Long Covid in the media and social media 2022

No one needs more oversight than people who assure you they don't need oversight. Especially people who have made it clear they have always needed all the oversight and for whom lack of oversight has caused them to fail completely at this very issue, which they insist they need no oversight for.

Medicine is completely out of its depth here. Time to say it, the profession has hit a wall of its own making and is paralyzed by inaction and a weird mix of mythology and ideology. It badly needs leadership and it won't come from within, so much that freaking US senators, about the last place anyone can expect any political leadership to come from, actually has to speak out about the very visible emperor's lack of any clothes.

https://twitter.com/user/status/1516893752513679360

 

post copied to the WHO news thread

COVID-19 technical lead at the WHO. Has mentioned LC a few times before. I am not aware that the WHO has actually done anything beyond thoughts and prayers. Maybe they can't, it's not clear. On this it seems more like the UN, club members can choose to listen to advice, or not. If everyone chooses to do nothing, the WHO can't do any more.

Right now the move would be from "none" to "all". No small task. Many countries have said it plainly they plan to do nothing, not the absence of a plan, doing nothing is the plan.

https://twitter.com/user/status/1516888591867297794

 

[this is a general reply to page 4 of this thread.] i greatly appreciate the summary descriptions of articles and social media posts and videos. i usually cannot go to the original source [and have js turned off partly to not have things show up]. thank you to all.

i wonder what constitutes doing your research. i am curious what reporters and others do to get up to speed. the history of m.e. alone, and all the attacked diseases combined, is complex and filled with propaganda and errors.

yet it seems the lc community has figured it out. [at least that is what i saw in my few data points and filter bubble.] they are getting their facts someplace. i am impressed when something in the media does not get anything wrong. it is basically as if somebody got a phd in misopathy or at least m.e. history in a year. i hope more pwlc and professionals of that hogwash ignoring caliber join the forum.

it's gratifying when ed yong and long covid activists get it right the first time and focus on a subtle point.

 

Oh, no "almost" there. It is as clear and blatant dereliction of duty as it gets, entirely debunked and continuing only by coercive statutory force fueled by ideology.

The consequences are the same as recommending that we should end everything about Parkinson's disease and re-classify it as a functional movement disorder from chronic anxiety. Just end everything, kick out all the patients. Every horrible consequence that can be imagined to follow such a decision can be understood and applies in full to us. There is no difference between using the inertia of having failed vs. doing it on purpose, here and now, with Parkinson's, or any other disease.

We are way past mere irresponsible here, it has long reached the point of being a human rights disaster.

 

Sorry it took me so long to reply!

I'm not sure what's wrong! Maybe Washington Post gift links don't work in certain locations/regions?

Or maybe they only work if you turn off tracking protection, or allow ads, or something like that? I wish I could figure this out!

There is nothing on the help page about being these links restricted to certain countries or locations:

https://helpcenter.washingtonpost.com/hc/en-us/articles/4403823008539-How-to-Use-Gift-Articles

I'm not sure what's going on, but I went back and edited my post to include the regular link to that same article. I think non-subscribers get a set number of articles per month. So folks might be able to read the article that way.

 

The recording of today's Independent Sage session on Long Covid has been posted.

YouTube summary: "Joined by guests Prof Paula Lorgelly and Prof Andre Siqueira, and chaired by Prof Danny Altmann, today we are discussing concerns surrounding Long Covid. With Prof. Anthony Costello hosting and Dr. Deepti Gurdasani on numbers."

Full video:

https://www.youtube.com/watch?v=K9-Ewysj2XU

A short extract of this video (about 2 mins) was posted by @ABrokenBattery on twitter. It's from the Q&A session, with two people answering the very last question, which was (paraphrased):

A proportion of people with Long Covid have a disease that looks identical to ME/CFS. This suggests that ME/CFS is incredibly important. But from what I read it often seems to be left out of the conversation. Why do you think this is? And what research is currently looking into whether a subset of Long Covid is the same as ME/CFS?​

EDIT: Just FYI, I have not watched this full video, only that short extract from the very end. I did notice that there are no closed captions.

 

And still the madness continues
https://twitter.com/user/status/1517607284448370689

 

I see sporadic discussion of this. One particular way is from LC deniers who want to attribute everything to psychology and so focus obsessively on previous "mental health" worsening, but since it applies to known physical disabilities, and how so much of "mental health" labels are actually misdiagnosed medical conditions, fair chance this is the real phenomenon and it's simply misinterpreted.

