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

The Week The cost of long COVID

quotes:

Whatever the cause, long COVID mirrors other mysterious, chronic illnesses triggered by viral and bacterial infections. Among them is myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), cases of which have been linked to outbreaks of SARS, Ebola, and other viruses.

...
Treatment generally involves managing symptoms through physical therapy, cognitive exercises, and other treatments. "It's a long process, and people need to make a lot of behavioral and life adjustments," said David Putrino, a rehabilitation specialist who treats long COVID patients at New York's Mount Sinai Hospital.

 

I know there are studies that say the 2002-2004 SARS outbreak caused ME in some infected. I just would like to note the studies used Fukuda CFS criteria. Some of course could fit ME/CFS Canadian criteria or ME ICC criteria but this is not known as they used Fukuda CFS.

 

All anecdotal of course but I’m noticing a fair few people on Twitter who have been sharing their experience of suffering long Covid for the last year on there now sharing they have a year on or longer from onset reached remission or back to 90-95% functioning and able to do aerobic exercise again. Happy for them but could indicate recovery rates may turn out to be better in LC than ME?

 

I got the same impression, might be more similar to post Mono. I know a couple of people that took a year to recover from that without developing ME.

That's why we need good studies on LC so desperately.

If LC will be mostly self limiting drawing a premature connection to ME might harm us more than doing good.

 

Agree @Leila.

 

I have not watched yet, but Solve ME have done a webinar on long CoVid, a 3 part series apparently. Below is part 2.

ETA - apparently it will cover comparisons to ME.

https://www.youtube.com/watch?v=baIGKFlNLY4

 

https://twitter.com/user/status/1441870481125171201

 

"We need to get the word out there' - Irish long Covid patients share their stories"
https://www.breakingnews.ie/ireland...vid-patients-share-their-stories-1187408.html

Includes:

As with many Long Covid stories, these will resonate with many people with ME/CFS

 

Haven’t watched:
https://twitter.com/user/status/1442086251205586955

 

Digital Journal Long COVID and the connection with chronic fatigue syndrome by dr. Tim Sandle

Quote:
Based on evidence from past viral outbreaks, researchers expect that at least 10-12 percent of COVID-19 patients will go on to develop ME/CFS following COVID-19. This tallies with the fact that eighty percent of cases follow an infection. Studies show that viral outbreaks often lead to post-viral illnesses, like ME. In fact, the virus causing COVID-19, is not the first coronavirus to result in documented ME/CFS.

 

The Conversation Social media, activism, trucker caps: the fascinating story behind long COVID by professor Deborah Lupton

quote:

The outstandingly successful example of long COVID is the latest of a history of patient-led support, information sharing, activism, fund raising and involvement in research.

People with new or rare diseases or those whose conditions are contested have often had to fight hard to have their illness acknowledged and appropriately treated.

When HIV/AIDS first emerged in the early 1980s, patient activist groups had major successes in combatting stigma and fighting for support, health care, medical research and drug development.

The most well-known activist organisation was ACT UP, based in the US and led by the LGBTQI community. ACT UP members relied on street marches, protests and rallies to spearhead political action.

Chronic fatigue syndrome (CFS) is another example. People with this syndrome have had to challenge doctors’ assumptions their symptoms are “all in their mind” because the causes and markers of their illness are still open to speculation.

The medical profession has sometimes criticised advocates for being overly “militant” in their efforts to be heard and receive effective treatment.

Yet patient-led research and activism have made great strides in achieving their goals in achieving recognition for HIV, CFS and many other conditions.

 

Dr Sarah Jarvis was on the Jeremy Vine show today talking about long covid, and cfs which she eventually said is now called ME/CFS.

Not related but thought it important to note
https://twitter.com/user/status/1310493541097971713

 

Today's Times2 (print edition page 4) and online version:

https://www.thetimes.co.uk/article/...s-well-they-might-be-something-else-9lnf5tpw0

Got long Covid symptoms? Well, they might be something else

Dr Mark Porter

Monday September 27 2021, 5.00pm, The Times

Nearly a million people across the UK have long Covid-type symptoms, according to the latest survey by the Office for National Statistics (ONS). And for 40 per cent of them their symptoms — typically fatigue, shortness of breath, muscle aches and difficulty concentrating — have persisted for at least a year.

However, the ONS survey depends on self-reporting rather than confirmatory tests and Professor Sir John Bell, a leading researcher from Oxford University, believes the scale of long Covid has been “overblown”. And there is growing concern among other doctors that being too quick to attribute these complaints to a post-Covid syndrome may mask myriad other, often far more treatable conditions that produce similar symptoms...

 

Verywell Health: What Long COVID Awareness Means for People with Chronic Illnesses

"Key Takeaways

• 
  
  
  • People in the chronic illness community are noticing similarities between long COVID and conditions such as myalgic encephalomyelitis (ME) and fibromyalgia.
  • But people with chronic illnesses often have had to struggle for years to be taken seriously and receive a diagnosis.
  • Many hope that long COVID awareness will lead to more acceptance and better research for more conditions

(...)

“Doctors can’t be expected to know everything,” Muirhead says. But at the same time, once they’ve done all the tests and ruled out what they think a patient’s options might be, healthcare providers shouldn’t “turn around and tell the patient they’re making up [their condition],” she adds.


As a doctor who has a chronic illness herself, Muirhead acknowledges she is in a unique position.


“It was only by being on the patient side that I realized the medical profession have massively underestimated hidden disease,” she says. “I was completely ignorant to the knowledge gap between where I stood, and where [the patient] sat.”​

https://www.verywellhealth.com/long-covid-chronic-illness-research-5201370

 

Vision issues are often discussed but there's barely any research even acknowledging them. They seem to be as present in LC as other ME populations, roughly speaking. Usually little discussed since it's not especially disabling compared to other symptoms.

This is the first I've seen of a good visual representation of what some of it looks like. At least to me, and that guy. And I guess whoever did that image. There are probably dozens of us, even! Dozens!

https://twitter.com/user/status/1443662278323326982

 

Same old. Just the same old. Go back 2 decades and it's the same. Go back 4 decades and it's the same, only the medium changes. Also sometimes it's presidents of medical associations saying the same, or whatever. Or professors of economics. Anyone remember that Blanchflower dude from a few years back? Yeah he was at it this week, helping his buddy Sharpe (or was it White?).

To some, this is success. To medicine as a whole, this is success. I mean literally this is success as far as most are concerned, many are badly motivated at keeping things this way and even want to expand massively and never look back.

https://twitter.com/user/status/1443663656844136463

 

https://twitter.com/user/status/1443493521571426304

 

This is a brilliant, short summary of Ed Yong's reporting on Long Covid and ME, and how research efforts must change in order to meet the patients' needs.

https://www.youtube.com/watch?v=1eXiPYtaHSA

 

The Ed Yong video above is amazing. Worth watching and sharing.

Also missed this from 2 days ago, on CNN. Article and video. CNN has a bad habit of having mindlessly inept commentators for the infotainment value but Gupta as a medical reporter is genuinely solid, seems like a good physician.


Long Covid is a bigger problem than we thought
https://www.cnn.com/2021/09/29/world/coronavirus-newsletter-intl-29-09-21/index.html


Features a physician with mild LC symptoms who mentions Lyme as another example of post-infectious illness. At the 18+ month mark that even acknowledging the mass of prior evidence, not just ME and dysautonomia but literally a dozen or so post-pathogen syndromes, is still too difficult just an incredible level of inability to unhook from a belief system and look at reality as it is.

Or to put it in meme form: