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

[Hoopoe]

It's easier to claim to be a victim of the close-minded that want to suppress your innovative ideas, than to admit your ideas are the same old shallow prejudice without merit.

With these people it's always about their ego, and never about the needs of patients. And that's also why they are totally unable to create anything useful for us patients.

 

[Adrian]

And indeed, it reminded me of a bit from the opinion piece by the Oslo chronic fatigue consortium a while back, which was co-authored by Garner, as at the time thàt strongly reminded me of a common tactic by the far right, climate change deniers and other disinformation spreaders when they encounter pushback to their bullshit - calling for "reason" and complaining about limitations on their their "freedom"; positioning themselves as victims and restricted in their freedom of speech when their harmful nonsense is not accepted.

Sounds like the Toby Young and the free speech union that is involved in this activity. (I see them as saying they have a right to be nasty and inaccurate)

 

[Adrian]

Sense About Science US had a fight with SAS UK because the US entity published Rebecca Goldin's smack-down of PACE after I'd published my investigation. The Brits were very upset about that and made angry noises to the US arm. Sharpe wrote to them directly complaining about the piece because they also ran an editorial slamming PACE.

Interesting I hadn't heard that it just shows that they are a lobby group for members rather than concerned about science.

 

[Eleanor]

NB, Claire Fox, along with sister Fiona Fox (CEO of The Science Media Centre) along with Dr Michael Fitzpatrick (who trashed the new NICE Guideline and denigrated ME patients while positioning himself as 'the victim' of sick ME patients in 2 Telegraph articles when NICE was published) all have a background in the Revolutionary Communist Party (1970s Trotskyist splinter group) which produced the contentious online magazine Living Marxism, which is now the online magazine Spiked.

also along with Munira Mirza, who was director of the No. 10 policy unit at the time when Boris Johnson was scrawling 'bollocks' and 'Gulf War Syndrome' on a briefing about Long Covid.

 

[JohnTheJack]

Sounds like the Toby Young and the free speech union that is involved in this activity. (I see them as saying they have a right to be nasty and inaccurate)

Young completely jumped the shark during Covid pushing all sorts of nonsense including anti-vaxxer stuff.

 

[rvallee]

This freedom-to-question rang a bell, so I went looking.

And indeed, it reminded me of a bit from the opinion piece by the Oslo chronic fatigue consortium a while back, which was co-authored by Garner, as at the time thàt strongly reminded me of a common tactic by the far right, climate change deniers and other disinformation spreaders when they encounter pushback to their bullshit - calling for "reason" and complaining about limitations on their their "freedom"; positioning themselves as victims and restricted in their freedom of speech when their harmful nonsense is not accepted.



Of course this has nothing to do with their "freedom" (given their firm dominance in the last 30 years their posturing in the above quote is preposterous as well) and everything to do with wanting to be able to continue to use their psychiatric model and the accompanying treatment they profited from unhindered despite them being exposed as bullshit.

See also: the famous Public Service Announcement cartoon (image below)

Somehow reminds me of this weird tweet I saw yesterday, which I'm not sure is satire but it's definitely believable, about how people who know the clitoris is not real are oppressed and have their rights trampled on. By Big Clit, I guess. Of course they blame feminism for this.

Like you say, this stuff is exactly the same kind of weird language you see from people who hold fringe conspiracy BS opinions that lack evidence, even in this case when it's the completely dominant model. The Oslo letter talks about a different understanding of the illness, which is literally us, since their opinion is the dominant one, but they're claiming to be oppressed even while they have their way completely, which is basically what defines reactionaries. I've even seen this stuff in the context of fossil fuels, like they're the small guys not given a fair chance.

Basically this, except instead of the opinion column being cut, it's constantly over-hyped:

 

[Arvo]

Hah! It is the same utter certainty that they are correct, and nobody has the right to hinder their glorious endeavours.

Indeed! (See also: Elon Musk.)

When I saw Stockton Rush proudly show off his partially DIY built, one-button resurfacing, game controller-steered deep sea can, I was so strongly reminded of how some psychiatrist approach(ed) medical illness: simplistic, wrong and completely unsuitable, but utterly covinced that their kindergarten approach was visionary genius.

(These types really thought/think physicians are shortsighted and wrong when they treat illness biomedically; they think they work from "a flawed premise, that the biomedical model is an adequate scientific model for medical research and practice" and that they should accept the visionary genius view of the "truth" that all medical illness is for a large part psychiatric at its core, and that psychiatry has a key role to play in treating it. I wrote earlier on this here.)

 

[Arvo]

But these guys were all something far worse, far more dangerous: people who believe absolutely that they are doing good and therefore have the right to impose their beliefs on others.

Not so much "doing good" as "being right".

