Sphyrna @acanopyofstars Twitter profile

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Sphyrna

@acanopyofstars

3 years

Most people lack the creativity to conceive a disease state in which "I have read 10 pages of a book, and now I can't shower for the next two weeks" is a perfectly sensible statement, which is not visible as gross structural pathology, but rather happening on much smaller scales.

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Sphyrna

@acanopyofstars

7 months

@elle_carnitine Reminds me of all the great minds who have reasoned that writing Tweets for advocacy purposes, while lying in the bed in darkness, means we ought to be able to handle a full workday. Ableds are so out of touch that they think every "trivial" task is equally interchangable for us.

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Sphyrna

@acanopyofstars

3 years

Had a doctor recently tell me that my post-exertional malaise is a self-fulfilling prophecy, as if recognizing the pattern that exertion leads to deterioration causes it. Is not sticking my hand into fire, knowing I'm gonna get burnt, also a self-fulfilling prophecy?

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Sphyrna

@acanopyofstars

2 years

PwME talking about the rich lives they lead before becoming disabled gets me a tad depressed. Never had the chance to build one in the first place, by virtue of being chronically ill since my mid teens. I never had an identity outside of "vegetable with an internet connection".

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Sphyrna

@acanopyofstars

2 years

Doctors: "If we give them a diagnosis, they will adopt the sick role and subsequently never become healthy again" Also doctors: *make it impossible to access diagnostics, treatment, or management options that would increase my chances of ever getting better without a diagnosis*

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Sphyrna

@acanopyofstars

2 years

Worst part about ME is the PEM death spiral, where you actually feel like you're actually about to die, and get so wired that it becomes impossible to rest, only further exacerbating the problem. Would only expect life itself to come up with a disease this atrocious.

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Sphyrna

@acanopyofstars

3 years

So their only option is to do what people do best with issues they don't understand, to keep their world view making sense - just deny the whole fucking thing.

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Sphyrna

@acanopyofstars

3 years

Btw, here's an example. The archetypal "fake women's disease", transferred to mice via serum. These researchers might be on the brink of trashing decades of actual "false illness beliefs", raising the question how those ever took hold in the first place.

Passive transfer of fibromyalgia symptoms from patients to mice - PubMed

Fibromyalgia syndrome (FMS) is characterized by widespread pain and tenderness, and patients typically experience fatigue and emotional distress. The etiology and pathophysiology of fibromyalgia are...

pubmed.ncbi.nlm.nih.gov

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Sphyrna

@acanopyofstars

3 years

Lol, the guy who kneecapped the ME/CFS wikipedia page for years on end is perplexed that he doesn't have anything to offer for his patients suffering from postviral complications. Can't make this shit up.

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Sphyrna

@acanopyofstars

7 months

"Bro if you're bedridden and can't feed yourself, just, like, build communism or something idk" It's like that "just draw the rest of the fucking owl" meme.

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Sphyrna

@acanopyofstars

1 year

When pwME say that their disease is biological, they mean that there are no psychosocial factors, alone or in combination, that are specific to the condition or strong enough in magnitude that, if used as treatment targets, would even move the needle on their ability to function.

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Sphyrna

@acanopyofstars

11 months

It took me nearly a year to link exertion to symptom exacerbation, because prior to falling ill, I had long internalized the adage to always stay mobile, so that I was stuck in a permanent state of PEM. By the time I had realized this, I had already worked my way into severe ME.

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Sphyrna

@acanopyofstars

10 months

Csn anyone explain why medics first response to being exposed to the concept of postexertional malaise is to point out "everyone gets tired after activity"? Do they respond to learning about dysentery by saying well everyone has a lil bit of the ol' runs once in a while?

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Sphyrna

@acanopyofstars

2 years

Wonder how many ME recovery stories are just people utterly forgetting what it means to be healthy over time.

