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

[Saz94]

I sort of agree with Garner - we don't know enough to say that such symptoms are post-viral and not still being directly caused by COVID itself.

 

[alex3619]

I sort of agree with Garner - we don't know enough to say that such symptoms are post-viral and not still being directly caused by COVID itself.

There is a blurred line between these two when you consider that often most of the symptoms are due to the immune response, and that does not switch off overnight.

 

[boolybooly]

I have heard this kind of argument before though in relation to my own recurring virus and like I said to my doctor then, you are saying it isnt what it is.

If it looks like a duck and quacks like a duck etc, scientifically Occam's applies, you need a reason to invent a convoluted theory that the immune system reacts to nothing at all just because it feels like it. What that is is denial, which is a psychological problem due to not wishing to confront the implications of having a virus you cannot get rid of, I should know. That applies to physicians as much as to patients who have to face they dont have an answer and have to surrender some of their status.

In the end I had to prove it to my doctors using repeat NHS PCR tests and photographic evidence with dated newspapers in the background of different rash patterns to show I had 10+ attacks in a year. And it really was really really a real virus recurring. Mind you they are learning, in 1986 I was told "that doesnt happen" by a specialist in my kind of problem. In 2010 odd I was told yes this virus can do that by another specialist and in 2020 I was told the same by my GP who nevertheless refused to countenance the horrific idea that H1N1 might recur (which I believe it did) or for that matter that SARS-CoV-2 might if I was unlucky. The reason for that was the obligation to tightly conform to guidelines which is what creates the edifice of the medical establishment in the first place, which is not altogether a bad thing given some of the craziness I have seen from alternative medical practitioners.

IMHO the issue here is scientific evidence, we need to establish the truth about this whatever it is and it takes science to do that and by the same token, those propounding the denial of recurrent virus need to provide scientific evidence and if they have none then handwaving must be challenged so that we can establish the truth but equally those observing recurring virus must provide evidence to the rest of the scientific community if they expect to be taken seriously.

 

[Invisible Woman]

Sure, I'm not saying he shouldn't be scrutinised or challenged, but just trying to think of things from his perspective, and how that might affect what sort of scrutiny might be most useful (something I'm generally pretty bad at).

I agree, he's not going to be in the best of places at the moment.

Neither are other post covid patients and to be fair to him he is trying to highlight there isn't an On/Off switch with covid. However, as a Professor of infectious disease, if he had been listening to his patients prior to becoming ill shouldn't he have known that already? Shouldn't he have been teaching that to junior colleagues?

In a way, if he now feels misunderstood, it is partly because he's fallen victim to his own previous lack of observation & curiosity. That's not going to be making him feel any better.

Despite how awful ME patients feel, how badly their communication skills have been affected, the life crisis precipitated by a sudden & wholly misunderstood disease, few docs of this standing give us any quarter. Instead they'll happily discuss secondary benefits and avoidance behaviours when all you want is for it to stop feeling like you have been poisoned and might just die.

I feel for him as a human being. I hope that he does recover, but if and when he does, I hope he learns from how it felt to wear our shoes for a while.

 

[Invisible Woman]

Wouldn't a test that looks at the viral load help determine if people still have the virus and hence whether these are symptoms of cov19 or a post viral thing. I think there is some testing of people leaving hospital but I don't know how that fits with reports of PVFS.

I think Alex has partly answered that here -

There is a blurred line between these two when you consider that often most of the symptoms are due to the immune response, and that does not switch off overnight.

As has @boolybooly in the post above.

Some virus may also lurk in hidden reservoirs undetected, so the test isn't absolute proof that there is no longer any virus present, just that it can no longer be picked up by that test.

We assume if it isn't picked up by that test it's no longer actively affecting the host, but we know that for sure do we? It could be it's simply not affecting the host in the way we expect.

Testing, tracking and tracing are all really important in trying to contain & eradicate the virus. Treatment should go beyond that, regardless of tests monitoring patients and doing what is possible to ease symptoms could make a difference to the speed and level of recovery. There's a lot that could be learned from these patients.

