Sense about Science: Join our talks on science, scepticism and free speech (Garner et al)

I mentioned the strange beliefs of a professor in Liverpool in my BBC interview this evening. It will be interesting to see if they run that bit.

 

Presumably the real Michael Sharpe in Paul Garner's comment section, exhorting the virtues of free inquiry and objective appraisal of research data. The amount of hypocrisy on display by Garner, Sharpe, and Davey-Smith has actually rendered me speechless.

 

Oh, are you reading subtitles/captions? Or is there a link to an actual transcript of the whole thing somewhere?

 

I see praising comments from other members of the Oslo chronic fatigue Consortium.

Maria Pedersen:
- What a lecture! Professor Garner show the importance of looking at existing research combined, and the challenges of presenting research results in fields where strong economic or ideological factors influence interpretation. Let's all remember to be both critical and open-minded when it comes to medical sciences.

Bård Fossli Jensen:
- If you or someone you know is experiencing the condition commonly known as «long covid,» it can be a difficult situation to manage. However, there are two main paths to consider. One path may result in ongoing suffering and a diminished quality of life for many years. The other path may lead to a return to a life of greater well-being. This 90-minute session can be the best investment you ever make in your health and well-being.

 

I haven't listened to this but the title gave me a laugh - "
Sense about Science: Join our talks on science, scepticism and free speech (Garner et al)

 

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For free speech to be most valuable, it must reach open minds. Open-mindedness suggests an ability to see a perspective outside of one's own. “It's being willing at the very least to have your own viewpoint challenged. Also, to test your thinking a bit,” said Political Science Prof.

 

Never heard of the Free Speech Union. Wikipedia writes:

The Free Speech Union (FSU) is a British organisation which advocates freedom of speech. The group was established on 24 February 2020 by British columnist Toby Young.[1] The organisation views itself as countering cancel culture by opposing hostility on Twitter and the withdrawal of some individuals' invitations to speak at some university events.

The Free Speech Union has been criticised by journalists and former student members, who believe that the FSU has a right-wing agenda and that its stated aims are misleading.[2][3

 

Could be worth those in touch with him highlighting this to George Monbiot, he may well find the connection interesting.

 

Also interesting that it usually comes from people who never have trouble finding a platform to speak from, about things that have always been a dominant force in society, awash in resources and institutional support. What they want is simply for people harmed by their actions and behaviors to remain silent, like in the good old days. You know, the times of robber barons, or even the classical types, with castles and moats and other expensive shit built by peasants.

 

I mean if you're prepared to associate yourself with that iconography, you're either tone deaf, wilfully blind or all in.

 

The thing that struck me about this presentation is how he has suddenly come to look very old.

 

Has it aired yet/do we know when it will? Thanks so much for doing it

 

He mentions Spock's idea that babies should lie on their belly, the view that doctors should watch patients take their TBC medication (to ensure they take them), the Long Covid ivermectin review, and the treatment of intestinal worms in third-world countries (the worm wars) as examples where dominant views contrasted with the evidence.

 

For what it is worth: here's a transcript of the part of his talk that is about ME/CFS and Long Covid:

Starting at minute 31.22 in the video:

… So then covid came along. The terror of covid came along. I was extremely stressed at that point and suddenly I became the patient. I’m not going to go into this in any great detail other than to say that … ,you know, I was one of the first people that developed this long covid, this post-covid syndrome. And I couldn’t believe it. I mean it was awful. It was like being battered and beaten. You’d wake up in the morning and sometimes feel absolutely fantastic and some days you would feel dreadful and wouldn’t be able to move, have headaches and back pain and all sorts of things. And this fatigue, exhaustion: I could hardly lift my hand from the bed at one stage and I couldn’t read. I was utterly exhausted. You feel that all you can do is sleep and that’s the way you’ll get better but it never seems to work very well.

And I became very insecure about recovering. I started reading literature about the chronic fatigue/ME, there was a [family?] history of this, and the NHS was absolutely useless. At the same time, it did seem that this was a viral effect: it was the virus still in my body. Messages started coming through on the internet to me from chronic fatigue patients saying: ‘Paul you should brace yourself. You might not end up being sick for a couple of months or a year or even five years. Think decades, maybe the rest of your life. Careers will disappear, friends will drop away, marriages will come under strain.’ This was the messaging that I was getting and I started believing. I believed my mitochondria were crippled. I couldn’t read though. I was so tired, I couldn’t read.

