Sly Saint
Senior Member (Voting Rights)
Nicky Campbells first wife had ME.
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Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.
Nicky Campbells first wife had ME.
Peter T
Senior Member (Voting Rights)
Both an expert and ‘no specialist’ at the same time depending on the source and in this quote presumably saying that he places his personal experience above systematic reviews, which is presumably why he rejects the NICE ME/CFS evidence review but not the Cochrane CFS exercise review which he believes accords with his personal experience.
Health care by bias. No different from homeopathy.
Kalliope
Senior Member (Voting Rights)
I thought all in all it was a good segment. Everyone else disagreed with Garner, including other doctors. Garner said emerging research confirms his approach, so it sounds as if a paper will be coming soon. Apart from the first few minutes with Garner, the rest was with other doctors and Long Covid sufferers, much better informed.
Sly Saint
Senior Member (Voting Rights)
Garner just rattled off the fight or flight/fear avoidance blurb which we have heard repeated almost word for word umpteen times by Chalder, Sharpe and co. He (PG) even started on 'dualism'. Certainly did not come across as knowing what he was talking about, let alone an expert in Long Covid.
Kalliope
Senior Member (Voting Rights)
Amy Small (who was excellent) with this good point on Twitter:
Thank you to @NickyAACampbell & @bbc5live for this opportunity. I think the BBC need to reflect on the fact that they have stopped interviewing climate change deniers as it was damaging the cause. Is it not time to stop interviewing folk who believe we can think #longcovid away?
Thank you to @NickyAACampbell & @bbc5live for this opportunity. I think the BBC need to reflect on the fact that they have stopped interviewing climate change deniers as it was damaging the cause. Is it not time to stop interviewing folk who believe we can think #longcovid away?
Ash
Senior Member (Voting Rights)
Yes absolutely. Except, homeopathy is pretty harmless, where as this is psychological abuse.
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Ash
Senior Member (Voting Rights)
I skipped over the PG sections. It was really surprisingly good, the LC GPs and other sufferers made some great points.
I’m so glad it ended on clean the air, stop giving everyone Covid. Mentioned the Labour government devaluing non working people, and failing to do anything about the crisis. The Covid inquiry run as if the pandemic is over and in the past. Lots of other good points.
MrMagoo
Senior Member (Voting Rights)
“Emerging research” sounds like it exists but nobody else can see it.
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.
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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Jonathan Edwards
Senior Member (Voting Rights)
It's a fun dialogue but all this stuff about Long Covid being a vascular disease is just as much garbage as Garner and potentially more harmful, I suspect.
Why oh why can't we have someone saying that we don't know?
Amy Small was talking about having access to services but as far as I can see services are either going to believe in good old BPS stuff - or maybe some new Garnered version with a deeply evolved tree response - or they are going to get anticoagulation for clots that aren't there.
Why oh why can't we have someone saying that we don't know?
Amy Small was talking about having access to services but as far as I can see services are either going to believe in good old BPS stuff - or maybe some new Garnered version with a deeply evolved tree response - or they are going to get anticoagulation for clots that aren't there.
hibiscuswahine
Senior Member (Voting Rights)
That would require some insight into why the ME community are upset by his views, something PG has shown on many occasions not to have.
To label us as anti-recovery activists is very inflammatory. I know some people recover. But I know many more that didn't and it is medical profession (especially psychiatry and psychology) and broader societal values that have caused the stigma of this illness and the gross mistreatment of thousands of people. It is bad enough being chronically unwell (something PG is not) and having to come to terms with this and make adjustments, over and over again - but to also have to deal with medical stigma. This stigma is being generated by PG and his friends.
My take, as a retired psychiatrist and therapist, is he really believes in what he says. You would know more about how social circles in academic and clinical medicine operate in the UK, Jonathan. From my understanding he is retired from his job but still active in medical networks. He must hob-nob with lots of folk in the medical world. Perhaps not quite the old-boys club anymore but a new iteration, using social media, connecting and then meeting like minded people.
I, personally think he is trading on his professorship and head of Cochrane. Of course it legitimises his views. Two very powerful jobs that we would usually associate with a high level of intelligence and integrity. And he has plenty of friends/colleagues who agree with him. And perhaps some colleagues are too polite to disagree with him. Would a person like this listen to feedback anyway?
What does one do when one retires? He happened to get covid and a post-viral fatigue syndrome. He had to process what we all have had to process and like all people who become ill have to process. His defining moment appears to be, and that has taken him on this track - is feeling he wanted to do more exercise but thought it might set him back. He talks to someone in Sweden and then realises it is himself holding himself back. He pushes himself and he improves back to normal. He got a lot of media wanting to talk to him about this new (old) illness of "long covid". 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.