 

[Esther12]

I sort of agree with Garner - we don't know enough to say that such symptoms are post-viral and not still being directly caused by COVID itself.

I guess we could say that for a lot of post-viral symptoms too? We just don't know the cause.

 

[rvallee]

I agree, he's not going to be in the best of places at the moment.

Neither are other post covid patients and to be fair to him he is trying to highlight there isn't an On/Off switch with covid. However, as a Professor of infectious disease, if he had been listening to his patients prior to becoming ill shouldn't he have known that already? Shouldn't he have been teaching that to junior colleagues?

In a way, if he now feels misunderstood, it is partly because he's fallen victim to his own previous lack of observation & curiosity. That's not going to be making him feel any better.

Despite how awful ME patients feel, how badly their communication skills have been affected, the life crisis precipitated by a sudden & wholly misunderstood disease, few docs of this standing give us any quarter. Instead they'll happily discuss secondary benefits and avoidance behaviours when all you want is for it to stop feeling like you have been poisoned and might just die.

I feel for him as a human being. I hope that he does recover, but if and when he does, I hope he learns from how it felt to wear our shoes for a while.

Knowing what happens to post-viral patients, that medicine has nothing to offer but contempt and indifference, is a strong motivator for not wanting it to be that. No doubt he understands that if he were seeing himself as a patient he would dismiss his case with prejudice and he understands what that means for his present circumstances.

It's a bit like knowing what it actually means when the family dog is sent to live to the farm upstate. Anyone would want any other explanation than the one that guarantees the worst case scenario. That must weigh heavily.

It does highlight how silly this all is. There are dozens of individual post-viral syndromes for each virus for which it is accepted that this is a thing but somehow the idea of post-viral illness remains rejected. It has to be specific viruses only. Somehow. Based on no science whatsoever but somehow.

 

[Invisible Woman]

No doubt he understands that if he were seeing himself as a patient he would dismiss his case with prejudice and he understands what that means for his present circumstances.

Yes. I'm sure given his knowledge & experience the stigma of PVFS, like the stigma of ME, is something he might fear.

 

[rvallee]

Yes. I'm sure given his knowledge & experience the stigma of PVFS, like the stigma of ME, is something he might fear.

It's all fun and games burning witches until someone in the crowd, bored by the lack of new witches to burn, turns around, points at you and yells "WITCH. WITCH! WIIIIIITCH!" and you have to prove that you aren't a witch by... checks notes... proving that you can't use magic, or something.

 

[ladycatlover]

I see that Paul Garner is in Liverpool. Notorious for some of its ME so called research. I was actually diagnosed by Fred Nye (Infectious Diseases) and he was really helpful. He used to spend a lot of time helping patients to get the benefits they were entitled to. And then he joined the enemy.

8. Powell P, Bentall RP, Nye FJ, Edwards RH. Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome. BMJ. 2001;322(7283):387–390

He was "Clinical Champion" in Liverpool for a while, and then was followed by Alistair Miller (thankfully no longer medical adviser to AfME). Nye was in charge when a truly dreadful job description went out for jobs in the Liverpool CFS clinic.

Here's a website about it.

While this is old news now, people should still be aware of it. I've heard the occasional review of the Liverpool CFS service, which I think is now at Broadgreen Hospital. There used to be review pages about the service, but I just can't find them now! I wonder why.

 

[Kalliope]

Copied from the long Covid thread

The Guardian has a corona virus article today that includes an interview with Garner

Since his piece was published, Garner has received emails and tearful phone calls from grateful readers who thought they were going mad. “I’m a public health person,” he says. “The virus is certainly causing lots of immunological changes in the body, lots of strange pathology that we don’t yet understand. This is a novel disease. And an outrageous one. The textbooks haven’t been written.”