Anyway, so at nine months I did recover fortuitously by somebody who explained to me that this was a very real condition, but it was caused by a brain body neural pathway disorder. And I was asked if I would consider: ‘are you prepared to think about your illness more broadly that it’s a virus in your body doing this damage?’ And I was up to this, I thought this is quite an interesting way to go. I was given help with changing the meaning of the symptoms, I was helped in exposure to activity and after some months, recovered.

So, this was the second light bulb moment because now I could read, and Cochrane training had told me to look at the existing literature. And this was the second light bulb moment, and it wasn’t looking at systematic reviews, it was looking at the literature around how the brain is important in our daily functioning both in health and disease.

And here’s another book that is a fabulous book that is called the inflamed brain [the cover shows a book with the title ‘The Inflamed Feeling’] by Mats Lekander who is a psycho-neuro-immunologist. It is not the cheapest book in the world, but it is well-written and it explains how the brain and the body, these systems of defense have developed over time to protect us. It explains why I was collapsed in bed because of these alarm systems that are deeply imbedded inside us.

And I found out that in 1910, uh 1916, [Hurry?] had written about the vicious cycles of neurasthenia cured by exercise and psychotherapy. It was in the literature about this stuff. There were journals of psycho-neuro-immunology. Your thinking related to your nervous system, related to your immune system. Psycho-neuro-endocrinology. So that our bodies… there’s this wonderful biology that keeps us in like uh a thermostat in a house. It keeps us running and allows us to respond to threats. But sometimes this can go out of sync. Having a new virus come in on top of somebody who’s incredibly stressed was what happened and then your expectations mean you focus in on your symptoms, and they become magnified. They’re real symptoms and you find out that the brain predicts and perceptions based on expectations are just as real as sensations based on inputs from our senses.

So, this was in terms of Aldus Huxley doors: Heaven and Hell. This was the heaven bit of um uh, here I was coming up to retirement and suddenly a new door in medicine opened that I hadn’t realized was there. But then I thought: it is great to communicate this to others. It was such a thrill, I wanted to yell it from the rooftops. And then suddenly what happened was I was sort of kicked back. I mean I had abuse immediately: ‘psycho-babble’, ‘he’s mentally disturbed’, um uh, the long covid doctors chuck me off their Facebook page – so sort of a badge of honor now really [laughing].

But I got death threats which I’m not going to go into, but they were seen as credible by the police, and armed responses were put on standby at one stage. So that happened. People said you didn’t get better, you weren’t ill in the first place. And the medical establishment really didn’t want to publish anything because they’d come under such huge pressure. Newspapers commissioned articles and then suddenly the Independent commissioned an article and then it vanished. They were unable to publish it because people just didn’t like this recovery story.

And the fact that I was talking about the mind and thoughts being involved, sort of made people think that I was dismissing the illness which we weren’t, which I wasn’t. So, I was trying to work out how to respond to this and I was actually on holiday at the time, a holiday I had previously booked. And so I was relaxing when NICE (NICE is the National Institute of Health and Care Excellence) and they set all the standards for general practitioners and care for general practitioners to set up. And actually, what’s in NICE will determine what services are commissioned. So, a very important body. And ostensibly they are using the same systematic review and evidence to decision process that I’m mentioning.

And because I’d had some inkling of the horrible chronic fatigue conditions such as chronic fatigue ME/CFS, and in fact probably long covid for a lot of people is exactly this, I could understand the anger of these patients and so of course was interested in an update of their guidance. And I, you know, have the highest respect for NICE and the methods and the staff there so I was very interested in this. So, I started as any other scientist would do with the synthesis, with the underpinning annexes that drove the recommendations. And I suddenly realized that there was something seriously wrong. These were a parody of the methods we had developed over the last 30 years. There was no synthesis, primary outcomes of the main trial were ignored, Cochrane was reviewed for [inaudible….] reasons. Lots of things. I mean if this had come in to me during our master’s course, any little bit of it, we would have failed it because it’s just,… the methods and the systemic reviews just looked like they weren’t done by NICE people: they don’t understand the reviews or the science.

I actually wrote to the director of NICE and asked if she would needed help [Laughter in the room]. There was no, there was all the stuff we developed with a clear pipeline to recommendations. Then I went to the recommendations and the recommendations implied that chronic fatigue ME/CFS was permanent, that people are denied access to uh cognitive behavior therapy that has been used for years. The only use for it is to help people understand and accept they’re going to be ill for the rest of their life. So that is about expectations isn’t it. And treatments such as increasing their activity, exposing them to activity were banned. And this coincides precisely with what a lot of the ME charities and the ideology of the biomedical approach to this problem. And this is a mainstay of their lobby organizations.

