Long Covid in the media and social media 2022

https://twitter.com/user/status/1585453208482197504

 

I saw this earlier and it concerns me there isn't an answer that works, what is possible has been tried before. I remain not very hopeful about the ability of the patient community to enact change as we just don't have collectively the energy. Twitter/Facebook protests are very easy to ignore since they cause no civil impact.

We do need to find a way to be more disobedient and disruptive but I have no idea how we can be. I would love to build what the DHSC was talking about, have a register of good and bad interactions with doctors so patients have some defenses and when the DoH finally gets its act together we already have a list of those requiring some retraining on NICE 2021 but frankly my brain isn't up to what would have been a weekend project to get it off the ground before I got ill.

I don't know the answer and I think that is largely the problem we all face, there is very little most of us can do to exert pressure without able bodied help.

 

I agree, and you’ve raised some excellent points that deserve a thread to expand upon.

 

thread
https://twitter.com/user/status/1585827867988197377


Thread on this Canadian Long covid clinic here:
Canada: Edmonton Long covid clinic - Neeja Bakshi

 

Ich kann kein Deutsch verstehen

 

I would need to put the drawing in translate too

 

The text of the Tweet (from Google translate)

The infographic is in English.

Edit: No mention of PEM unfortunately.

 

If you view the image directly, it's fairly readable.

 

https://twitter.com/user/status/1585760032569888770


Edit: link to the official account tweeting this, lots of good comments already

 

https://twitter.com/user/status/1585399257913327624

 

I'm a Physician Battling Long COVID. I Can Assure You It's Real
https://www.medscape.com/viewarticle/983069

So I knew about postexertional malaise (PEM) and postexertional symptom exacerbation (PESE), but I was now experiencing these distressing symptoms firsthand.

Clinicians really need to look for this cardinal sign of long COVID as well as evidence of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). ME/CFS is marked by exacerbation of fatigue or symptoms after an activity that could previously be done without these aftereffects.

In my case, as an All-American Masters miler with several marathons under my belt, running 5 miles is a walk in the park. But now, I pay for those 5 miles for the rest of the day on the couch or with palpitations, dizziness, and fatigue the following day. Busy clinic day full of procedures? I would have to be sitting by the end of it. Bed by 9 PM was not always early enough.​

Gutierrez has been pretty positive about Long Covid, recognized it early on and seemed to have gotten most of the important details before experiencing it.

 

This is a person discussing long Covid on the BBC. The headline is "How is the government going to tackle the NHS and social care crisis?"

Video transcript:
Helen Oakleigh: As someone who has been left disabled by long Covid--I was completely fit and health before, and now my life as I knew it is unrecognizable. I'm not getting appointments, I'm not getting the help. My GP actually says long Covid clinics are a myth.

What we need is multidisciplinary places where you can go, where you can get help, it's just not happening. What is--

Commentator: So how's it affecting you?

Oakleigh: I mean, at my worst, I--I mean, as you saw I came in in a wheelchair. I'm pushing myself to do what I can but it's a blood disease that stops the oxygen getting around your body which affects any or all of your organs. The press keeps saying it's a respiratory disease. In older people, it tends to be more often respiratory, but in younger people it tends more often to be heart or other stuff. So you're seeing increased numbers of heart attacks, things like that. And it is so urgent. People are being left with no help! When you're alone, you don't have a carer, you don't have the help that you need, you are just stuck in bed. You're not able to do the things that you do.

I'm actually a founding member of a charity called Long Covid Support. We've been desperately trying to do what we can to help and support people where we can: reading all the peer research papers that are out there, trying to learn, trying to share that information but where's the support from the experts?!

Commentator: You're saying, you're not getting support. Right, you're not getting support.

Oakleigh: You know. Because we're the ill people. And we're doing our own--we're being the most resilient you can be, and I have met the most resilient people I have met in my life through this. But we need help. And the constant underfunding of the NHS across the board is disgusting! People are dying. People are killing themselves because they don't want to live a disabled life. And that is another issue: The fact that disabled people are looked "less than." We're hard-working, we want to work, we want to do--we wanna get on with our lives! I didn't choose to suddenly stop.

Commentator: Okay (?)