Prof. Tim Spector of King's College London says:
“These people may be going back to work and not performing at the top of their game,” Spector says. “There is a whole other side to the virus which has not had attention because of the idea that ‘if you are not dead you are fine.’”

The article ends with:
Meanwhile Covid “long-termers” have been comparing notes via a Slack support group. It has #60plus-days and #30plus-days chat groups. The dominant feeling is relief that others are in the same grim situation, and that their health problems are not imaginary

https://www.theguardian.com/world/2...advent-calendar-covid-19-symptoms-paul-garner

 

[Arnie Pye]

Merged thread

https://www.theguardian.com/world/2...advent-calendar-covid-19-symptoms-paul-garner

In mid-March Paul Garner developed what he thought was a “bit of a cough”. A professor of infectious diseases, Garner was discussing the new coronavirus with David Nabarro, the UK’s special envoy on the pandemic. At the end of the Zoom call, Nabarro advised Garner to go home immediately and to self-isolate. Garner did. He felt no more than a “little bit off”.

Days later, he found himself fighting a raging infection. It’s one he likens to being “abused by somebody” or clubbed over the head with a cricket bat. “The symptoms were weird as hell,” he says. They included loss of smell, heaviness, malaise, tight chest and racing heart. At one point Garner thought he was about to die. He tried to Google “fulminating myocarditis” but was too unwell to navigate the screen.

Garner refers to himself wryly as a member of the “Boris Johnson herd immunity group”. This is the cluster of patients who contracted Covid-19 in the 12 days before the UK finally locked down. He assumed his illness would swiftly pass. Instead it went on and on – a rollercoaster of ill health, extreme emotions and utter exhaustion, as he put it in a blog last week for the British Medical Journal.

 

[JemPD]

Dear Dr Garner,

imagine that it never went away, imagine all those weird & wonderful 'advent calender' of symptoms that started with the virus & just kept on coming.... imagine they never went away. And decades later they are still there. You're still being 'beaten up with a cricket bat' - every day. And imagine that almost nobody, in your profession or otherwise, gives a crap, partly because some prat named it 'fatigue syndrome'. Indeed they send you to a psychologist who tells you you're producing those symptoms for secondary gain so you can keep getting benefits or the "attention" that comes from the sick role. And far from compassion you face derision at every turn. It's not nice is it?

You have had a taste of our world, of our reality. For you it lasted 8wks, count yourself lucky, for me it's been 20yrs so far.
The vast majority of your colleagues & the public & the agencies needed to help you when it doesn't get better, (& you included judging by your response to the suggestion it might be 'post viral fatigue' - revealing what seems like gross ignorance of what people with ME/CFS actually suffer), think it's impossible to continue having viral symptoms, especially 'weird' ones like you describe, after the virus has ostensibly 'gone'. Perhaps, you might have a little more empathy before pushing the 'somatizing' button in any future interactions with CFS/ME/PVFS patients.

ETA the last 4 words of last sentence

ETA to make clear that my post is not a copy of a comment posted anywhere else, just what I wanted to say after reading about his blog again in the guardian piece.

 

[rvallee]

Merged thread

https://www.theguardian.com/world/2...advent-calendar-covid-19-symptoms-paul-garner

Pretending this is new is absurd. Even if we ignore the ME elephant in the room, many other viruses have lead to similar long-term illness, lifelong in many cases. It being a different virus doesn't change the fact that this phenomenon is far from new, in fact repeats itself with regularity. Not even a mention that the same was found from SARS-CoV-1.

Can't think of a more apt example of being unable to see the forest for the trees. "This is clearly not a forest it's just a bunch of trees close to one another!".

Because the overlap between those patients and ME is >90% and near 100% where it matters the most. Meanwhile ME is locked into this broad supercategory built entirely of trivial similarities, where the overlap is superficial and weakest where it matters most.

That's just bonkers-level of failure. There's a good case to make that psychosomatic ideology literally rots people's brain into jellied puddles of fat that genuinely cannot tell that Clark Kent is actually Superman wearing glasses (spoiler!).