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Sphyrna

@acanopyofstars

2 years

Anyone have hot tips to enjoy staring at the ceiling without succumbing to existential horror? My 2 digit hours screentime is just making me sicker, and I need to kill the 21 hours I'm awake per day somehow. It's like being in solitary prison, except you have the flu forever.

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Sphyrna

@acanopyofstars

7 months

@elle_carnitine I don't understand how these people think "just ask for help lmao" is a gotcha. Where do we find this apparently ubiquitous, around the clock "help", with all our ADLs, and all that for free, when we're regularly abandoned by friends and family, and cut off from state safety nets

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Sphyrna

@acanopyofstars

1 year

Wake up babe, new "deconditioning hypothesis" dropped

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Sphyrna

@acanopyofstars

1 year

It's 2023, and I still have to inform people that the "death threats" against PACE trial researchers were, under oath, admitted to have been fabricated. Always fun to see the outsized harm a single lie and media willing to run with it can cause. The WMD myth of the ME discourse.

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Sphyrna

@acanopyofstars

1 year

@PtsWithPower Good luck getting on disability without proper diagnostics being conducted. Physicians that state the above are selfish, and stop taking your continued suffering into consideration once they've done the bare minimum to avoid litigation, i.e. made sure you won't be dying soon.

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Sphyrna

@acanopyofstars

1 year

Wonder how much of ME denial just stems from doctors not willing to admit they've doomed millions of patients to decades of awful quality of life, all because of their own tribalistic social proof games?

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Sphyrna

@acanopyofstars

1 year

Doctors are half right about ME being overdiagnosed. They just fail to see that it's underdiagnosed in the correct population, and overdiagnosed in the wrong one, due to lack of knowledge of diagnostic criteria, and using ME as a trashbin for "fatigue". They're at fault for both.

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Sphyrna

@acanopyofstars

10 months

@x3r0gxx I remember a study from the UK that stratified doctors by whether they received training on ME or not, and the percentage of doctors who believe ME is a mental illness was actually higher among those who received training. So, they're being taught outright misinformation.

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Sphyrna

@acanopyofstars

7 months

I'd like to inform those downplaying reports of alcohol intolerance in Long Covid as "hypochondriacs not coping with getting older lmao" that this symptom had its presence in the ME literature going back decades, but experience tells me they'd just double down on their narrative.

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Sphyrna

@acanopyofstars

4 years

"X is not a mental illness" is shorthand for "treatments that belong to the domain of psychiatry, such as CBT/GET/ADs, are ineffective at treating this condition." It does not mean mental illness isn't real, that it is less important, or that mind and body are separable entities.

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Sphyrna

@acanopyofstars

11 months

@depthsofwiki If only I could've shown him this image.... he could've been saved....

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Sphyrna

@acanopyofstars

7 months

@elle_carnitine Can't say that, of course, because the obvious conclusion will be that we're all just horrible people, naturally driving everyone away with all our horribleness.

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Sphyrna

@acanopyofstars

7 months

I suspect it'd be significantly cheaper to give disabled people more money so they can get their dietary needs met via exploitation-free means than to institutionalize them, but let's be real, people don't want things to be better, they want their perceived inferiors to suffer.

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Sphyrna

@acanopyofstars

2 years

@nataliesurely @newrepublic The "dismissal" that having these conditions written off as psychogenic entails has nothing to do with stigma against mental illness, but everything to do with being offered ineffective tx modalities, and research waste produced in a field already marked by chronic underfunding.

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Sphyrna

@acanopyofstars

1 year

@narkosedoc >Niemand hat je von MECFS gehört. Vielleicht ist das eher Indiz dafür, dass das Thema nicht auf Twitter übergroß ist, sondern da draußen überklein.

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Sphyrna

@acanopyofstars

9 months

@elle_carnitine Was a huge wake up call for me to realize that many leftists don't have much of a concept beyond "leftism is when worker's rights". The second work is no longer an option, you are excluded from their consideration, not unlike disabled doctors abandoned by their former colleagues.

