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

Friendswithme said:
There is arguing with the science you don't agree with and there is behaviour like this. What do you feel will be achieved? Many people with M.E have varying symptoms over time (sometimes over months but sometimes in one day). That is used to tell people their symptoms aren't real, when that isn't the case. So don't go out there getting a journalist on side to say PG's symptoms varied. What will that achieve? By trying to discredit someone's personal story, you risk turning more people against the community. Who are you to say what PG experienced or didn't experienced, anyway - you might not want to hear that but its the truth, just as some others have differences in their symptoms and don't understand why but have a right to be respected as being unwell.

If you do this, it feeds into the idea that people with M.E are out to get researchers. You risk actually putting others off in case they put a foot out of line and also have their lives dug into.

Ad hominems are made by people who are losing a debate. Don't play that game. Very disappointed the charities aren't putting out a clearer message about this to prevent harm being done.
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quite apart from the ME community, the Long Covid Community have excluded him from many of their online groups.
 
Maat said:
Wasn't this the paper she explained showed the immune response dropping off a cliff edge after 2 years? 9 years ago.
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I think that is rather overestimating what she found. The levels of some rather obscure cytokines shifted a bit after about 3 years I think. Enough to be statistically significant maybe but nothing that we would normally take as relevant in clinical practice.

When those data came out I was impressed by the careful methodology and that something ad been found but I saw it as a tiny clue rather than anything to hang a theory on. Since then we have not heard more. I suspect that Hornig realised that there was no obvious way to build on the story.
 
Haveyoutriedyoga said:
Perhaps we need a catchy slogan that makes it clear that ‘we’ are not attacking the persons experience and choices, nor the utility of generic supportive therapies when used as just that, but that we oppose anyone with a platform using it to reach an audience to promote the benefits of unproven treatments or treatments that have historically been used against us, etc etc etc….
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I really think they’re best ignored, they can shout into the void because hardly anyone is buying it.

We are not “stopping people getting well” people are well able to hear about GET, LP, Brain-training App (I forget what it’s called) just as they are also able to read NICE guidance and NHS guidance, and make their own decisions. Free speech innit?

Why aren’t they lobbying the NHS to roll out their miracle cures, rather than attacking patients and patient groups for not believing they work?
 
MrMagoo said:
Why aren’t they lobbying the NHS to roll out their miracle cures, rather than attacking patients and patient groups for not believing they work?
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Who's to say they're not doing both when there has been no method of officially reporting harm from psychosocial treatment similar to the yellow card scheme? That only changed in Oct 2023 when the HSSIB relaunched, but it has not been tested yet on this subject matter.
 
MrMagoo said:
I really think they’re best ignored, they can shout into the void because hardly anyone is buying it.

We are not “stopping people getting well” people are well able to hear about GET, LP, Brain-training App (I forget what it’s called) just as they are also able to read NICE guidance and NHS guidance, and make their own decisions. Free speech innit?

Why aren’t they lobbying the NHS to roll out their miracle cures, rather than attacking patients and patient groups for not believing they work?
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I do agree, and I think providing an opposition can just add fuel to the fire, but it’s easier to spread a catchy one liner than it is to get all MECFS X users to agree to ignore this sort of thing.
 
MrMagoo said:
Nobody gets silenced as much as the privileged establishment do, when people disagree with them!
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They very accurately embody the expression of people being so accustomed to privilege that they perceive equality and fairness as injustice. That they should have to provide evidence for their claims beyond their own opinions, when they have had the privilege of doing so for decades, is basically lèse-majesté as far as they're concerned.

As if they should have to do what everyone but them has to. They never had to before! Why should this start now?! Instead we see a move away from it, the only way they can keep on pretending that their clownish nonsense is anything but vapid delusions.
 
Paul Garner on Radio 5 live just after 10am this morning (29th October) introduced as a "covid expert" claiming it is a a "stress response" and the "nocebo effect"

Dr Amy Small was also interviewed and very politely disagreed and said it has multiple elements, including vascular.. commenting from memory so might not be accurate on the last part.
 
JellyBabyKid said:
Paul Garner on Radio 5 live just after 10am this morning (29th October) introduced as a "covid expert" claiming it is a a "stress response" and the "nocebo effect"

Dr Amy Small was also interviewed and very politely disagreed and said it has multiple elements, including vascular.. commenting from memory so might not be accurate on the last part.
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He clarified that cognitive approaches "can help"

This is a really good discussion. All sides getting an airing with lots of personal stories.
 
JellyBabyKid said:
Paul Garner on Radio 5 live just after 10am this morning (29th October) introduced as a "covid expert" claiming it is a a "stress response" and the "nocebo effect"

Dr Amy Small was also interviewed and very politely disagreed and said it has multiple elements, including vascular.. commenting from memory so might not be accurate on the last part.
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I don’t fully get why as his only connection to the area is getting covid (April? 2020) that lasted until autumn 2020 - when he started being able to ‘exercise out of it/things lifted’ is a bit fuzzy but I’m guessing around 6months ish - he was on newsnight saying he was fine by the Jan? 8months later so guess he’d been ‘fine enough’ for a good time by then before you do that

anyway his only connection is having covid that lasted 6-8months in long covid symptoms until Jan 2021

which many people must have had, why he’s somehow seen by such programmes as any authority vs the next person. Who might have had it longer or shorter

am I right in thinking he retired so he didn’t get back to his job and that wasn’t in a specialism which would relate to biomedical covid or long covid or anything.

