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

Researcher Turned COVID Long-Hauler
— A story of knowledge and recovery
by Paul Gardener, MD October 29, 2021

it's actually Paul Garner!

This story is from the Anamnesis episode called Heal Thyself and starts at 3:04 in the podcast. It's from Paul Garner, MD, a professor at the Liverpool School of Tropical Medicine and director of the Centre for Evidence Synthesis in Global Health, who works on guideline development for infectious diseases.


I'm 65, and I'm fit and well. When COVID struck, I was enjoying life. I was doing lots of running and cycling. I felt I was titanium-plated in some ways. The disease was traveling very rapidly through the U.K. I was on a conference call talking about COVID in the U.K. when someone on the call said, "This disease is doubling every 3 days. Anybody that feels unwell in the slightest should immediately self-isolate."

I had actually felt a bit strange that morning.

Sick for 11 Months

I went home, thinking, "Well, maybe this is what I should do." I stayed at home and felt a bit strange, but suddenly then on the 4th day I was struck with an illness like I have never experienced before.

I was thrown into bed with absolute exhaustion and sweating. It was like looking down a long tube. It was horrible. I thought I was dying. I was Googling myocarditis and COVID as I lay in the bed. I just sort of passed out, lying down.

Then a couple of hours later I woke up to this most extraordinary illness that went on and on and on. I was ill for a total of 11 months. Utter exhaustion, aches, palpitations, headaches, feeling cold, messed with my mood.

In those first few weeks, there were these constant attacks of this illness. Then it would sort of vanish for a few hours and I was left feeling like a rag doll.

This was all happening while I was watching the news with deaths increasing and ambulances and sirens going on all around. It was a really dystopic world that I felt I was living in.

Every day I woke up and thought, "Today is the day that I'm going to be better." One day I did actually feel quite a bit better and so I did a high-intensity interval training [HIIT] class in my front room for half an hour, which was a mistake. I was thrown back to bed, with the symptoms even worse the next day.

That continued for up to 6 months. I was deaf, I had tinnitus, and pins and needles, and palpitations. Waking up at night with palpitations is terrifying. Fasciculation in the skin; I could see my muscles twitching under the skin. Terrible, terrible headaches like you've never ever had before. I developed difficulty with speaking. I couldn't read. I couldn't always find the words. I kept losing words.

I was seen by a hospital consultant at the time, who was great. I went in expecting lots of tests. My friends had all told me that cardiac problems were common and renal problems, and I should get lots and lots of tests.

He just said, "Paul, you know what? I think you've got a post-viral syndrome." We ended up talking about whether to add ginger to carrot juice for breakfast in the morning. It was a very clever intervention. It took my focus off worrying about my organs and reassuring me that he thought I'd get better.

Being Obsessive Didn't Help

At the same time, the U.K. NHS [National Health Service] advice on how to manage this fatigue was absolutely awful, though. The leaflets were badly written. I actually couldn't read, so they didn't help very much. I had to learn myself that mental, physical, and emotional energy all compound to give you the kickbacks if you overdo it.

There were times then when I was actually only up for an hour or two at a time before I'd have to have a lie-down and give myself a bit of a rest to calm myself down.

Of course, during this time, I was obsessively monitoring. I'm a scientist. Of course, I'm going to be doing this and trying to work out what the triggers were, and what my Garmin Body Battery was doing.

None of it really made sense, but the obsessiveness didn't really help, I think.

A friend brought a cake around and we both had a slice. Then they went and I scarfed the rest of the cake because I hadn't had anything sweet for ages, and I felt dreadfully guilty. Then the next day, I felt awful. I thought, "Oh my goodness, I'm allergic to sugar."

I know as time went on into the 7th month, the night sweats declined and the being beaten up by this virus declined, but I was still unwell. I became convinced there must be some hidden biomedical cause that my mitochondria was somehow crippled.