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Sphyrna

@acanopyofstars

2 years

Reminiscing on the time where my ME was so severe I went over half a year without talking to anyone IRL. Felt like I had to relearn my native language when I started using it again, and my voice sounded completely foreign. It didn't feel real. Still doesn't, actually.

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Sphyrna

@acanopyofstars

2 years

I used to think that any conflict between pwME/LC and the F*D community could only be internecine, so I never engaged, but painting every form of cognitive dysfunction that does not directly result from neurodegeneration as "functional" seems very unscientific and dangerous.

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Sphyrna

@acanopyofstars

2 years

I think it's extremely arrogant of someone to believe their mere label holds enough sway over me to render me permanently, severely disabled for the rest of my life. I wish I had that kind of confidence.

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Sphyrna

@acanopyofstars

2 years

Once a cure for ME is developed, estimations by how many years the BPS mafia+policymakers have set it back should be calculated, and multiplied by the # of QALY lost in the meantime. I think the result might tally up to something up there among the worst wars of human history.

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Sphyrna

@acanopyofstars

2 years

@hellozeik @EfCovid19 Psych has a toolkit tailormade to quash patient dissent. Think your disease is somatic? Fixed idea. Know your treatment plan will result in deterioration? Unhelpful belief, also noncompliance. Think your MH issues are consequence, not cause, of your condition? Lack of insight.

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Sphyrna

@acanopyofstars

3 years

My mouth and my rear-end are also connected. Acknowledging this, can I now cure hemorrhoids by brushing my teeth?

Paul Garner

@PaulGarnerWoof

3 years

Your brain and body are connected. You mind and your brain are connected. Seriously, y’all. Stop blocking paths to recovery. #longcovid

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Sphyrna

@acanopyofstars

1 year

What bugs me about the new wave of FND-adjacent cranks encroaching on ME/CFS is the abuse of emotional valence used to launder pseudoscience. They're "pro-hope/recovery"; their approach is "holistic." We talk about "deterioration", "incurability", "harms"; are "reductionists."

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Sphyrna

@acanopyofstars

1 year

"Our findings suggest that there may be long-lasting health impacts from other respiratory infections that are going unrecognised” This might be the most painful sequence of words possible in the English language for any pwME.

Billy Hanlon

@bhanlon15

1 year

The Hill: "UK researchers find evidence of ‘long cold’ syndrome" “Our findings suggest that there may be long-lasting health impacts from other respiratory infections that are going unrecognised,” the authors wrote.

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Sphyrna

@acanopyofstars

2 years

Nah, what's gonna happen is that they'll make PEM disappear by using an extremely strict definition of harm+questionnaires with floor effects. The trial will find modest benefits for nonspecific QOL measures, and every LC patient w/o structual damage on MRI is pushed into rehab.

S Blitshteyn MD, FAAN, Dysautonomia Clinic

@dysclinic

2 years

If exercise is proven to be ineffective or harmful, it'll be demonstrated by data in the trial so while many people are worried/upset, #Science will tell us if and what type of exercise is beneficial or harmful to patients. Read my article on #POTS here:

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Sphyrna

@acanopyofstars

3 years

@exceedhergrasp1 You're either malingering, catastrophizing, harboring conscious false illness beliefs, unconscious false illness beliefs, deconditioned out for secondary gain, not complying with the definitely 100% effective treatment, doing too much, doing too little. There's always something.

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Sphyrna

@acanopyofstars

7 months

@mercurial_moons Yeah, if I had to choose, "disabled person is incorrectly believed to be capable of doing much more, and needs to be browbeaten accordingly" is far more widely weaponized than "disabled person can legitimately do much more, but everyone else wants them to be sick too much."

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Sphyrna

@acanopyofstars

1 year

Any pwME here feel they were failed by biomedical researchers? I feel failed by politics, the press, medical institutions in academia and practice, by health psychologists,the people in grant committees. But by bioscientists limited by the meager resources made available to them?

