Long Covid in the media and social media 2023

[Kalliope]

RNZ Long Covid and ME/CFs are the same illness, researcher says

quote:
Long Covid and ME/CFS (formerly known as Chronic Fatigue Syndrome) are effectively the same illness, according to a University of Otago researcher.

Emeritus Professor Warren Tate leads a team at the University of Otago's Department of Biochemistry that has been examining the similarities in the molecular patterns of long Covid and ME/CFS patients.

Tate told Nine to Noon these similarities were so great that it was “a travesty of justice” that people with the illnesses were treated differently.

 

[Sly Saint]

ME/CFS (formerly known as Chronic Fatigue Syndrome)

this is a good sign. (usually has Chronic Fatigue syndrome, aka ME)

 

[ahimsa]

From the Washington Post:

For covid long-haulers, the pandemic is far from over

The end of the public health emergency leaves many fearful they will be forgotten

regular link: https://www.washingtonpost.com/health/2023/05/29/long-covid-patients-public-health-emergency/

gift link: https://wapo.st/3oyOX6l

I haven't read the whole thing yet but here are two quotes.

This section mentions Millions Missing event at the Washington Monument -

“I have heard of long-covid clinics closing and dropping patients,” Ziegler said. “At some point, the doctors that are researching it may just give up. Where does that leave all of us?”

The end of the public health emergency in May represented a pivotal moment.

Patient advocates installed hundreds of red cots on the National Mall that proclaimed “Still here, still sick.” *

Physicians from the American Academy of Physical Medicine and Rehabilitation called for renewed focus on the ongoing personal and societal impact of post-infection conditions. The long-covid peer-support group Body Politic tweeted that it would be closing down its original Slack channel system at the end of May and transitioning to an existing, better-funded app. And Survivor Corps, a long-hauler advocacy group and vocal critic of the pace of government research, announced it had shut down as philanthropic funding waned.

EDIT - * I don't remember seeing the phrase "Still here, still sick" but I could have missed that. I just looked closer and saw that this phrase was written on the red blankets draped across the cots.

A different phrase - "Still sick, still fighting" - was seen on t-shirts and pillowcases and was also a common hashtag.

This section has a quote from Emily Taylor from Solve M.E. -

Physicians and patients alike say the threat is clear: that long covid could lose the funding that had raised hopes of solving the mysteries behind a slew of apparently post-viral conditions.

And fears have crept in that long-haulers will face a fate akin to that of people with chronic fatigue syndrome — marginalized and misunderstood, with a lack of medical evidence to explain or treat their symptoms and little impetus for researchers to dedicate their careers to such confounding cases.

“Those fears are very well-grounded,” said Emily Taylor, vice president for advocacy and engagement at Solve M.E., a nonprofit for people with myalgic encephalomyelitis/chronic fatigue syndrome, known as ME/CFS.

“What we know from ME/CFS and other post-viral diseases is that the recovery rate drops after about four years,” Taylor said.

 

[ahimsa]

[Moderators - please move if this goes too much off topic. Thanks!]

“What we know from ME/CFS and other post-viral diseases is that the recovery rate drops after about four years,” Taylor said.

(quote from Emily Taylor of Solve M.E.)

I'm not trying to pick on Emily Taylor, or disagree with her comment.

But does anyone have a source for that claim about recovery rate dropping after four years?

 

[Jaybee00]

Post copied to
Anti-SARS-CoV-2 Monoclonal Antibodies for Long COVID (COVID-19) (outSMART-LC)

 

[Jaybee00]

 

[RedFox]

So...today we learned that in America they're testing an antibody drug and in Britain they're testing breaks from sitting? Talk about a microcosm of LC research.

 

[Ebb Tide]

Re BBC R4's News Quiz mentioned earlier in the thread, sufficient complaints to the Feedback programme on the same station sometimes forces someone from further up the hierarchy to respond.

 

[Sly Saint]

[Moderators - please move if this goes too much off topic. Thanks!]


I'm not trying to pick on Emily Taylor, or disagree with her comment.

But does anyone have a source for that claim about recovery rate dropping after four years?

don't know where the 4 years comes from but in the CMO report in 2002 it said:

Overall, there is wide variation in the duration of illness, with some people recov-
ering in less than two years, while others remain ill after several decades.Those who
have been affected for several years seem less likely to recover; full recovery after
symptoms persist more than five years is rare.

http://www.erythos.com/gibsonenquiry/docs/cmoreport.pdf

 

[Jaybee00]

 

[Jaybee00]

 

[Wyva]

A very popular torrent website, rarbg has just shut down. This is what you can read on the website now about the reasons:

Hello guys,
We would like to inform you that we have decided to shut down our site.
The past 2 years have been very difficult for us - some of the people in our team died due to covid complications,
others still suffer the side effects of it - not being able to work at all.
Some are also fighting the war in Europe - ON BOTH SIDES.
Also, the power price increase in data centers in Europe hit us pretty hard.
Inflation makes our daily expenses impossible to bare.
Therefore we can no longer run this site without massive expenses that we can no longer cover out of pocket.
After an unanimous vote we've decided that we can no longer do it.
We are sorry
Bye​

 

[Trish]

A very popular torrent website, rarbg has just shut down.