I felt out of control. I felt full of fear and really fear about whether I would ever get better. I thought, maybe I'll have to retire. Maybe I'll never run again. At the same time, there were all these media stories of catastrophic organ damage and so on in people with long COVID.

Would I Ever Feel Better?

...

That's my story. I'm much better now. I'm recovered. I have changed my life a little bit. I'm trying to look forward to the future, avoiding stress, and trying to communicate the knowledge that my experience of long COVID is one where the explanation of what was happening to me and understanding that I had some agency, some control, was very important to my recovery.

https://www.medpagetoday.com/podcasts/anamnesis/95332

hmm no mention of the diving trip to Grenada.
 
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Researcher Turned COVID Long-Hauler
— A story of knowledge and recovery
by Paul Gardener, MD October 29, 2021

it's actually Paul Garner!






https://www.medpagetoday.com/podcasts/anamnesis/95332

hmm no mention of the diving trip to Grenada.
I'm hearing that he found exercise made him worse and that he rested more after that and then felt better than he did when he exercised. Oh and he thought happy thoughts.
 
Researcher Turned COVID Long-Hauler
— A story of knowledge and recovery
by Paul Gardener, MD October 29, 2021

it's actually Paul Garner!
https://www.medpagetoday.com/podcasts/anamnesis/95332

hmm no mention of the diving trip to Grenada.

Georgina Downs https://twitter.com/GeorginaDowns43

Multi award winning Journalist Campaigner. Exposing public health scandals. NO protection from: [URL='https://twitter.com/search?q=%23pesticides&src=hashtag_click']#pesticides; #organophosphate flame retardants; + now #Covid19
#PlagueIslandpesticidescampaign.co.uk
[/URL]


2 hrs ·
It is simply abhorrent what so many people - not only with ME but other similar long term physical neurological conditions - have had to endure over many decades.
Neurological conditions affect all parts of the body and in my case (confirmed neurological damage and injury from over 30 years exposure to cocktails of neurotoxic pesticides, including organophosphates) throw in a catalogue of diagnosed injuries to various parts of the body to boot and all the ongoing symptoms involved and it really is hell!
Am very proud of my steel balls and having very robust mental health but ask anyone with any neurological condition what the worse thing of all is and they will tell you it's the lies, misrepresentation, false narratives and false accusations from others due to the failure (or often point blank refusal!) to understand what they actually have and suffer from. As a result of this people with ME and other neurological conditions have often had no understanding, recognition, compassion, kindness, or support of any kind from others and that often includes friends and family. Instead sufferers have been very wrongly treated by others as 'all in the mind' 'imagining' their symptoms, neurotic, hypochondriacs and other such appalling dismissals when they actually have some of the EXACT same symptoms as other recognised serious physical neurological conditions such as MS, MND, Parkinson's etc.
The prejudices so many of us have suffered have been long, unbearable and is often designed to tear us down, as don’t even get me started on the obscene gaslighting so many of us have had to endure and for many, many years. It is highly offensive and just adds insult to injury!
But for what all of us with such health conditions lack in physical health we damn well make up for it with resilience, determination and steel balls to ensure that the truth and facts are known and that such injustices (not only medical and societal injustices but those related to public health policy failings such as in the absence of any protection for rural residents and communities from exposure to cocktails of toxic agricultural pesticides) simply will NOT be tolerated!!
In solidarity with all those who have suffered this!
And a special mention to Sheila Barry who was featured on my pesticides sufferers video in 2003 who had to witness pretty much all of the above when her daughter Carly suffered ME and Carly always said that not being believed nor recognised for the physical condition she had was the worst part of it all. It is bad enough being ill but the validity being doubted is truly appalling!
Carly took her own life after years of living with ME and Sheila has always been a superb advocate for those suffering ME and other such neurological conditions and the impacts it has on ones health, career opportunities, relationships, and all aspects of ones life. As the campaign says there really are #MillionsMissing from our society many of whom are housebound and even bedbound.
For all those affected by this we must fight on!!
Xx
 
He really hasn't grasped how lucky he is. He's 65 and he appears to have spent the vast bulk of his life as a well man. Most sick people on this forum can't say that.

I do agree with the piece posted by @Suffolkres above that one of the worst aspects of any illness, particularly long-term illness, is the disbelief, the gaslighting, the insults, the accusations of malingering and lying and laziness, the smirking, the scowling, much of it from doctors, but also from parents, siblings, relatives, school friends, teachers, bosses, colleagues.
 
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He really hasn't grasped how lucky he is. He's 65 and he appears to have spent the vast bulk of his life as a well man. Most sick people on this forum can't say that.

I do agree with the piece posted by @Suffolkres above that one of the worst aspects of any illness, particularly long-term illness, is the disbelief, the gaslighting, the insults, the accusations of malingering and lying and laziness, the smirking, the scowling, much of it from doctors, but also from parents, siblings, relatives, school friends, teachers, bosses, colleagues.

Arnie, may I copy this to Georgina please (anon if required)? She has a thread on her FaceBook page and needs lots of support atm.?

She is a very effective public health campaigner and feisty with it, but even she has limits on what one can endure on occasion ......
She is also a member of the RSA, an award winning journalist ,,, but most of all, she is a fellow sufferer (Just like Margaret Mar!)
http://www.pesticidescampaign.co.uk/

Recent articles
NEW - See Georgina raising the residents pesticides scandal in TRT World's new discussion program "Roundtable"

NEW - See Georgina's latest article in the Ecologist entitled "Expert panel identifies unacceptable toll of food and farming systems on human health"

NEW - See Georgina's latest article in Counterpunch entitled "Poison in the Fields: Agriculture as Chemical Warfare"
 

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CIDG end of year message 2021
CIDG Co-ordinating Editor's message
Cochrane’s future
cochrane_circulargraphic_rgb.png


The CIDG is a strongly performing Cochrane Review Group (CRG), and is recognized as such in Cochrane. This is all thanks to the continued, well-placed efforts and expertise of our CIDG Editors, editorial team, authors, and peer reviewers. However, Cochrane needs fundamental change to remain relevant in the evidence synthesis marketplace, and Cochrane’s restructure is still under discussion. Cochrane’s Editor in Chief, Karla Soares-Weiser, presented a re-imagining of Cochrane’s model for synthesizing evidence (recording can be viewed here). The new Future Cochrane website presents one potential model for the Cochrane community to consider. Information gathered via this website (via the survey), in the Community Engagement Workshops, and collected as part of the Editorial Independence and Efficiency Project will inform a business case to be presented to the Governing Board by the end of December 2021.
https://cidg.cochrane.org/news/cidg-end-year-message-2021

https://www.futurecochrane.space/
 
I found this podcast from 2014, Paul Garner explaining what Cochrane reviews are:

Did a transcript of the first 5 ish minutes.

A Cochrane review is a specific sort or systematic review.

It is a systematic review that is put out electronically and is the result of a large collaboration of over 20,000 people worldwide.

They got together about 20 years ago to try and sort out health and medical care in relation to systematic reviews because up to that point,

People had spent an enormous amount of time doing primary research about the effects of healthcare but hadn’t invested the same scientific methods in producing the summaries of that.

So this group said ‘this is a scandal’ and that it needs fixing.


And so it was an organisation that came together around all aspects of healthcare. We’ve just got one little bit of the picture that we help co-ordinate from here. The systematic reviews are different from other publications because they are published entirely electronically and they use standard methods that the whole collaboration has produced, and they are updated over time. In other words as new trials appear, these are incorporated into new editions of the review that are then published.


The other critical point about Cochrane reviews is they are very clear about interpreting the evidence in the light of the quality of that evidence which not all reviews do.


The main group of people producing a review are the review team.