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Sphyrna

@acanopyofstars

2 years

(Here's what actually rendered me care dependent: being forced to participate in contraindicated rehab courses as a consequence not having the label, and later, not having it taken seriously)

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Sphyrna

@acanopyofstars

4 years

You know what I find shocking? Checking the "likes" on articles like the latest Garner piece, and seeing how many MDs you can count. If that doesn't tell you anything frightening about the state of scientific education in medicine, I don't know what would.

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Sphyrna

@acanopyofstars

10 months

Got skewered in social court today for walking to my seat too fast. Wish there was an easy way to make the two weeks I spent bedridden & pissing in a bedpan to prepare for the appointment legible, or the fact that I'll miss out on Christmas with my family again due to PEM.

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Sphyrna

@acanopyofstars

2 years

I fantasize about going to med school once I'm cured, to harness all my painfully-earned lessons being ill for good. I'd easily make it in, but unless ME is cured in the next 5 years, my training wouldn't be complete until I'm ~40, which strikes me as shit opportunity cost-wise.

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Sphyrna

@acanopyofstars

3 years

@ClrBlwrs @GeorgeMonbiot i recently found out that Wessely was his PhD supervisor. always fun to see how skepticism of bad science stops where cronyism starts, ain't it.

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Sphyrna

@acanopyofstars

6 months

Saw someone argue that deterioration from rehab in ME/CFS doesn't exist, because otherwise we'd be far more litigious, but it's really obvious we just wouldn't have a case.

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Sphyrna

@acanopyofstars

2 years

I often see garden variety doctors accusing biomed ME researchers of having ideological conflicts of interest. IMO, if you have ever used the phrase "heartsink patient", or similar tribalistic garbage, to express frustration w/ pwME, you yourself have serious ideological COIs.

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Sphyrna

@acanopyofstars

2 years

Stopped thinking about my illness, because I'm sick of the futility of it, but my health didn't magically improve. What's up with that, I thought ME was a functional disorder, weren't those supposed to abate as long as no attention is paid to them?

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Sphyrna

@acanopyofstars

3 years

@MatthewJDalby Yeah, you can find him throughout the edit history of the page for god knows how many years, perpetually undoing any revision even remotely deviating from the BPS playbook. He is explicitly mentioned in the OP of this thread.

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Sphyrna

@acanopyofstars

2 years

@ManvBrain @KarlBode @TaylorLorenz Jeff, most of the evidence you cited to help exonerate the PACE trial is even worse than the PACE trial itself. The first link directs towards a study that uses a *waiting list* as a control group, for example. Sheer volume of low quality does not high quality evidence make.

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Sphyrna

@acanopyofstars

1 year

@elle_carnitine It's more boring than that, just one of myriad ways for doctors to commit the fundamental attribution error and call us weakling who can't deal with life. If they'd put a sliver of their creative energy into basic research instead... we'd be in the same place cause they have none

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Sphyrna

@acanopyofstars

7 months

@GeorgeMonbiot Great article, might've been worth pointing out re. threats against researchers, that a PACE trial researcher testified under oath that these purported death threats were in fact fabricated.

Sphyrna

@acanopyofstars

4 years

@TomPMarshall @_Lucibee @GeorgeMonbiot @WesselyS Wouldn't be surprised if he made it up. In the context of the PACE trial, reports of threats by activists were found by tribunal to have been grossly exaggerated. See p.36, p.40. Raises the question why these researchers found the fabrications necessary.

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Sphyrna

@acanopyofstars

8 months

Little as morbid as reading posts on your timeline of people electing euthanasia due to severe disability, juxtaposed by posts of a public broadcasting channel reinstating an episode peddling bs altmed grifts as treatment for said disability. I feel nothing but contempt anymore.

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Sphyrna

@acanopyofstars

10 months

@jenbrea Right? Just because FND diagnosis should require positive, specific clinical signs to be made, doesn't mean that's how all clinicians out there handle it. Just like diagnoses of ME/CFS are falsely given to patients who fulfill none of the criteria other than being "fatigued".

