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

Ash said:
Of course the MEA profiled him. Of course they did. It was one thing for individual sick people, especially if new to the illness, to be hopelessly naive and all over him after five minutes of his saying that he was now an ME believer. That was bad enough. But at least based in desperation for advocates and or misplaced kindness. MEA ought know better.
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Well Charles Shepherd was giving him advice. Must be nice to be having the VIP treatment, only to dismiss it a few months later.
 
MrMagoo said:
Well Charles Shepherd was giving him advice. Must be nice to be having the VIP treatment, only to dismiss it a few months later.
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I see. So put that down to MEA leading people with ME a stray not for the first time.

If CS wanted to give PG medical advice in a personal capacity, then that’s his own, as it happens unfortunate, decision to make. But he didn’t have to profile the guy for other people with ME to read about and take as an endorsement, in either direction.
 
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I think it was fine for Charles Shepherd to provide advice to Paul Garner at that time, and also for the MEA to profile him. Garner has roles that would have made him a very useful ally, and clearly Garner was quite open to providing material.

Perhaps someone who knows Garner well might have guessed that he would later say completely the opposite of what he said in that piece, but I don't think it was at all obvious and I don't blame the MEA for publishing the article. I think they had to take the risk of allyship with Garner. In fact, the piece is useful, as it helps us understand what was going on for Garner.

He explained that this “post-exertional symptom exacerbation” is a good signal for people with chronic fatigue syndrome/ME. The difference is with covid-19, the fatigue is happening at the same time as other dangerous complications.
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This “covid-19 fatigue” for me started early in the illness. I am still not clear if it is “viral” or “post viral” but for sure it can occur alongside covid-19 effects on lungs, heart, and clotting system-effects that can kills us.
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It gave us evidence of how Garner thought of his illness as an extension of covid-19 and more dangerous than ME/CFS. Perhaps that partly his explains his mission now, to reassure.

I talk to my sister. Her personal experience of M.E. really helps, and she coaches with practical management of chronic fatigue.
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It told us that Paul Garner has a sister with ME/CFS. All I can say about that is that she has my sympathy.
 
Hutan said:
It is a really compelling listen, thanks @Adam pwme for making it available and to the people who participated. Nicky Campbell, the interviewer, was extremely good. He managed to get across that LC is debilitating, horrendous, and common. And that we don't know much yet. Wants to focus on the facts and help people. I have a few concerns that people are overplaying what is known e.g. lots of research showing physical problems, a range of non-psychological treatments, medical treatment can help. But still, it was really good taken in its entirety. It made me feel happy that there are enough people who will not accept BPS stories, who will push back hard against that paradigm.

Garner came across as confused. He talks about alarm mechanisms in the brain that shut things down when we are ill, combining with societal panic and concern about an illness that nobody knows about and might go on forever. He says that all combines to create a nocebo effect to affect recovery. He says that the symptoms are real, generated in the brain in response to danger.
He talks about a stress response, a fear response and how cortisol levels change, massive hormone releases (he seems to forget that cortisol levels in most people with Long Covid are in normal range). 'Immune system gets over-stimulated', 'lots of antibodies showing'.

Dr Amy Small talked about microclots, mentioned covid toes, rashes, massive inflammation. She gave the impression that clots (not even microclots) are causing brain fog. She seems to be suggesting that the right medical input would have helped people, people were staying at home 'festering'. She wants early access to medical support for people. She helpfully talks against 'pushing through'.

Sam, who has Long Covid: says LC is a vascular disease, a disease of the blood. He says most people don't recover, which I think is such a problematic message, because plenty of people do recover in the early months. He's good at getting across what it is like to have Long Covid. Mentions that China is giving anti-HIV drugs to people with LC, but the UK govt is not doing anything. Talks about the need for clean air (filtering) to reduce infections.

Jim Reid, health reporter: impact of LC on NHS - causing increased sick leave. Notes that LC is not one disease, different causes. Talks about autoimmune response, inflammatory response, and different proteins in the blood, but conveys the idea that things are not known yet.

Rachel, a doctor who has LC: slams Garner. It's a vascular disease, an immunological disease, not a psychological disease. Was off sick for 15 months, lost her job. Now can work mornings but sleeps in the afternoons. She says that she is on medication that helps. Research is finding real structural problems. Interviewer brings in Garner and says 'you weren't saying that it's all psychological, you were saying that there is a psychological aspect to it which makes it worse', which was a bit funny, because that wasn't what Garner was saying, but the interviewer's interpretation defused Garner's message. Garner then talks about dualism, of course there are physiological changes but that doesn't mean that cognitive therapies can't help. It sounds as though there is some research coming that will bolster the idea that CBT fixes LC.

Rachel replied vigorously and well, calling Garner to account. She notes that CBT just helping with coping wasn't what Garner said, LC isn't a fear response. Sam also replied well, noting grief at the abandonment and stigma.'The cognitive stuff that Mr Garner was talking about is absolute garbage'. CBT is like a sticking plaster, CBT for ME is debunked and discredited.

[There was then a bit of a side discussion about whether the pandemic is over or not.]

Garner comes back, saying people are misinterpreting things. Clearly LC is a medical, biological illness. But that does not mean that psychology and prediction does not have a role to play in rehabilitation. Emerging research is coming out on that, research on psychoeducation coming out in the next months - symptoms are a result of predictive coding, as in chronic pain [groan from me]. Perpetuation of symptoms.

25 mins Rachel - sees a lot of patients with LC. Many didn't know it was possible to get LC, and yet they got it. They are not vulnerable people, it's all of us. The more times you get Covid, the more at risk you are of LC. Psychological approaches helpful in helping you cope if they are put alongside treatment for the physical symptoms. When you are told that the only thing that can be done for your overwhelming dreadful physical illness is psychological treatment, that feels minimising and negating, and it leaves people feeling unsupported and desperate. And that's not fair.

26 mins Interviewer. Suggests that Garner clarified his view to not suggest that it is all in the mind. He notes that, as with ME, there is a danger of people thinking that what is said is that it is all in the mind, and that is why language and precision is so important.

Dr Amy Small then spoke passionately and well. People with LC are losing livelihoods, relationships. If you use the narrative that this is psychological, people are not held to account. She then goes on again that there are treatments but a lot of doctors aren't aware of them and don't have the expertise. Mentions doctors still don't have appropriate PPE, she brought Covid home and her husband caught it and was off work for 9 months.

29 minutes: Nicky, has had LC for 4.5 years, was a sports psychologist. Spent 2022 in bed unable to talk, couldn't engage with his kids. Has done a PhD in CBT, 'I can categorically say that you cannot think your way out of LC." The message of Garner is not supported by many people, experts and people with LC. "If I was trying to give someone a psychological therapy to treat LC, then that is negligent, I'd be struck off" because that is not an actual treatment, the treatment has to be biological. [sadly, I doubt that that is true that he would be struck off, but he came across very persuasively]. He then notes that the news is not about new research about psychological treatments, he says that there are tonnes of biological research out there. And off-label treatments. The literature and people's experience says that CBT doesn't help. He mentions ME, how people have been lying in dark rooms for 20 or 30 years and people have been saying they are lazy or have a psychological problem, and "it's absolute tosh". Criticises Long Covid clinics.

33 minutes: Jim, the health reporter. Economic impact. For every 13 people working, one person cannot work due to a long term illness. He thinks every expert believes that LC is a significant contributor to that, and politicians are coming under pressure to do something.

34 minutes: Rachel the GP: treatment for specific symptoms e.g. POTS

35 mins: Sophie, has LC. Spoke about the impact of the disease.

37 minutes: Rachel again. Pacing is the only treatment for brain fog and fatigue now. Means complete rest and then slowly build [that might be misinterpreted]. You have to rest after work - resting in a dark room with no input. Watching tv is not rest.

40 minutes: Scott. Medically discharged from the army due to LC. Hard to get disability benefit. Was extremely fit. Now after 6 hours for a desk job, he is physically and mentally drained, he has to lie down.

43 minutes: Ann: what is the long term plan with reinfections and LC? Need air filters in schools and health care institutions, preventative measures, masks in health care. Interviewer notes the Enquiry is taking evidence from LC experts this week. Economic impacts - it is ongoing.

47 minutes: Jo speaking about her husband with LC. Husband has relatively mild LC by the sound of it, but Jo conveys the awfulness of even that level of disease.

51 minutes: Interviewer says it is a topic they will come back to.
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Great summary @Hutan Thanks

PG comes across confused and talking outside of things he understands. Nocebo is 100% PDW.

Good to hear lots of dissent and push back from across the other speakers.

It doesn't help credibility if the doctors are talking about unproven evidence as if some of these things are fact or treatments too.

I wish there would be less overreach from the available evidence - from PG (from psychobabble perspective) and the other doctors (presenting things as facts where there are none).

How is it so hard to say, "We dunno".
 
hibiscuswahine said:
I can see him truly believing his psychological strategy worked. And he shows no understanding of why pwME may have an issue with his views.
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He's very selective in what he chooses to believe. He wrote this on one of his numerous blogs:

"I have learnt so much. I became well by listening to someone who had recovered from ME/CFS" "You believe you can recover? Then recover you will"

Then threw the unrecovered under the bus and complained about 'unsolicited emails"
 
Excellent summary, @Hutan

Between that and the clip posted by @Adam pwme a few posts up, where Garner is again introduced as a 'COVID expert', I do wonder who told these news outlets that Garner is a 'COVID expert', when he is so clearly out of his depth. Am really pleased that on the Nicky Campbell show, they allowed the other doctors and therapists on the show to speak up to say his views are nonsense and unscientific. Kudos to them.
 
Joan Crawford said:
Great summary @Hutan Thanks

PG comes across confused and talking outside of things he understands. Nocebo is 100% PDW.

