Long Covid in the media and social media 2022

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rvallee said:
Literally all the treatments officially used for LC are untested, and in the case of CBT and GET, have no basis for any of the claims they make. So all the clinics are pushing unevidenced treatments, including treatments known to harm. Literally all of them. Doesn't bother anyone. In fact they are praised as if they basically solved it.
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Spot on.

The article glibly skips over what is offered by the NHS:

Approved therapies are provided by the NHS through its long Covid clinics, but these are heavily over-subscribed and only see around 5,000 patients a month.
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Where's the investigation into the evidence base and safety of so-called NHS "approved therapies" like rehabilitation, breathing exercises, singing, CBT, mindfulness and other similar idiocy?

Having the NHS stamp of approval on a therapy does not mean that it's any more credible or safe than the other nonsense available from private clinics. Essentially this just boils down to the argument that the NHS should have a monopoly on Long Covid quackery.
 
Thanks AP, interesting. It assumes 26 million of the 87 million confirmed surviving Covid-19 cases have PASC - roughly 30%. It doesn't seem to have any sort of recovery function for PASC numbers, it's just a cumulative figure. It's surely a major over-estimation. The AAPMR surely have a vested interest in making the problem appear very large - so they can be paid to fix it.

The American Academy of Physical Medicine and Rehabilitation (AAPM&R) has undertaken comprehensive efforts to support our call for a national plan to address Post-Acute Sequelae of SARS-CoV-2 infection (PASC or Long COVID) and the millions Americans it is affecting. The PASC Dashboard serves to estimate those affected including state and county level data and trends over time.
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The ugly truth of so-called patient-centered medicine: "Patient perspective could be incorporated". It's all PR, medical institutions don't care what patients think, they don't think we can bring any useful information, but they will call what they do patient-centered medicine anyway. Most governments are more accountable than this. These trade unions, unaccountable, unelected, wield far too much power.

For some reason, inexplicable, the present and future of medical care for children with Long Covid (in the UK, but it will reach farther and we know it) is determined by a single study involving biased ideologues who have worked their entire career to deny medical care to the chronically ill. You rarely see such brazen IDGAF level of shirking responsibilities, even in politics. It only works on highly controversial issues where emotions and ideology dominate.

 
Whatever your time zone, this is happening in a bit more than 1h after I posted this:
Today (July 15*) at 4pm EST! Tune in for a White House & @HHSGov briefing on the status of the National Research Action Plan on #LongCOVID, then stick around for a community debrief hosted by @MarkedByCovid. Registration links for both below!
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Direct link to webinar: https://pitc.zoomgov.com/webinar/register/WN_B7res8ipTXKLPbnkLcAEvQ.

 
Twitter thread on the webinar. Underwhelming doesn't even cover it, this is not a serious effort and it will yield nothing, it's too pathetic of an "effort". Unless something changes radically, I think it's time to say it simply and directly: medicine has already given up trying, and having found that it's essentially chronic illness, has no intention of doing anything more. Medicine is in complete dereliction of their duties. This is as far as they will take it, only gaslighting and failure. The hope that was there to begin with is over and done, the decisions have been made for us, without us, in secret behind closed doors by people who are completely unaccountable for the outcomes they create.

Which cements this failure, one long tradition dating back to the 19th century, as the single worst failure of expertise in human history, by a very wide margin. To come up face-to-face with the smoking gun that puts everything into focus, and literally refuse to bother, is just staggering. They really are content with the idea that "oh, look, this again, obviously can't immunological since it's happening during a pandemic, which is scary and worrying and stressful and anxious fear fear fear worry fear". It's more than a professional failure, it's a moral failure that is padded with nothing but cheap excuses and ignorance.

 
Kalliope said:
A paediatrician specialising in infectious diseases named Paul A. Offit was guest at the latest This Week in Virology.

At 38.12 prof. Racaniello asks him whether or not vaccination against Covid-19 prevents Long Covid.

Dr. Offit answers with a deep sigh and asks them to define Long Covid. He says he thinks there's much to learn about this, immunologically, virologically, psychologically. The symptom that seems to rise to the top is fatigue. If that's true, then he has Long Covid. They all laugh. Then they say that fatigue is serious, but that many people are tired, right?

This was quite disappointing. I thought Long Covid was taken much more serious than this among Covid-19 experts?

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This is discussed in the latest TWIV.

Begins at 8.27

Prof. Racaniello says he understands why people got mad. Says asking about "tiredness" in questionnaires about long Covid is not specific enough, so it was not about minimising fatigue.

Rich Condit says people are rightfully sensitive as fatigue has been dismissed. XMRV-saga discussed. But says they learned a lot about CFS from it.

Racaniello mentions David Tuller writing on Virology Blog and reads an email from a listener summarising the criticism of last episode.

 
I have a number of tweets arrived by email referring to the NIH turning down a grant application from Putrino Labs. Perhaps someone who tweets can post something clearer


@PutrinoLab
·
15 Jul

I just want everyone to know that
@resiapretorius
,
@GeneticHeartDoc
and I had a huddle post-decision and we are resolved to make this study happen by any means necessary: it is too important to let wait. A humble, heartfelt thanks to everyone suggesting crowdfunding:


@PutrinoLab

Watch this space. We will not be slowed down. We will not abandon the #LongCovid, #MECFS and infection-associated chronic disease community. We are here to change and disrupt this space forever. NIH: I’ll see you in hell. Happy weekend everyone else!
 
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Experiencing Long Covid As A Physician And A Patient
by Dr. Zeest Khan, cardiothoracic anaesthetist - writing in the California Society of Anesthesiologists

While being ill with Long Covid has been awful, it has offered a new perspective on my work as a physician. I previously believed empathy is important, but more important was knowing the answer. The past two years, however, no one has had the answer.
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This is a mass disabling event, and recovery rates are as yet unclear. Until the science is elucidated, I encourage my peers to engage patients with complex conditions like Long Covid and ME/CFS with humility, transparency, and kindness. Collaborate with your patients and share what you learn with your peers.
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This is a long article from Australia about the difficulties people with Long Covid are facing in getting financial support.

While governments here have had their heads in the sand when it comes to post-viral illness, it's good to see actuaries publicising the long term costs.

Long COVID cases set to grow as more people fall through the cracks of support
The number of Australians who will be left with a serious disability as a result of long COVID is expected to rise to significant levels in the next few months, according to the Actuaries Institute.

Actuaries are professional statisticians who calculate the risk of something happening, often for the insurance industry.

The institute estimates that if the current rate of daily cases of around 30,000 continue in Australia, up to 100,000 people could be suffering severe long COVID (someone whose daily activities are affected a lot, and considered a serious disability) within the next three months.

Another 300,000 people could have some limitations on their daily activity.

"What we've effectively done is added another form of disability into the community," Jennifer Lang, from the Actuaries Institute COVID-19 working group said.
...
Actuaries model risk for the insurance and superannuation industry, and Ms Lang expects disability-related insurance claims for income protection, workers' compensation and total and permanent disability (TPD), to rise as a result of long COVID.
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[no mention of ME/CFS]
 
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