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

Can I clarify from UK people, Paul was offered a councillor (?legal rep) at the Liverpool School of Tropical Medicine or did the journalist of The Post get this mixed up with counsellor. (Oops - poor journalistic skills)

I think if he got emails of pics of guns and threatening harm to his person at his work place, I can understand he felt threatened and I would be concerned too. I am sure his workplace would find this disruptive, as he was busy getting cyber-bullied on his work email, instead of doing his paid work. As far as I know, no pwME arrived at the LSTM with anything that could be considered threatening or carrying out a plan to harm and kill him. That is an online threat to a person, indirect, not direct, and so is essentially cyber-bullying.

Did he get them at home (yes, because he is a tweeter and he was on FB, I presume)

He consulted the police because he is an esteemed epidemiologist and made himself into the public face of LC by going on the BBC and international TV, very early on, with his recovery narrative - so more opportunity for threatening emails etc.

These emails/tweets do contravene the Digital Harm’s Act (what we call it in our country). The police decided it was a reasonable complaint and tried to find the threatening poster/s via the UK and Interpol cybercrime units. What came out of it? Did they find this person and serve notice? Did the emails, tweets threatening harm and death stop? Who knows?

Are they ever likely to stop - no, because that is twitter. You have to face the reality of your situation, if you put yourself out to the world on social media, you might receive negative responses including extreme ones. But the extreme ones does not represent the whole or even the ME community. Has he not heard of bots and malcontents who like to sew division. Especially around covid related matters.

Sorry Paul, not everyone agrees with you but as you say this is something you feel very strongly about and have chosen to campaign about (LP is a treatment for ME/CFS/LC) after the support of Live Landmark, who happens to have psychology degrees up to doctoral level - so what? Many pwME and advocates have degrees and doctorates in biomedical science or are senior consultants in their fields of medicine and your lived experience is not better than our lived experience just because you “recovered”. You choose not to look at the international reports of harm for pwME, you discount them, so your critical reasoning has failed you.

You forgot to say you were also the head of the Cochrane Review of EBM and how you and your organisation has failed in their mission statement to provide quality EBM advice to the ME community including doctors and other health professionals and the papers that all pwME are entitled to read. And you’re campaigning against the NICE guidelines with colleagues in the psychosomatic field of psychiatry and still weighing and supporting their opinion against the very clear and insurmountable EBM for biomedical causes of ME/CFS and LC. Although you are entitled to your beliefs, they are beliefs, not facts and you are abusing your high level of authority in the medical profession to promote non-EBM medicine (and psychology and psychiatry)

I am very happy you are feeling so hale and hearty and feel obliged to continue to put down a marginalised, vulnerable patient group against your Hippocratic Oath. Ethically you are very challenged. Yes, we do have a culture but this seems quite different to your privileged one. Are we trying to cancel your culture? No, we are trying to inform you of the risk to pwME/LC, but you have clearly made your position clear and I am sure will enjoy becoming more angry and energised by the continued aggravation from ME advocates in everything you do with respect to LP and psychosomatic medicine.

 

I think that's distinctive UK phrasing, so we might assume the email and possibly the image originated in the UK.

No optics mounted on rail, magazine ejected but no trigger discipline, identifying tattoo. Weak effort.

Select fire switch and folding stock = image reversed. If this were a real weapon it would be something easily purchased at the supermarket in <ahem> certain countries, but not in the UK.

It's almost certainly an imitation weapon eg Airsoft. I would be highly surprised if the person in the image had ME/CFS.

 

Indeed.

Actually, the police are involved in a neighbour's complaint about four children aged between about six and 10 years old, who sometimes ride up and down our cul-de-sac on the two bikes they possess between them. This annoys her.

It's possibly the case that police involvement doesn't equate to police action. Still, the lady in question really enjoys being able to tell anyone who'll listen that she's reported them to the law.

 

Might be the only one that's not that bothered with this. They seem to be throwing everything and the kitchen sink at it to keep some credibility but have to find ever more obscure publications to do so. Also, I don't think shining a light on their research to people outside their bubble is exactly going to be working well for them. Especially with the growing number of experts falling ill with LC or having it turn to M.E.