Sadly, as we all know, that strategy does not work for the majority of us and for the majority of us it can make our illness worse. I do wonder if he will ever understand this and that we, also, have every right to criticise his viewpoint. I have said here before how shocked I am at his unprofessionalism. Even retired from the profession he is not "retired". Shaming him does not appear to have any effect...But why should he be ashamed? he truly believes he is right.
He has found a new purpose and passion for his retirement and with his new social network and self promotion will continue in his position and people will keep giving him a platform. It is nice to read he is being outnumbered by practising doctors who don't believe in BPS.
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MrMagoo
Senior Member (Voting Rights)
May 2020
This article is the one where he mentions his sister and her personal experience of ME/CFS and she coaches him.
https://meassociation.org.uk/2020/0...gue-a-game-of-snakes-and-ladders-20-may-2020/
also, if he’s swapped trance for “dreamy tunes” what kind of trance was he listening to?
This article is the one where he mentions his sister and her personal experience of ME/CFS and she coaches him.
https://meassociation.org.uk/2020/0...gue-a-game-of-snakes-and-ladders-20-may-2020/
also, if he’s swapped trance for “dreamy tunes” what kind of trance was he listening to?
Arnie Pye
Senior Member (Voting Rights)
The elephant in the room with respect to any disease being classified as psychological or in the mind is that it means treatment of every other physical medical complaint a person has in future is attributed to the same mental problems that doctors have diagnosed the patient with. In other words, anyone with mental problems is often assumed to be a liar, probably after drugs.
For example, it amazes me that someone who is diagnosed as (or admits to being) depressed is given SSRIs, almost by default, and if the first one doesn't cure the depression then a second one will be prescribed, then a third, then a fourth. All because a patient was unwise enough to say to a doctor that they were depressed.
I really believed that doctors could fix my depression and anxiety, but after four different SSRI prescriptions over 15 years I gave up on them. I would never rely on doctors for such problems again. In the end I found my own treatment that worked for me (and it didn't involve anything illegal).
I have never seen any evidence that proves that CBT can actually physically change the body or the brain or, long-term, change the mood, but doctors expect us to believe that.
Garner spoke to someone in Norway @hibiscuswahine (and I saw someone else mention Sweden as well in an earlier post). I just want to clarify that as said person is doing a PhD and quite likely have long covid patients in her study on the lightning process (they wanted "newly diagnosed" people with fatigue). Hopefully that is not the emerging research Garner was going on about.
Thanks for the recap @Hutan!
Thanks for the recap @Hutan!
rvallee
Senior Member (Voting Rights)
There is no real research happening on this so most likely yet another open label pragmatic trial. Same as it ever was. It's a field in perpetual renewal that exists only to continue doing the same thing. Not things. Thing. The one thing they always do in loops: trying to prove themselves, and failing at that, argue that they just need to try again.
rvallee
Senior Member (Voting Rights)
Reality appears to be slowly asserting itself. After following the human tradition of doing every possible mistake many times over, with many variations on the themes and doubling down several times over, some reason might begin to peek through the veil of nonsense.
Can't say this is encouraging but going with another tradition in the biopsychosocial cinematic universe: this looks like a trend towards some progress. Thanks for the write-up, it's rare to see such vigorous discussion that isn't mostly preaching to the choir. And to hear Garner get dummied for his nonsense. Which is odd for someone who has been silenced. Ah, well.
No I thought it is useful for specific issues like phobia or catastrophisaction (proper) but not ‘depression’ in the whole sense. And that it is intended as a short course to provide ‘coping’ in the sense of ‘sticking plaster’ for short term eg abuse or triggers and tools to not have a panic attack and ‘coping’ to get people to the point where they can do other treatment.
Not ‘coping’ in the sense of Maslows surviving, coping, thriving
this distinction is different and important because expecting people to live life with none of the eg stigma and impossibility of having eg committeemen’s adjusted or supported so they are doable without making you deteriorate ‘but here’s a tool for when you get a panic attack or to fend if someone being abusive to your face’ isn’t a sustainable situation to expect from anyone
putting in adjustments is ‘helping someone cope’
giving someone CBT to tell them how to control their panic attack whilst their life and health goes down the toilet is a dishonest misuse of that same term ‘helps them cope’
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Ash
Senior Member (Voting Rights)
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.