Long Covid in the media and social media 2022

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BBC Radio 4 program
"Working with Long Covid
Money Box
Seb Choudhury chats to a panel of experts about working, and not working, with Long Covid."
Broadcast yesterday and available online.

One contributor set out how she left her NHS job as an occupation therapist (after getting Long Covid) and now earns a 6 figure sum working from home ---- well one of them as she's bought a 2nd home in France ----

Not sure they should have included that unrepresentative case but I suppose it illustrates that some people can review/revise their paid employment.
 
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"Vagus nerve exercises" and breathing training are commonly recommended on LC forums. Well, in the sense of "I'm doing it and think it's helping" anyway. Since the universal factor in remission and recovery is time, and people generally do those exercises over a period of weeks and months, it's probably that time is the factor here. But it's easy to attribute, and whenever a treatment is active, people want it to work even more since they made an effort at it and it better be worth it.

I don't know whether vagus nerve exercises really makes any sense, I don't think nerves work like that. But in a vacuum of knowledge, ideas like this fill the void. The vagus nerve is very likely involved, but whether those "exercises" do anything good, or anything at all, is just the latest in a line of things that people tried and for a while thought was helping.
 
Science-Based Medicine: Methodolatry and COVID

I love RCTs. All doctors do. In a fantasy world with unlimited time and money, but without ethics, an RCT would yield the optimal answer for many medical questions. They are the gold-standard for their ability to randomize patients and minimize bias. They are truly a remarkable achievement with a fascinating history. I firmly believe that every intervention that can be studied via an RCT should be.

However, in the real world, significant ethical and practical limitations prevent us from doing this. Having an idea for an RCT is infinitely easier than actually doing an RCT.
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Fortunately, there were multiple well-done RCTs this pandemic, not all of them run by pharmaceutical companies. The RECOVERY trial showed a dirt-cheap steroid saved lives in severely ill patients.
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Everyone who worked on or volunteered for an RCT this pandemic deserves our gratitude. It was really hard work.
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Proceeds to discuss the disingenuous arguments around RCTs from anti-vaxxers, covid-minimisers, urgency-of-normal etc, with the context of the inherent limitations of RCTs.
 
Yes, let's take all detours possible. What's the rush? :banghead:

Medpage Today Can Alternative Approaches Help in Long COVID?

quotes:

There is a long list of contested diseases such as chronic fatigue, chronic Epstein-Barr infection, fibromyalgia, multiple chemical sensitivity, chronic Lyme disease, and mold illness associated with fatigue and brain fog without any generally recognized abnormal physiologic tests or signs. Mainstream medicine had difficulty comprehending, diagnosing, and treating these patients, often offering a suggestion to see a psychiatrist, with the thought that these conditions may be psychogenic rather than physiologic. However, neither antidepressants nor anti-anxiety medications consistently help these conditions. In 2015, the National Institute of Medicine of the National Academies of Sciences, Engineering, and Medicine bit the bullet and did an extensive evaluation of chronic fatigue resulting in the determination that these patients have a "real disease," now known as myalgic encephalomyelitis. Yet, pathophysiology and treatment remained uncertain.

...

It remains to be seen how effective complementary approaches will be, but they can offer important support to the long COVID patient population. At present, the culture, style, and tools of contemporary allopathic medicine alone may be insufficient to help the many patients with general fatigue and brain fog, except with supportive advice. Until the pathophysiology of long COVID is unraveled, the methods of complementary and alternative medicine are worth exploring further.
 
Pretty odd to name us in the same context as the AIDS movement, when the history of ME basically shows us what the outcome would have been if HIV denial had dominated. Had it happened a few decades earlier, it could have happened this way. If even massive research efforts couldn't find the virus simply because the technology wasn't ready, it could have ended up the same as us, locked into escalation of commitment and obsessing over psychosocial causes instead.

So the main difference is one saw a major effort, the other didn't. I don't know what lead him to lump us together when the entire difference is how institutions like the NIH were pressured into doing the job they initially refused to do. Does he think we're on the other side of the gate? Because we aren't at all.

