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

Lou B Lou said:
The Times, 19th November 2022:

No wonder many in the ME community consider the promotion of mind-body work heretical.'
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Francesca still blaming ME sufferers for it taking her 16 months to recover from Long Covid.

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Is she describing 'stop' and visualisaton techniques - the Lightening Process?


Definition of heretical
of or relating to adherence to a religious opinion contrary to church dogma : characterized by heresy
heretical writings


2
: of, relating to, or characterized by departure from accepted beliefs or standards : unorthodox
It would be heretical to suggest changing company policy.

Heretical Definition & Meaning - Merriam-Webster
 
Maat said:
Is she describing 'stop' and visualisaton techniques - the Lightening Process?


Definition of heretical
of or relating to adherence to a religious opinion contrary to church dogma : characterized by heresy
heretical writings


2
: of, relating to, or characterized by departure from accepted beliefs or standards : unorthodox
It would be heretical to suggest changing company policy.

Heretical Definition & Meaning - Merriam-Webster
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Yes, Francesca Steele did Lightning Process. I'll make that clear in the post.

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Does anyone know the exact date that Paul Garner started his ‘mind therapy’ I think it was late October 2020 but need to know for sure as am giving information to a Journalist. As Garner was emailing me prior to this date saying he was walking 5 km daily and that he had started riding a bicycle. also that he “didn’t have problems” with “pushing through” i’ve got those emails still but I need the date he flip-flopped into pseudoscience mind-therapy. as well prove he is lying through his teeth
 
Brendan Rob said:
Does anyone know the exact date that Paul Garner started his ‘mind therapy’ I think it was late October 2020 but need to know for sure as am giving information to a Journalist. As Garner was emailing me prior to this date saying he was walking 5 km daily and that he had started riding a bicycle. also that he “didn’t have problems” with “pushing through” i’ve got those emails still but I need the date he flip-flopped into pseudoscience mind-therapy. as well prove he is lying through his teeth
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Yes I know people who saw him exercising regularly, in public, around July onwards. He was doing more than 5k.
When did he go scuba diving and catch Dengue fever? October?
 
September 4 Garner said:
BMJ Paul Garner on long haul covid 19 - Don't try to dominate this virus, accommodate it
“Has covid-19 gone?” My first thought every morning for six months. A few weeks ago, I was jubilant. The muscle aches had evaporated, my head was clear. I announced this to Rachael, a friend who knows chronic fatigue well. “Fantastic, Paul. You have found your baseline.” Crestfallen, I realised this was not the end; it was the end of the beginning.
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I was desperate, tired, grumpy. I wanted someone to help me pace and thought occupational health could refer me to a specialist service. Instead, I was told I needed a course of cognitive behaviour therapy (CBT).

Did I? I turned to Cochrane, the first stop for reliable current medical thinking and evidence. “CBT facilitates the identification of unhelpful, anxiety‐provoking thoughts, and challenges these negative automatic thoughts and dysfunctional underlying assumptions”. Crickey, I thought. Having recently suffered a 3-day relapse after a 10-minute bicycle ride, I peeked at the Cochrane review of “exercise as treatment for chronic fatigue:” the conclusion was that patients benefit, feel less fatigued, and that there is no evidence that exercise worsens outcomes (although I understand this review is being updated).

This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area.
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I thought this was going to be a short illness. I wrote my first opinion piece after six weeks of unrelenting illness, and am now writing at six months, with an illness that resembles ME/CSF. What will I write in six years? Will I be better, with memories of a dystopic world when I became infected as part of a government strategy to develop herd immunity? Or will I be reflecting wistfully on my lovely life that vanished one day in March 2020?
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Edit to add:
September 29
Paul Garner and colleagues describe how a self-help pacing group has helped them manage their long covid
Four of us, all struggling with random, vicious symptoms, and finding it difficult to pace alongside family, life, and work commitments, decided to work together. We set up our own self-help pacing group twelve weeks ago: a community of practice to swap stories, share experiences, and provide mutual support.
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We all thought we were going to get better soon, but gradually became open to the probability that it might take much longer, perhaps twelve months.
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We also witness each other improve, and are able to point this out, which gives a tremendous boost to our collective mood.
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We are healing, thanks to a little help from our friends.
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From a post earlier in the thread, Garner quoted in December
A psychologist friend explained to him how much fear can have an effect and strengthen itself, and that it is better to just lie down when you are exhausted and think about beautiful things. "In October I quit Facebook, and also the group with three fellow sufferers, which initially helped me well." He focused on what went well throughout the day, and no longer kept track of how things were going every day, but per week. In addition to getting a little more exercise - he now walks and cycles 20 minutes a day - that acceptance is key, he says. "I was healed within three weeks."
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He was in Grenada in November.
A clever friend found a Facebook post from November 25th 2020 of Garner in Grenada
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WHO Press conference 30 October 2020
First, Professor Paul Garner from Liverpool School of Tropical Medicine, who has himself been recovering from COVID-19 since March. Paul, the floor is yours.

