Long Covid in the media and social media 2023

Long Covid's Cruelest Symptom: Homelessness
https://www.rollingstone.com/cultur...homeless-chronic-illness-gig-economy-1312460/

 

that was a heartbreaking article. ME is mentioned briefly:

But if the challenges people living with other chronic conditions — like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, and chronic lyme disease — have faced attempting to get workplace accommodations are any indication, those living with long Covid are in for a bumpy ride. “The disability system in this country has been slowly eroding for a long time now,” says Emily Taylor, vice president of advocacy and community engagement for #SolveME — a research and advocacy organization focused on ME/CFS and other long-term chronic illnesses — and a senior staffer at the Long Covid Alliance. “I, as an ME/CFS advocate, want to apologize to all the long-Covid folks and say, ‘If we had made more progress, you would be in a better place right now.’ ”

 

"
Long COVID Now Looks like a Neurological Disease, Helping Doctors to Focus Treatments"


https://www.scientificamerican.com/...tments/?utm_source=pocket-newtab-global-en-GB

 

my heart sank at the opening sentence
"Tara Ghormley has always been an overachiever."
but it improves, (Nath contributes).
towards the end:

 

Is long COVID ‘psychogenic’? Challenging claims that the disease is ‘all in the head’
Ryan Prior | Open Mind Mag | February 28, 2023

https://geneticliteracyproject.org/...ms-that-sufferers-disease-is-all-in-the-head/

eta: mods, maybe this should be in its own thread to increase exposure.

 

Ah, I thought it was familiar. Good to see this excellent piece getting carried elsewhere.

 

https://twitter.com/user/status/1630538980679712770

 

Wish people gave accounts of how they reacted to the gaslighting. If someone treated me like that I'd explain the scientific consensus on ME, and walk out.

Once a doctor tried to blame my symptoms on inactivity, and I straight up roasted her in a MyChart message:

It's my policy that whenever a doctor tries to gaslight me, I rebuke them and ditch them.

 

Medpage today
Evaluating and Treating Children With Long COVID

Quotes (my bold):

Given the overlap between post-COVID condition symptoms and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the collaborative has suggested screening for ME/CFS.

Often the "pattern of fatigue" in children may be similar in both conditions. Morrow noted some children may not meet the 6-month threshold or "full criteria" for ME/CFS.

...

Treatment for systemic or constitutional symptoms of post-COVID conditions should include the following:

• Addressing medical causes of fatigue -- for example, treating anemia with iron supplements
• Implementing "lifestyle modifications" such as ensuring adequate nutrition, hydration, and sleep
• Gradually increasing physical activity or "pacing" as tolerated, while staying alert to possible post-exertional malaise

Patients often require a multidisciplinary approach that leverages a range of traditional therapies -- such as pediatric rehabilitation, physical therapy, occupational therapy, and mental health therapy. Some complementary therapies -- such as yoga, Tai Chi, acupuncture, massage, and meditation may also help with fatigue.

 

Time is a flat circle. GET is now pacing, and don’t forget to throw in some acupuncture. The evidentiary double standard is so blatant, and the people charged with enforcing rigorous compliance eat this nonsense up

 

Was curious if anyone has New Scientist access: 'We’re starting to understand how viruses trigger chronic conditions'

'Widespread cases of long covid have shone a spotlight on the role viral infections play in previously neglected conditions like chronic fatigue syndrome and fibromyalgia'

https://www.newscientist.com/article/mg25734282-100-were-starting-to-understand-how-viruses-trigger-chronic-conditions/

 

I don't have access, but this correction notice does not inspire confidence:

 

"While staying alert to" - how exactly . If you provoke PEM you could be on a slippery slope. Kids could be in rolling PEM without realising the significance - it's very hard to get kids to rest.

Any objective measures like heart rate monitoring to help assess, define and help manage/ avoid PEM .
Or is this too much to expect ?

 

https://twitter.com/user/status/1630708115636387841

 

Unable to access, would be curious to read.

New Scientist: "Long-neglected chronic conditions finally come into the spotlight"

'Growing evidence that long-term conditions like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia are caused, wholly or in part, by viral infections is good news for millions of people'

https://www.newscientist.com/articl...c-conditions-finally-come-into-the-spotlight/

 

thread:
https://twitter.com/user/status/1631068630979887106

 

https://twitter.com/user/status/1631051112261509123