Suzy Weiss Manifesto on “Spoonie” Culture

C

Charles B.

Senior Member (Voting Rights)
https://www.commonsense.news/p/hurts-so-good

This is merely an intellectually and morally bankrupt regurgitation of long-standing canards against us. However, predictably, it’s being heralded by the usual suspects across the Internet.

My question is whether a piece like this actually converts anyone who would have otherwise empathized with our situation? What is the actual impact of an individual piece like this? Does it inform medical opinion, forestall research, or just allow trolls another opportunity to reassert their prejudices? Interested in community feedback. Whatever the ultimate consensus, these continued onslaughts lead to a death by a thousand cuts
 
Up until last year the official guidance around the world in regards to ME/CFS and related fatigue diseases was exercise and CBT due to the wrong belief that the patient couldn't exercise and their condition was thus deconditioning. That is about 60+ years of public communication from media and doctors backing it telling them this whole group of people are lying malingerers scrounging from the state. The changes in guidance and Long Covid have meant there has been a very recent shift in communication from some media, but not most and the vast majority of doctors have not changed their views on these things being fake illness. In research (we are all shoulder deep in) its pretty clear there are a bunch of dysfunctions but other than well informed patients and researchers no one is paying much attention to these results, not until there is a breakthrough on diagnostics or treatment.

In that environment its very hard for any person to trust the words of an ill person over and above everyone else. I can't blame them for their ignorance of the situation, I didn't know until I got ill what this was and how many people were suffering or how prejudiced medicine was. This only begins to turn around when that messaging has changed and doctors accept the condition and real things start to happen such that even the bad right wing rags decide to inform their readership. Its not the individuals fault, you are asking them to believe in a conspiracy to believe you when you say you are ill with this "Zebra" disease. The language is the same language doctors use to berate patients, that is and remains the cause of this movement. They shouldn't really be writing about things they have no knowledge, but that is the internet we live in with everyone's ignorance on display.
 
On-line culture and social media can draw attention to the people who most want attention, and that means that often a lot of attention can go to the more ridiculous people in any community that doesn't have systems for self-policing. That's not a great thing, and I can see problems with that around health and disability issues.

That article itself is an example of something that seems written to imply more than it says. It again highlights how anecdote based journalism can be used to fit any narrative.

There are ridiculous aspects to all large groups of people, and it's worth being aware of and critical about the problems of any group one might be a part of, but I don't get the impression that the author of this piece has much understanding of the problems here.
 
Read the whole article. Damaging to my mental health. Now I can't stop wondering whether people like this actually exist, and whether I'm one of them. I'm 25, I'm non-binary, I'm autistic, I'm a furry. I keep thinking, like:
  • I spend a lot of time on the Internet reading about chronic illness. But the content I look at is entirely different. I read science and news as much as I can and don't get anything out of people describing their illness in detail. When I watch videos about ME, it's usually research updates.
  • I've never enjoyed being ill, not for a second. I just want to be able to think clearly and exercise again.
  • I'm not a hypochondriac. Multiple times in my life, I've stubbornly refused healthcare for serious issues. I've literally lied to doctors, telling them I don't have health problems I do.
  • I'm desperate to convince doctors I'm sick, but it's because if I lost my disability benefits, I'd literally die.
But, I don't know, maybe I'm just mentally ill. Ever since I learned about ME, part of me has consistently believed I'm just imagining my symptoms. Like if I just ignored my symptoms and pushed myself hard enough, I'd be able to wade through the shoulder-deep mud of cognitive impairment and extreme fatigue, and get something worthwhile done. The other part of me, probably 80% of me, knows that if I attempted this, I'd end up spending the rest of my life in a dark bedroom.

My main point is that articles like this, and the BPS model in general, make it impossible for me to believe I'm actually sick.
 
Dear @RedFox I'm really sorry to hear the article has had such a horrible impact on you. From your description you are nothing like what was described in the article. Maybe there are a few people influenced by social media influencers into pretending they are sick for a while, but that article invents complete nonsense when it suggests everyone with energy limiting diseases like ME is like that.
 
I personally react negatively to the word ‘spoonie’, it feels to me demeaning and inappropriately cutesy, however I understand lots of people with ME find it meaningful and feel it helpful as a way of describing our energy limited condition, so I though I don’t use it myself I try to accept others use of it.

