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

Some may develop a condition called post-intensive-care syndrome, which can include persistent muscle weakness, fatigue, attention and memory problems, and anxiety.

 

Which comments?

 

Totally agree, well put. My personal experience of Prof Garner is that he acknowledge PVFS and ME for what it is, though his perspective right now is the ongoing acute phase of covid that seems to be long term for a lot of people. And it’s very frightening. Also, just hearing that it could be leading to something chronic is very frightening. Please be patient, don’t jump to conclusions or assume that people with less knowledge about ME would know better. Remember, this is traumatic, these people have a feeling they’re going to die if they go to sleep, most of them have never experienced anything like this. I’m in a couple of covid-groups on fb because I had an infection in March that was affecting my lungs (I have asthma, but this was something much worse), on top of severe ME. So I joined these groups to see if anyone else experienced these lung symptoms. We need to advocate for the risk of getting ME, but we must respect the trauma these covid-19 affected (self caring and in quarantine) are experiencing and that they have to, first of all, fight/advocate for proper healthcare and testing for what’s going on right now.

 

This is very important. I've been careful in any discussion around 'post-COVID' to point out that post-viral symptoms are self-limiting in the majority of cases, and that experiencing symptoms a few weeks after a serious illness doesn't mean you're about to automatically get ME/CFS. From an ethical standpoint it's not good to scare people when we just don't have the data; from a tactical standpoint if most people end up recovering all they'll remember is a load of those 'nasty ME activists' who tried to 'jump on the bandwagon'.

 

Another way of looking at this is that warning people that they could be left with long term problems like ME and that they need to consider that pushing themselves or others could make things worse for the individual is not necessarily unethical.

I think if an infectious disease doctor makes comments in the media that could be interpreted by some people who hear them as suggesting postviral fatigue syndrome is not a serious condition or makes inaccurate comments about postviral fatigue syndrome or CFS or ME (e.g. that it can't be CFS because we know the cause, it couldn't be PVFS because there was a range of symptoms and their severity fluctuated), it is reasonable to challenge them. At that stage, he's making comments about our illness. Apart from that, I'm not sure there has been that much that could be described as nasty.

 

Tom, I don't disagree with a thing you've said and FTAOD think everything I've seen from you has been very measured. I had seen a couple of comments elsewhere underneath posts from COVID sufferers who still have symptoms immediately jumping to an ME diagnosis. At the moment, so early into the epidemic, that remains unproven. I think providing advice of 'listen to your body, don't overdo it' is very appropriate; 'you probably have ME' isn't.

 

https://www.abc.net.au/news/2020-05-19/covid-fatigue-one-of-worst-symptons-patients-say/12252602

 

ABC News: Coronavirus patients with even mild cases of COVID-19 are taking months to recover and suffering extreme fatigue

Professor Garner is still dealing with exhaustion.
"It gives you some of the symptoms that are very similar to chronic fatigue but I am hesitant about calling it that," he said.
"If we call it COVID fatigue we know where we are.
"I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms."

 

showing another incorrect assumption that going down with ME/CFS is a gradual process for all people; I don't know what the statistics are but I thought that there were more pwME with acute onset than gradual onset(?) and I know I'm not the only one to be initially diagnosed with PVFS for the first x number of months until a diagnosis of ME could 'officially' be made.
But all the main symptoms were there from very early on.

 

Of course it’s important to point out if there’s some phrases that could be misunderstood by others, but I’ve seen comments that’s really not helping our advocacy. This could be a grate opportunity to explain what PVFS or ME really is and share experiences or knowledge instead of questioning or assuming the worst. I think dr Charles Shepherd did it well in the commentaries to the BMJ blog, supposedly leading to the article with both of them in the Huffington post.


It is frustrating not being believed having covid and ongoing infection. It is frustrating being told having PVF when it’s to early to say (and this really is something new and have not been researched), and probably given by doctors who are trivializing it, BOTH the PVF-diagnose and the patients and their symptoms (those ‘mildly’ affected with covid), AND trivializing pwme/ME. Using PVF with the wrong meaning of what it is. And who can blame them when the name in itself is concentrated on fatigue? The name PVFS is as bad as CFS. For both groups.


WHO has held that covid can affect with milder symptoms for 1-2 months. It’s probably not PVF/PVFS or ME, yet. Not in the early stage. And Garner is fully aware of that it could lead to it, and have mentioned pacing as an important thing to apply for not getting worse.