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Sphyrna

@acanopyofstars

7 months

@findboundary @GeorgeMonbiot Not sure a book with a chapter on ME/CFS predicated on a clinical trial later determined to have been of very poor quality, and that according to their prespecified analysis plan was null, is the best place to learn more here.

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Sphyrna

@acanopyofstars

4 years

Replace "positive thinking" with "homeopathy" in the Garner piece, and just imagine how badly his colleagues would've shunned him.

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Sphyrna

@acanopyofstars

2 years

I hate to admit this, since it feels and probably is, wrong on so many levels. Granted, so is just about everything pertaining to this disease.

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Sphyrna

@acanopyofstars

4 years

@AnilvanderZee From the originators of "illness without disease" - Recovery without recovery.

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Sphyrna

@acanopyofstars

1 year

@awgaffney Again you manage to evade the issue of poor scientific practices in biopsychosocial research in order to weaponize massively neglected patient groups for your own political pet issues. There would be no reason to attack the model were it fit for purpose.

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Sphyrna

@acanopyofstars

6 months

Real headscratcher as to why a disease rendering a large share of cases bedridden, and discussions about which feature far more noise than signal, would feature a sizeable number of "extremely online" sufferers.

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Sphyrna

@acanopyofstars

2 years

@nataliesurely @newrepublic Maybe you should've asked Sharpe why he thought it necessary to invent rumors that threats have been issued against PACE researchers and patients, as false pretense to protect the trial data from being made public - which in reanalysis showed his study to have been p-hacked.

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Sphyrna

@acanopyofstars

7 months

I'm bothered by ableds policing what we do with our limited energy, without any real frame of reference for the effort each activity takes within the context energy-limiting disease. There's a lot of granularity at the lower end of the scale healthy people will never be aware of.

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Sphyrna

@acanopyofstars

1 year

Researching ME/CFS is too expensive, and would take away too many resources from other diseases. Meanwhile paying for benefits, medication as symptomatic treatment, ineffective treatment options such as GET/CBT, and loss of economic power is, of course, completely free.

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Sphyrna

@acanopyofstars

2 years

You're calling Long Covid "the new fibromyalgia"? You mean an underresearched condition with little in the way of effective treatment options, unfairly psychologized with mounting evidence of biomed pathology, misused as a wastebasket diagnosis? Glad we're on the same page here

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Sphyrna

@acanopyofstars

2 years

What's the psychological mechanism that makes it possible for pwME to be cured via psychological interventions if they "accept" a psychogenic aetiology of their illness, but not via bunk biomedical interventions if they "believe in" a physiological aetiology?

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Sphyrna

@acanopyofstars

4 years

@ProfRobHoward You should understand that replicating studies with the same exact flaws over and over again doesn't make the quality of evidence any better.

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Sphyrna

@acanopyofstars

4 years

It's frustrating hearing people refer to LC as "the next ME/CFS", as if the old one magically vanished.

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Sphyrna

@acanopyofstars

2 years

@TraceyABurgess Yeah, I was just afraid I'd be crossing the line where I'm playing Oppression Olympics, but that makes no sense thinking about it in hindsight. There should be room to talk about how differently we experience this disease, esp. when severity, onset, etc. can differ by so much.

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Sphyrna

@acanopyofstars

10 months

@alexandrite113 When you lose many more of those years, look back, and realize everything that happened in a decade could've been compressed into a month of healthy life or so, life becomes desperately short again.

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Sphyrna

@acanopyofstars

7 months

@woozled @laurenancona In Germany it's not age limited, but even just daily lunch is so expensive that it would eat up 60% of my monthly benefits. So at the very least the point that I would be pointlessly paying a premium for "treats", were I to use a non-MoW delivery service, doesn't hold.