 
Midnattsol said:
My mother told me of some local politicians that had been struggling post-covid, and have become unable to work. I wonder hoe this looks in other parts of Norway now. Too bad there are no statistics.
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Just saw these statistics today from UK in the latest indie_SAGE briefing. The slide is from a presentation by Dr. Deepti Gurdasani (8.31 minutes in video here)
I'm curious too on what the numbers are in Norway.
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Kalliope said:
Just saw these statistics today from UK in the latest indie_SAGE briefing. The slide is from a presentation by Dr. Deepti Gurdasani (8.31 minutes in video here)
I'm curious too on what the numbers are in Norway.
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Thanks! In this case I think it would have taken time for the persons to admit they were ill. My mother, the old nurse, had some comments about how we have forgotten about convalesence and the stupidity of going back to work too soon.
 
Anyone not yet blocked by Sharpe, Wessely and the rest want to clue them in on what actually matters in ME? Tag them in on this? Maybe Greenhalgh and a few more? Putrino has been at this for 2 years and understands this better than all of them combined. And didn't even start that strong, had some early assumptions that he managed to falsify. Because it is possible to learn from experience, it just takes a scientific mind free of excessive bias. Oh, and actually listening to patients for useful information. That helps a whole lot when technology isn't useful.

I am firmly in the opinion that informing people of things they don't understand is not harassment. But maybe I'm just weird like that.



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USA: Mount Sinai PACS clinic and Dr Putrino
 
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InitialConditions said:
I don't think this article has been posted, but we have discussed earlier in this thread the EHRC tweet announcing this 'policy'. It is quite shocking, and must be fought.

I have submitted a FOI request to EHRC request to ascertain whether this is now their policy and how they came to this decision.
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EHRC refuses to apologise over ‘shameful’ long Covid blunder

"The equality watchdog has again refused to apologise for failing disabled people, after suggesting publicly that people experiencing symptoms of long Covid should not be entitled to protection from the Equality Act.

The Equality and Human Rights Commission (EHRC) sparked outrage on Saturday when it stated on the social media platform Twitter that it “does not recommend that ‘long covid’ be treated as a disability”.

Although it said in a follow-up tweet that employers “should continue to follow existing reasonable adjustment guidance based on individual circumstances”, disabled campaigners said its statement suggested that those with long Covid should not be protected under the Equality Act."

https://www.disabilitynewsservice.com/ehrc-refuses-to-apologise-over-shameful-long-covid-blunder/
 
https://news.sky.com/story/long-cov...er-seeking-help-doubles-says-charity-12612377

Long COVID sufferers 'considering buying own oxygen' as number seeking help doubles, says charity

The NHS says it's spent £220m opening dozens of long COVID centres around the country, but some sufferers report waiting many months to be seen and a charity wants the government to boost clinic staffing and do more research into treatments.

Some sufferers have asked for advice on buying their own oxygen to help breathlessness, according to the charity - a risk if not issued on prescription and properly monitored.

Others are said to be asking about accessing private care because they're struggling to get NHS help.

Thirty percent of people at long COVID clinics in England waited more than 15 weeks to be seen as of March/April, according to NHS data.
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The NHS says it's spent £220m opening dozens of long COVID centres
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Oh, wow. Talk about not getting your money's worth. How did they manage to waste this much on absolutely nothing? Basically a few mobile apps, pamphlets and literally clinics without doctors.

Healthcare seriously needs auditing. There is massive misuse of funds happening. Spending money on useless misguided services is not at all the same as fulfilling obligations to provision services. If anything, this took the place of actual serious efforts.
 
Number of people seeking help for Long Covid doubles, charity says

"A charity has seen a doubling in the number of people seeking help for Long Covid. And it warned that NHS services are failing to meet demand.

