Long Covid in the media and social media 2022

I tried it about a decade or so ago, self referring.

Took them a very long time to visit, around 18 months or so, and all that was on offer was a panic button, a few rails, and the 'gateway care' of someone to give me a shower (which would be a nice trick as I don't have one). If not prepared to have someone bathe me then clearly I didn't need help with domestic stuff, like cooking cleaning, shopping etc so no care was available to me.

They were also supposed to be installing a wet room, which they morphed into my moving (2nd floor, mobility issues) and they ended up just sending me forms (housing application forms), which I couldn't complete, which as I wasn't entitled to care they couldn't be arsed to help with, and after 28 days they discharged me.

No care, no wet room (or even a shower), no ground floor flat - nothing - other than 3 rails in the bathroom thoughtfully fitted in the wrong places (I've had to move them).

and they have less money and staff now.

So, try by all means, but social services ain't what they used to be - which may be why the NHS finds it problematic discharging people from hospital to their 'care'.

 

cannot read more than part o it or health reasons but yong seems to understand not only scientific and other facts, and teh central topics, but also the kind of rhetoric that is needed to get past the persecution and stupidity.

in this case he slides the persecuted diseases in sideways while talking logically about the stuff that grabs eerybody. it's like, iuf the reader is nodding his or her head for the first part, then he or she has to accept the persecuted stuff too.

so much of the rhetoric for the persecuted diseases is a slow inching back of the overton window, starting from teh extreme position where it is now. at that rate it will take centuries for the public and policymakers and doctors and scientists to emotionally process the fact that the diseases are extremely serious and are societal level extreme catastrophes that demand immediate attention and are targes of mass persecution.

even if they are nodding their heads they will not get it until they go through the social and emotional processing of facts that they are unfamiliar with and don't want to believe. it takes too much time to do that.

but yong does it differently it seems. he came on the sene and got it from day one or at least it seemed like that. and i'm senseing maybe he is thinking about rhetori also? not sure but still. he could be just making sense which is good too.

one tactic for reaching those who need to be reached is NOT to compromise or give a partial-strength answer -- overton windowing yourself -- but tell the truth as it is, and frame it by strengthening OTHER parts of the accurate frame that multiple framers [those who hold sets of beliefs etc. that might or might not be contradictory] hold in the frame that you want them to use. yong seems to maybe do this while he is doing the above, talking rationally and then sliding in the persecuted diseases so that they can be interpreted only in terms of the prepared frame. cognitive dissonance not to.

 

As @rvallee says, Ed Yong can understand ME, while many doctors can't. (Or won't.)

I have often wondered why listing symptoms of a neurological nature: constant dizziness, brain fog, poor memory, foot dragging, proprioception and balance problems, orthostatic intolerance etc., never led to a brain scan test.

ETA: I have such a great memory that I forgot the ongoing headaches I had for several years. The maximum amount of OTC painkillers barely touched the daily headaches. I still get them.

One would think, surely terrible daily headaches for years would call for a brain scan, but no, that was not the case.

 

Some tests also used for brain testing are advised against in the 2007 guideline.

 

Yep. MRI was probably advised against in the NICE guidelines.

I'm in Canada. I don't know if our medical system advised skipping brain scans for ME. Possibly.

I think in my case and doubtless many others, the concept of hysterical female played a part. As well, it appears Canadian guidance said CFS would just last one to three years. So why spend extra money on "crazy girls", who are just going to feel a bit under the weather for a while.

 

Ed Yong's article noted above is excellent. And, the descriptions pwLC give regarding their brain fog are disturbingly right on.

For a long time I couldn't hold in my brain a phone number just after I looked it up, and went to dial the number. And, I couldn't read or understand longer or slightly complex passages.

When the brain fog kicks in I feel like I'm looking down a tunnel at things. I am a slow to reply, and get confused.

I can't photocopy a few pages without getting confused as to which is the original and which is the copy. I still can't remember who is whom in novels. I need a chart or list like in stage plays.

I still have to read simple instructions over and over. And, the list goes on.

I feel like the thoughts in my brain don't join up. They get lost in the distance they have to travel.

Brain fog for all its supposed silly name is horrendous torture.

ETA: "When the brain fog kicks in", should say when it worsens.

And, I still have a terrible time understanding long and/or complex passages.