 

Yes, and also there has been wider criticism of Garner that was misguided in tone and was always going to be bad for patients, that fell well short of anything threatening or abusive. Stuff like that can encourage other people to then go further. Some people here have not liked me going on about this in the past, but it seemed so clearly self-harming that I was stunned others weren't more concerned.

The e-mail quoted from in this article is unlike anything I've seen or heard about before. Any patient appalling enough to send something like that should be utterly ashamed of themselves, and they should be tracked down and prosecuted. If Garner is getting e-mails like that, that could help explain some of his own responses.

There are some troubling things about the way Garner has behaved, and that warrant criticism, but there's also been a lack of empathy for him and the weird experience he's had amongst some patients online imo. I think that if there'd been more empathy from the start we'd probably be in a better place now.

The number of patients who never get the opportunity to have their voices heard in the way of those supposedly being silenced is pretty high.

The journalist talking of them being "blocked from public debate" is a bit annoying given the way real debate around ME/CFS is so often evaded.

I couldn't see the bit you quoted in the article. I think it was from someone here?

It would be good to be as cautious as possible in criticism here.

I only quickly looked through this thread but thought that was some needlessly strong language here.

 

Shame it didn't have "innit" at the end to clinch it
(My comments above were a bit of "fun" - don't think there's a glorious history of successes with past internet manhunts !!)

 

Derek Hatton?

 

shame the journalist didn't ask any of the ME biomedical researchers if any of them had received any similar threats; they could start with the CureME project at the London School of Hygiene and Tropical Medicine.
https://cureme.lshtm.ac.uk/about-us/cureme-team/

(I think the only reason Garner is given such credence is because of his professional standing at the Liverpool School of Tropical Medicine).

the journalist might also like to watch this video about similar claims from Garners new double-act partner Michael Sharpe;
https://www.s4me.info/threads/response-to-michael-sharpe’s-claims-of-harassment.8850/

I can't find it right now but a few years ago when similar claims were being made, there were biomedical researchers who made statements that they had never received any kind of threats (might have been MERUK?).

 

These quotes are from a Comment by Carol Binks (collated by Carol) to a Times article last year:



The ME/CFS Biobank:

“We do not comment on other's work except via academic publications, but are always happy to talk to the media, both about our own biomedical research and about the amazing kind community of #pwme [ME patients] who our nurses see every week, and who oversee our work through our Steering Group”





ME Research UK (BMJ Rapid Response):

'Harassment of researchers'

“Our charity has been funding biomedical ME research studies for 17 years, and has supported projects in the UK and overseas. In that time none of our researchers has complained to us of campaigns of harassment, whether from patients or anyone else.
Robust individual exchanges of views may occur from time to time, but these are part of the terrain when people feel passionately about an issue; they may even be welcome as a valuable addition to the scientific debate”

28 June 2021
Jonathan Davies
Chartered Accountant
Chair of Trustees, ME Research UK
This quote is a Rapid Response by Jonathan Davies to an article in the BMJ by Melanie Newman called 'Chronic fatigue syndrome and long covid: moving beyond the controversy', which focuses on Michael Sharpe's complaints about ME 'activists'.
Jonathan Davies' BMJ Rapid Response
https://www.bmj.com/content/373/bmj.n1559/rr-13







Professor Chris Ponting, Deputy Chair of UK ME/CFS Research Collaborative stated publicly on 12/5/2019 (at #MillionsMissing Glasgow 2019)

“Can I state categorically that ME scientists are not being harassed by the ME community. We are listening to legitimate questions and concerns about science.”




Derya Unutmaz MD, Immunlogist, researches T cells:

“On the contrary, #MECFS patients are very supportive of our research. They provide us with great insights into this disease and even give new ideas. I personally learned a lot from the ME/CFS community. The interactions also provide us with the motivation we need – science is hard!”



Nicola Clague-Baker, Chartered Physiotherapist, 'PhysiosforME' org, has publicly stated:

“I am an #ME researcher and I have never been harassed by #pwme [people with ME]. I find #pwme the most helpful, informative, enthusiastic and caring people I have ever worked with”
@PhysiosforME

https://twitter.com/user/status/1450337131562405891






'The 2016 FOI Tribunal - QMUL v the Information Commissioner + Matthees (PACE Trial) - ruled that the assessment of 'ME activist' behavior was “grossly exaggerated” and that the only actual evidence was that an individual had heckled Professor Chalder at a Seminar.

