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

Forbin said:
I've been hoping that some group would do this on a large scale as a longitudinal study.
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there are a number of groups doing long-term observational studies of patients to track who recovers, who doesn't, symptoms, etc. Lenny Jason's mono/glandular fever study could provide this kind of information for both ME and long-Covid, since they've been tracking participants since they were healthy entering students at Northwestern.
 
And Avindra Nath in NIH.
From the Medscape article Long Covid Cases Rise as Stigma of Chronic Fatigue Taunts (Jan. 2021):

Unlike COVID-19 long haulers, however, many patients with chronic fatigue syndrome go at least a year with these symptoms before receiving a diagnosis, according to a British survey. That means researchers have had few opportunities to study the early stages of the syndrome. "When we see patients with myalgic encephalomyelitis, whatever infection they might have had occurred in the remote past, so there's no way for us to know how they got infected with it, what the infection was, or what the effects of it were in that early phase. We're seeing them 2 years afterward," Nath said.

Nath quickly realized that studying patients like Gage-Witvliet would give physicians and scientists a unique opportunity to understand not only long-term outcomes of COVID-19 infections, but also other postviral syndromes, including chronic fatigue syndrome at their earliest stages. It's why Nath has spent the past several months scrambling to launch two National Institutes of Health (NIH) studies to examine the phenomenon.
 
Trish said:
In case anyone is wondering why this thread has suddenly got longer, I have just moved, or in a few cases copied, 91 posts that now appear on the beginning of this thread that were posted before this thread was created on Possibility of ME or PVFS after COVID-19, Long Covid
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Trish, you are a superstar! Thank you. Being a moderator elsewhere, I know exactly how much of a pain that is - and doing it with ME must make it at least a dozen times worse.
 
Good blog from Valerie Eliot Smith on that BMJ blog:
https://valerieeliotsmith.com/2021/...arming-flip-flop-on-recovery-from-long-covid/



NB Reading Valerie’s blog made me realise I was wrong to say
Robert 1973 said:
but he then goes on to attribute his recovery to a student who sent him an unsolicited email promoting what appears to be a pseudoscientific cult.
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He was actually put in touch touch with the Norway student having cast around his “international network of medical evidence specialists for help”.
 
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About PG and CG on breakfast television - I know little about Naga Munchetty, but she strikes me as a serious journalist, or at least I know she has worked on serious news programmes. It's likely that she doesn't have much idea about Post viral fatigue syndromes, Long Covid or ME or the evidence for why exercise is problematic or any of the background behind why people have made complaints about the interview to the BBC. This as an opportunity for someone well informed and good at this sort of thing to make contact with a brief friendly explanation and give links to good sources of information if she wants to find out more. It might pay off in the future.
 
Skycloud said:
This as an opportunity for someone well informed and good at this sort of thing to make contact with a brief friendly explanation and give links to good sources of information if she wants to find out more. It might pay off in the future.
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I suspect the decisions on who is invited and the direction interviews should take are made at a higher level - program producers, editors etc. Might be worth contacting them too.
 
Trish said:
I suspect the decisions on who is invited and the direction interviews should take are made at a higher level - program producers, editors etc. Might be worth contacting them too.
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Yes you're right. I was thinking about how contact by patients via tweets etc with George Monbiot over a period of years has paid off recently.

(eta at least it seems that way)
 
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Interesting thread on twitter (Keith Geraghty) re PG
Code: 
https://twitter.com/keithgeraghty/status/1355100121550233610

eta: a different thread from the one linked to above by milo.
 
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That is indeed a long list of media that Garner has been quoted in, but it doesn't necessarily imply he actually did individual interviews with all of them. Some may be simply lifting quotes from his articles.
https://www.evidence4health.org/new...r-discusses-his-experience-of-having-covid-19

Out of curiosity I had a quick look at one of the more recent articles Garner was quoted in. It's in the Pharmaceutical Journal dated 5th November 2020. There is only a short section quoting him near the end, not about his own story, but about the lack of help from the NHS for people with long Covid:
https://www.pharmaceutical-journal....ng-covid/20208498.fullarticle?firstPass=false
“In the initial wave, there was a fair proportion of GPs that dismissed ‘long COVID’ as anxiety,” says Paul Garner, professor at the Liverpool School of Tropical Medicine — and someone also experiencing long COVID.

Nobody seems to have access. Doctors don’t have protocols. Referrals are not happening. It is chaos

Regarding the emergent heart symptoms, Garner says that doctors do not know how to treat or investigate them, and quite often they dismiss them, although he says they are “learning rapidly”.

However, Garner says he does not know how to access existing rehabilitative services.

“Nobody seems to have access. Doctors don’t have protocols. Referrals are not happening. It is chaos.”
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The one in Modern Diplomacy is a very short report of the WHO meeting about long Covid. Garner was one of 3 patients who told their stories via Zoom.
https://moderndiplomacy.eu/2020/11/01/long-term-symptoms-of-covid-19-really-concerning/
This is the section where he is quoted:
Professor Paul Garner, an infectious disease epidemiologist at the Liverpool School of Tropical Medicine in England, was “fit and well” when he fell ill with the disease in March.

