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

I think I sent in this short comment:

Dear Paul,

I am sorry but I think this is inexcusably unprofessional. I was going to make some comments but Geoff C makes them well.

You mention '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.' This seems to be not only a 'biomedical' explanation of the sort you disparage but one with no evidence base whatever: pseudoscience, as you should be well aware. Your sources in Norway sound reminiscent of a group promoting a commercial procedure devised by an osteopath and rejected out of hand by NICE in the light of trial evidence.

Coming from someone supposed to be an expert on clinical evidence this is extraordinary. It is also deeply insulting, for reasons that others have made clear.

 

Copied post

A bunch of single-issue campaigners. The irony is, I sympathise with their issue but I don't agree with *everything* they say. So I am on a hit list.

That sounds a bit unconvincing.
That isn't why she is on the hit list I think.

Has Garner's piece been edited? There seems to be a bit about people who did not get better missing, or am I imagining that?

 

It's even weirder than this: he already did all of that at first. His 2nd blog post was that he recovered, then another after that was that he relapsed. He literally wrote that the initially thought he could exercise his way out of this and failed.

It looks like he rested and paced long enough for the recovery process to happen, or he's just saying that as part of the LP. Regardless it's especially absurd considering he already wrote about pushing through and relapsing more than once. The difference here is the woo mantra being said out loud and repeating the obvious tropes. No way a few months back he would have said he is "afraid" of exercise, this is unnatural language, someone else's words. He's simply using too many buzzwords for such a short text, the whole brochure is there.

We'll see how this play through. But as one comment mentioned, he said nothing about being back at work full time. Which is odd.

But I definitely changed my mind, this needs a response. So far it's been great and it's also exposing Greenhalgh as a sham, her patient engagement and expertise in medical evidence simply not credible.

 

A clever friend found a Facebook post from November 25th 2020 of Garner in Grenada.

When googling Dengue and Grenada some local newspaper articles from September 2020 comes up about a significant jump in Dengue cases.

Post edited to remove link to the Facebook post as on second thought sharing the post with pictures was unnecessary.

 

There were several reasonable responses so I am encouraged that many people understand the problem and are thinking rationally about it now.

I do fear for Prof Garner actually. His reasoning I would describe as febrile.

I have seen people latch onto LP ideation and denounce the ME community, seeking to distance themselves from the disease by avoiding the community, which you could call MEphobic (i.e. projection), only to have a relapse after running on empty for a couple of months and return looking for relapse advice, which anyone who asks for it is welcome to, listen to your body, pace activity.

I spent many years in a quasi psychotic state myself, undiagnosed in a repeating cycle of push crash, so I say this with sincere sympathy for the suffering of those who struggle against ME but the way the ME CFIDS illness I have affects my brain sets me up for that kind of thing by making me febrile and hypersuggestible.

When they are in that kind of state human beings can believe anything. Which is why I think LP and BPS GET etc are so inappropriate for people with the condition I have.

I simply dont know if what Prof Garner had is what I have, or even that everybody with ME has the same thing I do. I know some people with ME do not recognise the kind of problems I am talking about but for me it is a very significant part of my condition despite the fact it is primarily immune based. This is why we need to subtype PWME and would guess we will likewise need to subtype longcovid patients.

I just hope Prof Garner does not have a major relapse but if he does I hope he has the courage to be honest about it, as it would be embarrassing after this but totally understandable.

 

I have read over some of PG blogs and news stories from the last several months and I have to say his histrionics are high on the menu: "a roller-coaster of ill health, extreme emotions, and utter exhaustion", "it's a little bit like a grenade has gone off in your hands, and there's damage to your tissues all over the place, and you're busy trying to recover and work out what it is" etc, and now that he has recovered he says pwME are 'still unwell'.

 

I have noticed that when my health improves, I start feeling like I was exaggerating my ME/CFS and that it wasn't really as bad. Usually I get worse again within a day or two.

 

Don't be unfair!! It was an honest mistake! Really! It was an editorial error and not the authors' fault!

 

From PG: “The virus is certainly causing lots of immunological changes in the body, lots of strange pathology that we don’t yet understand. This is a novel disease. And an outrageous one. The textbooks haven’t been written.”

He went on holidays.

 

All the time!

 

what was the source of the narrator's unreliability?? there can be so many.

 

Strangely enough, if i remember correctly, which I probably don't, a made-up medical condition was involved.

 

I couldn't help noticing that a certain somebody from Recovery Norway is sharing Garner's BMJ post in Swedish long covid groups on Facebook...

...and has reacted to his own post with a "love" emoji!

 

Nothing wrong with liking your own posts!

 

Thats a bit like shushing someone engaging with you in a conversation, because you want to hear the echo of your own voice

 

I have thought about posting something about Garner's post, whose tone is some blend of evangelical and histrionic. But critiquing someone's personal account of illness feels very uncomfortable. Even though I guess it's not his account per se but his attribution of his recovery to his powerful manly thoughts and not just natural recovery from post-viral illness or perhaps the result of benefits from his admittedly obsessive pacing. Not to mention the implication that long-covids who don't recover plus all whiny still-sick ME patients are losers and should be ignored.

I feel a bit personally implicated because I did reach out to him. As a result of that initial contact, he invited me to give a talk on PACE to his group. Now it reads as if he resents anyone with whom he exchanged any information about ME at all and feels they set him on the wrong path. Interesting interpretation of events.

Maybe I'll post excerpts from some of the posted responses to Paul's blog.

 

Uh, oh! Sounds like Munschausen-by-proxy! Call Bristol, quick!

 

Thank you Professor Edwards!
I can’t find it among the comments at the BMJ Blog, maybe you should try again?