 

Video transcript:
Brian Bennett (Senior White House Correspondent, TIME): Parents who have children going through long Covid around the country and a lot of parents are finding out that their doctors don't know much about long Covid. There are only about a dozen clinics around the country that specialize in long Covid in kids. What are you doing to help educate doctors around the country so that parents have more researches to treat this?

Dr. Ashish Jha (White House COVID-19 Response Coordinator): Yeah, that's a great question. And it's a real problem. Long Covid is a problem that we've recognized early as a substantial issue. So let me talk in broad terms than I'll get much more specific to your question.

Back in April, the President tasked the secretary of HHS to put together an all-of-government response on "What are we doing on long Covid?" "What's our research agenda?" Those reports came out in August. We have continued working to try to think about "How do we use everything from disability to policies to Medicare and Medicaid to make sure we're treating people with long Covid, that we're supporting people with long Covid?"

NIH is running the RECOVER Study, which is not a single study, it's a multifacted approach: Building cohorts, trying to develop new treatments and test them. So there's a lot of work happening inside the federal government because this is a really important priority. The problem is that the medical community is learning about long Covid but long Covid is not a single disease. It's not a single condition. It's probably multiple different things that manifest themselves, so that means that we have to do a lot more research on this.

We do have to get out and get more information out to doctors. We recently had a gathering here at the White House of presidents of all the major medical societies where we talked about key things that need to get out to physicians and nurse practitioners. We talked about long Covid as one of those things that we have to educate the physician workforce. So there's a whole set of effort happening both on physician education, but also on generating the evidence and science to actually figure out how we do a better job taking care of people with long Covid.

Bennett: We'd like you (?) you to get more funding out to those clinics working on long Covid and providing those resources to families going through that.

Jha: So there's funding for research through NIH. We've requested more funding for long Covid working and I think that's gonna be an important part for Congress to step up on. And then if you think about how we fund a lot of these things, we need to make sure (and we're working on this) that Medicare and Medicaid, the other payers, are paying for providing care for individuals for long Covid. And there's a whole bunch of policy stuff that goes into that: We have to have the right codes. We have to actually make sure we can identify people with long Covid. We have to make sure we're reimbursing that care. So there's a ton of policy work that's being done to make sure that we identify people with long Covid and that we take care of them.

 

I think this may be performance art at this point. It's paywalled but the tweets show no indication of the obvious. Seems like we are headed for an especially stupid few years that will definitely feature a "what pandemic? never happened" at some point.

This is what happens when people are sick but it can't be recorded because there is no category of disability for chronic illness:

https://twitter.com/user/status/1585952832808796161

 

https://twitter.com/user/status/1586037269290700800

 

And history simply keeps repeating itself

https://twitter.com/user/status/1586078485092646914

 

Giant hammer has never a thing that didn't look like a crushed nail after it stomped it good:

https://twitter.com/user/status/1586356457137917955

https://twitter.com/user/status/1586392573475577856


Lockdowns have been over for, what, 1.5 years? They lasted at most 4 months, maybe 6 in total? And were staggered anyway. And still people are seriously pretending it's a legitimate excuse? WTH? And not bothered by not making any sense at all, as if people were chained to the floor at home rather than just simply being at home, where, if anything, recreational exercise is one of the things people ended up doing the most of. While the people who work in physical labor definitely did not stay at home and had to do the physical labor while risking infection. Often having to work while they were ill.

Honestly the overlap between extremely dishonest politicians and medicine is dangerously becoming a circle, lying is normal. There is no embarrassment at saying obvious nonsense, even self-contradictory, or even blatant lies that most children would be too embarrassed to pretend to believe. As long as it feels true, that's what it's all about now. Health is now a feeling and basically nothing matters. Awesome.

 

Putting numbers in perspective.

A shift from 72% full-time employment to 44%, a drop of 28 percentage points, is basically apocalyptic in economic terms. At its height during the Great depression, unemployment was 25%. The main difference is that this is a subset of the population, but it's a subset that used to be very standard, healthy working-age adults, for the most part.

Says a lot about how much is invested in denying this. There are very few single events that have caused such a dramatic loss of working age adults. And it's completely ignored because, of all reasons, it's medical. As if illness is so normal and unimportant, weak people being culled basically, that no one can manage to care about it even though taken in isolation it's historical. It's as if disease cancels all our ethics and morality, even our ability to be rational.