 

[alex3619]

Clark Kent is actually Superman wearing glasses (spoiler!)

Gotta give up reading psychobabble I guess ...

 

[Hoopoe]

It's not yet clear that protracted covid-19 is the same as ME/CFS or at least close enough that they are not easily distinguishable.

 

[Dolphin]

Most or all of the comments have now been posted underneath. Previously, none mentioning ME or CFS had been posted.

 

[rvallee]

Most or all of the comments have now been posted underneath. Previously, none mentioning ME or CFS had been posted.

Mine was pending for several days but I see now it has been approved. So there's that.

 

[JemPD]

Mine was pending for several days but I see now it has been approved. So there's that.

My thanks to the sensible comments on Dr Garner's post re ME, I only managed to read a few. I thought yours particularly good @rvallee

 

[Trish]

I have been following this thread and reading the various reports of people's experiences so far post covid-19 and come to the conclusion that it's far too early to come to any conclusions about what is happening.

I have some sympathy with sufferers of ongoing covid symptoms who say 'it's not just post viral fatigue' if they are experiencing a lot more symptoms than fatigue.

If they don't know the whole sad saga about fatigue, pvfs, chronic fatigue, CFS and ME, and all the history and distinctions between them, it's natural to feel fobbed off by being told what they are sufffering is 'fatigue'. Just as we feel angry when people assume all we suffer is fatigue, and refer to us as having 'chronic fatigue'.
...........................

I have attempted to make a list of all the things that can happen to someone after a viral infection, and put in blue what they might be called.

1. The virus has cleared the body, but you are left with lingering symptoms:

a) Stress/anxiety about coping after a very unpleasant illness that may have thrown your life into chaos may leave you feeling exhausted stress, anxiety, burnout, post viral fatigue

b) Fatigue that commonly lingers after any virus for a few weeks, and may make you feel still a bit under the weather, tired, or low mood, and clears after a few weeks. post viral fatigue

c) Debilitating fatigue without other major symptoms that may linger for a few months then clears up post viral fatigue

d) A lot of debilitating and unpleasant symptoms some of which are are the same as the original illness, and including exhaustion, that clears up after a few months. post viral fatigue syndrome

e) Debilitating fatigue with no other symptoms that lingers on longer than 6 months. chronic fatigue, or CFS Oxford criteria

f) Fatigue and other symptoms continuing for more than 6 months without PEM. CFS Fukuda criteria

g) Fatigue and lots of other symptoms including PEM and symptoms that fit the CCC, ICC and/or IOM diagnostic criteria for ME. ME/CFS ​

2. The virus persists for longer in some people and flares up repeatedly causing the same symptoms as the original virus prolonged infection

3. The organic changes caused by the virus such as lung damage, kidney damage, cardiovascular damage, brain etc leave the patient with long lasting or permanent symptoms related to that structural damage. post infection organ damage, eg stroke, COPD, lung scarring, heart attack, heart failure, kidney damage

4. Ongoing effects of the treatment such as induced coma and being on a venilator. PTSD etc.

Edit to add:
5. Post intensive care syndrome.

....................

It is possible any of these 11 options I've listed are happening to some people in the weeks after Covid infection.

At the moment a lot of them are assuming that they fit category 2 - ie they assume what they are suffering is ongoing infection lasting a long time (more than 6 weeks). They may also fear that they belong in category 3 (lasting structural damage to organs).

They therefore dismiss suggestions that they belong in category 1 - the virus has gone. I think that's understandable at this early stage. They could be right. No one knows.

Rather than berating sufferers of post covid symptoms for rejecting the words 'post viral fatigue' I would rather sympathise with their symptoms and offer supportive and helpful information from us as a community who have experience of the whole gaslighting, wrong advice etc. In other words, work to get them on our side with us in the fight against the BPS crowd.

I don't think we should assume someone who has rejected the description 'post viral fatigue' for what they are experiencing now, means they are BPS supporters for ME unless they actually say so.