PG Thank you, sir. It's a great honour to join you. I respect your leadership and your organisation's pivotal role in this pandemic. I am an infectious disease epidemiologist. I helped set up COCRAN [?] and I work with you in guidelines in infectious diseases.

00:05:17

I became unwell in March. I was fit and well and I assumed that this COVID illness would be - I'd be able to brush it off my shoulder. For four months I went through cyclical bouts of dreadful fatigue, sweats, headaches, unable to move, mood swings and that went on for four months and then I had another three months, completely exhausted.

When I overdid things the illness would echo back, it would come back and it was completely unpredictable and for the last two weeks things have been improving and I'm beginning to get my sense of humour back and am beginning to take gentle exercise.

I never thought I would have seven months of my life wiped out by this virus. It's just gone, evaporated. As you have said, sir, long COVID is a huge array of symptoms. I have one particular form. Others have damage to the heart, persistent breathlessness, problems thinking and other evidence of organ damage.

00:06:42

But we must remember, post-viral syndromes are not new but what we have here is just a huge scale of people that are suddenly severely disabled, a wide variety of people that have never experienced long illness but with a level of disability that hasn't been seen this century.

Last century it was seen with the world wars only and it affects everybody; drivers, people working at restaurants, building sites, hospital porters, doctors, everybody everywhere is getting this. So I would just like to say that I respect that WHO recognise this; this is very important.

Health professionals, families and patients need to know it exists, that it has many faces and it isn't in your head. Employers and society need to accommodate this and we need, as you say, sir, sensible, supportive primary health services to help people convalesce and get better. Thank you for asking me to join you today.
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So, in 30 October, Garner said that he had begun to improve two weeks ago.
 
Lou B Lou said:
Francesca still blaming ME sufferers for it taking her 16 months to recover from Long Covid.
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Curious how Steele's story changed over the course of four months. Archive links:

Times article (November 2022) | Earlier Telegraph article (July 2022)

In the earlier article, she describes a wide variety of interventions, from slightly quackish to entirely quackish including antihistamines, brain retraining courses, low-dose naltrexone, "biodynamic touch" therapy and hyperbaric oxygen, and says that "[a] few months on, I am getting better – about 80 per cent back to my old self. . . [m]ost of it helped a little. . . I now feel time is the missing ingredient to getting me to 100 per cent well, which luckily comes free" and said that she had improved to "about 80 per cent"; in the later article she is at "80-90 per cent".
 
Brendan Rob said:
Does anyone know the exact date that Paul Garner started his ‘mind therapy’ I think it was late October 2020 but need to know for sure as am giving information to a Journalist. ....i’ve got those emails still but I need the date he flip-flopped into pseudoscience mind-therapy. as well prove he is lying through his teeth
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Hi, I'm new here. I've been lurking for a while. I hope to contribute to other discussions over time. I used to have M.E (for many years). I don't now so maybe have a different perspective to some here.

Please don't do this (talking to a journalist about PG). You can if you want to but I would ask you please not to.

There is arguing with the science you don't agree with and there is behaviour like this. What do you feel will be achieved? Many people with M.E have varying symptoms over time (sometimes over months but sometimes in one day). That is used to tell people their symptoms aren't real, when that isn't the case. So don't go out there getting a journalist on side to say PG's symptoms varied. What will that achieve? By trying to discredit someone's personal story, you risk turning more people against the community. Who are you to say what PG experienced or didn't experienced, anyway - you might not want to hear that but its the truth, just as some others have differences in their symptoms and don't understand why but have a right to be respected as being unwell.

If you do this, it feeds into the idea that people with M.E are out to get researchers. You risk actually putting others off in case they put a foot out of line and also have their lives dug into.

Ad hominems are made by people who are losing a debate. Don't play that game. Very disappointed the charities aren't putting out a clearer message about this to prevent harm being done.
 
Friendswithme said:
Hi, I'm new here. I've been lurking for a while. I hope to contribute to other discussions over time. I used to have M.E (for many years). I don't now so maybe have a different perspective to some here.