Good to hear lots of dissent and push back from across the other speakers.

It doesn't help credibility if the doctors are talking about unproven evidence as if some of these things are fact or treatments too.

I wish there would be less overreach from the available evidence - from PG (from psychobabble perspective) and the other doctors (presenting things as facts where there are none).

How is it so hard to say, "We dunno".
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Yeah. I never know if it’s that people have really bought into there being already proven biological mechanisms or validated treatments having been convinced by the research available so far, or if it’s wish fulfilment, where you want so much for us to have already arrived at a place of reliable biomedical treatments?
Like how so many people are committed to pretending that we aren’t living through a pandemic because vaccines solved it for us or because it never existed in the first place.

Also language can be slippery. People with long COVID require medical treatment. You can provide people with long Covid with medical treatment. As of always, ever since Covid. Whereas you can’t yet treat long Covid as the condition itself medically.

It’s an absolute catastrophe that the two options on the table are self experimenting whilst probably not in the best condition for scrutinising one’s options, what with the cognitive disadvantages and or not being medically trained, or else putting yourself into the ‘Don’t worry about it, it’s nothing you’re imagining it, get back to work.’ psych program.



Edit:removed irrelevant paragraphs. + added a couple of essential words that were missing.
 
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EzzieD said:
Excellent summary, @Hutan

Between that and the clip posted by @Adam pwme a few posts up, where Garner is again introduced as a 'COVID expert', I do wonder who told these news outlets that Garner is a 'COVID expert', when he is so clearly out of his depth. Am really pleased that on the Nicky Campbell show, they allowed the other doctors and therapists on the show to speak up to say his views are nonsense and unscientific. Kudos to them.
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I assume he did. His credentials are good enough to sound convincing to someone who doesn't know better. Which all really cheapens out the value of those credentials, makes them in fact pretty much nil, but that's a problem for later. Just like the problem with all the lying about immunity debt and hybrid immunity and so on. Effective short-term, at the expense of long-term loss of credibility.
 
Mij said:
He's very selective in what he chooses to believe. He wrote this on one of his numerous blogs:

"I have learnt so much. I became well by listening to someone who had recovered from ME/CFS" "You believe you can recover? Then recover you will"

Then threw the unrecovered under the bus and complained about 'unsolicited emails"
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Is he trying to tell us that his sister isn't a good listener?
 
On the one hand, it’s good to have him on a panel of experts as it exposes him. Luckily the Beeb have taken the “balance of views” thing in the right direction here.

On the other hand, he has certainly made a lot of media appearances which gives us a fascinating history to look at - members of the public might remember him, he was on the likes of GMB during lockdown.
The “public” are much more aware that “ME and LC are real” (as in, not just psychological) thanks to media coverage particularly of Maeve Boothby-O’Neill’s inquest, and because they or someone they know got ill. So some of the public will be seeing him pop up again and think “what’s he on about?” I don’t think it’s just us who think he’s talking nonsense.

So altogether, let him crack on and expose his views, I think he’s shouting into the void. Being silenced isn’t the same thing as nobody being interested in what you say. At best he has “internet haterz” as do any people who appear on western mainstream media.
 
MrMagoo said:
So altogether, let him crack on and expose his views, I think he’s shouting into the void. Being silenced isn’t the same thing as nobody being interested in what you say. At best he has “internet haterz” as do any people who appear on western mainstream media.
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Jonathan Edwards said:
Why oh why can't we have someone saying that we don't know?
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Joan Crawford said:
How is it so hard to say, "We dunno".
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Exactly. One thing that ME/CFS, and now LC, have exposed about medicine – at least at the clinical level – is that it has a terrible cultural prohibition on saying 'we don't know'. They would rather give an utterly ludicrous false answer than no answer at all. Which is about as inviting of disaster as it get.

I think it starts from day one of medical school, were not knowing the answer is all too often punished in a hard and humiliating way. Maybe things have improved in recent years, but clearly nowhere near enough yet to fix the basic problem.

Look, I get it that doctors cannot afford to be too wrong, and that there is basic genuine knowledge base, and lots of it, they absolutely have to master to a very high degree. But when it gets beyond that, as it often does in the coalface practice of medicine, then the whole show just falls apart, and they really do start getting it terribly wrong.

"It ain't what you don't know that gets you into trouble. It's what you know for sure that just ain't so."​

Attributed to various sources.
 
Hutan said:
Suggests that Garner clarified his view to not suggest that it is all in the mind. He notes that, as with ME, there is a danger of people thinking that what is said is that it is all in the mind, and that is why language and precision
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when PG or any of the BPS lot start going into this or 'dualism' etc people should simply call them out and say, so you're not saying that LC or ME are psychosomatico_O?

One look at the group he belongs to, where they are all 'experts in psychosomatic medicine' (but with the exception of Garner) , not to mention their ties with the journal of psychosomatic medicine etc etc would pretty much suggest otherwise.
 
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