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

Hi @Wyva

To me there are two separate but related issues here. Everyone should be believed (with small caveats that occasionally someone will lie as we've seen with people on social media fundraising for the cancer they don't have). But generally people should be allowed to present their story as it's their experience.

Where things diverge is when the person goes beyond the facts of their experience into speculating about the things exterior to their ability to know with certainty that a thing is so.

So, for example, relating events that happened and the things one felt both emotionally and physically are fair enough. But interpreting something that happened as the thing that changed what you were experiencing requires some proof if you are going to give an opinion publically that x or y made you better. IMO it is not appropriate and doesn't fall under the personal experience part of the story. And people have often opined on this sort of thing only to come back and say it wasn't as they had hoped. This is normal but not useful as a narrative.

People are always hoping and in that hope find explanations that are not backed up by anything real. And it may even be that they find something that works in a limited way but give it a bigger role than is warranted. For myself as I get older it's even hard to know if some new physical experience is even part of ME or something else including just getting older.

To conclude, there needs to be some skepticism employed when talking about the relation of exterior events being 'the thing' that is affecting our health. It is going beyond our direct experience into hypotheticals. That's why we come here to advocate for the science.

That's how I see stories from people.

 

He also said the exact opposite in his first articles about his first few months, dismissing it as just post-viral fatigue and that it will pass, that he would just exercise his way out of it. He literally said and did those things at first. Dude is lying his ass off about a timeline that anyone can verify but people who believe in this junk pseudoscience are so damn lazy that the executive director editor of The Lancet thinks it's worth praising.

Edit: executive editor, not director

 

It can zap your energy and lead to a lot of self blame and guilt.

 

Yup. Or in cartoon form:

 

Two responses to the Miller, Garner, and White Guardian letter, one from Charles Shepherd.

https://www.theguardian.com/society/2021/mar/14/when-rest-may-be-best-for-post-viral-fatigue

 

Charles S writes

I think we have to be careful here. My feeling is that for most long-Covid patients the mechanism(s) driving this activity-induced fatigue is probably not going to be the same as that/those in ME/CFS; the former seems to be associated with damage and impairment of the cardiovascular and respiratory systems. The parallels with ME probably apply only to a subset of long-Covid patients.

 

I'm sorry but I cannot agree with this statement.

I also cannot disagree with it.

Because I do not know what causes 'activity driven fatigue', in either long covid or pwME.

Let alone if what cause it for 'most' people with long covid is the same as in pwME (also a very poorly defined set).

 

But how do we know that this isn't the case in some pwME? How many of us get the testing to find this out?

 

I suspect a lot of my middle aged friends wish they did!

If eating one chocolate bar or a portion of pudding resulted in painfully swollen glands, hurty muscles, and a hangover, it'd be a lot easier to resist. As it is, it just tends to make them feel tired and gradually gain weight. I sympathise; I'd be at least two stone heavier if I didn't know I'm likely to wake up the next day feeling as if I've spent the night partying in Ayia Napa.

A couple of ME friends are much better at avoiding refined sugar, and manage it most of the time. It is ironic that my lapses often coincide with boredom when I'm doing a few days of preemptive resting because I particularly needed to be free of PEM...

 

"expect things to happen then they do"
I wish they didn't, but comments like this really hurt me deeply. I don't know about anyone else, but when i got sick i fully expected to get better. That was 22 years ago now, i was 15 years old, with the rest of my life ahead of me. I expected it would pass, but that's not what happened.

 

Exactly! I also became ill at 15 and had a powerful belief I would get better - a belief that took almost a decade to diminish!

 

I was referring to how Paul Garner talked about his response to eating cake (highly refined carbohydrate) as a 'crash'. Lots of people without ME/CFS experience this, it is not something that is particularly linked to ME/CFS or post-viral syndromes (including Long Covid).

Apparently he was trying to 'see patterns' in his symptoms and analyse what factors had preceded them. But he draw an extreme conclusion that even the average layperson would not have. Maybe this would be understandable for individuals with no understanding of physiology, but this guy is a medical doctor! He should be aware of how bodies respond to sugary foods, especially as people age and 'pre-diabetes' symptoms are more likely once you reach middle age. I'd be really concerned if my GP showed this level of medical incompetence.

While some people with ME may have an extreme PEM response that they can correlate with what they ate the day before, many others will not be able to unpick PEM responses to diet since there could be so many other things co-occurring. I think factors such as age certainly make this harder to see as our bodies would have changed even without the ME.

Edit: Throughout the whole article his focus is on the symptoms of 'extreme fatigue', 'brain fog' and his 'lack of energy'. At the end he states that Long Covid needs input from 'chronic fatigue physicians'. So there's nothing in the article to indicate he experienced the extreme 'immune type', whole body ME symptoms after eating sugar that you have mentioned as part of your PEM.

 

I suspect PG has read The Secret. Or his helper has done. It's an astonishing piece of tosh. Oft foisted on the chronically ill or the thinking behind it. Even given to them as presents

 

There have been several mentions of this book. Is this it?

Code:

https://www.amazon.co.uk/Secret-RHONDA-Byrne-ebook/dp/B08Y2VTZS5/ref=sr_1_4

The description of the book doesn't sound enticing, so I think I'll give it a miss. I've got better things to do with £7.10

 

Looks like it.

Here is a summary by Mark Manson:
https://markmanson.net/the-secret

 

Your sarcasm has reached new heights, look what he's done to you!!! Maybe we can run a trial of before and after

 

I took a good ten years for me to see that I wasn't getting better

 

You're not alone there!

When I was diagnosed with ME I was so relieved! For a minute there I was worried, I thought I was really sick!

All I knew about ME was what I'd read in the newspaper and I hadn't really taken much of an interest.

I knew I was a fairly logical person, I knew I wasn't the type to obsess over symptoms & if some changes in behaviours and habits would get me back to work & life then happy days!

The reality is most people know nothing about ME until they or a loved one get ME. Most people thinks it's about being very, very tired and not much else. So how come they have all these inexplicable symptoms that they never knew were actually very common in pwME?

 

This is exactly what hit me too, about his recent public comments; he sounds like something out of The Secret. I haven't read the book but saw the film, wholeheartedly recommended to me by a good friend (an intelligent professional who really should know better) who totally believes in it. Basically, The Universe will grant your every wish (in the movie, an actor done up like a genie who apparently is The Universe, tells you sincerely, "Your wish is my command!"). You just have to want it strongly enough. An example from the movie is that if you wish strongly enough that you will receive a large cheque in the post - you will! Wow! A shame that hasn't worked for me, nor has wishing for anything else, such as recovery from ME. Oh well. My friend thought The Secret would cure me, but no dice.

It is indeed tosh. To hear a prominent professor of immunology publicly making similar pronouncements is disconcerting to say the least.

 

I've obviously p****d the universe off at some point then. That or it's got an evil sense of humour. Anytime I've had a small financial windfall it's been promptly followed by an unexpected bill for the same amount if not higher.

I've never had a big windfall - maybe I aimed too low?