Two part article on cognitive therapies, mindfulness, Garner etc., 2025, Long Covid Advocacy Substack article

That simply isn’t how things work. Everyone can’t just decide to not react to something. And you certainly can’t expect that to go well. Try telling someone with violent anger issues that they should just stop being violent and angry, and letting them continue on their journey in life on their own. Clearly there are situations where guidance and training is appropriate - and the Buddhists seem to think so too.

No, it does not. It is what the western medicalised version describes.

This post is about the western medicalised version, and how it compares to different versions of Buddhism, but with the aim to answer the question of: is the western medicalised version of mindfullness appropriate for chronic illness:

But you said a version of Buddhism says you shouldn’t react. Moving away from the fire in a controlled fashion is a reaction to something external - and it’s done on a completely egoistic basis. So clearly there are situations where a reaction is appropriate by most standards.

 

Yes. If they are willing to write slides like that at public conferences. You can imagine the lengths they are going to to establish their views institutionally behind closed doors. They are treating this like a fight.

 

It's the same kind of style you see from any Youtube crank ranting about how the earth is flat or vaccines cause autism or whatever. But because he has some past professional eminence he gets treated as a non-crank.

 

I'm hoping the deranged tone is a sign they are losing the argument.

But I am so sick of the claim that telling people the truth is in fact causing disability. The BPS approach literally caused my disability in the sense that while I was technically disabled before (and absolutely support mild pwME who refer to themselves as disabled), I was able to function and be out in the world regularly and care for myself, and considered myself chronically ill, if anything. Severe is a whole other ballpark as we all know.

The promotion of the idea that being told you are sick is what has made you sick by the very people responsible for unquantifiable harm and deterioration among pwME is utterly Kafkaesque, in the true nightmarish sense.

 

There is very little here that unpicks why this is problematic. It is descriptive 'Paul Garner says this, SIRPA says this' but nothing about why it's wrong. This is a shame.

SIRPA has thousands of clients reached through their practitioners, is my understanding. Thousands of recoveries from all kinds of chronic symptoms. I appreciate that is anecdotes but those people deserve to be believed.

 

Should we also believe the millions of people that have not gotten better, or even gotten worse, from the same methods?

 

It's a fluctuating and unpredictable illness from which a percentage of people recover with no intervention at all. Anecdotes of recovery attributed to any one particular method deserve to be afforded just as much belief as anecdotes of recovery by any other method (graded exercise, experimental drugs, folk remedies, expensive supplements, restricted diets, coloured light rays, oxygen chambers, TCM, LSD, electrical stimulation, crystal healing, the power of prayer, etc etc etc.).

Those seeking to influence the care and treatment of sick and disabled people by promoting any particular one of those methods (and seeking to gain from it professionally and financially themselves) need to provide more in the way of evidence than anecdotes.

 

When I first developed ME I was training as a yoga teacher and had a long standing regular meditation practice, perhaps I should argue that these were the reasons my acute EBV infection (glandular fever, mono) triggered my initial onset. When I had my first remission, I no longer had a yoga practice, but did try for six months prior a raw food vegetarian diet, perhaps I had discovered a cure: raw food and not doing yoga. My subsequent relapse was associated with developing a bout of seasonal flue whilst hosting a house party for the Millennium New Year. Perhaps mixing socially with people should be completely avoided if you don’t want to develop or redevelop ME, indeed how many hermits develop the condition?

As @Eleanor points out you need a lot more than anecdote to identify an aetiology or develop a treatment for a specific condition. Garner is also being selective on which factor he attributes his recovery too, he could just as well prescribe scuba diving in the Caribbean or deep and meaningful phone calls to Norwegians with as much anecdotal evidence as a cure for Long Covid. (Is it Norway or Sweden that have the telephone service where you can telephone volunteer citizens to find out about the country? If Norway, perhaps this should be encouraged as a treatment for ME.)

 

The more I think about this being a hermit to prevent ME/CFS the more it seems to make sense, neither Julian of Norwich nor Simeon Stylites seemed to have the condition, and it does not seem to be a religion specific association as Milarepa, though turning green from a diet of nettles, did not develop ME/CFS in his Tibetan cave.

Further people with very severe ME/CFS report social interaction can worsen the condition. Gosh this arguement from anecdote leads to infinite possibilities.

 

Anecdotes from strangers don't deserve anything. They could be a tiny proportion of people whom recovered naturally/due to other reasons.

Only people we know personally deserve to be believed.

I've noticed a huge difference in recovery/remission stories (over 25+ years) between those who've I've known retrospectively (before they tried whatever therapy) and those who I've only known afterwards.

There is a good reason why evidence based medicine demands randomised placebo controlled trials - to avoid selection bias and response biases.

 

The DARVO is so triggering.

 

I know somebody who swears she was cured of Long Covid overnight by drinking nettle tea, so maybe that's the charm after all! (Except I also drank the nettle tea which she was kind enough to give me, and it did not cure me )

 

Gathering nettles in quantity is hard work. Though I love the taste, like spinach the new shoots boil down to almost nothing. I once made a nettle lasagne for twenty people. It was a culinary success, but never again as I needed a large sack full of stinging nettles and the nettle prep took a long time and it was hard to avoid being repeatedly stung.

(added - of those twenty people two have developed ME, one Lyme’s, two a heart condition, one died in a car crash, another develop leukaemia and another MS, so perhaps nettles are best avoided in a world of medicine by anecdotes.)

 

Respect! I once made nettle soup for two and that was trouble enough.