Jo

[WeRateDogs @dog_rates]

This is Ramsey. He is a mail delivery dog. Shipping is free, and while packages might not be handled with care, they are handled with enthusiasm. 14/10

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

And those complications help us build new testable ideas, refine our models, and think outside the box.

Science isnt an answer, its a method to systematically test ideas. Uncertainty is kind of our jam.

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

I may be baffled, confused, and have some conflicting ideas, but i would put money on me knowing more about this topic than nearly anyone else on the planet. Baffled scientifically does not mean clueless. It means things are complicated

[Jo @SEPfieldPatient]

@AndrewMeffan @subversivepsych I once had an emergency dentist appointment for significant pain & when the dentist found no dental problems he did not say "You're anxious" he said "I think you have a sinus problem but my xray didn't cover that area, see a doctor". My sinus problem was not found for years more

[Jo @SEPfieldPatient]

@AndrewMeffan @subversivepsych Also I just don't think dentists are very gaslighty... They'll tell you you have problems you didn't know you had, with proof! Or congratulate you if things are fine (I once had a dentist tell me my teeth were very boring and stable and maybe I should come back 5yrly!)...

[Salvatore Mattera @SalvMattera]

I looked into @AlanLevinovitz 's previous work and he does have this sort of template he applies in his writing. The ironic thing is that I believe he could have written a great article about neglected illnesses and the people who have them using that template.

Much of the community does have cult-like structure to it, with in-groups and out-groups, sacred beliefs, rituals, high priests, and language games. It's something I've written a lot about myself, and I think it often gets in the way of real solutions.

But he's so Long COVID-phobic, he ended up shilling for what's arguably the worst cult in this entire space.

Brain retraining isn't just cult-like - it is the literal definition. Charismatic leaders with origin-stories. A sacred doctrine (your body is fine, it's your nervous system's fear loop) that can never be wrong; that can never be disproven. Testimony as the central ritual. Paid initiation and a pipeline that turns the converted into evangelists who recruit the next crop of disposesed. Apostates that get kicked out. A religion scholar could have written the definitive story; instead, he got himself baptized.

[Jo @SEPfieldPatient]

@aprettierpixie Your MMA is high? Or low? Homocysteine? B12 can be paradoxically high while still being functionally deficient… it’s a very difficult thing to clarify.

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

You don't necessarily need significant expertise to write a fair reflection of a topic.

But it does help, because sometimes poorly evidenced claims sound reasonable. And if you get duped or report poorly, ambiguously, or lack balance, then your credentials become relevant.

[Finn, PhD @Finn000000000]

My immunology professor mentioned that EBV was the whipping boy of immunology.

Perhaps it is deserved though!

Even before it was proven as the aetiology of MS it was long suspected, as was the mechanism.

I think we don’t fully appreciate that neurology is a weak spot in medicine likely bc it’s open to so much abuse and it’s less organocentric. Combine that with a complicated field like immunology and you have a problem….

It’s little wonder there are these big groups of patients with ‘mystery’ illnesses. They sit in a big blindspot.

[Todd Davenport @sunsopeningband]

This is the one that got me in trouble. 😅

[Captain Doombeard @CDoombeard]

The most Japanese man encounters the most American situation, and writes of his experience in the most elegant way I have ever seen

I am inspired. I wish I could have written this, but this man writes better truth than I could have written as fiction.

Thank you, Nobunaga-san.

[Jo @SEPfieldPatient]

@SalvMattera @TheAmazins This is absolutely agree with

[Jo @SEPfieldPatient]

@tylerblack32 Tyler, you describe what medical training should be. Javeed describes pretty much the only paradigm I have ever observed as a patient and observed socially amongst my doctor friends.

[Danielle Beckman @DaniBeckman]

@WIRED Patients deserve explanations grounded in biology, not vague buzzwords....

[Natalie Grace Alford @NatalieGABand]

That Wired article is written for able bodied people who know of Long Covid, but want reassurance that:
a) That person they haven’t seen in a while will get better.
b) To get cash from LC sufferers for bogus treatments
c) Remind people with LC that we are probably making it up

[Jo @SEPfieldPatient]

@TheAmazins @SalvMattera I do not, and never have identified as having ME or LC. I have been "very ME adjacent". I follow the research. But I have many other rare or "complex" and intersecting issues and positive thinking has never ever helped any of it.

[Jo @SEPfieldPatient]

@TheAmazins @SalvMattera In particular adequate cortisol is not just good for having enough energy to DO things... it's bloody amazing for mood. Now when I get teary, whiny or sad my family know to ask "Overdue for cortisol?" And I reliably am

Our cultural ideas about cortisol are somewhat confused

[Jo @SEPfieldPatient]

@AndrewMeffan @subversivepsych Rarely had the same problems with dentists as doctors and nurses (and physiotherapists)… at 6-7yrs old I notoriously took myself to the dentist after school (in a small town). Mum assumed I hadn’t, went searching & eventually found me literally asleep in the chair, mouth open.