I know there is the publicising going on but I just don’t get it from any journalistic point of view it rather puzzles me. Just because some friends at uni recovered from glandular fever in this time frame I know it was pre-Twitter but you didn’t have this pick out someone in the middle who didn’t just have four weeks ill or was never the same again as if that’s some ‘special signal’

what am I missing?
 
bobbler said:
I don’t fully get why as his only connection to the area is getting covid (April? 2020) that lasted until autumn 2020 - when he started being able to ‘exercise out of it/things lifted’ is a bit fuzzy but I’m guessing around 6months ish - he was on newsnight saying he was fine by the Jan? 8months later so guess he’d been ‘fine enough’ for a good time by then before you do that

anyway his only connection is having covid that lasted 6-8months in long covid symptoms until Jan 2021

which many people must have had, why he’s somehow seen by such programmes as any authority vs the next person. Who might have had it longer or shorter

am I right in thinking he retired so he didn’t get back to his job and that wasn’t in a specialism which would relate to biomedical covid or long covid or anything.

I know there is the publicising going on but I just don’t get it from any journalistic point of view it rather puzzles me. Just because some friends at uni recovered from glandular fever in this time frame I know it was pre-Twitter but you didn’t have this pick out someone in the middle who didn’t just have four weeks ill or was never the same again as if that’s some ‘special signal’

what am I missing?
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He appears to be friends with Wessley and Gerada. The latter is the BBC's go to GP so it could be a connection to her or the Science Media Centre put him forward as their in house expert for all things covid?
 
Sadly it seems anyone is an expert to the BBC if they call themselves an expert and make a lot of noise about it.

On the surface his credentials can seem impressive:

His name is attached to various articles about ME/CFS and Long Covid published in research journals; he's part of the self styled Oslo Consortium; he's leader of the patient rep group on COFFI; and his professional career was infectious diseases and Cochrane.

All quite impressive sounding to someone outside the ME world until you dig deeper and find he's never researched Long Covid or ME/CFS and has never been clinically involved with either group. All he's doing is building a self publicity campaign based on the flimsiest possible evidence, and the shoddy research of his friends.

I can't bear to listen to him.
 
JellyBabyKid said:
He appears to be friends with Wessley and Gerada. The latter is the BBC's go to GP so it could be a connection to her or the Science Media Centre put him forward as their in house expert for all things covid?
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but he isn't an expert? and that should reflect on them if that's the guise he is being put forward? He's a bloke that had covid for 6-8months like many others did. Telling his own story like any other patient also should have a right to (we tend not to and get these silly assertions thrown at what I think are quite straightforward descriptions) is one thing, it is one person who went about their life as anyone else can choose to do 'whatever' and its a bit unusual to get onto numerous shows or what not but still that's that.

But inferring 'expertise' in long covid or ME/CFS from a 6month personal experience that ended 3yrs ago as the sum total confuses me. When they ask for his credentials as an expert/who are you, as they might Binita Kane, Oonagh Cousins, Chris Ponting, Dr William Weir, Helen Baxter etc then his are 'patient/ill for 6-8months in 2020 with covid/long covid', not GP or scientist or any of the other bps's qualifications?

being friends with some of the bps doesn't make someone an expert and people who also had covid and long covid also had all sorts of jobs that also weren't being experts in areas related to ME/CFS or covid, I don't know his background but it isn't any more specific to ME/CFS than Miranda's is necessarily?
 
He is an epidemiologist who worked on infectious diseases at the Lpool School of Tropical Medicine, but he hasn’t “worked” on anything COVID. It’s all very muddy.
As he’s said he worked on Cochrane or helped set it up. It’s not just his “post-Covid condition” - daily 5km walks before the 6 month mark and international travel at the 7 month mark- timeline we need to look into, it’s how long and how far back the BPS connections go.
 
He's an expert in duplicity.
Read what he wrote here
Paul Garner on long haul covid-19—Don’t try to dominate this virus, accommodate it
September 4, 2020
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I peeked at the Cochrane review of “Exercise therapy for chronic fatigue syndrome:” the conclusion was that patients benefit, feel less fatigued, and that there is no evidence that exercise worsens outcomes (although I understand this review is being updated).

This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area.
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Paul Garner on long haul covid-19—Don’t try to dominate this virus, accommodate it - The BMJ

and compare.
 
This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area.

It really does seem that Dr Garner would benefit from some analysis on a couch to work through the cognitive dissonance he suffers from. Maybe to ask why he should not blame an edifice he help to create?
 
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