we were going to get better soon, but gradually became open to the probability that it might take much longer, perhaps twelve months. This was an important step and helped us make realistic goals, relieving the anxiety around the slow speed of recovery.”
...
“As we learn to recover, we are not so lonely with our illness. We are healing, thanks to a little help from our friends.”
Some bits from his June 4th blog:
“I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area. I turned to other narratives. I read about
“boom and bust” cycles, but they didn’t help me, they sounded like a publishing house for dysfunctional love affairs. Charles Shepherd at the ME Association helped with explanations of the delayed payback with post-exertional malaise. This helped work out why I felt worse on some days, but not always—there is still a random element. Jennie Jacques, Open Medicine Foundation Ambassador, gave me good advice, and has written an excellent
narrative online about how to pace.”
...
“I believe there are thousands of people with long haul covid-19 who are overdoing it and making themselves ill with these relapses, across the whole spectrum of conditions.”
...
“For people with covid-19 who have experienced other people doubting the veracity of your symptoms, etch this experience in your memory for ever. If you are a man, remember women experience this more than you; if you are a doctor, remember people with ME/CFS have experienced this for decades; and if you are an employer, remember employees will be nervous about saying how they are, and will assume that you will disbelieve them.”
His June 23rd blog:
“Anna explained that the “busts” can be experienced as a reprint of their entire symptom complex in the acute phase. I had fatigue, headaches and tingling nerves as my main symptom, and that’s what comes back when I overdo it. For a neighbour, who pushed herself to get a contract in to secure her salary, her collapse manifested as severe abdominal pain, diarrhoea, and a sore throat: a complete re-enactment of her initial illness. I learnt that in convalescence after a severe assault, the body goes into protect mode, so if it isn’t getting space to recover, it shuts you down by bringing an embodied memory of the illness.”
“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.”
“Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19.”
“Society is acknowledging the “long haulers” but part of the picture is missing. What about people less privileged than us articulate middle classes mobilising ourselves, writing to MPs, and talking to journalists? What about the minority groups, the single parent households, people on zero hours contracts, where long convalescence is not an option? 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.
His May 5th blog:
“Health professionals, employers, partners, and people with the disease need to know that this illness can last for weeks, and the long tail is not some “post-viral fatigue syndrome”—it is the disease. People who have a more protracted illness need help to understand and cope with the constantly shifting, bizarre symptoms, and their unpredictable course.”
“The least helpful comments were from people who explained to me that I had post viral fatigue. I knew this was wrong.”
“And today the disease has lifted. For the first time, I do not feel awful.”
There are a lot of problems with what he's written, but my strong instinct is to be particularly kindly to someone who has been through a really strange year. And I say that I someone who cannot stand 'be kind' memes or the pretence that the problem with modern society is just 'unkind' people.
Those older blogs create quite a different impression to the one created in his most recent blog. I suspect that is one reason why some people are upset by his new blog. I think it's better to emphasise the limited value of personal stories than try to pick apart a single patient's view of themselves and their story, but I thought I'd post a few things I noticed, against my better judgement.
I am sympathetic to Garner for what he's been through, and can see why he would want to frame his experiences in the way he now has to his colleagues, so do not think that these are things worth challenging him on. I can see patients being frustrated by this stuff, but seeing patients tag him on twitter as they express their upset or anger seems misguided to me.
In his most recent blog he says "While pacing made sense initially, I became obsessive as the months passed in an attempt to avoid my symptoms. I started unconsciously monitoring signals from my body. I sought precipitating causes. I became paralysed with fear: what if I overdid it? I retreated from life. I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria." That depiction of himself does not come through in any of his contemporaneous writing.
During what seemed to be his most pacing 'obsessed' period - when describing his pacing buddies group in a piece they co-authored, he mentions that they discouraged him from 5 hours working in addtion to 5km walks in a day. They wrote: "For now we have all had to step away from a lot in our work lives: you cannot keep going if you make yourself unwell, so simply say “no”, and negotiate or design adjustments in what you expect of yourself. Learning to recover, learning to potter, learning to relax, was a new experience to us all.” Also, that group spoke of challenging unreasonable fears back then: "Yet the discussion around how much to exercise was important: two members realised that they were frightened to go out, and then started gentle walking outside, sometimes just a few hundred metres a day, building up gradually over time, and this was pivotal in their recovery; whereas one member, disabled with heart symptoms, went for short walks to the beach to seek out the joy of the sound of the waves while watching the sunset." It concludes: “As we learn to recover, we are not so lonely with our illness. We are healing, thanks to a little help from our friends.” There was no mention of them having a metabolic disease that had damaged their mitochondria.
In his most recent blog he says: "I fulfilled the Canadian Consensus Criteria for CFS/ME. Seven months after the initial covid-19 I was referred to a CFS/ME specialist. The ME community sent me unsolicited emails about mast cell deactivation, biological causes of my illness, and told me to rest."
His earlier blogs report him finding that he needed to rest, rather than this being something stemming from the ME community's unsolicited e-mails. eg from May 19th blog: "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."
On October 5th (six days after his "We are healing, thanks to a little help from our friends" tweet/blog) he was still agreeing that Long Covid should not be equated for ME/CFS:
Also, on the same day he was talking about introducing additional exercise to his 5km walks within pacing, which seems quite different to his presentation of himself as "paralysed with fear".
It's as if he views his ill self as some absurd ME/CFS patient trope now that he has recovered, despite his ill self's writings being quite different from that.
I'm not that interested in how CFS is diagnosed but found his mention of having "fulfilled the Canadian Consensus Criteria for CFS/ME" surprising - he also featured that point in his tweet about his new blog. To me, this sounds like an addition others might have wanted him to include. I'm not sure when he would have had the six months of substantially reduced activity post-acute covid symptoms that would be needed to justify his claim of fulfilling the Canadian Consensus Criteria for CFS/ME (would this include those still walking 5km a day and working 5 hours a day? I can see how it might, but presumably there's some limit as people recover). That time requirement also pushes him up against the time when he was meant to be recovering.
On October 30th at a WHO press conference he was saying he was "beginning to take gentle exercise" and concluded by saying "Health professionals, families and patients need to know it exists, that it has many faces and it isn't in your head."
https://www.who.int/publications/m/...press-conference-transcript---30-october-2020
I don't know when he gets time to go through the recovery process he describes in his newest blog before falling ill on his holiday in Granada, as he was there on the 25th November.
This opened the door that led to my recovery. 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. These neural tracks become established like tyre tracks in mud. I learnt that I could change the symptoms I was experiencing with my brain, by retraining the bodily reactions with my conscious thoughts, feelings, and behaviour. Over the following weeks, with support, I learnt how to do this. I suddenly believed I would recover completely. I stopped my constant monitoring of symptoms. I avoided reading stories about illness and discussing symptoms, research or treatments by dropping off the Facebook groups with other patients. I spent time seeking joy, happiness, humour, laughter, and overcame my fear of exercise. I started slowly with some graded physical activity on a bicycle. Within two weeks I surprised myself with an hour of Military Fitness training in Sefton Park with my friends. I was overjoyed, with all the great memories of running around the park with my friends. I began to build back my strength.
After a couple of months, my recovery was tested. I developed acute dengue fever while on holiday.
So there's not much time to fit in "Over the following weeks", "Within two weeks" and "After a couple of months".
I don't think any of this is important, but these things stood out when I re-read his blogs.
I'm glad Garner's feeling better (despite...), it's a bit interesting that he's chosen to present his illness in the way he now does, but lets just hope people realise these sorts of stories are not surprising considering the rate of natural recovery from post-viral symptoms, and the way humans work.
