Dr Norman Swan: ME/CFS is more psychosomatic than long-COVID

alex3619 said:
Given that ME and long COVID have almost the same symptoms, how is one clearly syndromic and the other psychosomatic? Is this not hypocritical?
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He insisted that ME (well, CFS to him) is just fatigue and nothing else. So he genuinely has no idea what ME is at all, he's just spewing what eminent people he trusts told him and hasn't bothered reading anything that doesn't confirm it.

So not hypocritical, just incompetent. After all he's the "science journalist" who was told to his face by Richard Horton that the PACE researchers were neutral researchers who took a step back to evaluate this treatment critically. A treatment they invented and have been promoting for decades. Either he knew it's BS or was too lazy to check. Either way he's clearly not much of a critical thinker.
 
Snow Leopard said:
I disagree. Much of his COVID-19 reporting for example has been of typical journalistic quality - eg talking about the week's hot topic and lacking a true scientific perspective.
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I confess I have not listened to him since mid-year. But IIRC he was one of the first to argue for at least a lock down.
 
Art Vandelay said:
I seem to recall that @dave30th offered to appear on Swan's show when he was in Australia but was rebuffed.
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I remember an offer was made by others on my behalf. I also met with a producer at the network who seemed interested but nothing came of that. It seems pretty clear evidence isn't going to change his mind and he'll likely just use efforts to prove him wrong as proof of his preconceived notions about patients. He touted PACE 10 years ago and is obviously aware of the controversy around it and isn't interested in revising his opinion. frustrating.
 
dave30th said:
I remember an offer was made by others on my behalf. I also met with a producer at the network who seemed interested but nothing came of that. It seems pretty clear evidence isn't going to change his mind and he'll likely just use efforts to prove him wrong as proof of his preconceived notions about patients. He touted PACE 10 years ago and is obviously aware of the controversy around it and isn't interested in revising his opinion. frustrating.
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Hey, it's not as if this has real life consequences or anything.

Oh, wait. It does. Uh. Weird. Do no harm... or else: nothing? Absolutely nothing. OK, then.
 
On today’s episode of the podcast, Tegan (Norman Swan’s cohost) said this:

“So Norman, on Friday's Coronacast we mentioned chronic fatigue syndrome in passing, and we've had a lot of response from our audience about it. We don't have time to do it justice today but we will pick it up tomorrow and give it the attention that it deserves then.”

The consensus here is a feeling of dread.
 
I've sent a short note to Tegan Taylor at the ABC, to add to her pile of responses.

Perhaps others could too - not concentrating on past problems at the ABC, but noting authorities around the world now recognise that psychologically based therapies don't fix ME/CFS. And mentioning the effort that is going in to biomedical research to understand why a large range of infections seem to trigger it. And expressing hope that the ABC could help inform people of these advances.

Maybe Tegan will have a more open mind, and talk to Emerge.

Fingers crossed tomorrow isn't too bad.
 
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Hutan said:
I've sent a short note to Tegan Taylor at the ABC, to add to her pile of responses.

Perhaps others could too - not concentrating on past problems at the ABC, but noting authorities around the world now recognise that psychologically based therapies don't fix ME/CFS. And mentioning the effort that is going in to biomedical research to understand why a large range of infections seem to trigger it. And expressing hope that the ABC could help inform people of these advances.

Maybe Tegan will have a more open mind, and talk to Emerge.

Fingers crossed tomorrow isn't too bad.
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I suggested to Tegan that they speak with Emerge, to get accurate info, but we’ve not had any contact, and I doubt Swan would do that. We’re all holding our collective breaths.
 
Government agencies tend to ignore complaints and the ABC is no different unfortunately.

I just saw a suggestion from a doctor that it might be more worthwhile to complain about Swan's behaviour to AHPRA (Australia's healthcare practitioner regulator). Swan is still a registered medical professional.

I really don't have the spoons to look into it properly tonight, but there are some broadly-worded clauses that might fit this situation:
  • serious concerns about the practitioner’s skills, knowledge or judgement in their profession.
  • any other behaviour that is inconsistent with the practitioner being fit and proper to be a registered health practitioner.
  • the practitioner’s communication, including, someone being treated rudely, inappropriately or disrespectfully
Misrepresenting the science and trying to smear an entire group of patients seems to fit in with these.

https://www.ahpra.gov.au/Notifications/How-to-submit-a-concern.aspx
 
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Today’s podcast is up and we got the best outcome we could have hoped for... an on-air correction! It’s not perfect but, given this is Norman Swan we’re talking about, this is a really good shift. It starts at 7.30.
https://www.abc.net.au/radio/programs/coronacast/when-might-we-see-more-cases-in-was-outbreak/13110754

Transcript for those who don’t want to or can’t listen:
Tegan: We kind of mentioned long-COVID in passing just now and we need to clarify some things. So, on Friday we were talking about long-COVID. It was part of our quick fire Friday section and we were ripping through these questions and, Norman, you made some comments that some people have queried and are asking for some clarification on.