 

Ed Yong's explanation of cognitive impairment in his article was spot-on. He was right to emphasize that long Covid cognitive impairment mostly affects executive function. This matches my lived experience exactly. I'm autistic, so I've always had some degree of trouble with executive functioning, but ME made it so much worse. The most difficult areas for me are attention, organization, and planning. It's solidly my second most disabling symptom after PEM.

 

Executive dysfunction is also one of my most worrisome symptoms. It makes it very difficult to get a job, even one that permits working from home. Struggling to maintain a 4-digit code in your working memory, or a phone number you just looked up, these sorts of things are really troubling.

 

I have executive function problems too.

 

Merged
The following day, chronic disease advocates protested in front of the White House, arguing that Long COVID and the related condition myalgic encephalomyelitis/chronic fatigue syndrome constitute a public-health emergency and demanding that the Biden Administration improve its public-education campaigns, financial support for patients, and research efforts.

https://time.com/6213103/us-government-long-covid-response/

 

https://twitter.com/user/status/1572238942631768067

 

https://twitter.com/user/status/1570861341233106944


Rachel Levine is current US Assistant Secretary of Health and Human Services (i.e. #2 in the department) and a pediatrician by training. Not sure if this directly relates to the working group that was supposed to do something and hasn't done much so far.

 

New article in Teen Vogue by Fiona Lowenstein

What Long COVID Is Like For These 14 People

https://www.teenvogue.com/story/what-long-covid-is-like-for-these-8-people

 

https://twitter.com/user/status/1572348799603077120

 

the BMJ How "long covid" is shedding light on postviral syndromes by Brian Owens

quote:

At first, the patients with long covid seemed to have a lot in common with people with postural orthostatic tachycardia syndrome (POTS), a blood circulation disorder characterised by elevated heart rate and other symptoms brought on by standing up, as fatigue and brain fog are also common symptoms of that condition. So Azola, a physical and rehabilitation physician, along with a team of physiotherapists, started treating these patients using the same protocols as for POTS, focusing on things such as diet and exercise.

But after about three months it was clear that this exercise focused treatment regimen was not working. The team realised that long covid was more like ME/CFS, says Azola, and began drawing on ideas from that area instead. This meant focusing on managing and conserving energy levels and understanding which triggers can bring on fatigue, to get off what she calls the “corona-coaster,” where patients start to feel better, become more active, and then crash.

She says that, in the absence of a reliable treatment or cure, patients need to learn to live with the condition by being selective with their energy and what they invest it in, which can be as simple as using a chair in the shower to avoid unnecessary exertion. “I learned all of this from the ME/CFS community,” she says.

 

MIT Technology Review
We've only just begun to examine the racial disparities of long covid

quote:
Researchers suspect that some populations are being hit especially hard by long covid because of disparities in health care. In fact, that’s exactly what happened with covid itself. According to the US Centers for Disease Control and Prevention, Black people in the US are more than twice as likely as white people to be hospitalized for covid and almost twice as likely to die. Black women, who have a high rate of preexisting conditions and are overrepresented in occupations where exposure to the virus is more likely, are particularly vulnerable: a study published last year showed they are three times as likely to die of covid as white men.

“Covid-19 disproportionately affects minority communities in the number of cases,” says Luis Ostrosky, an infectious disease specialist and epidemiologist at the University of Texas Health Science Center at Houston. “The mortality rate is higher, and so is morbidity,” he adds. That means there are more deaths as well as higher case rates than in white communities.

 

Merged thread

Girl, 10, with long Covid completes garden lap unaided after re-learning how to walk

I saw the following on my local news website today and was somewhat concerned - surely there is a possibility that she could end up permanently worse? Should she not be continuing to rest?

https://www.itv.com/news/westcountr...den-lap-unaided-after-re-learning-how-to-walk

A 10-year-old girl from Yeovil who was diagnosed with long Covid has completed a lap of her garden unaided for the first time after having to relearn how to walk.

Emily Saville was left in severe pain and lost movement on the left side of her body after she tested positive for coronavirus in September last year.

"It's been a pretty devastating time for us as a family," Emily's mum, Louise, told ITV News West Country.

"We've had to learn how to re-adapt and become a different family now.

"In seconds Emily lost the use of her left side and then we had to start a new chapter of our lives. It's been really tricky, but Emily is an inspiration to us all."