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

Lily Valley said:
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/
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I thought, soon I will be back to my proper daily workout routines. I could exercise myself out of this state of lethargy.

I was so wrong.
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Exercise is good. I always loved exercise. I miss exercise. It is not a treatment for post-exertional... let's go with exacerbation. I have a feeling the name PEM may vanish from vocabulary soon enough. Though maybe not the best choice of acronym.

The BPS cult will promote their exercise regime. This will hurt COVID patients the same way it hurt ME patients. Let's end this disaster before it begins and rely on scientific evidence, not ideological zealotry.
 
Lily Valley said:
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/
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Paul Garner is Professor at the Liverpool School of Tropical Medicine. He is Director of the Centre for Evidence Synthesis in Global Health and Co-ordinating Editor of the Cochrane Infectious Diseases Group

Garner's blog said:
I am reading materials about pacing and CFS/ME and listening to the CFS/ME community. I am taken aback that doctors have been so dismissive of what these patients have been saying for so long. I talk to my sister. Her personal experience of ME really helps, and she coaches with practical management of chronic fatigue.
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I know others have said this already, but Professor Garner's experience could be tremendously helpful for us. It's terrific to hear that Dr Shepherd has been in contact with him.

Added: and thanks to Professor Garner's sister. :thumbup:
 
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Some more recent coverage.

40 Percent of Coronavirus Patients Have This One Symptom for Weeks
As the authors of the article note, "Post-viral syndromes have been associated with numerous viruses in the past, but until the pandemic, they were considered relatively rare." They further explain that researchers remain unclear as to whether extended coronavirus symptoms indicate a long-tail recovery, or if instead they reflect a cyclical recurrence of the illness itself, still thriving in the body. Unfortunately, this latter theory has precedent: three fourths of cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) are the result of viral or bacterial infection. It is possible that for some, coronavirus could pose a lifelong threat.
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https://www.msn.com/en-us/health/me...-one-symptom-for-weeks/ar-BB15r3Ed?li=BBnbfcL


Man who had coronavirus symptoms still feels 'possessed by a demon' 83 days after falling ill
The man is professor Paul Gardner. Doesn't appear to have improved much.
"You don't know what you're going to get or when you're going to get it."

The Government says the National Institute for Health Research put out a call on Tuesday for scientists to assist in a study on the "health and social care consequences" of COVID-19 "beyond the acute phase".

Prof Garner said: "It's really horrible. I've now been unwell for three months. I have enormous fatigue. On Monday I walked 5km and the next day I couldn't get out of bed.

"If I do too much it floors me. It's viral fatigue. I don't know how long it will last but it will be weeks to months. Who knows with this disease.

"With some people it takes years with chronic fatigue syndrome.

"I feel I've made a bit of progress since last week so I'm cautiously optimistic and I think most people will get better.
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https://www.liverpoolecho.co.uk/news/liverpool-news/man-who-coronavirus-symptoms-still-18420073


Kiwis infected with Covid-19 still battling debilitating symptoms, despite being cleared of virus
In the last couple of weeks Alice has been given a formal diagnosis of post-viral fatigue by her doctor.

She posts about the diagnosis on a particularly rough week of fatigue 11 weeks post-Covid-19.

"I will be fine - it's just turning out to be a bit of a longer road than any of us expected."

Post-viral fatigue seems to be a common theme among Covid-19 suffers with thousands in social media groups speaking about their symptoms online.

From fatigue, to loss of smell and taste to shortness of breath and muscle aches, thousands of young and old from around the world post about how they’re struggling to recover from their battle with Covid-19.
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One thing I find disappointing is all this "not a big deal, just take months off work and it will be fine" coming from doctors. Most people can't do that, just take months, possibly more, to recover. Without income. Many who have children who don't somehow pause needing parents. Not a big deal. That's completely unrealistic, especially as the most common advice is to ignore it and push through it.

https://www.tvnz.co.nz/one-news/new...litating-symptoms-despite-being-cleared-virus
 
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Shinygleamy said:
I would love to see the exercise folks in America put covid cases through a two day exercise test and see if they come out exactly the same as m.e. folks. Wonder if professor Garner's seen that piece of research? It's something he should be interested in.
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It's an interesting question, but I think there would be serious ethical issues – Covid survivors may still be experiencing their precipitating infection, they haven't been ill long enough to understand their own limits and symptom profiles, and they may still be capable of making a full recovery if not pushed too hard. Unless a protocol exists that doesn't precipitate full-blown PEM, it's probably too soon?
 
