Long Covid in the media and social media 2022

Washington Post - Covid long-haulers face grueling fights for disability benefits

(gift link - no paywall for 14 days)

Article mentions ME/CFS, but unlike other Washington Post articles it uses the term "chronic fatigue syndrome." At least it's not "chronic fatigue."

Those of us who have been through the process of applying for disability benefits know that it's a brutal process -- and not only for patients with an ME/CFS diagnosis. It's going to be a rude awakening for so many Long Covid patients.

SSA is understaffed and underfunded. The process for getting benefits is designed to turn people down and hope they give up or die (seriously, a certain percent die while waiting for benefits). It's designed with the idea that there are a whole lot of malingering patients trying to game the system and you have to weed them out.

And getting SSDI (social security disability insurance) benefits is a piece of cake compared to disability benefits covered by ERISA law, but that's another story.

I noticed another weird item in their story about a patient applying for SSDI:

"She continued to submit additional test results after her initial application, with what she said was medical proof of 12 different diagnoses, including post-exertion malaise, chronic fatigue syndrome, dysautonomia, small fiber neuropathy, irritable bowel syndrome, and anxiety and depression."

When did PEM become a diagnosis?

 

Merged thread

Time: Researchers Are Getting Closer to Understanding Long COVID

https://time.com/6153259/what-causes-long-covid/

 

Excellent video. People with Long Covid explaining the effect on their lives.

 

Merged thread

"Voices of Long COVID" (video/radio campaign)

I just heard a spot on the radio called "Voices of Long COVID" which lead me to their website here: https://voicesoflongcovid.org/

It seems to be a collection of interviews with relatively young people (ages 20 to 26) who describe what Long COVID has been like for them.

The similarity to descriptions of ME/CFS is striking, including low stamina, failures of memory and cognition, dizziness and even the delay of the onset of these symptoms until 2-3 weeks (or longer) after the initial infection.


ETA: dizziness

 

Linda Dalton gave a moving 13-minute interview on the Pat Kenny Show on Newstalk (an Irish national radio station) yesterday, March 8 about long Covid.

It included the following:

Pat Kenny: You know this business of post viral syndrome, which is how it is being described because many viruses lead people with certain symptoms for a while and just for a while. This reminds me a bit of the battle of people with ME who are trying to persuade people that ME existed. It’s got a name Myalgic Encephalomyelitis but it took a long time for people to accept this was a real thing and not something of the imagination. There is no question that what you are suffering from is definitely as real as it gets.

Linda Dalton: Yes, Long Covid is very, very similar to ME and CFS, Chronic Fatigue Syndrome so my heart goes out to the society. They do suffer very, very similar traits to long Covid people and they’ve been suffering 20, 30, 40 years without getting their voices heard so hopefully if the doctors find some sort of cure or remedy to this, it will help them also.

https://www.goloudplayer.com/episodes/328977?$deeplink_path=podcast/47/328977&_branch_match_id=788909076450803030&_branch_referrer=H4sIAAAAAAAAA8soKSkottLXL0gxzTTRSywo0MvJzMvWd8kp9w/3dfEOTk2yVzUySUlNLQCJxxcklmTYFuSnJCcWl6gauZmYAwljIwtLc3M1sLLi7JL8gvjSohzbDJDBqsaOQAVAVF5erpeen5NfmlKQk1iZWqSXnJ8LFE4tyCzOB+qCmwIAYyxQ4Y8AAAA=

 

(I'm not sure where to post this, or if it's already been posted.)

Long Covid - Exploring the latest science and pathways forward
From Gez Medinger's YouTube channel.

The opening presentation from the 17th Integrative Healthcare Conference, 2022 in New York. Hosted by David Brady and with a panel including Dr Bruce Patterson, Dr Richard Horowitz, Dr Tom Fabian and Gez Medinger himself. The intention is to cover the latest science and understanding of long covid and what treatments are currently being considered.



I haven't watched the whole video yet, so not sure if it's a recommendation. At the beginning David Brady (whose wife has long covid) mentions ME/CFS and how post-viral conditions are nothing new, and how dismissed and mistreated pwme and have been in past.

https://www.youtube.com/watch?v=El1rdF8XET4

 

I don't have a Nat Geo subscription, but curious if anything of note in this.

https://www.nationalgeographic.com/...the-pandemic-covid-19-still-surprises-experts

 

This passage stood out to me.

The suggestion seems to be that the ME/CFS onset is slower than LC, which is rapid. My experience of presumed LC is of slow onset (before I even recognised it) and then precipitous deterioration. I suspect it's hard for many patients experiencing this to tease it apart, as I had to look back with the retrospectoscope to appreciate it. Anecdotally people can describe recovering from a few days of acute "mild" COVID and then getting very sick a few weeks later, but some are also going straight in to the LC situation. I suspect there's similar variability in ME, also depending on inciting cause, but others here likely have a better view on this.

This post has been copied and following discussion moved to this thread:
Is Long Covid a type of ME/CFS? Discussion thread

 

US Department of Health and Human Services has issued some PSAs (public service announcements) on YouTube (don't know if they are also airing on TV etc) about vaccination as a means of helping prevent LongCOVID


COVID-19 Survivor Story: Katelyn - :15 - YouTube

COVID-19 Survivor Story: Rob - :15 - YouTube

https://www.youtube.com/watch?v=u4rXpL6vjOE

there is a 15 second and a 30 second version

 

Long Covid patients, in search of relief, turn to private company


https://www.nbcnews.com/health/health-news/long-covid-patients-private-company-help-rcna9035

 

Paywalled article today in The Sunday Times
Long Covid: The nightmare a million of us still can't shake off

 

Full story can be read here.

This sounds familiar:

Shocking statistics:

 

The U.S is also running Long-Covid public service announcements (PSA) on tv during basketball games. It's centered on vaccination, but at least they are making people more aware of LC.

Here is one example:

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

 

Twitter thread from the author.

https://twitter.com/user/status/1502961165244190725

 

What is Levine talking about? I am sick of these statements coming from individuals which have no basis in reality. People should have researched ME by now in the context of the pandemic to correct their wrong impressions about it; it is hard to take such people seriously when they continue to spread false information at this stage.

ETA: If someone is trying to compare ME and Long Covid and the upshot of what they are saying is that Long Covid is somehow "worse" or more severe, it's a sign they have not understood either topic.

 

Just to clarify, "unlike CFS" is not within the quote from Dr. Levine; that's the way the journalist has chosen to say it.

 

MIT Sloan Management Review
How Managers Can Support Employees With Long Covid
by Fiona Lowenstein

quote:
Employers can start by learning about post-exertional symptom exacerbation, or post-exertional malaise (PEM), a common symptom of long COVID and related chronic illnesses. People with PEM often have to carefully pace work tasks with rest, because overexertion can lead to temporarily or permanently worsened health.

 

It's terrifying to think that she is still driving with such symptoms.