I wonder if people already prejudiced against people with ME use it is cutesyness as a further evidence against us.
 
Spoonie illnesses include, but are not limited to, serious diseases like multiple sclerosis and Crohn's disease, but also harder-to-diagnose ones that manifest differently in different people: polycystic ovary syndrome (PCOS), Rheumatoid arthritis (RA), endometriosis, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome, dysautonomia, Guillain-Barré Syndrome, gastroparesis, and fibromyalgia.
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Her current diagnoses include POTS (lightheadedness), gastroparesis (stomach pain), endometritis (inflammation of the uterus lining)
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The ignorance & stupidity are almost as bad as the judgement. POTS isn't 'lightheadedness', and gastroparesis isnt 'stomach pain'.

In addition PCOS, GBS are not 'difficult to diagnose as opposed to MS - which in its early stages i understand to be very difficult to diagnose. And GBS can be fatal - which doesn't get much more 'serious' does it. I'm sure these ignoramuses think the word 'syndrome' is synonymous with 'bogus'/exagerated.

She's treating things she knows about (MS & Crohns) as if they were serious & things she hasnt properly read up on, as not so.

Get your facts straight please.
 
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@RedFox many time i could have written your post myself, so sorry its distressed you so, hearing you completely.

While i dont doubt there are people who are affected by internet/social media posts etc. Tarring an entire community with it - which is what she implies (she's been singing the same song as JKR it seems) - is like saying that all blokes who want a girlfriend & spend time on dating sites trying to get one, are Incels

What a superiior, judgy, vile article, which isnt even accurate before it starts with the judgement & condescension. Yuk
 
Charles B. said:
My question is whether a piece like this actually converts anyone who would have otherwise empathized with our situation ? What is the actual impact of an individual piece like this ? Does it inform medical opinion, forestall research, or just allow trolls another opportunity to reassert their prejudices ?
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@rvallee has got this right above. The Substack account is that of just another right wing controversialist speaking to an ingroup who are confirming their beliefs. In this case it's their beliefs about 'young women' who are failing to live up to the ingroup's expectations of what they should be.

There's nothing to say about the article (written by the site owner's sister) other than it's a polemic, which uses medical references for political effect, not for the conveyance of meaningful information.

Does it inform the opinion of anyone outside a receptive bubble ? - Probably not.

Do any of the very limited number of readers have any especial interests in ME/CFS ? - Probably not.

Are any medical professionals of significance to research going to be influenced by this ? - Almost certainly not.

Will any medical professionals at all, who interact with ME/CFS be confirmed in their prejudices by this ? - Almost certainly yes, but we have ask what use such people are anyway.

This kind of stuff is always going to be somewhere on the Internet, fine to note it as an unpleasant curiosity but there's rarely any good reason to devote much energy to it.
 
JemPD said:
Get your facts straight please.
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It's a political commentary magazine. People read it for opinion, not facts.

Says a lot about how politicized an issue is, when it's literally discussed in a partisan political commentary magazine with a strictly political and identity politics framing.

Medicine abandons those patients, then lets the vultures pick at our bones. How benevolent.
 
It's very annoying for people to take such predictable stances and arguments like that, but at the same time think that they're being so brave by doing so. There really is nothing brave or intellectual about regurgitating tropes about a topic which you have a shallow understanding of.

That being said I understand why they might take that attitude, "spoonie culture" does look a bit odd, and there's a reasonable amount of questionable medical information/advice that exists in it, which can just serve to undermine its credibility further. But I know from experience that that these conditions aren't the result of a culture like that, which makes the most likely explanation that most people in it are genuinely non-culturally sick.
 
Daily Mail:





Daily Mail article here:

https://www.dailymail.co.uk/news/ar...-post-TikToks-crying-hospital-beds-likes.html


"Some spoonies suffer from MS and Crohn’s disease, while others suffer from rarer ones which are harder to diagnose such as polycystic ovary syndrome (PCOS), Rheumatoid arthritis (RA), endometriosis and postural orthostatic tachycardia syndrome (POTS).

"Others suffer from ‘functional disorders’ which don’t have any physical cause, cure of a set of medical tests for diagnosis..."
 