BMJ - Paul Garner: Covid-19 at 14 weeks - phantom speed cameras, unknown limits, and harsh penalties

What is worse is that there is increasing evidence that some doctors are dismissing this illness. People write, “I am desperate! My doctor says I have anxiety, but I know this stuff is real”. Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19. Yet for us “long haulers” the symptoms are the same, the management schedules are the same, even if we don’t quite fit the somewhat arbitrary definition of “chronic” at 4 months.

A post-viral tsunami is hitting our health services right now, yet in the UK it doesn’t even seem to be on the national agenda. NICE have issued 28 rapid reviews and guidance on covid-19 this year, but their guidance on the chronic fatigue syndrome/mylagic encephalomyelitis is 13 years old.
 
Paul Garner: Covid-19 at 14 weeks—phantom speed cameras, unknown limits, and harsh penalties
June 23, 2020

What is worse is that there is increasing evidence that some doctors are dismissing this illness. People write, “I am desperate! My doctor says I have anxiety, but I know this stuff is real”. Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19. Yet for us “long haulers” the symptoms are the same, the management schedules are the same, even if we don’t quite fit the somewhat arbitrary definition of “chronic” at 4 months.

A post-viral tsunami is hitting our health services right now, yet in the UK it doesn’t even seem to be on the national agenda. NICE have issued 28 rapid reviews and guidance on covid-19 this year, but their guidance on the chronic fatigue syndrome/mylagic encephalomyelitis is 13 years old. There is little evidence in the UK of a co-ordinated response, that is truly multidisciplinary, involves organizations such as the ME Association, and includes patients.
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https://blogs.bmj.com/bmj/2020/06/2...d-cameras-unknown-limits-and-harsh-penalties/
 
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Nothing beats living illness to understand it. Even when you are an expert on the topic. Very sad to see him not recovering, even with early advice there is no guarantee that rest and pacing improve things.

I highly appreciate Garner's mention of those less fortunate than him, people living on a strained budget and who simply cannot afford time off work. It brings hope to see empathy in this dark area of medicine, that even in his suffering he recognizes that others are in even more dire need of help.

Strong and important words:
This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. We have messed up before, lets’ not do it again with long term covid-19 illness.
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Muirhead echoed the same in the interview shown on the Times article, plainly called the BPS model of ME wrong and harmful. Medicine has been doing harm to us for decades, the very thing that medicine is never supposed to cause.

Let's end this cycle of mindless institutional violence. It has gone on well past a reasonable point. It will be critical to study and acknowledge the failures that created this human rights disaster, so that we make sure it never happens again. It has been ongoing for over a century and brought nothing but pain, suffering and death.

All on the promise of imaginary savings that will never materialize. Austerity isn't just morally wrong, it doesn't even make economic sense.
 
While it's of course horrible he's going through this. I'm really happy with his writing and impressed with his advocacy.

On top of that with his Cochrane connection. This is going to be good! Watch out BPS.
 
Really good article. Paul Garner, if you're reading this, I'm really sorry you are still so sick. And I'm also hugely grateful that you are using some of your limited energy to put the story accurately. You are helping people with post Covid symptoms and at the same time helping people with ME who have been saying the same to our doctors for decades and not being heard.
 
Generally excellent I thought, is he in any way involved with the Cochraine exercise review ?

I thank Anna, a friend who is a physiotherapist specialising in rehabilitation, who helped me learn.

Anna explained that the “busts” can be experienced as a reprint of their entire symptom complex in the acute phase. I had fatigue, headaches and tingling nerves as my main symptom, and that’s what comes back when I overdo it...

I learnt that in convalescence after a severe assault, the body goes into protect mode, so if it isn’t getting space to recover, it shuts you down by bringing an embodied memory of the illness.
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That part sounds a bit like unsupported psycobabble though.
 
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