Long Covid in the media and social media 2022

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There's been a slowly growing trickle of physicians saying they are getting swamped with LC referrals. Alongside many others who aren't seeing any, although in some cases they are seeing "lots" of "mental health issues" that are "probably" from lockdown. So they're seeing it, just not noticing it. I wonder how much of it is purely stubborn, as in they can't really deny they are seeing it, but prefer to ignore it anyway.

And recently more of this from random people. The impacts of brain fog are still largely trivialized and misrepresented, a recent article from some American association of psychiatrists suggests this isn't about to change any time soon, they have no idea what they are dealing with here. But people are experiencing it and often have no idea it could be Covid because not a single major public health or medical institution is bothered by this, apparently. Not enough to ever speak of it anyway. At least for now.

 
Andy said:
Twitter thread from Trisha Greenhalgh

"THREAD on LONG COVID for non-specialists (GPs, patients). Covers what it is, who gets it, what causes it, what to do, what the outlook is. Drawing on in-preparation paper".

No mention of ME by name that I could see, although there is "Many viral illnesses (including other coronaviruses SARS and MERS) produce prolonged illness (with fatigue a dominant symptom). But we don’t know why this happens in some people while others recover quickly.".

Muted acknowledgement that "Symptoms may fluctuate and flare up in response to triggers (physical or emotional)".



Link for those people blocked by her, https://threadreaderapp.com/thread/1533803118705664003.html
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This is very interesting in that she is directly contradicting the BPS explanation of Long COVID in her thread, not something she's ever done with M.E. I wonder if there'll be any private whispers in her ear...
 
Andy said:
Twitter thread from Trisha Greenhalgh

"THREAD on LONG COVID for non-specialists (GPs, patients). Covers what it is, who gets it, what causes it, what to do, what the outlook is. Drawing on in-preparation paper".
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The Swedish Covid Association has quote tweeted the thread, saying "Here are the answers to a lot you want to know about postcovid. @trishgreenhalgh is probably the doctor who has contributed most to the advancement of knowledge in Europe. Follow her."

o_O
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Long Covid patients face lottery over treatment

"Patients with long Covid are facing a postcode lottery across the UK when it comes to getting care, nurses say.

The Royal College of Nursing (RCN) said treatment varied hugely with some services treating it as a physical condition, but others as psychological.

The union also highlighted long waits in parts of England, which has a network of specialist clinics."

https://www.bbc.co.uk/news/health-61711913
 
Andy said:
Long Covid patients face lottery over treatment

"Patients with long Covid are facing a postcode lottery across the UK when it comes to getting care, nurses say.

The Royal College of Nursing (RCN) said treatment varied hugely with some services treating it as a physical condition, but others as psychological.

The union also highlighted long waits in parts of England, which has a network of specialist clinics."

https://www.bbc.co.uk/news/health-61711913
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Long COVID: postcode lottery of care will exacerbate health inequalities

"The UK government must invest in nurse-led services and research to support the growing number of long COVID sufferers struggling to access specialist care."

https://www.rcn.org.uk/news-and-events/news/uk-rcn-congress-2022-long-covid-postcode-lottery-070622
 
I wonder what the RCN position on ME and MUS has been... They seem to be the worst affected in the medical profession.

There's something amazing about seeing simultaneously some physicians reporting they are starting to get swamped with LC, while many others are reporting not seeing any at all and arguing it means it obviously does not exist. But I have seen countless quotes over the last few years about how since it's not overwhelming healthcare services, LC is nothing to worry about.

Which says everything about how medicine is focused on managing their resources, what happens to patients is secondary, can even be ignored entirely as long as it doesn't affect people in their clinics. So much for patient-centered medicine, when physicians explicitly say they're not interested as long as it doesn't affect their resources. What a weird system.

‘Long COVID’ is becoming a significant health and economic issue, but so far, there are few treatment options. GPs say they're being inundated with patients still struggling with the virus, months after testing positive.
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Still reading the Reddit long haulers forum every day. I find that the most informative forum posts are those asking simple, objective questions with simple answers. Especially in the format of "what happened", which is especially useful here as contrary to most of us, it's fresh, it happened not that long ago.

At least a few days of feeling better appears to be the norm. Many have reported being ill the whole time, but most seem to report they initially thought they had recovered and resumed normal activities for several days, which completely blows away all the entire biopsychosocial ideology, but that would only matter if facts did on this issue, we're not there yet.

