Long Covid in the media and social media 2022

Haven't watched it myself yet, but seems like ME was also referred to in this lecture from yesterday by professor Akiko Iwasaki on Long Covid hosted by Body Politic.

https://www.youtube.com/watch?v=CF4j-EVPlPU

Here are some tweets about the lecture:

 

The sheer mass of suffering is starting to make a visible difference on social media. Whereas discussions of the same chronic illness issues used to get 1-2 comments and die out within the closed bubble of the chronic illness community, they now get dozens, even hundreds of replies, some who aren't themselves affected but have a loved one.

20 years ago none of this would have happened, the entire issue would have been buried without any resistance, a conspiracy theory from delusional people who clearly focus too much about health issues. Those are the only differences: the sheer mass of it and the ability it has to connect. Everything else is the same, stuck in the late 19th century.

Really says a lot about the obsession BPS ideologues have about isolating us. Divided and conquered no more.

 

https://twitter.com/user/status/1511417375299493905


More info:

White House launches national plan to address long COVID
https://www.reuters.com/world/us/white-house-launches-national-plan-address-long-covid-2022-04-05/

President Joe Biden on Tuesday announced a national action plan to be developed by the U.S. health department to tackle the looming health crisis of long COVID, a complex, multi-symptom condition that leaves many of its sufferers unable to work.
​

This announcement is discussed here:
https://www.s4me.info/threads/usa-t...ing-the-long-term-effects-of-covid-⁠19.25261/

 

Just saw this in the local paper - The Age. The author defines the difference between tiredness and fatigue and talks about LC and CFS. Just the usual guesswork really.
https://www.theage.com.au/national/...s-on-what-to-do-about-it-20220406-p5abdc.html

 

Disgusting.

https://twitter.com/user/status/1511797023821144064

 

Didn't know where to put this; I didn't know about this

https://twitter.com/user/status/1511772869105106944


Edit: I'd like to respond but don't know if I will be able to - has anyone done this? Will see tomorrow!

 

Gaslighting 101:

https://twitter.com/user/status/1511971916520828930


I downloaded the document, just in case. Note the date, no one can claim this was developed for Long Covid. Healthcare systems are keeping a separation with ME, while explicitly using the same guidelines. Complete lack of integrity.

It explicitly instructs to diagnose children with MUS if the physician feels anxious about dealing with such a patient. The sheer mass of psychological projection behind this ideology is incredible.

 

This is just voodoo, apparently written by a junior level psychiatrist - and it sounds like it.

This is really what is meant by person-centred care - in the same sense that a sausage machine provides sausage centred care.

 

Popsugar
Why Long COVID Makes It So Difficult to Exercise

Interview with Linda Geng, MD, PhD, director of the Post-Acute COVID-19 Syndrome Clinic at Stanford who says areas explored for explaining PEM are:
- Blood vessel and nerve fibre damage
- Heart issues
- The SARS-CoV-2 S1 protein
- Mitochondrial damage


quote:

"Listen to your body and consult with your doctor," Dr. Geng advises. It's likely that your specific plan will be tailored to your symptoms and any underlying conditions you may have. Depending on your long COVID symptoms, your doctor might recommend a "strategy of rest and pacing with gradual return to prior level of activity," Dr. Geng explains. In other words, you might be able to slowly build back up to the frequency and intensity of exercise that you're used to. However, if you are actively struggling with post-exertional malaise, exercise might not necessarily be recommended. Again, it all depends on your body and your symptoms.

 

Great to see someone taking PEM seriously, but still there is an unevidenced optimism about full recovery. Already we know that a significant number of people with ME/CFS-like Long Covid will not recover and indeed some will continue to worsen and a significant proportion who first improve subsequently experience relapses. Increasingly it is likely that a majority of these patients will have some level of ongoing disability.

With ME/CFS, decades down the line, we still see this irrationally positivity and have at least here at S4ME discussed how problematic that can be for people in the first few years and longer of their illness/disability; striving for unobtainable normality rather that adapting to the current reality can prevent people living their best possible life. It is so important that these discussions about Long Covid happen now and not in five or ten years time or even 20 years time.

 

An article about Australian journalist Tracy Spicer (first posted about here) and her (so far short) experience with Long Covid:

The article doesn't mention ME/CFS or post-viral illness and contains the usual blather and ignorant nonsense from the RACGP.

 

An article about the lack of awareness and action on Long Covid in Australia:

The journalist who wrote the article seems almost as ignorant as Australian medical professionals given the main focus of the article is on lack of smell and taste. This is in spite of the fact that the patient interviewed mentions her other symptoms are far more debilitating. And never mind the people who end up being completely disabled for life.

Again, there's no mention of ME/CFS and the clueless medical professionals interviewed all suggest they've never seen 'perplexing' symptoms such as severe cognitive problems before.

 

I was not aware that NICE published LC guidelines. I know NICE produced preliminary early stuff a while ago, but to call this a guideline is really stretching the definition of many things. It's actually surprising that they haven't done anything since then, seems to have a wait-and-see approach hoping it just fizzles out.

However...

https://twitter.com/user/status/1512402617560883207

 

This BPS-focused questionnaire is open to everyone with a long-term chronic illness. Its explicit aim is to build support for a BPS approach to LC. You know what to do: answer honestly. It's short, about 5-10 minutes.

Mod note: This post has been copied to start a new thread:
University of York, UK - STIMULATE-ICP - Online questionnaire based study about Integrated Care Pathways for chronic illnesses

 

I've seen this quite often in articles and it seems obtuse. At first I wondered if it was from the same journalistic school that orders injury descriptions. For example you will often see something like "Following the assault, Mr Jones was taken to hospital. He suffered bruising, skin abrasions, fractured ribs, a ruptured spleen, facial fractures, bleeding on the brain and may lose the sight of one eye." I don't know why they do this — is it to maintain reader interest via crescendo?

Loss of smell is a trivial symptom in comparison to inability to stand, walk or think. But journalists often seem fixated on it to the exclusion of the life-destroying symptoms. Admittedly, loss of smell may well be due to significant brain impairment (eg metabolic deficiency in the fronto-orbital region olfactory cortex as per recent PET studies), but as a symptom, it pales in context.