News about Long Covid including its relationship to ME/CFS 2020 to 2021

[Wits_End]

I think you'll probably find that "gallows humour" is a coping strategy for many medical professions.

 

[Sean]

I think you'll probably find that "gallows humour" is a coping strategy for many medical professions.

I used to work in the medical system, including in the wards and dealing with patients and medical staff every day, and socialising with the staff after hours, and I get why they need to do gallows humour. If they didn't they would go mad with shock and grief. None of them would last in the job.

I understand why it looks bad to outsiders, and I am not excusing every instance of it. Sometimes they go too far and let their prejudice over ride basic decency and professional ethics, like they often do with ME/CFS patients, and they have to be held to account for it.

But I get why it happens.

 

[mango]

I get why they need to do gallows humour.

I'm not sure if the expression "gallows humour" is used differently in English, but in Swedish "gallows humor" means making "dark jokes" about your own miserable situation, or about yourself. "Gallows humour" is different from "put-down humour", it's not about making jokes at the expense of someone else, it's not about kicking someone when they are down.

Adding to clarify: I wouldn't call what they are doing "gallows humor". Their so called "jokes" are clearly not about themselves as doctors, but about their patients.

 

[Sean]

I'm not sure if the expression "gallows humour" is used differently in English,

That is possible.

 

[Saz94]

So we have stats showing that around 10% of covid patients still have symptoms after 3 weeks. But do we have stats for a longer time period than that?? 3 weeks isn't very long. I'm more concerned to know how many still have symptoms after a month or so.

Either way, it's still obviously very early days though.

With glandular fever it is fairly normal for post viral fatigue to last a couple of months.

 

[lunarainbows]

So we have stats showing that around 10% of covid patients still have symptoms after 3 weeks. But do we have stats for a longer time period than that?? 3 weeks isn't very long. I'm more concerned to know how many still have symptoms after a month or so.

Either way, it's still obviously very early days though.

With glandular fever it is fairly normal for post viral fatigue to last a couple of months.

And it may be that we need to also follow them up up to a year or two later too. I “recovered” from my viral infection for up to 8 months. And then started going downhill again after 8 months.. very slowly at first, I hardly realised.. then it got very bad very quickly. All in all it took 1 year and 4 months after my viral infection; for my ME to be diagnosed as ME and to become severe. (If I had been diagnosed when mild, maybe I would say I could have been diagnosed with mild ME at around 10-11 months after infection). My infection was suspected to be HHV6, from blood tests, a cousin of EBV.

 

[lunarainbows]

 

[Robert 1973]

My comment has now been published: https://blogs.bmj.com/bmj/2020/06/2...d-cameras-unknown-limits-and-harsh-penalties/

 

[Trish]

Excellent, thank you @Robert 1973.

 

[chrisb]

I once followed up that quote and it seemed to have been directed at J Gordon Parish.

Those familiar with Osler's Web will recall that Parish was also treated with disdain at the Holme's conference discussing the criteria for CFS. He did not deserve this treatment.

EDIT added omitted word

 

[Mithriel]

Most report having been previously healthy, and show relatively mild symptoms in the initial phase of illness.

I felt this was my experience and I noted it in a lot of people I knew in the days before CFS. It makes me wonder if the mild symptoms are because the virus evades the immune system so it gets deep into the body. Then the disease can become long term for the same reason.

Also, if you have milder symptoms it is easier to do too much causing more damage than if you are forced to rest because you feel so bad.

(I say before CFS because after that there were more people with EBV where they were very ill right from the beginning. EBV works differently in the body from other viruses.)

 

[Robert 1973]

I see that Paul Garner’s blog is the most read article on the BMJ Opion website. It has over 8,840 shares on Facebook. The second most read article has 1,350 share and the third has 120. I hope this may alert the BMJ to the importance of these issues he raises.

Please keep sharing. And please upvote my comment on the BMJ site so that more people see it.

 

[rvallee]

I think you'll probably find that "gallows humour" is a coping strategy for many medical professions.

It's not even correct, though. It's the people sentenced to the gallows who make humor about their own predicament, not the ones leading them there or guarding them.

On COVID-19, doctors have legitimate grievances that can be leveled at authorities. There should be. That's punching up, aka holding authorities responsible. Mocking patients is punching down. This is what bullies do and it has nothing to do with gallows humor.

Have they considered yoga? Maybe they should take their own advice and do some yoga, it will do some good for their anger. Or maybe some mindfulness, or perhaps some CBT. Punching down on vulnerable people is just grotesque, even more so in a position of statutory authority.

 

[Dolphin]

‘What if I don’t get better?’ Some COVID-19 survivors struggle with symptoms for weeks, even months, mystifying doctors.