These overblown claims of 'harassment' have been used for years by researchers who don't like their work being legitimately criticised, and subsequently by some journalists looking for a juicy story.'



'Sir, The announcement of a £3.2 million of funding for a genetic study into ME is a massive step forward, but until there is proper recognition among healthcare professionals that ME is physiological not psychological, and that graded exercise is harmful, those living with ME will continue to suffer at the hands of some well-meaning healthcare professionals.
Carol Monaghan, MP (SNP)
Chairwoman, All Party Parliamentary group on ME.




I have the sources for these, either link or screenshots, but will take me time

 

A rather generous description of them.

My bolding

 

I think that the specifics of the promotion of 'positive thinking' to ME/CFS patients has been one of the most destructive things to surround the condition, and an important part of why things are so bad now. But I also think that there is doubt here, and maybe I'm wrong. Some ME/CFS patients (for whatever criteria) may really benefit from a form of 'positive thinking', and that 'negative thinking' could play an important role in keeping some patients ill. Even without all the uncertainty here is would be difficult to know how to best measure and balance out all the varying harms and benefits that can occur here. It's very hard to be certain of anything around ME/CFS imo.

Garner's story of a relatively short bout of post-viral illness, followed by recovery is not that unusual and his beliefs about what helped him recover may be as misguided as the many other patients who recover and claim that whatever implausible intervention they were doing at the time helped cure them. Or he could be right. I think that it would be good for there to be more acknowledgement of the uncertainty here.

edit: Just to add that I'm not sure Garner uses the label 'positive thinking' himself, but that it seems an ok short label to describe the gist of his story for this discussion, even if a longer and more detailed description might be ideal.

 

No illness can be cured by stopping believing in it.

If someone with hypochondria is misdiagnosed with ME/CFS and gets better by stopping worrying about their health, it says nothing about ME/CFS.

In Garner's case it looks like he recovered in the time window where this usually happens. It's very unprofessional for him to go on a media tour claiming he knows how to make recoveries happen.

 

Meanwhile on twitter a GP who understands LC and runs one of the better (private, I think) LC clinics mentioned that she has had stalkers, threatening comments and people trying to book appointments to confront her.

Long Covid makes a lot of people irrationally angry and the possibility shouldn't be excluded that it's the same underlying issue, that simply doesn't discriminate about substance. Any mention of LC makes anyone a target.

Not saying this is it, but there is a lot of verbal abuse regarding anything that doesn't go full Hopium. I've seen several comments from long haulers who are vocal getting similar threats.

It remains that our opposition to this is and has always been that it is simply wrong, harmful pseudoscience and that we do not consent to being misrepresented and mistreated.

There is abundant evidence of this going back decades, and the quackery that Garner is pushing is the current model anyway, we already know it doesn't work, it doesn't need to be "tried" anymore, there is nothing left to try, so much that most of the studies are basically identical to one another despite amounting to several hundreds.

It's clearly a fully circular process that never gets anywhere and has no respect for the patients. This is what we tell them. They can be angry all they want, this is cheap pseudoscience and we do not consent. Continuing to coercively impose this on us, or anyone, merits a strong counterreaction as it makes a mockery of informed consent, not even basic consent. Much stronger than we have been doing, but they know we are too ill to fight back and clearly abuse our disabilities against us. That alone is disgustingly immoral.

 

https://www.youtube.com/watch?v=SNDTRLfh-Vo

Just braced myself and actually found this useful info about who the man PG is!
Sporty, military enthusiast, (Aka Alistair Miller?) lover of attention- camera microphone hugger- does rather like to embrace controversy and be the centre of things.....

A real 'go getter'.... Celebrity GET ME out of here type?
I wouldn't put it past him applying.

 

Just to square the circle on this do we know what Sharpe thinks of the Lightening Pricess and if he supports Paul Garner and the Norwegians?

is all of this ‘competition’ for the long covid dollar or only an issue for the but that’s superfluous to them ie don’t care if it’s physios, CBT or standing in circle commercial pyramid schemes people get sent to as it doesn’t interfere with ‘their bit’?

 

It occurred to me that it wouldn't be difficult for a fan of the BPS crowd to do this to someone using treatment methods they disapprove of.