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Sphyrna

@acanopyofstars

9 months

Idk where the idea of ME symptoms being "vague and nonspecific" comes from. Most everyone at my level of severity has perfectly interchangable "lifestyles"/experiences. I suppose there may be a range restriction problem, what with medics being more likely to run into mild cases.

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Sphyrna

@acanopyofstars

7 months

I think you're missing a few logical steps between "there is no known pathology" (Why'd you leave my homie hanging, btw?) and "the condition is fundamentally psychological, and no pathomechanism can ever be found" that are in dire need of justification.

Aeron Laffere

@findboundary

7 months

Muted this yesterday, the legions calling me names got old quickly. Worth saying again: there is no known disease pathology in ME/CFS, only symptoms. Now, It's entirely valid to explore pharmacological routes to treating those symptoms for people who are suffering, but it

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Sphyrna

@acanopyofstars

4 years

@AlanLevinovitz @VICE Thank you for not only mentioning ME/CFS, but striking at the heart of the debate with respect to questionable research practices. We're not used to anything other than tone policing (and the same old debate about Cartesian dualism), so this certainly was a breath of fresh air.

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Sphyrna

@acanopyofstars

8 months

Knowing that thousands of people would be delighted to hear I killed myself over a "fake disorder no one actually believes exists" is one of the main reason why I never will. Contempt is one hell of a motivator.

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Sphyrna

@acanopyofstars

3 years

@AlanCarson15 @NICEComms Imagine being so butthurt about the new guidelines that you'd rather endorse a modality based on "neurolinguistic programming and osteopathy", rather than to just cope with the fact that science is finally moving on.

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Sphyrna

@acanopyofstars

2 years

Evaluating the efficacy of pacing makes about as much sense to me as evaluating the efficacy of not eating peanuts when you have a peanut allergy. Why would you hold a strategy conceived to prevent deterioration to the same standards as an actual treatment modality?

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Sphyrna

@acanopyofstars

3 years

@MarisaDercole These people seem to believe that, before disease onset, we've never once been fatigued in our lives, and thus wouldn't been able to tell the difference.🤦‍♀️

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Sphyrna

@acanopyofstars

1 year

This "Oh so you're saying illness isn't biopsychosocial? Everything is connected!!" (5 quadrillion clapping emojs) motte and bailey shit is so aggravating.

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Sphyrna

@acanopyofstars

2 years

You can't imagine how disappointed I was to find out that Simon Weᛋᛋely is only 65 years old. People like him tend to get unusually old, not merely due to socioeconomic status, but because they're demons sustaining themselves through the sheer number of lives they have ruined.

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Sphyrna

@acanopyofstars

11 months

Would be great if I could spend all the "free time" coming with being bedridden for nearly a decade somewhat productively, but I can't even read any text but a couple of tweets without next day PEM, and it's driving me insane. I'll never get used to this sad waste of a life.

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Sphyrna

@acanopyofstars

3 years

I can't bring myself to blame most complicit medics; they merely regurgitate their peers rhetoric, and assume that the secondary literature produced in the field has merit - they don't just not know the right questions to ask; they're not aware they should ask them to begin with.

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Sphyrna

@acanopyofstars

4 years

@StenHelmfrid Well, if you do want to change something, and yet you're still not getting better, then clearly it's your perfectionism stressing you out, and keeping you sick. There's always another hypothesis that lets them delegate responsibility to the patient.

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Sphyrna

@acanopyofstars

7 months

@elle_carnitine Selection effects are also why doctors have so many peculiar beliefs about pwME. With an underdx rate of ~85%, and 40% of "ME cases" being misdiagnosed idiopathic fatigue/false negatives of other conditions, the ME cases they see have little relation to the true ME patient pop.

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Sphyrna

@acanopyofstars

6 months

The crux is that proving causality is next to impossible since harms aren't recorded, and that forcing patients into ineffective and harmful therapies *is* the standard of care. All it takes is the entire profession convincing themselves what they're doing is good and justified.

