Wired Magazine: The Painful Truth About Long Covid

Lou B Lou said:
'Long Covid Advocacy' on Twitter (6/6/2026 at 2.50)






Long Covid Advocacy:

'This explains A LOT. Levinovitz's new book is called 'Demons by another name: Biology, belief & stories make us sick.'It is clear that brain retaining fits the argument that he is making: that what was deemed as demons are still making us sick & the mind can miracle cure 1/8'


'Demons (now termed belief, fear, psych) are the excluded part & millions can't heal themselves from pain, fatigue & chronic conditions because of this. If we let magic, charisma & belief in we will be healed. /2'


'This is where brain retraining comes in. It conveniently fits the narrative Levinovitz is building for his book.Brain retraining IS the belief that heals, the new magic spell.The problem is he's forcing a whole community into this premise & people are getting hurt. /3'


'In the Wired article it was clear Levinovitz wasn't interested in the science. This is because he states we are emerging from a "science fever dream". That science CAN'T answer these illnesses - only the power of language, culture & belief. Enter brain retraining. /4'


'BUT he states this is taboo to believe this. It explains why Alan is so recalcitrant & the religious narrative framing. He has A LOT invested in this world view & Long Covid & brain training is a way to make his point. He's not interested in us as people. /5'


'The problem is we aren't just an academic fantasy. The community's aim is to advocate for a deeper scientific view, to find the pathology & treatment that reliably works for the majority. This is counter to Alan who wants magic, blessings, curses & belief. /6'


'Our concern is were people interviewed not just for the article, but for the book without understanding the context?As this would have changed everything. It gave him access to use a community without full understanding. /7'


'Full video. "You can be blessed & you can be cursed"
No one is cursed Alan - there is a pandemic, people caught a virus & there is no cure. We need a reliable treatment that works for the majority. /8'


' ... This type of world view can be very seductive to academics interested in religion, anthropology. The problem is he's moving into popular culture that doesn't have the academic safeguards. It's allowing him free reign. The reality of his mindset is unfortunately stronger than the reality of Long Covid.'





Youtube - 'Can Words Really Heal You? Dr. Alan Levinovitz on the Curious by Nature Podcast'




'Is finding the name of your affliction like finding the name of #rumpelstiltskin? Dr. Alan Levinovitz, Professor of Religion and Philosophy at #jamesmadisonuniversity #calls it The Rumpelstiltskin Effect, the idea that naming your illness can take away some of its power. We explored how words and stories can shape not just how we understand disease, but how we actually experience it.'


Listen to Curious by NatureSpotify: https://tinyurl.com/5es7tnv7

https://www.youtube.com/redirect?event=video_description&redir_token=QUFFLUhqbVU4cVpDb3l5bG9ad0ZsNzFNWlA5a0haRVkxQXxBQ3Jtc0trazR1V2g1aTRQWDltLUVrWWtiT0hNYk9oU3JlTHJZLWpyTWZEY2lsNEwxaS1lUmZvUnI3R1dmQmNaQTN0bnlNNTNCcksxMTVuNzdmcElWcXNmbnhFN3hULTB6VlppNzlVSlRidjhHT0ZrV2xQbm03bw&q=https://tinyurl.com/5es7tnv7&v=ZmQOn2uhyXo

Apple Podcast: https://tinyurl.com/f872m4fc


.
Click to expand...

I was genuinely curious about this, so i listened to the podcast

It's exploring the limits of scientific knowledge and saying that having a name for something means that you can find community and remove blame and shame from the patient.

It's an extremely nuanced argument about are we giving new language to old experiences but not in a "this is Freudian hysteria" way (which is directly addressed in the podcast) but in a "our experiences and the world impact our bodies in ways we can't always explain" way

Just because we don't know what something is medically doesn't mean that it is spirits or psychological or all in your head or your fault (refreshing)

It's meaning making using different language than the medical model and noticing that these stories have always been there, but now they have evolved to have medical language and that actually having the right language can be helpful.

