Suzy Weiss Manifesto on “Spoonie” Culture

I've said it time and time again, the attitudes people have towards this illness is caused by doctors. Society simply listens to the professionals. When you talk about these illnesses outside of patient niches (this forum, twitter, etc) you will see that 99% of doctors go like "duh of course that's psychosomatic lol give them SSRIs and therapy". This is precisely what they are taught in med school and what their professors say. Trying to advocate to people is a bit like trying to convince them of a conspiracy. Some people might join you (typically not the kind of people you would want to be allied with anyway, alt med crowd etc) but it's unlikely to amount to much.

I don't have a solution, i don't know how to make doctors change their mind. I suppose converting some (non doctor) people is better than nothing but i wish there was a better way.

 

I'm 52, I'm male, I'm neurotypical, I'm straight. I have the same disease as you.
I grew up with white, male, establishment privilege. I have the same disease as you.
I've been fortunate to not have experience of mental illness. I have the same disease as you.
I'm a medical professional and I've questioned my symptoms. I have the same disease as you.

I am 100% certain that medicine has got this completely wrong.

 

"A lot of people with untestable illnesses (Fibromyalgia, Chronic Fatigue etc) and those with substance abuse disorders share symptoms, and studies show they are linked to PTSD, a very real & DIAGNOSABLE condition"


That's one very confused doctor.

I sometimes think it is going to take another full century for doctors to stop repeating myths like that based on junk research, and dump the entrenched, gratuitous, psychologising they seem to be actually addicted to.

 

The way I view this is similar, up until October 2021 in the UK believing ME/CFS was anything but deconditioning and psychosomatic was a conspiracy theory position. No reasonable doctor or person should believe it, all the research and all the official guidance put out by the NHS including on treatment plans were clearly in a particular direction. Unless a doctor is an expert in the area and following those guideline changes they would barely notice anything has changed, its simply not really big there is no replacement in treatment recommended just a stop to GET and a change in the use of CBT, that is specialist stuff. So what they were taught remains and they have been teaching this for 60 years. We are conspiracy theorists, slowly but surely the conspiracy in medicine is being exposed, through research and science and patient advocacy. But in that environment other people have no chance of knowing the truth.

The only practical solution is a diagnostic test that tracks the severity of the disease, that will change things fast, anyone not using the gold standard diagnostics will quickly be seen as a quack. Developing a diagnostic is incredibly important, even if its not solid on the core of the disease with full understanding an odd result that appears in ME/CFS patients and not in healthy controls will prove biological dysfunction and make the diagnostic objective.

What concerns me is this position of fake illness is being applied to Long haulers too. That is 2 million people in the Uk that the doctors are ignoring, its such a severe problem that the whitehouse has had to setup a department to drive the research and investigate due to how dysfunctional medicine and the NIH have been in determining what to do about the condition. The very existence of the DHSC process in the UK is due to medical dysfunction. I view the entire thing as the US and UK governments are utterly convinced and having to work around their medical systems failures. Even in that environment doctors are steadfast these diseases aren't real. The arrogance is astounding.

 

I'm afraid if it makes it to the pages of the Daily Mail, the answer is yes. Plenty of people believe what they read in the DM and use it to form their opinions accordingly.

Beans.

 

There was one thing I wanted to check, avoiding the broader discussion: is there any awareness of Covid and did Long Covid change anything in healthcare?

3 users. 4 comments. There are 6 total references to Covid, one of LC. Out of over 400 comments. Those comments are reasonable and rational, mostly. Upvoted, at least. But then so are the nastier ones.

So maybe, maybe 1% of physicians have some minimal awareness to the point of being able to see the overlap with the population they discriminate against because of ongoing historical blunders. After 2.5 years.

Much of the LC patient community focused on the issue and saw the obvious within months, with the help of a few pwME, no medical training needed. It kind of held in suspension because of medicine's continuing indifference but it only took a few months for complete amateurs to get there, it's just that obvious. What an embarrassment.