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Sphyrna

@acanopyofstars

1 year

@domstadtmedicus Also ich als ME/CFS Patient benötige keinen Diskurs, der sich fernab jeglichem Verhältnis von Fördermitteln und Krankheitslast gegen Grundlagenforschung ausspricht, und dafür nicht mehr tragbaren Krankheitskonzeptionen und Behandlungsmethoden das Hintertürchen offen lässt, danke.

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Sphyrna

@acanopyofstars

3 years

@Dr2NisreenAlwan A multisystem condition unjustifiedly being reduced to "fatigue" as its cardinal symptom, with all information content being lost, due to medicine's complete inability to discern qualitative differences in multiple types of fatigue. Now where have I heard that one before..

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Sphyrna

@acanopyofstars

4 years

@ProfRobHoward Have you ever considered that this evidence base is not quite as strong as you might think it is? Also, ME/CFS is not a mental illness.

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Sphyrna

@acanopyofstars

2 years

The two people I've been closest to in my life have told me they would most likely kill themselves in my situation, and my reaction to that mainly consisted of elation over how well they understood the situation. Can't say that about anyone trying to downplay/offer me false hope.

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Sphyrna

@acanopyofstars

2 years

@ein_gabriel University student, if that counts. But if my recent disability assessment is anything to go by, I'll soon have a promising career working 6h per day in a workshop for the disabled, the fact that I'm not even able to wash myself, or prepare my own food notwithstanding.

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Sphyrna

@acanopyofstars

7 months

One reason I barely post is that whenever I read my posts again a couple of hours later, I can barely make out what I was trying to say. Doubt anyone else cares much, but cognitive dysfunction is easily my most distressing/shameful symptom, and I hate seeing it on public display.

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Sphyrna

@acanopyofstars

2 years

Imagine having a disease that forces you to kill yourself through overexertion via regular medical appointments, all for a fighting chance as to not be killed by means of having your benefits cut off entirely, or being coerced into even more damaging work programs. That'd suck.

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Sphyrna

@acanopyofstars

6 months

Think a graded vodka therapy trial would've passed IRB approval?

Lucibee 🌻

@_Lucibee

3 years

If you repeat a lie often enough...

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Sphyrna

@acanopyofstars

7 months

Don't worry. I understand that some economic activity is more/less reliant on exploitation. But I don't think that in lieu of alternatives, telling us to starve, making up services where none exist, calling us fakers, and not being mindful of "crip tax" situations will help much.

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Sphyrna

@acanopyofstars

1 year

@emmyremmyloo Not surprising to find out that next gen doctors are going to be every bit as awful as the current ones. Same exact system; same exact results.

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Sphyrna

@acanopyofstars

3 years

@StenHelmfrid I had a doctor once tell me that "yes, CFS patients certainly do self-report great perceived loss of quality of life." It's funny that biased reports of improvement are taken at face value, while reports of harm and lack of QoL are emphatically denied, isn't it.

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Sphyrna

@acanopyofstars

1 year

@elle_carnitine Yeah, it's from the r/residency subreddit, and posts like that usually score hundreds of upvotes, so if you had hopes the next generation of doctors would be better than this one, consider them dashed. Not a surprise that the same exact system keeps producing the same outcomes.

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Sphyrna

@acanopyofstars

2 years

@Dan_Wyke IIRC Ron Davis hypothesized that it works due to GABA receptor agonism on immune cells. I'd be wary bringing it up to most doctors, because what they'll be thinking is, if an "anti-anxiety" drug ameliorates your symptoms, then you clearly must be suffering from anxiety disorder.

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Sphyrna

@acanopyofstars

4 years

@EricTopol @Jeremy_Devine_ @McMasterU @WSJ @NIH @itsbodypolitic It's a bit rich for someone to speak of scientific rigour, while being completely ignorant of all the methodological issues surrounding psychosocial research into ME/CFS.

Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a...

Background The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome....

bmcpsychology.biomedcentral.com

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