Long Covid
Asthma and Lung UK said around half a million people have visited its Long Covid advice web pages or called its helpline for support in the last six months. The number of people viewing the web pages nearly doubled from September to March, as cases of Omicron rose across the UK, it said."

https://www.thecanary.co/uk/news/2022/05/15/number-seeking-help-for-long-covid-doubles-charity-says/
 
Transcript of a speech given by someone from the Bank of England a week or two ago included this section on the increase of people in the UK not looking for a job due to long-term sickness (my bolding).

The route back to 2% inflation − speech by Michael Saunders

"The workforce has shrunk by 440,000 people (1.3%) since Q4-19, and is 2.5% below the January 2020 forecast (see figure 5). The scale and persistence of this drop in labour supply has been a surprise to many forecasters, including us. The interplay between Brexit and the pandemic has reduced net inward migration (and hence population growth), while participation has fallen markedly (especially among people aged 50-64 years). Since Q4-19, the number of people aged 16-64 years that are outside the workforce and do not want a job has risen by 525,000 (1.3% of the 16-64 age population). This largely reflects increases in long-term sickness (roughly 320,000 people) and retirement (90,000), with smaller contributions from lower participation among students (65-70,000) and short-term sickness (30-35,000 people). The share of the 16-64 population who are outside the workforce and do not want a job because of long-term sickness is a record high, with an especially sharp rise among women (see figure 6). I suspect much of this rise in inactivity due to long-term sickness reflects side effects of the pandemic, for example Long Covidfootnote[3] and the rise in NHS waiting lists."

https://www.bankofengland.co.uk/spe...ers-speech-at-the-resolution-foundation-event

Bank of England officials also warned MPs about this reduction in the workforce yesterday.
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JAMA - The Costs of Long COVID by David M. Cutler, PhD

quote:

The medical costs for treating long COVID have not been estimated, but costs have been estimated for similar conditions. If treatment of long COVID is similar to treatment of myalgic encephalomyelitis (chronic fatigue syndrome), these estimated costs could be about $9000 per person annually.

(He makes a reference to:
Jason LA, Mirin AA. Updating the National Academy of Medicine ME/CFS prevalence and economic impact figures to account for population growth and inflation. Fatigue. 2021;9(1):9-13.)
 
Omitting long Covid from pandemic messaging is harmful for public health

"Public health messaging about Covid-19 has focused almost exclusively on hospitalizations and deaths. The omission of long Covid, which may affect between 8 million and 23 million Americans, deprives the public of the knowledge necessary to understand the risks of various activities, make informed decisions about risk-taking, and understand what is happening to them if they feel sick for an extended period."

https://www.statnews.com/2022/05/17...demic-messaging-is-harmful-for-public-health/
 
Andy said:
Omitting long Covid from pandemic messaging is harmful for public health

"Public health messaging about Covid-19 has focused almost exclusively on hospitalizations and deaths. The omission of long Covid, which may affect between 8 million and 23 million Americans, deprives the public of the knowledge necessary to understand the risks of various activities, make informed decisions about risk-taking, and understand what is happening to them if they feel sick for an extended period."

https://www.statnews.com/2022/05/17...demic-messaging-is-harmful-for-public-health/
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If Long Covid was talked about realistically and honestly by doctors and the government it would send the BPS fraternity into a frenzy, since they believe mentioning an illness they have decided is psychosomatic makes people believe they have it.
 
Just as an addition to my post #364, it has occurred to me that doctors and the government are reaping what they have sowed over the last 30 or 40 years. They decided that not treating people who are sick would save money. In the UK they've spent billions on IAPT and BPS, but it doesn't actually cure anyone. They have avoided researching anything that might reduce long-term sickness because they don't want to believe in the long-term sickness. And now we're coping with a pandemic with long-term after effects. There are still no easily available treatments to reduce the symptoms, severity, and length of Covid (which might reduce the numbers with Long Covid). Obviously vaccines were assumed to be more profitable.

But now the chickens are coming home to roost, and countries like the UK and the US are suffering from a shortage of healthy workers that will last decades and generations. How many children with Long Covid will never work, never pay tax, and never have children?
 
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