Please don't do this (talking to a journalist about PG). You can if you want to but I would ask you please not to.

There is arguing with the science you don't agree with and there is behaviour like this. What do you feel will be achieved? Many people with M.E have varying symptoms over time (sometimes over months but sometimes in one day). That is used to tell people their symptoms aren't real, when that isn't the case. So don't go out there getting a journalist on side to say PG's symptoms varied. What will that achieve? By trying to discredit someone's personal story, you risk turning more people against the community. Who are you to say what PG experienced or didn't experienced, anyway - you might not want to hear that but its the truth, just as some others have differences in their symptoms and don't understand why but have a right to be respected as being unwell.

If you do this, it feeds into the idea that people with M.E are out to get researchers. You risk actually putting others off in case they put a foot out of line and also have their lives dug into.

Ad hominems are made by people who are losing a debate. Don't play that game. Very disappointed the charities aren't putting out a clearer message about this to prevent harm being done.
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I think they’re speaking to a journalist about how what he was doing in real life was different to the story he gave in the press. Which is something widely discussed at the time locally, as he was publicly doing lots of exercise.
 
Hi @Friendswithme.

I disagree with your analysis. (You are probably aware that I am a professor of medicine.) Paul Garner's behaviour has been absolutely terrible. The level of hypocrisy is astonishing. He is supposed to be an expert on evidence quality in medicine yet is prepared to tag his name to almost anything that denigrates people with ME/CFS, however appallingly bad the evidence.

A clear demonstration that Garner's story of so-called recovery from mind-body intervention is inconsistent seems to me entirely legitimate. Garner has been trying to make use of his personal story from a position of authority as if it was scientific evidence when he above anyone should know that he should not do that.

The behaviour of the ME/CFS community has not deterred any good researchers. It has finally pushed out a lot of very bad research and good researchers are increasingly signing on and quite a few are members here - including of course Professor Ponting, who became interested because of the plight of someone who has long been a member here and part of the campaign for good science rather than rubbish psychology.
 
Crossposted with the 2 posts above this one.

Hi @Friendswithme, welcome to the forum.

I see this a little differently.

We have a forum rule that does not allow speculation about any individuals' health, but does allow careful discussion about information that is in the public domain.

Rule 2: Privacy
a) Careful disclosure and discussion of others' personal information
Personal information of identifiable individuals (including information about contact details, health and family) may only be posted if it is either in the public domain, or the member has permission to share it, and if it is posted with care. Posts from other social media that contain personal information may be linked, but should not be screenshot or copied, so the author retains control of the information. Discussion of such personal information must be justified by wider implications relevant to the forum's purpose and should avoid speculation.
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In the case of Paul Garner, I think it's legitimate to collate his own published articles about his experiences with Long Covid, including his public switch from thanking and praising people with ME/CFS for help with pacing advice, and his switch to denigrating that advice and attributing his recovery to what he now publicly calls neural plasticity.

It is up to a journalist what they make of that series of public articles, and Paul Garner's openly declared campaign against the NICE guideline and in support of the BPS approach and brain training methods.

I don't think it's about ad hominems, I think it's about seeking clarity and trying to understand why Garner is acting so vigorously against us, and making accusations against the ME community, and it is about the legitimate efforts of pwME in trying to counter those accusations.

The fact, shown by the timeline of Garner's illness and recovery he has himself stated, is that he recovered in less than a year, as happens to many people with Long Covid. His choice to attribute this recovery to a particular approach that has no scientific backing is his choice, and his business, but he has made it our business too by his subsequent actions.

With my mod hat on, please everyone focus on the facts as revealed in Garner's own words and actions, and avoid speculation about the details of his health.
 
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Friendswithme said:
Who are you to say what PG experienced or didn't experienced, anyway - you might not want to hear that but its the truth, just as some others have differences in their symptoms and don't understand why but have a right to be respected as being unwell.
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There is a very important confusion going on here.
Nobody will be suggesting that Garner did not experience what he experienced.
What is suggested is that Garner's belief in the reason for his recovery is likely to be baseless because it does not fit even the facts in his case.
 
Friendswithme said:
arguing with the science you don't agree with
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Nobody here is arguing with science. Dr Garner's opinions about ME are a belief system, though, which is a different thing.

If you do this, it feeds into the idea that people with M.E are out to get researchers. You risk actually putting others off in case they put a foot out of line and also have their lives dug into.
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Please don't believe that old meme, nobody is being put off going into ME research. There are loads of good new researchers going into the field. The only thing 'putting them off' is lack of funding!
 
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