So, the takeaway message of this guidance which is current policy in the UK, takes away hope and the possibility of recovery. And as such I believe it is harmful to public health and I’ve said that in public, it’s been written on the front page of the Guardian. And NICE itself, its global reputation has been tarnished. And you know at the end of the day, patients are losing out cause there’s less care.

And yes, I accept the condition is broad, that people respond to treatments in different ways, but this is a very nihilistic approach. The responses of others were also similar. Doctors, specialists, scientists gave 2479 pages of comments on the draft guidance suggesting it needed to change a lot. This was ignored in the final version. Eminent people in the field said so. In the British Medical Journal, someone said ‘this is a disastrous misapplication of guideline process, uh the evidence-based guideline process’. In the Lancet someone wrote ‘these shortcomings in the guidance process suggest it was driven by science but by ideology.’

So that must have been some ideological infiltration of the panel. I can’t… three of the clinicians uh caring for patients resigned before the guideline came up. Someday, I mean it’s not over, someday it will come out in a parliamentary inquiry or [inaudible]-like evaluation. I don’t know it’s not… It’s much bigger than me this. But why I am using this, is I’m saying that ideology rather than evidence, proper summaries of the evidence, can influence policy.

And you know there are people behind the scenes… - It’s very difficult to publish anything about this or criticize it in public – but people are saying, health professionals: ‘this is a failure of patient involvement’. And Allison Pilnick in her book ‘Reconsidering Patient Centred Care, between autonomy and abandonment’, considers this in detail. And Allison asks how a policy patient involvement that seemingly on the face of it to be morally incontrovertible, can fail to work in practice. She argues that the epistemics of experience over this can ultimately lead to patient abandonment or to care that fall short of professional standards. And this is really, really important.

Swinging back now to the post-covid condition. Long Covid is claimed by patient groups that it is a patient-defined disease. This is on all the Instagram posts and all the widely …., and the groups that are on the guidelines panel. But these groups have picked up the biomedical cause, the thing that I thought it was: that the virus was still in my body. They point blank disallow just the opening of the idea that it might be more related to more complex control systems in the brain and in how your expectations may influence this. And this is influencing research.

I quote from a recent publication in the UK. This is a note from the authors, and it was a survey on Long Covid: ‘We did not include specific measures of mood or of cognitive features such as symptom focusing (symptom focusing is the one thing that makes you more conscious of your symptoms). We did not include these measures as patient input into the design of the study saw this as potentially implying psychological causes of the symptoms.’

So, this sort of simplistic approach of you know the common sense trust common sense of Dr. Spock is wrong. And it’s influencing the research and the bullying is continuing. We produced a critical appraisal of research within Cochrane questioning a common theory in the public eye that microclots are the cause of the postcovid condition. And we looked at the research and it really isn’t well done. And we critically appraised it in a systematic way, and we were attacked bitterly by different groups. One PhD research clinician called our work the banality of evil [laugher in the room], referencing a Nazi administrator conducting genocide. And this person’s influential and has many followers on Twitter.

The difficulty with getting things published in this field is intense. I spoke with someone yesterday who said they can’t… they find it very difficult with mainstream journals to mention the PACE trial and if they do, the editors ask them to rearrange their words or what they say about it because there’s such a lot of sensitivity and uh... scared of the bullying and the avalanche of abuse that follows it.

I couldn’t get anything published but I then started working with a group of over 40 people who are so concerned about NICE and concerned about all these things. And they worked together and the Oslo chronic fatigue Consortium have published this paper which says … tries to give some light and more balanced information. These are real illnesses that people can recover from. It’s a scientific overview that is relatively straightforward to read.

In conclusion, we in medicine have been pretty slack with getting on top and taking into account the literature and the research that we produce over the years. We’re constantly producing new stuff and not taking into account what we’ve done already. Now there are fabulous methods for preparing critical systematic summaries and people like, the group of people, the collective, the Cochrane Collaboration has helped to disseminate this approach and these methods outwards. So, we have fabulous methods for preparing critical summaries of research in a body of research and now linked to transparent evidence to decision-making procedures. We need more work on positionality and ensuring guideline panels take conflicts of interest and ideology into account. And we need to be able to advance science without fear, retribution, in open dialogue in pursuit of truth not triumph.

[Applause]

Ends at minute 50.00.