His previous book was apparently about the use of the word "natural" not always meaning "good for you"
 
Binkie4 said:
A post by @Adam pwme on brain training from the Broken Battery Updates thread ( #47)

Adam
@abrokenbattery.bsky.social·Follow
Highlights from recent German TV that looked at brain retraining for #MECFS.A doctor with #MECFS says the programme made her feel she just had to keep trying harder. She eventually suffered a severe crash.She is “angry” and says that these programmes are endangering people.


There is a 2-3 minute clip of the patient's words in German with subtitles which Adam has summarised in the introduction above. A clear description by a patient ( who happens to be a doctor) of deterioration following brain training.

eta: I lost the clip ( video and subtitles).on transferring it. Can be found on Adam's thread. #47
Click to expand...

Thanks for posting.

Here is the text

Even for me as a doctor, it’s often not clear what will be useful, what will help me, what might cause side effects that worsen my condition. That has happened to me before. There’s also the financial side. After the birth of her third child she is particularly desperate, wants to provide for her baby and comes across a so-called “brain retraining” programme.

A programme built on the premise that you can eliminate the disease by reversing your thoughts. “One by one, they’re reversing their symptoms, regaining their health and getting their lives back.”

She pays €320 for a yearly subscription. It now costs almost €500. Meditation subscriptions that do not focus on ME/CFS are significantly cheaper.

At first, it seemed the best alternative so I paid a lot of money for it. I felt better with it at first because it promises so much hope and all this meditation definitely does you good. This healing it promises hasn’t happened, as you can see. The programme gives you the feeling that you just have to try hard enough and then it will work. It definitely didn’t do me good once I got the feeling that I should push harder and harder to make more progress. I also then pushed myself too hard and had quite a severe crash.

To make a business out of people and knowingly giving people a promise of healing although they know that they can’t heal, and that they’re actually endangering people, that makes me angry and sad.
 
Binkie4 said:
A post by @Adam pwme on brain training from the Broken Battery Updates thread ( #47)

Adam
@abrokenbattery.bsky.social·Follow
Highlights from recent German TV that looked at brain retraining for #MECFS.A doctor with #MECFS says the programme made her feel she just had to keep trying harder. She eventually suffered a severe crash.She is “angry” and says that these programmes are endangering people.


There is a 2-3 minute clip of the patient's words in German with subtitles which Adam has summarised in the introduction above. A clear description by a patient ( who happens to be a doctor) of deterioration following brain training.

eta: I lost the clip ( video and subtitles).on transferring it. Can be found on Adam's thread. #47
Click to expand...
Here is the video

 
JellyBabyKid said:
It's exploring the limits of scientific knowledge and saying that having a name for something means that you can find community and remove blame and shame from the patient.
Click to expand...

I had a listen too. It is describing something that a first year clinical medical student comes to understand within a few weeks. You are involved in interactions with maybe 50-100 patients a week and in each case you see how names influence how they feel about their situation. But there is no one effect. The effects are hugely complex and context dependent in ways that all human emotional and cognitive states are and ordinary people understand intuitively (or at least some do). It is as if the speaker has deduced these effects from reading literature and in doing so not quite got as far as the new student who has seen it in action every day.

In other words everyone in the field knew about all this. We also knew that like most other things psychologists try to pigeon hole and theorise about, since we have no understanding of relevant brain mechanisms it is very unlikely that formal research will provide better predictions or policies than our intuitive responses to others.

And one of the things I again noted with our recent medical encounters is that professionals who make use of theoretical analyses of these things and recommended behavioural protocols for being 'patient-centred' and all that sort of stuff are hopeless at providing relief in comparison to those who just talk naturally the way you would talk to friends or family, trying to mix honesty, empathy and tact as learnt from real life rather than literature.
 
JellyBabyKid said:
I was genuinely curious about this, so i listened to the podcast

It's exploring the limits of scientific knowledge and saying that having a name for something means that you can find community and remove blame and shame from the patient.