 

[Adrian]

Young completely jumped the shark during Covid pushing all sorts of nonsense including anti-vaxxer stuff.

Yes it shows the attitudes of SAS that they would want to partner with him on an event when he has been pushing anti-science

 

[JohnTheJack]

Yes it shows the attitudes of SAS that they would want to partner with him on an event when he has been pushing anti-science

Yes, and the weird connections that continue to exist between the Furedi 'entryists' (Foxes, SMC, SaS) and between them and off-the-wall extreme right (Spiked and Young).

 

[Dolphin]

From: Anika Abedin
Date: Wed 17 Apr 2024 at 09:43
Subject: Hear from Paul Garner on How We Learned to Question Medicine

Dear friend,

Join Sense about Science Trustee Paul Garner for the second Science, Scepticism and Free Speech lecture. In How We Learned to Question Medicine, Paul will advocate for “scepticaemia”- a critical approach to ideas and data - and talk about the challenge of ‘belief mis-representation bias’ in research.

Professor Garner, former coordinator of the Centre for Evidence Synthesis in Global Health, will share examples of how insisting on robust evidence and research has led both to scientific breakthroughs and the exposure of malpractice. The lecture will take place at the Art Workers’ Guild (6 Queen Square, London, WC1N 3AT) at 7.30pm on Wednesday 24 April, followed by a Q&A session.

Book your place


If you can’t attend in person, we will send you a Zoom link to join online, free of charge, shortly before the event.

The first lecture, What is Science and Why should we care by Professor Alan Sokal, is now available to watch on YouTube.

Best wishes,

Anika Abedin

Projects and Events Officer
Sense about Science

 

[NelliePledge]

I wonder if those attending will be able to ask questions?

 

[Sphyrna]

This lecture has been made publically avaliable by now.



I'm unable to watch it myself, but I would be interested whether he brings up any new criticisms of the new NICE ME/CFS guidelines that had not yet been adressed in the rebuttal by Barry, Finlay et al. directed to White et al.

Also, what's with the comment by George Davey Smith? Did he at any point issue his own criticism of the new NICE guidelines, or is this just him still being butthurt over cutting his teeth on criticism of the PACE trial many moons ago? That said, for all I know, he might be referring to something entirely unrelated.

 

[Trish]

I've glanced at some of the transcript. It looks like he's gone full-on attack on post viral stuff and the NICE guideline. Nasty. Not sure I can bear to watch it.

 

[EndME]

This lecture has been made publically avaliable by now.



I'm unable to watch it myself, but I would be interested whether he brings up any new criticisms of the new NICE ME/CFS guidelines that had not yet been adressed in the rebuttal by Barry, Finlay et al. directed to White et al.

Also, what's with the comment by George Davey Smith? Did he at any point issue his own criticism of the new NICE guidelines, or is this just him still being butthurt over cutting his teeth on criticism of the PACE trial many moons ago? That said, for all I know, he might be referring to something entirely unrelated.

On Twitter Paul Garner has written multiple different posts quoting this video. They state

"We have fabulous methods for preparing evidence based guidelines, but we need to take conflicts of interest and ideology into account. NICE ME/CFS Guidance are a parody of these approaches #mecfs #nicecoms"

"we need patients and doctors to open up the contribution of psychophysiological mechanisms in #longcovid. Ideology is biasing research against approaches that may help"

"NICE ME/CFS Guidance is a failure of patient involvement. They remove hope and the possibility of recovery, and as such is harmful to public health. Patients are denied access to evidence-based treatments."

www.twitter.com/PaulGarnerWoof/status/1785614317909311943
www.twitter.com/PaulGarnerWoof/status/1785615675186143451
www.twitter.com/PaulGarnerWoof/status/1785614170177573078

For my own sanity, I quickly looked at the conflict of interest statement in Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