I think pwME who havent experienced covid should join groups or forums with covid affected to see their perspective before jumping to conclusions. What me and my husband are having now is symptoms from the infection reappearing (first symptoms in beginning of March), and those symptoms are not explained by ME or PEM, its from the virus we have/had. Our symptoms are exactly what a lot of covid sufferers have, and it’s more than ME, it’s the infection not letting go yet.

 

You are entitled to your opinion but I don't know how you or others can be sure it isn't a postviral fatigue syndrome with a similar mechanism to ME/CFS/PVFS. As many others with ME/CFS have said, their symptoms at the start continued. There are 60+ day COVID groups.

Dr Garner said the most unhelpful thing suggested to him was that it was a postviral fatigue syndrome. I don't think that is the most unhelpful thing to suggest in a situation like this and if he's saying it publicly, I think he can be challenged on it. That is not to say that this shouldn't be researched specifically but all options should be on the table.

I think it is important that it is highlighted that people with ME/CFS/PVFS often have symptoms similar to those experienced soon after infection.

It also looks like Prof Garner's publicly stated views may have changed a bit following feedback from ME/CFS patients

 

I agree with this. I have joined a covid support group on FB (not having had it myself) and that gave me a whole new understanding of what people are experiencing. The fact that people still test positive after 8 weeks and that there are studies showing the intermittent resurgence of the virus is clearly suggestive of an ongoing, albeit waxing and waning, virus infection. There are other viruses that behave in the same manner and I think we should be a bit humble in that no one actually knows the whole story yet. While there are eerily similarities between what they are experiencing and ME symptoms, they also have other symptoms.

Could many end up with PVFS or ME? I believe so, but it's just to early too say.

I reacted to Paul Garner's statements about PVF as well and I still think they were unfortunate. Having read accounts from people with longstanding covid symptoms and the way many are dismissed and disbelieved by doctors and family members I can understand them though. And when you're in the midst of a trauma your judgment isn't the best, the frontal lobes simply aren't online, and who knows how affected he was cognitively by covid.

He doesn't seem very knowledgeable about how PVFS or ME presents, that's true, and probably more telling about clinicians in general than him personally. Let's cut him some slack.

He seems to have listened to the feedback about PVF and ME and in time, when he has recovered, and has processed this ordeal, he might be interested in, and have the capacity to take in our perspective in a more comprehensive way.

 

Because it's actually fatigue and other symptoms and way more serious than it's made up to be? Yeah, we know. But fatigue is fatigue, whether it's light or crushing, the same way as a bee sting and a total bone fracture are pain yet on wholly different levels. It was always catastrophically stupid to create a syndrome out of one of the most common symptoms in medicine, especially on a symptom that isn't even the main symptom of this disease or a necessary one.

Which only highlights how completely broken medicine has been in this area, that infectious disease specialists were trained wrong on purpose by psychiatrists about something that clearly has nothing to do with psychiatry and no one saw any problem with that other than those suffering the consequences of this catastrophic failure. There is no comparable for this level of FUBAR anywhere in any other profession other than politics. This is war on drugs level of total system failure.

But mostly it's the "and other symptoms" that must be surprising because they are always diminished, even dismissed, even though there is absolutely no reason to do so. But advocates have only been saying so from the beginning and basically all the time since so it's not as if this should be surprising.

At least now we seem to agree on some basic facts. Let's work from there, shall we? Put all opinions aside, leave the quacks entirely out of the discussion. Because this thing where ignorant people's opinions completely destroy an entire field of medicine, overruling basic facts, is really not working out for us, or anyone for that matter, since the quacks are always frustrated at being terrible at their job and being told so and we're unhappy because of all the suffering and dying needlessly. Ready to begin any day.

 

That’s not what I said, you’re twisting my words.

If you have an acute onset of a virus, having ME or not, it’s bad not being examined or having follow ups, that’s what he said, if you look at the context.

 

New blog post from prof Garner, about worsening of his symptoms after exertion, and his previous experience with PVF after Dengue, and a lot of sympathy with the ME community:

https://blogs.bmj.com/bmj/2020/05/19/paul-garner-covid-19-and-fatigue-a-game-of-snakes-and-ladders/

 

Well I'm sorry if I misrepresented what you believe/said. I highlighted the bit I was referring to and believed that's what you were saying.

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Here are the paragraphs in question:

Anyway, it doesn't look like my and other people's public challenging of him has had any negative effects; in fact, it may have helped