For sure it seems true of pwME who catch Covid, and chronic illness in general.

https://twitter.com/user/status/1517536112301907968

 

Interesting comment about Long Covid from Dr. Deepti Gurdasani, seen on twitter:

"Long COVID isn't a trivial condition by any means, and it's clear that for many people it's persistent (which might explain why we have >780,000 people with illness for >1 yr). Essentially, if a patient doesn't recover by 12 wks, recovery by 6 months is unlikely."
​

Link to this tweet below, clicking on that should show the whole thread (which I did not transcribe - it's a very long thread!).

 

The worry is that the investigators at Putrino Lab don't seem to have even considered the fact that reported symptoms is not the same as experienced symptoms and the apparent language associated with prior health issues could be due to reporting bias - people use the language they know and have experience with using.

 

Fatigue due to long COVID-19 requires slowing down

Scheibenbogen and dr. Martina Lukas explain PEM and pacing and staying within your energy limits. Edit: I just realized that this is a Turkish news site actually.

”Shortness of breath, muscle aches and heart palpitations can also worsen if you overwork yourself,” says Dr. Martina Lukas, chief physician in the Department of Internal Medicine II at DKD Helios Hospital in Wiesbaden, Germany. Getting some exercise often helps to reduce “normal” fatigue, but it can cause a severe breakdown in PEM patients, rendering them incapable of any activity for a while, says Scheibenbogen.

(...)

Physical activities such as work or doing household chores aren’t the only things that use up energy though. Even watching television or reading can be overly strenuous – mentally – Scheibenbogen points out. So you’ve got to take cognitive activities into account as well. If you make sure to have some energy left in your sack at the end of the day, you’ve got a good chance of avoiding a breakdown.

(...)

On the other hand, making no demands of yourself isn’t the right thing to do either. “It’s important to stay active,” Scheibenbogen says, but only within the confines of what your energy level permits. And if your pacing strategy is working well, you can cautiously increase your workload – slowly and in small steps.

Exert yourself, but don’t overdo it.​

 

Professionally, if I had been made aware of a highly controversial issue pushing some magical solution to a complex problem, finding that in real-life outcomes, literally not a single mention is made of any part of it, despite being the official paradigm, widely believed to be perfect and infallible, I would be very concerned.

If you take all the main concepts pushed in the BPS ideology, exactly none are found in any context asking for free answers, without first closing the space of possible answers. It's just never there, it's completely irrelevant in real life. This is just one thread, but it's consistent with all others I see. Occasionally you see someone saying exercise, but it's clear from the timeline that it was the outcome, that progress lead to it, rather than the other way around.

Then again I always took my job seriously and was never one for assumptions (while I had a working brain anyway). I was always especially good at debugging code, and this works best through the methodical application of the scientific method and an inquisitive mind that doesn't close off possible solutions, in fact explicitly works through falsifying leads and following the evidence. Not a single life depended on my work, and still I took it more seriously than any of the nonsense going on in the void of failure medicine created for chronic illness.

I just don't know why this is impossible to achieve in healthcare, how common those problems are, how consistently those failed object and protest, and how there is absolutely zero interest in changing any of it, instead rabid obsession with keeping it. Madness. It's absolute madness to fail this miserably over mediocre 19th pseudoscience.

https://twitter.com/user/status/1518940009621032964


Edit: To the surprise of absolutely no one: CBT, 0 mentions. GET, 0 mentions. Statistically, how likely is it for the 2 main treatments for a condition, ones promoted as 100% safe and effective (despite data at the very best saying 1/7 get some benefit), almost universally get 0 mentions to "what helped" questions? Not cured, what actually helped?

 

I'm assuming this seminar was reserved to professionals? It's really not getting better.

https://twitter.com/user/status/1519005915151847424

 

A video on YouTube giving a good background on long COVID. Mentions ME/CFS.

https://www.youtube.com/watch?v=10GpwtQ_2Dc

 

Appears to be the Irish health minister gushing over a... virtual GET program.

I guess he must be completely unaware that exercise programs are already what most long haulers are told to do. And probably unaware of anything having to do with the NICE guidelines I also guess a health minister does not have access to basic information, probably.

https://twitter.com/user/status/1518997820929368065

 

I guess I'm staying in Ireland for another post. Where they discuss.... money! It's all about money.