• Competing interests PW was a coauthor of trials of both graded exercise therapy and cognitive behaviour therapy, including the PACE trial, is a trustee of the Voluntary Hospital of St Bartholomew’s Charity, was a previous member of Independent Medical Experts Group, which advises the UK MoD on its Armed Forces Compensation Scheme, and receives personal consultancy fees from Swiss Re reinsurance company. BA was a centre leader in the PACE trial. AJC reports grants from NIHR (Physio 4 FMD) and CSO (Long Covid Cognitive phenotyping). AJC is a paid associate editor of JNNP and unpaid president elect of the Functional Neurological Disorders Society (FNDS), he gives expert testimony in court on a range of neuropsychiatric topics on a 50% claimant 50%: defender basis. He is the author of a self-help book based on CBT principles for treatment of FND (no royalties taken). DJC declares grants from Pfizer and Aptinyx; consulting fees from AbbVie, Allergan Sales, Heron Therapeutics, Eli Lilly and Company, Aptinyx, H. Lundbeck A/S, Neumentum, Pfizer, Regeneron Pharmaceuticals, Samumed, Swing Therapeutics, Tonix Pharmaceuticals, Virios Therapeutics. Fees from Fasken Martineau DuMoulin, Kellogg, Hansen, Todd, Figel & Frederick, PLLC, Marks & Clerk Law, Nix Patterson, Pfizer, Zuber Lawler & Del Duca. JC reports consulting fees from Bial, and honoraria from Janssen, Bial and Brittania. BAD reports NIH R13 infrastructure grant for 2022 Functional Neurological Disorders Society meeting in Boston. TC was co-investigator of several trials of behavioural interventions for CFS/ME, including the PACE trial, has received royalties for several books and book chapters on CFS/ME and received payments for workshops on CBT for CFS/ME. BAD is on the board of directors of the FNDS and receives royalties from Oxford University Press for 'Psychogenic Nonepileptic Seizures: Towards the Integration of Care'. She does paid consultancy for Bioserenity (EEG interpretations) and Best Doctors (clinical consultations). She received support to attend the American Epilepsy Society Board of Directors meeting in 2021. She chairs the data safety monitoring board of the DSMB NIH-ESETT trial 2015–2019, and received travel expenses to attend the American Epilepsy Society Board of Directors FNDS meeting and Epilepsy Foundation of New England PAB. MJE reports royalties from Oxford University Press for the book 'The Oxford Specialist Handbook of Movement Disorders', consulting fees from UCB (personal) and Merz Pharma (to his institution), honoraria from the International Parkinson’s Disease and Movement Disorder Society, medicolegal fees for personal injury and clinical negligence cases, support to attend meetings from the FNDS, leadership roles in International Parkinson’s Disease and Movement Disorder Society and Dystonia UK, and is a medical board member of FND Action and FND Hope, and board member of the FNDS. JE was the President of the Faculty of Sport and Exercise Medicine at the time of the Royal College of Physicians’ review of this guideline and submitted comments on behalf of the Faculty. He is Medical Director of a company which occasionally manages patients with CFS/ME. AJE has received grant support from the NIH and the Michael J Fox Foundation, personal compensation as a consultant/scientific advisory board member for Neuroderm, Neurocrine, Amneal, Acadia, Acorda, Bexion, Kyowa Kirin, Sunovion, Supernus (formerly, USWorldMeds), Avion Pharmaceuticals, and Herantis Pharma, and publishing royalties from Lippincott Williams & Wilkins, Cambridge University Press, and Springer. He received an honorarium from Avion. He cofounded REGAIN Therapeutics (a biotech start-up developing nonaggregating peptide analogues as replacement therapies for neurodegenerative diseases) and is co-owner of a patent that covers synthetic soluble nonaggregating peptide analogues as replacement treatments in proteinopathies. PF declares consulting fees from FADL Forlag, Munksgaard, Ny Nordisk Forlag and Arnold Busk, an honorarium from Lundbeck Pharma,and medicolegal fees from Retslægerådet. SF was a co-founding member of the GRADE working group and a member of the GRADE guidance group. She has been engaged in debates related to the evidence regarding CFS/ME for many years from a biopsychosocial perspective. PGlasziou declares an NHMRC Investigator Award: 'Neglected Problems in Health Care' supporting his salary; grants from the National Heart Foundation, Commonwealth Department of Health and WHO for work unconnected to this paper, and is a board member (unpaid) for Therapeutic Guidelines. IH has an NRS Fellowship from CSO, has been paid for medicolegal consultations, receives travel expenses for attending medical conferences and one honorarium from Bristol NHS Neurology Department, and is on the board of Fowler’s syndrome UK Charity. WH was a member of the 2007 NICE Guideline Development Group, and is Chief Medical Officer of LV=, an insurance company. PH was part of the steering committee of the German clinical practice guideline on functional somatic symptoms. MH reports fees for medicolegal expert court reports (none concern CFS/ME). HK reports grants from ZonMw, Stichting NKCV, MS Research, and Dutch Cancer Society, was coauthor of trials of cognitive behaviour therapy, reports royalties for a published treatment manual for CBT for fatigue in CFS/ME, and an honorarium for a lecture from Intercept Pharma Deutschland. A Lehn is an unpaid director of the FNDS. AL reports grants for investigator initiated research grants from Gilead Sciences, AbbVie and Sequiris. AM has been on a trial steering committee for a trial of