You beat me to it Dx. This Daily Mail article is a rehash of the Suzy Weiss article 'Hurts so good'.

Both articles conflate and confuse actual diagnosed WHO etc medically classified chronic diseases (and necessary operations) with online fads and social contagion. The articles also conflate normal natural responses to losing one's life and independence to diagnosed disabling disease and (as we know) ubiquitous medical gaslighting, with purported attention seeking and 'victimhood'. The word 'Functional' is used to do heavy lifting.

Both articles full of misinformation or just plain ignorance on the diseases named, for example stating that POTS is difficult to diagnose, when the testing/diagnosis is non invasive and recommended by the NIH and NHS: Tilt Table Test, The Active Stand Test, 24-hour ambulatory blood pressure and heart rate monitoring, sometimes ECG, blood tests.

The 'experts' are quoted (neurologist and psychiatrist) not to inform about the actual diseases but to cast doubt on them. The Article emphasises 'secondary gain' with one interviewee apparently gaslighting herself. It's not unknown for patients to credulously repeat gaslighting doctors' beliefs and statements about their illness.
Curiously this DM article does not name ME/CFS, whereas the Suzy Weiss article does.



https://www.dailymail.co.uk/news/ar...-post-TikToks-crying-hospital-beds-likes.html

'Teenage girls with ‘invisible illnesses’ are posting upsetting videos of themselves online which generate thousands of likes as part of a new community – called ‘Spoonies’.

Thousands of teens are banding together on social media as part of the movement, which also encourages them to lie to doctors in order to get the diagnosis that they want.

Posting videos of themselves crying or lying listless in hospital beds racks up hundreds of thousands of likes in some cases, with dozens of comments supporting the ‘spoon theory’.

Experts say that while 'functional disease is a real and chronic problem' it is often not the one the teens 'think they have.'

Dr. Katie Kompoliti, a neurologist at Rush University Medical Center, told Commonsense News: ‘It’s generated by anxiety in most cases, or another comorbidity, and then propagated by the ease of TikTok.’

A blogger coined the term ‘Spoonie’ in 2003, giving their ‘Spoon Theory’ a nickname, claiming a spoon equates to energy'

'Dr. Mark Sullivan, a psychiatrist at the University of Washington Medical Center, is concerned that the internet has created ‘communities of grievance’ that led patients to adopt ‘victim mentalities.’


'Marybeth Marshal, 27, from St. Petersburg, Florida, dropped out of college to focus on healing from fibromyalgia, and then Ehlers-Danlos syndrome.

She said: ‘You can get addicted to being sad, and sick, and the attention you receive. The “misery loves company” thing makes you sicker.

‘There might be something you're gaining by having this diagnosis, like that it’s keeping you from a job that you hate, or from responsibilities that you don’t want to do.’
 
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The basic disrespect for the linear passage of time is one of the most amazing things in all of this, blaming social media for issues that have existed long before the Internet even existed is such a giant red flag of pseudoscience. And yet some people lap it up no matter what, willing to accept the absurd because, well, they already accepted the absurd to begin with, that people will basically put their life in suspension for "thousands of likes" and attention.

And yet many of those people will also point out that it has existed for a long time, the trope of fainting women, neurasthenia and all. But there's always room for what has become the norm: it's both, there can be real illness and a "functional overlay", which is just about the most possibly vague and generic thing that can be said about anything. That's why it makes sense to lump respected diseases with discriminated ones, the "functional overlay" can always be there. Like ghosts. Can't ever prove ghosts aren't involved. Ever. I am Russel's teapot, here's my spout.

Whenever someone complains that their issue is that the symptoms are vague, and yet they find no issues with an even more vague definition, that's like refusing spaghetti because you hate pasta and then demand lasagna. And we're the irrational ones, who keep demanding scientific research while criticizing pseudoscience. Incredible.
 
Trish said:
I have just been looking back over our thread about JK Rowling's latest book with its negative portrayal of internet 'spoonies'. I wonder whether that's what gave the author of this article the idea for it.
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My first thought.

JKR's new novel feature's a 'spoonie' character, Kea, who JKR has running through her mother's house screaming and shouting and slamming doors, then running up the road, all after she had told the detective she was in a relapse and bedbound and so could not be interviewed. :eek:
 
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