Long Covid in the media and social media 2023

“Before COVID there really wasn’t this diagnosis of brain fog,” Dr. Halpin said.

maybe not a 'diagnosis' (because it was almost uniquely associated with ME/CFS) but it doesn't take much searching to find its use as a key symptom.

 

Brain Structure, Widespread Connectivity Changes Seen With Long COVID

https://www.medpagetoday.com/meetingcoverage/aan/103186

 

Akiko Iwasaki interviewed on The Long Covid Sessions podcast (Feb 13). Interesting to hear that her initial interest in LC came via Ed Yong, and that then led to her ongoing collaboration with David Putrino, who had also been interviewed by Ed in April/May 2020.

She also discusses the importance of Twitter to her communication with patients and that she's stayed despite the recent management changes.

"I would be nowhere where I am now without that kind of direct patient engagement and learning from the patients." "I really - on a daily basis - am learning new things about what the patients are experiencing ..."

 

An interesting statistic (see figure also):

These figures relate just to private health insurance (which most Australians do not have).

I'd be very interested to see figures on income insurance payouts for Long Covid.

 

https://twitter.com/user/status/1627903127558004736

 

Always a good look, blaming chronically ill advocates for something that, as far as we know, he himself hasn't done himself.

 

I think that may just be James Coyne being unclear, as he often is.

 

The Conversation
We got some key things wrong about long COVID. Here are 5 things we've learned

quote:

In the past we had not devoted sufficient resources to treat post-infectious or immune syndromes such as myalgic encephalitis or chronic fatigue syndrome (ME/CFS). These syndromes are defined by excessive fatigue, which worsens after exertion, and include cognitive impairment or brain fog.

These symptoms are responsible for much of the disease and disability associated with long COVID in many people and are often more prevalent than respiratory problems.

Severe cases of long COVID, ME/CFS and other post-infectious syndromes may include a condition known as POTS (postural orthostatic tachycardia syndrome), where an excessive heart rate results in falls in blood pressure with even mild exertion.

Unlike survivors of COVID pneumonia, people with POTS are much less likely to benefit from traditional exercise-based rehabilitation programmes. Such programs may even exacerbate their symptoms.

Instead, approaches are proposed that have been previously applied to ME/CFS and POTS are proposed, including exercise pacing, and medication regimes. However, there is a lack of good evidence, and while trials are underway, they are few, especially in Australia.

 

Author is Peter Wark, Conjoint Professor, School of Medicine and Public Health, University of Newcastle, AU.

 

Only scanned a comment above but this looks OK to me-
"[James Coyne] Where are the citizen scientists of the #MEcfs #pwME community when someone needs to explain the horrors of an invalid #medically unexplained symptoms” diagnosis, and how it discourages exploration of the physical causes of complex illnesses?"

I've tried to engage with the log covid community [emails and one comment/response to a post on social media] and had one response. Others, on this forum, seem to have been more successful, especially via social media, - well done.
I've suggested this forum to those advocating for long covid.

There are lots of exemplars, like Jonathan and others who worked to improve the NICE guideline - well done, so I'm not so much asking where are the ME/CFS advocates as --- were are the long covid advocates?

 

Where do you think they should be?

I would imagine that, just like the ME community, the vast majority are trying to deal with the devastating effects of their condition, while the few who are able to engage in advocacy are trying to do what they can with the limited amount of energy available to them. Neither communities owe anybody anything, despite what you might think.

 

Frankly, looking at what has happened with LC, we punched way above our weight. We even did a lot of debunking ourselves, it's just that it turns out that evidence is irrelevant in evidence-based medicine, and that, clearly, some patients are way less equal than others.

We lead the horse to the water. We showed it the water. We mimed drinking some of the water. We took water and splashed it on its mouth, then pointed at the water.

We literally cannot do more than this to get a stubborn horse to drink. So I guess we're dealing with something more like a mule, but that may not be fair to mules as they aren't that stubborn.

 

There is a virtual event today on Long Covid, featuring a US Senator pwLC, Tim Kaine (who was Hillary Clinton's VP candidate), and the assistant secretary of the department of Health.

https://twitter.com/user/status/1628080534399356928