Article: We Might Have Long Covid All Wrong (covers FND,ME/CFS,includes Sharpe,Garner, Carson and more).

These are conditions in which it appears the nervous system isn’t working the way it should, but doctors can’t figure out why.

So why are FND advocates so certain it is psychogenic?

Is this a competition to see who can get away with the most profound and blatant contradiction?
 
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This reply communicates an unequivocal truth. Shure is intransigent regarding her position, and will leverage any opportunity to advance this framework. Her access to various platforms and penchant for publication makes her an adversary we will undoubtedly contend with for years to come. She’s Elaine Showalter on steroids, and we should be prepared to combat these arguments for the millionth time.
 
Charles B. said:
This reply communicates an unequivocal truth. Shure is intransigent regarding her position, and will leverage any opportunity to advance this framework. Her access to various platforms and penchant for publication makes her an adversary we will undoubtedly contend with for years to come. She’s Elaine Showalter on steroids, and we should be prepared to combat these arguments for the millionth time.
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Or, alternatively, she is a dilettante, out of her depth, without any particularly strong opinions but who nonetheless is deeply indignant that anyone would have the temerity to disagree with her, and who will now direct her illuminatory gifts onto other topics.
 
"There is zero credible evidence that she ever had Lyme Disease (by her own admission, she tested negative based on established, mainstream CDC criteria), let alone a chronic manifestation that was alleviated in any way by multiple rounds of long-term antibiotics, which have been decisively found to be ineffective. "

Oh dear. Does she have any idea of the controversies embedded in this sentence? It's almost as if she throws out these declarations unaware of the massive upheaval underway in Lyme world about these and similar contested opinions.
 
SNT Gatchaman said:
No there is no such implication - that is your interpretation and you're projecting. "Dismissed as psychological" means dismissed by being incorrectly defined as psychological. The term carries absolutely no judgement on "illness aetiology merit" or some hierarchy of validity.
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exactly...

If i, while having a broken leg (for example), went to the doctors in huge distress reporting i was hearing voices telling me to kill myself, & the doctor dismissed this as being 'its because you're in pain with your leg - here is a stronger pain killer'. I would absolutely get home and tell my family that the doctor had 'dismissed it all as being due to my broken leg, fobbed me off withpain killers when i fear i may be suicidal'.

Would Shure then say I was implying a hierarchy of validity - with psychosis being more valid than fractures?
 
RedFox said:
That crap again. I don't have a problem with mental conditions. I'm living with autism, PTSD, binge eating disorder, and probably some degree of OCD. ME also causes me cognitive impairment.

I have a problem when a medical condition that has nothing to do with my thoughts is blamed on my thoughts. The problem isn't the concept of a psychosocial etiology, it's that you're wrong about the etiology. I am insulted when someone claims that exercising more will cure my ME, but I'd also be insulted if someone claimed without evidence that changing my diet would cure my mental health problems.
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How many of us did actually take CBT of any kind with or without GET on our own volition just to be made infinitely worse. I went for it myself, hook, line and sinker. I mean, I went all in. I deluded myself for 5 long years saying I just hadn't found the right balance of activities or I wasn't trying hard enough because that's what I had been told at the clinic that I went to freely without anyone forcing me. The only good that came out of it was that I couldn't be made to go again when applying for benefits.

It took a very strong case from my mother, who saw me deteriorating, to convince me to at least reflect on the possibility I was hurting myself by following the advice laid out for me by a psychologist that fully bought into the BPS-narrative for this disease. Where does Shure come off making the claims she does. If there were such a thing as M.E.-activists they're created by the harms of depriving people help and feeding them a harmful narrative.
 
Solstice said:
How many of us did actually take CBT of any kind with or without GET on our own volition just to be made infinitely worse. I went for it myself, hook, line and sinker. I mean, I went all in. I deluded myself for 5 long years saying I just hadn't found the right balance of activities or I wasn't trying hard enough because that's what I had been told at the clinic that I went to freely without anyone forcing me. The only good that came out of it was that I couldn't be made to go again when applying for benefits.

It took a very strong case from my mother, who saw me deteriorating, to convince me to at least reflect on the possibility I was hurting myself by following the advice laid out for me by a psychologist that fully bought into the BPS-narrative for this disease. Where does Shure come off making the claims she does. If there were such a thing as M.E.-activists they're created by the harms of depriving people help and feeding them a harmful narrative.
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I tried regular exercise and looking for the "right" way to manage my activities. Shockingly, it did nothing. Maybe I should've tried yoga instead hehe.
 
RedFox said:
I tried regular exercise and looking for the "right" way to manage my activities. Shockingly, it did nothing. Maybe I should've tried yoga instead hehe.
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Try Tai Chi, you'll feel so connected to the world. If you do it long enough you'll connect to the ground too.

They actually gave us Tai Chi at that place btw and one of the women nearly tipped over on the way back to her room. She was considered a bad apple by the psychologist in charge.
 
Sean said:
Shure also has another meaning, albeit a bit more obscure: It is a brand of microphone.

So you could say that she likes broadcasting her opinions to the world.
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Unfortunately the SM57 & SM58 are pretty much industry standard, the most popular traditional mics you'll see on most stages, so I was trying to not even think about that. Not even sure she rates a comparison to the SM48 which is B-stock.
 
I think the “fact checking” wasn’t the issue. The only “facts” to check were the statements from the psycho set. The issue is that she didn’t bother to highlight/interview folks from the “disease is a biological illness” side.

This is the point

 
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There's a really good reply to Natalie Shure's Medium artcle:

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Winston Blick
1 day ago (edited)
Natalie, it’s very enticing to attribute other people’s conditions to psychogenic factors, but much less so when you’re the one who is personally affected. It’s highly likely you’d be far more committed to uncovering the underlying pathophysiology of these conditions if you were the one suffering from them every day, if you were the one whose life had been overturned for years, if you were the one who was in the prime of your life but housebound or bedbound with illness. I suspect your academic interest in "combatting dualism" would immediately evaporate.

Once you’d alleviated every BSP factor, once you’d tried FND interventions, CBT, and every supplement to no avail. Once you’d tried graded exercise and experienced how much worse it made your condition, it would dawn upon you that you had been in the wrong all along. Since we can’t offer you this experience firsthand, please just stop.

Stop speaking to the nature of conditions you clearly do not even remotely understand — in terms of the patient experience, the science, or the history.
Stop advancing the ideology of a small group of psychiatrists and practitioners with a stake in psychologizing these conditions. (We aren't fooled by "all suffering is real suffering" or the euphemism du jour. All result in less biomedical research funding and lack of effective treatment, or outright inappropriate treatment, for these conditions.)

Stop professing what potential treatments are or aren’t possible when you have no scientific or medical qualifications for making these determinations and presumably cannot even conceive what's possible.

Stop intentionally omitting scientific findings that conflict with your newly adopted ideology. Stop casually making extraordinary claims about the etiology of these conditions without evidence. (For starters, CMD+F “just as easily” in your New Republic piece.)

Stop sending the message to our loved-ones, to our employers, to medical professionals and to policymakers that we’re not to be trusted when it comes to interpreting the nature of our own suffering.

Stop undercutting our chances at getting our lives back.
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