Internal emails reveal concerns over welfare supports for long Covid
https://www.independent.ie/irish-ne...welfare-supports-for-long-covid-41581811.html

The Department of Social Protection expressed concerns about any move to treat welfare payments for long Covid any differently to other chronic illnesses.

Internal emails detail how welfare officials felt there would be “pressures” to provide enhanced benefit payments for people who continued to suffer with Covid-19 symptoms long after they had been infected.​

I had to laugh at those "concerns", which I'm sure are front-and-center:

However, the department felt it would be unfair to treat long Covid any differently to other chronic illnesses that kept people out of work for extended periods.​

I have no idea what "industry-driven research" could mean here, what industry, what direction?:

A briefing paper on the long-term social welfare impacts of Covid-19 said the country had been through an “info-epidemic” with changed understanding about transmission and its impact. It carried a note of caution on “industry driven research” that could influence evidence “in a certain direction” when it came to long Covid.​

Chronic illnesses they fully intent to continue discriminating, but of course it's the unfairness of it all that is important:

The paper said there were already “differences of opinion” within medicine over certain long-term illnesses like fibromyalgia and chronic fatigue.

“Henceforth just adding the prefix history of Covid-19 may render them undisputed,” said the briefing.​

If they recognize Long Covid, they can't reasonably continue to discriminate against all chronic illnesses, therefore they want to make sure they can discriminate against everyone. Hard to be more upfront about it.

 

I'm unable to find a thread for the study. I think it was discussed before, I just can't find it. This is about the Irish-funded exercise study at St-James Hospital that was promoted by the Irish health minister yesterday. Not long ago there was something about a multi-million grant to study singing with a choir group, or something like that. Ireland is really scrapping the bottom of the barrel here.

Maybe the researchers are amenable to reason, if anyone wants to venture explaining them how they're doing harm.

https://twitter.com/user/status/1519059617443205120

 

NHS Health at Work Network News Update
IN THIS MONTH’S NEWSLETTER...
Spring has sprung! As April draws to a close, I hope you managed to enjoy some welcome sunshine over the Easter weekend. After the last two years, I certainly enjoyed taking time out with family and friends instead of working over the long Bank Holiday weekend.
This month’s bulletin is packed full of useful information! There is some important information from NHS Employers which will support programmes of work relating to the People Promise – so there’s no need to re-invent the wheel. Over the last month, I have continued to engage with NHS England and Improvement on the Growing OH&WB strategy, as well as the transfer of Immunisations and Vaccinations project. In addition, we have been making progress in planning our annual conference which is scheduled for 7 & 8 September – so make sure your Service has signed up to the Network to guarantee a place at this exciting event.

Hilary Winch
Chair, NHS Health at Work Network

FYI
British Society of Rehabilitation Medicine: Vocational Rehabilitation Guidance

The British Society of Rehabilitation Medicine has produced new guidance on return to work - a major issue for many people recovering from COVID infection.

A limited number of hard copies are available free on request on a first come first served basis. Please contact Marlene Worrell, Executive Assistant to the BSRM at admin@bsrm.org.uk.

 

1 in 5 Educators Say They’ve Experienced Long COVID
https://www.edweek.org/leadership/1-in-5-educators-say-theyve-experienced-long-covid/2022/04

Two years into the pandemic, many Americans are eager to leave COVID behind. But that won’t be so easy for as many as 1 in 5 educators who, according to a recent EdWeek survey, have experienced the emerging, mysterious illness known as long COVID.​

I can't process how hardly anyone seems to grasp that even if most recover after a few months, with infections happening on a continuous basis, it will create a non-stop stream of temporary illness. On top of those who don't recover. And likely on top of cumulative harm from every infection, especially if they are so common because multiple variants means far less effective immunity.

It seems that most assume it will stop magically, that at some point the infections will continue but the harm won't. There's the usual quote in the article about how one of the interviewee's doctor say they are optimistic they will recover. This weird cult of positive thinking is almost cancelling decades of scientific progress, straight up overruling it with fortune cookie level pop philosophy.

I saw a tweet today that hints that the real problem seems to be that most experts don't really trust science. It was about masks, how we have a pretty good scientific understand of how fluids, filters and all of that work. We know this. And yet many balk at the idea that this should work, they want RCTs to show it works. Even though there is strong science behind it. Airborne contagion someone is still largely disputed. There is an underlying current of science denial in favor of gut feeling. It's so bizarre.