Reddit thread: Was there a gap between your initial recovery and the onset of long covid, during which you had niether covid nor long covid? : covidlonghaulers
 
rvallee said:
Reddit thread: Was there a gap between your initial recovery and the onset of long covid, during which you had niether covid nor long covid? : covidlonghaulers
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Interesting thread.. Thanks for sharing. That’s what I was referencing here about 1 to 4 months between acute infection and chronic illness onset.

Braganca said:
I think that the problem is that for many ME patients, if they became ill 1 to 3 months after an acute infection, it was not considered as being post-infectious onset or documented as such. Whereas with long Covid, it is acknowledged that it can occur 1 to 3 months after infection.

I became ill three months following an infection, which itself was 3 months after a bad flu. I had some symptoms starting in the second month which corresponded with what long Covid patients report (chest pressure and ache, tiredness) and then developed into full blown ME. It helped me realize I was a post infectious patient to see the reporting of onset pattern for long Covid be so similar.
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The People's CDC is a community project as a response to the CDC's mishandling of the pandemic, and Long Covid. Bit like Independent SAGE, I'd say.
The People’s CDC is a collective of public health practitioners, scientists, healthcare workers, educators, advocates and people from all walks of life working to reduce the harmful impacts of COVID-19.
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A Call for More Responsibility in Communicating About Long COVID in Kids: Narrative Drives Behavior
https://peoplescdc.org/2022/06/05/a...long-covid-in-kids-narrative-drives-behavior/

Concern: Dissemination of flawed studies about long COVID in kids promotes misleading information about the risks of the disease. The downstream effect of misinformation includes:

  • underdiagnosis of long COVID in kids.
  • lack of access to treatments.
  • obstacles to accommodations in schools.
  • limited COVID prevention measures targeting children.
...
First, this study is based on a false premise of a valid negative control group. Secondly, the conclusion that a significant portion of long COVID symptoms or syndromes are caused by pandemic induced stress lends itself to the psychologization of a mass-disabling event, rather than attempting to explore the validity of a disabling syndrome.

This is not new in post-infectious studies. This is an ongoing trend that has caused incredible harm to people with post-infectious syndromes. Patients with Lupus, AIDS, MS, ME/CFS, Lyme and stomach ulcers are the most common to fall victim to this kind of dismissal. ​
 
rvallee said:
There's something amazing about seeing simultaneously some physicians reporting they are starting to get swamped with LC, while many others are reporting not seeing any at all and arguing it means it obviously does not exist.
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I'm sure those others are seeing it. They're just misdiagnosing it as 'anxiety'.


(Edit: Which reminds me of anecdotes from a number of US college professors who were complaining that many of their students simply aren't turning up to class any more. Of course, the majority feeling was that the students were 'unmotivated' or suffering from depression. Long covid wasn't on their radar either.)
 
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Dolphin said:
High levels of depression, alcohol use in people with Long Covid - study
https://www.rte.ie/news/coronavirus/2022/0607/1303381-long-covid/

Three quarters of long Covid patients consuming problematic levels of alcohol
https://www.thejournal.ie/long-covid-alcohol-ptsd-anxiety-depression-5783805-Jun2022/

Thread on this paper:
https://www.s4me.info/threads/menta...nic-a-cohort-study-2022-broughan-et-al.28008/
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This is interesting given people with ME frequently (but not universally) find they are unable to tolerate alcohol.

If, as is likely, a significant aspect of Long Covid is Covid-19 triggered ME, then we would expect significant numbers of those with Long Covid to develop alcohol intolerance, meaning self medication with alcohol is likely to be doubly unhelpful.

This highlights how we still lack good basic descriptive data on ME and Long Covid. Many of us with ME found it took us several years to recognise the involvement of food intolerances in our condition, made harder by the fact that food intolerances may change over time. So it make take time for any increased incidence of food intolerances to become apparent in Long Covid.
 
Dolphin said:
High levels of depression, alcohol use in people with Long Covid - study
https://www.rte.ie/news/coronavirus/2022/0607/1303381-long-covid/

Three quarters of long Covid patients consuming problematic levels of alcohol
https://www.thejournal.ie/long-covid-alcohol-ptsd-anxiety-depression-5783805-Jun2022/

Thread on this paper:
https://www.s4me.info/threads/menta...nic-a-cohort-study-2022-broughan-et-al.28008/
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One of the most universal patterns I see in pwLC is that alcohol is a massive trigger. I'd say about 99:1 discussion is some form of how a few sips of alcohol sent them on a massive relapse, how important it is to avoid it because of how reliable it is at making symptoms worse.

So I call total BS on any study that finds high levels here. This may be the most universal patterns out there, there is no chance they asked the right questions to the right people and got this answer. This is what pseudoscience is all about: asking the wrong questions and being unable to process it.
 
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