The thing you said is that long-COVID is a highly defined syndrome and things like Chronic Fatigue Syndrome is, you used the word psychosomatic, and you said that there wasn’t so much of a pattern to that disease. And that seems to fly in the face of definitions by the WHO, the CDC in the US, the UK body and even Australia’s National Health and Medical Research Council.

Norman: So, let’s separate this out. What happens when you’ve had a viral infection, and there’s some research for this and we’ll put a reference up about that, when you have a viral inflection, the post-viral fatigue that you get is very well defined. It’s a very well-defined syndrome, and it goes to a whole pattern of different viruses. So there’s one pattern there. So long-COVID is a syndrome in its own right, which is quite similar in some ways to other post-viral conditions.

What people call ME, Myalgic Encephalomyelitis, other people call Chronic Fatigue Syndrome, is a different syndrome. So if I said to people it’s less well-defined, that’s actually not true. It’s well defined. And it’s real, in terms of the symptoms that people get. And there’s a very wide range of symptoms, so you get a foggy fatigue, muscle aches and pains. But it’s a very different, much more widespread physiological disorder, which nobody has been able to find consistent abnormalities for.

I can understand completely why people think anybody that says “It’s in your mind”, they get really, really angry that it’s some sort of psychological condition. It’s a very physical condition, in the same way pain is a very physical condition, and itch and other symptoms and so on.

It’s just that no one has been able to find a consistent problem. Some people find particular immune abnormalities, some people find problems in the brain and so on, but when these are repeated, it’s just not consistent.

And it’s tragic for the people who’ve got it, because it is such a physical phenomenon. But it’s a very different syndrome from long-COVID.

Tegan: It sounds like both are really debilitating conditions and it’s great to see that these are being taken seriously.

Norman: Absolutely. And very real. No question about that. So it’s not imaginary, in any shape or form. Neither is. They’re both well-defined syndromes.
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Hutan said:
:) That does look like progress.
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Yeah, it was really significant that Tegan said that Norman’s comments “fly in the face” of WHO, CDC, NHMRC. It shows that the medical establishment has moved, and people like Swan are being forced to catch up. For once, we had the medical establishment in our corner.

It’s solid progress from someone who has been clinging to PACE as quality evidence.
 
Snow Leopard said:
No, they're simply skirting around what they really believe - that it is all in the brain. The pain reference is a thinly veiled reference to central sensitisation.
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Spot on. This is a non-apology.

Much in the same way they use the FND label, they're trying to placate patients by telling them "you have a real illness with a serious-sounding acronym" while winking behind their backs at their doctor mates because they all know that it means "psychosomatic".

Edit: that being said, I know from experience that this the closest we'll get to an apology from the ABC.
 
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Hutan said:
I know that's what Swan is doing. But, he isn't the only person running the show these days, it seems. It is progress, even if it is of the 'water on stone' sort.
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I agree. If we were measuring success here by whether or not Swan changed his mind, then you would have to say that there was no progress. But that was never the outcome for me. What we needed was for the audience to hear that, contrary to what he said on Friday, the condition isn’t psychosomatic. The audience wouldn’t have heard any of the nuances in what he said that we know were there. But they definitely heard him say that it’s a physical condition with multiple symptoms. This was as good an outcome as we could have hoped for, given our history with Swan.

Whether or not Swan believes what he said today is irrelevant, IMO. He and those like him will be the last to change, we know that. But the evidence is strong enough now that formal complaints resulted in him having to make a correction. That’s new (I’m thinking by comparison with when Swan had Sharpe and Horton on his radio program back in 2011 to talk about PACE).
 
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What happens when you’ve had a viral infection, and there’s some research for this and we’ll put a reference up about that, when you have a viral inflection, the post-viral fatigue that you get is very well defined. It’s a very well-defined syndrome, and it goes to a whole pattern of different viruses. So there’s one pattern there. So long-COVID is a syndrome in its own right, which is quite similar in some ways to other post-viral conditions.

What people call ME, Myalgic Encephalomyelitis, other people call Chronic Fatigue Syndrome, is a different syndrome. So if I said to people it’s less well-defined, that’s actually not true. It’s well defined. And it’s real, in terms of the symptoms that people get. And there’s a very wide range of symptoms, so you get a foggy fatigue, muscle aches and pains. But it’s a very different, much more widespread physiological disorder, which nobody has been able to find consistent abnormalities for.
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So they are saying ME is not post viral despite the fact it was named for a disease which was a long term consequence of epidemics. How ignorant these people are.

Also Longcovid is valid because the onset is fixed but ME isn't because the cause has not been found. This despite many other diseases not having the cause discovered yet.
 
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