What's a torrent website?

 

[Shadrach Loom]

What's a torrent website?

Hubs for exchanging unlicensed media content, especially films and music. They represent a certain amount of legal risk and very little reward for the administrators, who are predominantly enthusiast/activist types. It’s therefore not unusual for torrent sites to disappear from time to time.

 

[Wyva]

Basically, this was one of the largest internet pirate websites you could find.

 

[Sean]

Hubs for exchanging unlicensed media content,

True, but torrenting itself is a very efficient and low cost way of transferring files, including legal ones. It is used by legit operations all the time. Linux OS distributions, and a lot of archive.org content, for example, are available via torrents.

 

[ahimsa]

From The Los Angeles Times:

Long COVID takes heavy toll on health even as pandemic fades, study shows

https://www.latimes.com/california/...s-long-covid-a-new-study-provides-fresh-clues

One in 10 people infected with the coronavirus during the Omicron era suffered from long COVID, according to preliminary data from a new study — indicating the syndrome remains a notable threat even in the pandemic’s post-emergency phase.

The initial finding, published May 25 in the Journal of the American Medical Assn., was based on 2,231 patients who had their first coronavirus infection on or after Dec. 1, 2021, when the Omicron strain started to dominate the nation.

Of them, data indicate that 224 patients, or 10%, were classified as having long COVID six months after their acute infection. The categorization was made after scientists developed their own data-based definition of the syndrome, based on a number of symptoms that were more likely to be seen in patients with a prior coronavirus infection.

 

[Sly Saint]

Changes in pandemic-era benefits mean new hardship for millions
Ending the pandemic emergency increases burdens for people with long COVID

With the official end of the COVID-19 public health emergency, in May the federal government rolled back nearly all benefits that were broadened in 2020 to accommodate the waves of newly sick and financially vulnerable. Now those suffering from long COVID could lose supplemental income, food stamps and Medicaid just when they need it most.

People with long COVID, a catchall term for a wide range of often debilitating health problems potentially lasting long after an initial COVID infection, now face new barriers to accessing food or supplemental income. These requirements include filling out additional, complicated forms; providing medical documentation; and submitting to in-person interviews.

"Doctors who are not informed well on long COVID may say your tests are coming back normal," McCorkell said. "Some doctors are not aware of the right tests to use and are not familiar with other post-viral syndromes like ME/CFS [myalgic encephalomyelitis/chronic fatigue syndrome], which has a huge overlap [with long COVID]."

https://www.salon.com/2023/06/02/ch...rdship-for-millions_partner/?ref=upstract.com

 

[JemPD]

BBC News Quiz mocking people with long covid again:


Last week I emailed News Quiz to express my disappointment that they were making fun of people with Long Covid. Their only response was to repeat the offence this week. Haven’t decided if I will send a formal complaint but others on Twitter have said they have.

We can’t make political comments on here but I would suggest that there is a correlation between people with certain political views and those who think it’s funny to mock people who are sick and disabled (particularly with LC and ME/CFS). I note that Simon Evans writes for Spiked, which emerged from the ashes of Living Marxism (later LM) and has various associations with BPS proponents. Another panellist is from the Tufton Street stable which also has RCP/LM connections.

LC jokes at start of episode 4: https://www.bbc.co.uk/programmes/m001lz10

LC jokes at 16m: https://www.bbc.co.uk/sounds/play/m001m53k

Only available for 31 days from date of broadcast.

News Quiz has been a favourite programme of mine for many years. When i went to listen to it last night on iplayer, i couldnt believe my ears. It actually really upset me i never expected to be mocked from that source, i thought i was at least safe on the News Quiz.

I'd already been thinking it just not very funny any more, but that was the last straw for me. I must admit to having a moment of intensely hoping he gets it, then he'll be 'laughing on the other side of his face', as my mother would have said. Not very Christian of me but there we are, I'm sick of our suffering being a punch line.

Bring back Toksvig & Hardy, who used to make me laugh out loud every week

 

[SNT Gatchaman]

Bring back Toksvig & Hardy, who used to make me laugh out loud every week

Quoting for truth. I stopped listening after that era - it's been a shadow of its former self to put it kindly. My wife and I used to look forward every week and eagerly await its return from its regular hiatus.

ETA Honestly some of the best days of the before times were dropping mooring lines, motoring out, getting the sails up and settling down to the sound of lapping water, Sandi's commentaries and Jeremy's rants.