So the review team are critical to the process. The review team consists of several authors. They need people with topic experience, understanding of the topic. It needs people with statistical knowledge, and methological knowledge.. So this group of people need to get together.


The authors of these reviews need to be fastidious, careful, people, that are not highly opinionated. So highly opinionated people, are complicated in systematic reviews because they tend to pull the interpretation of the results in a way that they think is right.


So we’re looking for people that have an open mind, often young people, because they have a lot more open mindedness than old people.


So that is a review team that commit to producing the review. The review may take on average 18 months to 2 or 3 years. These are pieces of research. Constantly people think that these reviews are like you used to do in the past , you’d do them in an afternoon, on the bus home, but they’re not, they’re pieces of research and they take as long as primary research does.


There’s also teams of people that referee, edit and provide technical input. So the thing about the Cochrane collaboration is that it’s a very supportive organisation and tries to help people get things done rather than put things in the way. It’s an organisation that encourages collaboration and not competition.
https://cidg.cochrane.org/news/professor-paul-garner-discusses-his-work-cidg-coordinating-editor
 
Doesn't seem to work as intended when they allow the people who did the original 'research' to determine how good the evidence, of their own research, is.

Or when the organisations values have been supplanted by dogma and belief rather than the critical thinking and evaluation they state should be there.
 
Meh, it's all just PR. Many of their reviews fail at most of those principles, and the CBT and GET ones fail every single one of them, plus a few extra ones for good measure. Add to that their ridiculous policy of "no backsies", I genuinely have no idea what this organization even exists for, why it has any credibility at all. It seems mostly because they allow people to pick and choose what version of reality they want, that's the essence of EBM anyway: it's all judgment, so make up your own, no one cares.
 
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Possibility of ME or PVFS after COVID-19, Long Covid


Paul Garner interviewed (yet again) in The Times. Though much of the interview is with Danny Altmann, professor of immunology at Imperial College, Resia Pretorius, from Stellenbosch University and Douglas Kell, from the University of Liverpool. Perhaps the journalist, Tom Whipple, interviewed Garner as well out of some misplaced sense of bringing 'balance' to the article.



You can read this Times article even if you don't have a subscription, because the person who posted it used a (legitimate) Times 'Share Token' which allows anyone to read the article, it remains accessible for a couple of weeks. You may be able to Comment on the article too with this link.

'Covid leaves wave of wearied souls in pandemic's wake'

https://www.thetimes.co.uk/article/...vX2x9MTrX0F3aHkl0Q-oZBLEwIPNihIZhh778ahzO58kw



Garner has resorted to quoting an early 20th century text on Neurasthenia -

'When Professor Garner thinks of long Covid, he has his own preferred historical example. Jamieson Hurry was a Cambridge-educated GP in Reading. In 1915 he wrote a book titled The Vicious Circles of Neurasthenia. It covered the “morbid irritability and fatiguability of the nervous system” — and its link to our own thoughts.......

The problem is, he argues, that particularly in a situation of high perceived danger — such as a pandemic — sometimes you stay shut down. Your brain sends the wrong messages, your body says it’s still ill, and the two feed on each other. Slowly, with difficulty — with accepting that his thoughts were themselves part of the problem — he got better.

Garner knows how he sounds.'


I really don't think Garner does know how he sounds. Unfortunately his gibberish is still fueling casual disease denial and gaslighting. If I read one more comment promoting the supposed "mind/body connection" my brain will explode - and ME research can have the remains.
 
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"Just months ago Garner was, he said, in a tunnel of darkness. “I couldn’t sleep. I couldn’t do much.” He spoke to people suffering from ME, a condition many believe is a post-viral symptom. They told him this was his life now. “I got frightened. And then the fear fuels the illness.” It was, as Hurry said, a vicious circle".

*M.E is a post-viral "symptom".

It's weird how PG blames M.E pts for his anxiety/emotional disorder. There is a difference between emotional and physical disorders.
 
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