 

https://twitter.com/user/status/1569034909125148672

 

One of the young women quoted in both the original Weiss article 'Hurts so good' and then the DM copy cat article, Marybeth Marshall, says on her Instagram she Did Not make the statements attributed to her, and did not give the DM permission to print her name, age, hometown either, and that she did not drop out of college (as stated by Weiss) but graduated on the Dean's List.


One of the quotes Weiss used but Marybeth Marshall states she never said:

"You can get addicted to being sad and sick for the attention you receive. The "misery loves company" thing makes you sicker"



Journalist Weiss writes:
"As Marybeth Marshal, 27, of St. Petersburg, Florida, explained: “There’s some people who deep inside don’t want to get better.” Marshal knows the spoonie world well. She dropped out of Boston College in 2016 to focus full-time on healing from fibromyalgia, and then Ehlers-Danlos syndrome"



Marybeth Marshall says:
"I graduated from Boston College, and am on the Dean's list"



https://www.instagram.com/reel/CiV87RYDP8b/?igshid=YmMyMTA2M2Y=

 

Merged thread

Petition:
Get the Daily Mail to remove their stigmatising article about chronic illness

I have not looked at the article, because I decline to give the UK Daily Mail any traffic, but an article on Spoonies has caused offence:

Link to petition page:
https://www.change.org/p/get-the-daily-mail-to-remove-their-stigmatising-article-about-chronic-illness?cs_tk=AumiAfsiSJSJAyhKPmQAAXicyyvNyQEABF8BvNvgUbjqiF-jrcJIJII2OO0=&utm_campaign=3907a70603e94886861d29d70c4fce03&utm_content=variant_12_v0_3_0&utm_medium=email&utm_source=auto_reco_digest&utm_term=cs

 

Sorry I have only just realised this is not recent, but that the petition is some seven months old.

 

I don't use TikTok at all but sometimes I read similar articles about other topics too. The one I remember in particular is that young people on TikTok pretended to be dead Holocaust victims in their videos and that "trend" caused a bit of an uproar too. So maybe the goal was to show chronic illness communities on the internet in a bad light but maybe it was just another of those articles that wanted to highlight "scandalous" TikTok trends. (It still sounds pretty horrible, I'm just wondering if the "real target" was TikTok and its userbase here in light of some similar other articles.)

 

There are moves to try to introduce legislation controlling TikTok both here in the UK and I think also in the States.

However this article feeds straight into the Wesley type assertions of chronic conditions being psychogenic and reflecting a hysteria that can be transmitted via social media, hitting ableism and sexism at the same time.

 

even more worrying if it was around the time there were genuinely ill young ME patients in hospital in the media and social media.

 

I think when it is targeting pushing buttons on tropes then ableism doesn’t cover it - and it is pure attempts at what do we call it inciting disability discrimination, dislike, disbelief being taught to weaponise mental health labels to cover these plain sentiments (remember this of course was used with homosexuality being put under mental health act for dooo many years and that wasn’t really about concern either)

Plus of course their background with their beliefs in ‘malingering’ that they now cover by pretending it’s more benevolent to suggest such beings don’t know their own mind as they kindly think it’s driven by hysteria.

it is trying to take as generalist populist ideas - people out there who fake or ‘emotional’ (should be some research on men and women of Weasley and chalder demographic and how they react to day after day of not being heard and insinuations just to get that baseline on what is ‘their situational cause’ vs ‘abnormal’ so it isn’t always young women and chronically ill) - and get said people who are happy to belief ‘this concept exists so I’ll follow you when you tell me who they are’ aim them at a demographic.

Normally based on nothing more than said researchers being able to use weak dodgy associations that are no more methodological than constructivist to assert ideas of ‘personalities’ tgat don’t exist as real types ‘but everyone is happy to be persuaded they know one (but that tells you more about those people if they think they know a few perfectionists than those they claim are one).

It’s so blatant constructing bigotry against a group to prime how certain things will be seen if it’s a similar demographic I find it hard that the rest of the world pretends emperors new clothes it is anything else.