By ANGIE LEVENTIS LOURGOS
CHICAGO TRIBUNE |
JUN 30, 2020 AT 11:17 AM

https://www.chicagotribune.com/coro...0200630-cge3ve6y6zbh3p7pxd3tdcjrua-story.html

While many COVID-19 patients bounce back relatively quickly from mild cases — and others are asymptomatic — Panettieri said a growing number are reporting a prolonged recuperation often marked by intense fatigue. Many of these survivors are younger and without major underlying medical conditions; some were even athletes, he said.

“Even those who weren’t in the (intensive care unit) or put on a ventilator have manifested this almost chronic fatigue-like syndrome for a period of time, displaced by weeks and sometimes even months, and it’s somewhat inexplicable,” said Panettieri, who is leading a six-month study of COVID-19 in front-line hospital workers.

For Malina, the most troubling thought is that her health and stamina might never return to normal. She has read about patients who survived SARS years ago but suffered abiding chronic fatigue syndrome-like symptoms, without relief.

“To function at this level long-term is just really scary,” she said. “I don’t know at what point I shifted from ‘when am I going to get better?’ to ‘what if I don’t get better?’”

It's a pity this keeps getting reported:

“The illness ebbs and flows, but never goes away,” he wrote. “Health professionals, employers, partners, and people with the disease need to know that this illness can last for weeks, and the long tail is not some ‘post-viral fatigue syndrome’ — it is the disease.”

 

[Dolphin]

http://cuphysioresearch.coventry.do...-it-change-perceptions-about-chronic-fatigue/

COVID 19 – will it change perceptions about chronic fatigue?

• Reflections

Written by Dr Andrew King

What happens in rehabilitation for people like this? In accordance with the evidence of the PACE trial (White et al. 2011) some physiotherapists have tried to apply Graded Exercise Programmes to people with Chronic Fatigue Syndrome, but with varying success. Some researchers (as well as the Chronic Fatigue Syndrome lobbyists) have cast doubt on the PACE trial’s findings (Matthees et al. 2016).

 

[Jaybee00]

Another disaster article from NYT— mentions psychologists but not MECFS

maybe someone on twitter could @ her

 

[Mij]

The article does mention PICS (Post Intensive Care Syndrome).

 

[Andy]

US: Coronavirus Patient And His Doctor Explain ‘Long-Haul’ Symptoms | TODAY
Copy and paste this link

https://youtu.be/GTTx6nNMiuU?t=301

to jump to the section where the doctor mentions PEM and ME/CFS.

 

[Dolphin]

Source: Voice of America
Date: July 1, 2020
URL: https://www.voazimbabwe.com/a/coronavirus-covid-19/5485093.html

And some may never recover and likely will suffer long-term health
consequences. Thousands of the 'recovered' are already suffering from
chronic fatigue syndrome and other debilitating conditions.

Medical researchers say some clues about the long-term health
implications may be gleaned from follow-up studies in Hong Kong into two
other coronaviruses, SARS and MERS-CoV. One study into the long-term
effects of SARS showed that 50 percent of survivors had much reduced
physical capacity two years later compared to those who never became
infected. And only 78 percent of SARS patients were able to return to
work a year after the infection. Another Hong Kong study found that 40
percent of people recovering from SARS still had chronic fatigue
symptoms more than three years later.

 

[Dolphin]

CORONAVIRUS (COVID-19)
5 Potential Long-Term Effects of COVID-19
It’s a new virus, and experts are learning more each day about the ways it could affect you in the months following diagnosis.

Sarah Ellis
HEALTH WRITER
July 1, 2020

https://www.healthcentral.com/article/long-term-effects-coronavirus

Chronic Fatigue
Dr. Chotani notes that in previous studies of SARS (a coronavirus that spread throughout the world in the early 2000s), survivors sometimes showed signs of fatigue and muscle weakness for years afterward. “What we know is that SARS survivors had poorer exercise capacity and health status and had chronic fatigue symptoms 3.5 years after being diagnosed,” he explains. “So, one possible long-term effect is chronic fatigue syndrome.” The specific cause of chronic fatigue syndrome is unknown, but one notable trigger is viral infections, which can cause significant stress to your internal organs.


Unfortunately, it won’t be clear for awhile which effects of COVID-19 are long-lasting or permanent. “I think we’re going to have to wait at least a year before we know whether some of the organs involved in infection could show some damage that we think has passed already,” Dr. Comellas explains. The hope is that some of these effects may lessen or disappear as the body recovers from illness.

The key will be identifying survivors at different intervals for doctors to assess. “We need survivors at one-month intervals, three-month intervals, one-year intervals, and ten-year intervals … in order to get a complete picture,” Dr. Galiatsatos says. “It will take time for us to say in confidence what survival of COVID-19 looks like.”