For four months, he battled cyclical bouts of fatigue, headaches, mood swings and other symptoms, followed by three months of complete exhaustion.

“When I overdid things, the illness would echo back, it would come back. And it was completely unpredictable,” he said, speaking via videolink.

Professor Garner reported that his health has only begun to improve within the past two weeks.

“I never thought I would have seven months of my life wiped out by this virus,” he said. “It has just gone, evaporated.”
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Make of that what you will.
 
And here's what he said about his experiences at the WHO press conference (from which the quote in my previous post is taken):
https://www.who.int/publications/m/...press-conference-transcript---30-october-2020
Dated 30th October
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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Trish said:
Good article, thank you @Valerie Eliot Smith. It is interesting to read about your communications with Prof Garner over the months. I hope he replies to your latest effort to contact him.
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Thanks, Trish. As I said, he finally replied after I said I would be writing about his BMJ posts but it was a completely inadequate response.

I wouldn't expect to hear from him again. Interestingly, however, in that final reply, he did copy in the Director of Communications at the Liverpool School of Tropical Medicine.
 
strategist said:
I have noticed that when my health improves, I start feeling like I was exaggerating my ME/CFS and that it wasn't really as bad. Usually I get worse again within a day or two.
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I've been pondering "duration neglect" lately (which I first read about in Thinking Fast and Slow). I can no longer remember how it was in the 2-3 years when I was either dragging myself to work with a headache like a zombie or lying on the sofa in between sending myself back to bed every 2.5 hours. Back then I always assumed such an experience would affect me for life and I would never forget it, but now as I can do more things I just get on with them without looking back, and I know I can't feel how I used to feel or really remember it. Reminds me of how John McCarthy described the behaviour of the American hostages he was held with when they were released from years in captivity - he watched perplexed as they got straight back to partying, celebrating and living as usual with apparently no ill effects from their years of being chained in one room.

On the other hand until recently, when I had a bad day, I would assume it was a permanent decline and it was hard to remind myself that I've always bounced back before.

So basically I am a very unreliable witness of my own illness. Fortunately I have my meticulous daily diary and data to look at. Here's an interesting study which PG would be well advised to read:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3138972/

Determining Whether a Patient is Feeling Better: Pitfalls from the Science of Human Perception

Abstract
Human perception is fallible and may lead patients to be inaccurate when judging whether their symptoms are improving with treatment. This article provides a narrative review of studies in psychology that describe misconceptions related to a patient's comprehension, recall, evaluation and expression. The specific misconceptions include the power of suggestion (placebo effects), desire for peace-of-mind (cognitive dissonance reduction), inconsistent standards (loss aversion), a flawed sense of time (duration neglect), limited perception (measurement error), declining sensitivity (Weber's law), an eagerness to please (social desirability bias), and subtle affirmation (personal control). An awareness of specific pitfalls might help clinicians avoid some mistakes when providing follow-up and interpreting changes in patient symptoms.

KEY WORDS: symptomatic changes, patient follow-up, fallible judgment, medical error, human psychology, eliciting the history
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Been thinking about the gravity of what is going on and that Robert M has issued a complaint following appearances on the 2th January 2021. The BBC should be taken to task in my view....for appealing to people like CG to Talk Up and to mislead people. An apology should be forth coming.

‘Vast majority of people that get this illness, survive absolutely, 99% of people” Dr Clare Gerada wants more positive Covid-19 stories to stop the fear...’
 
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I have been pondering the quote "I feel that I have looked down the barrel of the ME/CFS gun and disarmed it".

When someone becomes ill with covid, then long covid or whatever virus followed by PVFS or ME, we have no way of knowing what the outcome will be. It is devastating as one has to plan for the worst but hope for the best and everything about life as you have known it is thrown up in the air while every support mechanism you though you could rely on is swiftly swept out from under your feet. Some will recover, some won't &, thanks to no one taking it seriously, no one can tell who will recover until they do.

Here's where I find the gun analogy apt - you are held hostage by an armed gunman. With self limiting PVFS it's not a case of disarming the gunman, it's that the gun is a very realistic replica and was never loaded with live ammo anyway. No matter what you did you were never in danger of being shot, though you didn't know that at the time.

The difference for ME patients is the gun is loaded and will be used, no matter what you do. It's just a case of the degree of injury - will you merely be mildly affected in such a way that has implications for the rest of your life or is life as you have known it over - bedbound & isolated.

I can appreciate that in PVFS how you feel may be more or less identical to the person who will become an ME patient and face identical challenges at the time. It is scart and it is traumatic. One can see that in order to re establish your sense of control you would chose to believe it was your own cleverness & gumption that got you out of the situation.

The reality is though, the gun wasn't necessarily loaded and disarming a gunman carrying a replica is a very different proposition than tackling a gunman with a loaded weapon that they fully intend to use.
 
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