Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

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.

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:

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):

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/

Some bits from his June 4th blog:

His June 23rd blog:

His May 5th blog:

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.

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.

 

It seems a pity that we have to be critical of someone who has been ill,and is confused by what has happened to them. Had he written some obscure personal blog we could have happily ignored it and him. His problem is in chosing to publish in the BMJ, with the spurious credibility which that provides. He must have known what he was doing in writing about his experiences in a way which makes them available for use by charlatans.

If you wish to become an "influencer" you must expect to be judged as such. It must have been clear that this could not be allowed to stand on the record unchallenged.

 

CG: Amazed that lived experience counts for nothing amongst some.

This has become like a hissing match in a girl school playground.
It does a lot to reveal the complete lack of intellectual integrity and professionalism in this sort of discussion. Personal propaganda seems to be the only aim.

The irony of her comment is clearly completely lost.

 

I have an issue with him suddenly claiming that he more or less had ME (fitting the criteria) even though he'd never been diagnosed as such. To me that was the most unprofessional act of all. You can't just go round claiming you have this or that without a diagnosis.

It was noticeable before detonating his pseudo science weapon on M.E folks that in every previous communication, he was very clear in saying that he didn't have me/cfs. I think he really didn't want to be in a stigmatised group and now that he's 'well again' he's happy to rejoin the bullies.

Ps he probably also fit the FND and MUS criteria

I'm not angry with Garner, just disappointed.

 

It's possible that Garner had real ME and that he recovered from it in a relatively short amount of time. Maybe the prevalent view of ME as being a lifelong problem 95% of the time is not correct.

How do you distinguish between a bad case of PVFS and ME anyway? From what I remember Ramsay believed that the two (main?) differences were that PVFS rarely lasted longer than 2 years and didn't have rapid fluctuations of symptoms throughout the day.

 

https://twitter.com/user/status/1355440449687867392


For those who don't know her, Frances Ryan is a chronically ill journalist who writes for the Guardian.

 

Of course! Lived experience of other people only matters when it agrees with our preconceived ideas and is always wrong when it conflicts with such ideas!

 

Maybe we need a separate thread for Clare Gerada?

Eleanor Morgan is an author and “assistant psychologist” who writes for the Guardian among other papers and magazines:
https://twitter.com/user/status/1355483055520165889


Meanwhile views of the video clip I posted are up to nearly 20k (117k impressions) and seem to be growing exponentially. The best way to undermine these people’s arguments is with their own words.

[I edited this to make it clear that it is the arguments I want to undermine, not the people]

 

I wrote a long post about this in another thread: https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-168#post-318718

Yes, this is one of the reasons why I was disappointed that the GWAS isn’t including people who’ve recovered.

 

contrary to what CG says about just being about her own experience, both she and PG were introduced as 'experts' and (this is from memory) the presenters ended the piece, confirming that the 'testimony' and advice should be heeded as it was from 'experts'.

 

I’ve put these on the Trish Greenhalgh thread but sharing here too as they relate to the CG interview above:
https://twitter.com/user/status/1355485048296894465

https://twitter.com/user/status/1355486773430906882

https://twitter.com/user/status/1355494378031243265

 

So she started discussing this, blocking people who raised concerns, and sympathising with Clare Gerada about being 'under attack', without actually listening to what Gerada said in the interview?

Blimey.

 

Are they part of the Hole in the Argument Gang?

 

TG: The testimony of someone who has responded to a particular therapy is not a dismissal of those who had a different experience.

Yet again this shows the depth of ignorance about how evidence works.
The fact that someone got better doing exercise does NOT mean that they RESPONDED to that exercise.
At least it really does look as if these people have opened their own can of worms that at some point they will have to swallow.

 

This is precisely why it is so disappointing to hear @Chris Ponting news today

https://twitter.com/user/status/1355184457049911296



Especially with DecodeME fast approaching

https://twitter.com/user/status/1355468596705689601


P.S. Chris, I am ‘one of those’ recovered from PVFS, healthy (90-95%) > new onset > M.E.
If you ever need a n=1 volunteer!

 

In response to Garner's 'mind over matter' story

Code:

https://twitter.com/KateCushing2/status/1355480273761275906

https://twitter.com/user/status/1355480273761275906