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

https://twitter.com/user/status/1257793683778187264

 

I think it's the former because something very similar happened to me. Six weeks after getting EBV, I was still horrendously ill and the GPs I'd seen were clueless.

My flatmate pointed out an article in the newspaper about an Australian Rules football player who had CFS and said "I hope you don't get that". I replied that it was unlikely because I was experiencing the same viral symptoms as when I'd first come down with EBV. I felt ill not fatigued.

In my experience, most doctors are completely ignorant and believe that CFS = fatigue. For example, three different specialists all told me that it was "impossible" for me to have insomnia because everyone knows that people with CFS are tired and spend all their time sleeping.

 

Interesting article.

 

Copied from this thread

Huffington Post UK: Coronavirus Is Leaving People With Serious Fatigue - What Can You Do About It?

Interviews with professor Paul Garner from Liverpool School of Tropical Medicine and dr. Charles Shepherd from the ME Association on Covid-19, post viral fatigue and activity management.

While we don’t know for sure the causes of CFS/ME, there are a number of theories about what might trigger it – one of which is viral infections.

The ME Association has noticed that people with diagnosed CFS/ME are experiencing a “significant exacerbation” of their CFS/ME symptoms after having the coronavirus. However, Professor Garner believes we should be cautious about calling it post-viral fatigue syndrome for now.

“The virus, and the body’s response to it, clearly causes a myriad of symptoms,” he tells HuffPost UK in an email – some are similar to symptoms of other viral infections, some are unusual and some are similar to the symptoms of CFS/ME. “As things stand, by the UK definition, this is not chronic fatigue syndrome or ME because a) we know the cause and b) it hasn’t gone on for four months.”

 

Very frustrating he is still being adamant it's not ME or CFS. He was the same guy who wrote to BMJ blog post saying that the suggestion he had post viral fatigue syndrome was the worst suggestion he had been given.
https://twitter.com/user/status/1259856845969203200

 

Ah cool. So everyone who developed ME following a confirmed viral infection can now be taken off the blacklist and finally receive competent medical care? And I guess we should do that systematically from now on. Whew, that would save so many lives!

Oh, that's not what he meant, uh? He actually meant this isn't ME because this is serious and ME is just a psychological boo boo? Ah, well.

It's really getting silly seeing so many articles describing the thing with accuracy but never even saying the words, as if they are sullied, taboo. You'd swear there was an inquisition at some point or something like that.

 

Apart from the "because we know the cause bit" I think Prof Garner does have a point in the included quote.

Given how much that is still unknown about covid, I wouldn't want to see patients being told they have ME within a few weeks of being ill. If they are getting recurring symptoms of their covid infection then I think they should be seeking help and getting it, rather than being dismissed.

Let's face it, there are plenty of physicians out there who use an ME diagnosis to dismiss patients.

Ongoing monitoring and listening to patients who continue to have symptoms and treating them where possible might help prevent some going on to become more ill or even eventually developing ME.

 

This comes across as a backhanded dismissal of the importance of post-viral syndromes (and CFS & ME).

Doctors should be taking such symptoms seriously regardless of the cause! But that is not what he is implying.

 

I disagree -he says:
"This matters, says Prof Garner, because “some doctors and families are dismissing people who are quite unwell with ‘post-viral exhaustion’” when it fatigue could still be a symptom of the coronavirus itself."

I agree the next paragraph he is saying patients might discount them, but I read that as following on from being dismissed by doctors or family members.

I think that's probably true that some, especially if they've already been brushed off, will dismiss it themselves and just put up with it thinking it'll go all by itself. Having been told I just needed to recover by my GP when I became ill I simply struggled on feeling really ill for a long time before I went back.

Edit - cross posted with you @Snow Leopard

 

I think it could be read either way. It is true that many docs already are dismissing people with ongoing symptoms.

I certainly accept it is also highly likely given some of the other things he's said that he is dismissing it too.

 

https://twitter.com/user/status/1257729841161547776

https://twitter.com/user/status/1257770349229309952


https://twitter.com/user/status/1259887589118509064

https://twitter.com/user/status/1259892092765118464

 

Yes, I went back and looked at the article again and realised my mistake, so deleted that post. Surprised you managed to read it in the 2 minutes it was up!

 

That's my very brief window of clarity for the year!

edit - would you like me to delete the response and then this post to tidy up?

 

It's too late now! ¯\_(ツ)_/¯

 

Extract from the Oxford CFS criteria contradicting @PaulGarnerWoof's claim

https://journals.sagepub.com/doi/pdf/10.1177/014107689108400224
https://twitter.com/user/status/1259896779853762560

 

There are things about Paul Garner's comments that make me think he harbours some poor views about PVFS/ME/etc, but if his symptoms are continuing (or did he say he'd recovered?) he's probably having an emotionally difficult time, and maybe not on his best behaviour. When I first fell ill and had my doctor raise the possibility of ME (though in a way that implied I should be able to avoid getting it) I instinctively disassociated myself from it and was confident that I'd recover.

If he's been surrounded by shitty views about ME/CFS for his career (which seems likely) then I can understand him really not wanting currently difficult and scary symptoms to be seen as a part of that, even if that leads him to say things that get my heckles up. He probably sees his comments in a very different light to us.

 

Could well be true, but when you do interviews for the media (as opposed to in private circles), your comments are justifiably scrutinised. And you have a particular onus on you to be accurate when you're not just presenting yourself as a patient but also as a medical expert.

 

Another interview by Prof Garner, this time on BBC 5 Live. I haven't listened so far.
https://twitter.com/user/status/1259407544969281538

 

Sure, I'm not saying he shouldn't be scrutinised or challenged, but just trying to think of things from his perspective, and how that might affect what sort of scrutiny might be most useful (something I'm generally pretty bad at).