It's an extremely nuanced argument about are we giving new language to old experiences but not in a "this is Freudian hysteria" way (which is directly addressed in the podcast) but in a "our experiences and the world impact our bodies in ways we can't always explain" way

Just because we don't know what something is medically doesn't mean that it is spirits or psychological or all in your head or your fault (refreshing)

It's meaning making using different language than the medical model and noticing that these stories have always been there, but now they have evolved to have medical language and that actually having the right language can be helpful.

His previous book was apparently about the use of the word "natural" not always meaning "good for you"
Click to expand...


Nah. He finds the behaviours of the human lab rats utterly Fascinating.


Alan Levinovitz (the Youtube interview) repeats that when people are given a name (a diagnosis) for their condition - "They feel better" Repeat repeat.

"We also see this in pain, so you can diagnose someone with idiopathic pain syndrome, for example, or complex regional pain syndrome - and their pain will get better!"

"So I'd like to see more attention paid to physiological conditions that improve simply through the existence of an official diagnosis"



He's stuck on the belief (Wessely was all over this) that:

Levinovitz: ..... "If people believe that there is a biological cause, then one important thing that happens is they no longer feel shame or guilt. So they don't feel like it is their own fault. Rather it is their brain or their genetics, or their chemicals. So we believe that in the short term at least, the alleviation of guilt and blame, both from the self and from your community, might play an important role in this.
In the long term however, if you believe there is a biological cause to your condition you may also come to believe that you can't change it..... "



"if you believe there is a biological cause to your condition you may also come to believe that you can't change it..... "

So in Alan Levinotiz's thinking, if ME and LC patients *believe* their illnesses are biological then they may be very resistant to buying very expensive NLP/Coaching/Mindfulness courses that may involve shouting "STOP" at their symptoms ..... For example.

.
 
Last edited:
I didn’t listen to the podcast but the summaries here rang a bell with this piece posted today (which I thought was good, it’s the opposite of AL’s belief views, but similar subject)

TLDR it’s about how GPs can better speak to patients when they don’t know what’s wrong, and why it’s helpful to patients to have a language/narrative, because society has the standard “see Dr/diagnose/treat/recover” narrative, and that isn’t what will happen.

Thread 'Navigating invisible illness: Medically unexplained symptoms and the power of narratives 2026 Stone et al'
https://s4me.info/threads/navigatin...e-power-of-narratives-2026-stone-et-al.50552/

We know naratives and language and beliefs exist and can have influence, that isn't in dispute.

What is in dispute is whether changing your thoughts and naratives can cure you of illness. Whether they cause illness.

This is just the new “bait and switch” that the people who really care, who have it all worked out, need patients to stop insisting we look at the science and just - use the tools we already have, you guys!

With bonus “ and you are harming other patients with your “I want scientific research, brain training harms people” also known as - victim blaming. Of course the harm comes from patients, of course, of course.

It’s no different than the Drs diagnosing “shit life syndrome” or “got a label and made their disability their whole personality” or”the b@stards just don’t want to get better” just a new victim blaming iteration, it’s all very well for the healthy, projecting this on to the person with the illness-without-biomarker because it’s the same old “unfalsifiable truth”. With added DARVO.

Edit- was missing words and points, got a migraine coming.
 
Last edited:
Lou B Lou said:
Looks like Alan Levinovitz could be a second Elaine Showalter..... Maybe that's his objective.

Showalter was/is the Queen of 'Stories/Narratives/The Media make us sick' in her disgraceful 1997 book
'Hystories - Hysterical Epidemics and Modern Culture'.

Showalter bracketed Gulf War Illness and ME/CFS with Alien Abduction. The Press went berserk.
Media Pundits yelled "Yes! She is Sooo Right, and Sooo Brave and Compassionate!".

"Elaine Showalter says ..." .... became London Literati Dinner Party Gossip
.
.
Click to expand...
I think she got a tenured Professorship at Princeton for this too. I came across this a couple weeks ago, researching the narrativization of unexplained illness in medical and “ fine” literature for my comparative literature senior thesis I may never write.
 
You must log in or register to reply here.
Back
Top Bottom