graded exercise therapy, was formerly the Chair of the British Association for CFS and ME (BACME) and Principal Medical Adviser for Action for ME. IM has been paid honoraria by The@WorkPartnership for lectures on the occupational health management approach to managing long-term conditions (including CFS/ME) in the workplace, is the Academic Dean of the Faculty of Occupational Medicine and commented on the NICE guidelines on the management of CFS/ME on behalf of the Faculty. MM received an honorarium for a lecture in 2020 for ViiV, received financial support to attend the EACS 2021 conference (virtual) and ViiV EACS 2019 conference, and was a centre co-lead for the PACE trial. IN reports research grants received from NIHR and MRC to conduct clinical trials on complex interventions, not specific to CFS/ME, has served on several Data Safety Committee as an independent member for trials on complex interventions, one of which related to CFS/ME, and is Co-Chair of Wellcome Trust/Indian Alliance DBT Team Science Grant and Clinical and Public Health Research Centers Grants Committee. DLP reports grants from the National Institutes of Health and Sidney R. Baer Jr. Foundation for work unrelated to this paper, has received honoraria for continuing medical education lectures at Harvard Medical School and the American Academy of Neurology, royalties from Springer Nature for a textbook on Functional Movement Disorder, is a member of the Board of Directors of the FNDS, senior (paid) editor of Brain and Behavior and is an Editorial Board Member of Epilepsy & Behavior. WP reports occasional paid lectures pertaining to FND (most payments donated to charity), has received fees for expert testimony in court on a range of neurological topics including FND, is a board member of FND Hope and FND Action, and is on the board of directors of the BNPA. MR reports a grant from Elsevier, royalties from Oxford University Press, honoraria from UCB Pharma, LivaNova, Eisai, and Angellini and sits on a data safety monitoring board for IqVia Medtech. WR reports grants from the German Research Foundation, royalties from books and fees for German legal opinions. AS was a member of the 2007 NICE Guideline Development Group for CFS/ME (CG53)]. TS reports being a member of the Board of Directors and Membership and Liaisons Committee of the FNDS and being a member of the Functional Movement Disorders Study Group (Movement Disorders Society). MS was a co-principal investigator for the PACE trial and has led a trial of CBT for CFS/ME. He is current President of the European Association of Psychosomatic Medicine Current (unpaid) and was the previous President of the Academy of Consultation Liaison Psychiatry (unpaid). BS is a Council Member of the Association of British Neurologists and Medical Expert Committee member of FND Hope UK. JS reports grants from Scottish Government and NIHR; royalties from UptoDate, the Donald Baxter Lecture Award, Montreal, titled 'Multiple Sclerosis at the limits', personal fees from expert witness work, Secretary FNDS, Medical Advisor FND Hope, Medical Advisor FND Action, running a self-help website for patients with FND. DTW reports consulting fees for expert opinions on patients in a prolonged disorder of consciousness, fees for occasional medicolegal and personal injury cases, member of NIHR grant Programme Supervisory Committee of a trial of vocational rehabilitation after head injury, Deputy Secretary to British Society of Physical and Rehabilitation Medicine (unpaid) and is employed at a nursing home where he sees 2-3 patients with functional disorders. SCW reports honoraria from two talks on psychological impacts of COVID to Swiss Re during the pandemic, but neither covered CFS nor Long Covid. He is on the Board of the ESRC and am also a member of the Judicial Appointments Commission for which he receives renumeration. None are relevant to this paper. SCW is also on the Board of the South London and Maudsley Foundation NHS Trust for which he receives no renumeration. SCW reports receiving grants to research CFS and has published over 150 papers on this subject, including being an author on several RCTs relevant to this submission, but none within the last 36 months. VW is Head of the Collaborative on Fatigue Following Infection (COFFI) (unpaid). AZ reports fees for expert witness medicolegal reports, but not in cases specifically focused on CFS/ME. No other authors declared any relevant competing interests.

 

[rvallee]

Ideology is biasing research against approaches that may help

It's always projection with these people.

Patients are denied access to evidence-based treatments.

Just absurd level of projection and complete lack of self-awareness.

 

[Evergreen]

I've glanced at some of the transcript. It looks like he's gone full-on attack on post viral stuff and the NICE guideline. Nasty. Not sure I can bear to watch it.

Can you direct me to the transcript?

 

[Kitty]

It's always projection with these people.

Just absurd level of projection and complete lack of self-awareness.

Those quotes you posted are so ridiculous I actually laughed.

This kind of nonsense is the preserve of the desperate-for-attention, and I'm not going to reward him with mine.

 

[Trish]

Can you direct me to the transcript?

I just clicked on the link on YouTube. It's pretty hard to read.

 

[Jonathan Edwards]

It is quite bizarre to listen to him:

Oh these dreadful people with ideologies about little green men under the bed. Rigorous science, in the form of me peeping in the night, proves that they are little red women after all...

And so on.

I think he has lost it completely.