SEP field patient

[SEP field patient @SEPfieldPatient]

@Lammyisback @WoollerEmma And yet it’s so easy to do the polite version of this & satisfy their need for clarity while not (quite so) actively antagonizing the patient:

PCP: can I note down when that was diagnosed / by whom?

This works for any diagnosis…why choose to be condescending & antagonistic?

[am⁷ ⊙⊝⊜ @inadazeforever]

@Lammyisback i had a psych provider do that to me about my cerebral palsy? like thats a thing people self diagnose??? he then went “well you don’t look like it” sir we’re on a zoom meeting

[Donald Thomas, MD @lupuscyclopedia]

Many to most rheumatologists do not realize this, but there have now been multiple cohorts demonstrating that most #Sjogrens #SjD patients present with non-sicca sxs. Dr Ghaith Noaiseh said in his talk: “sicca is the least Sjogrens thing about Sjogrens” @SjogrensOrg @janetchurch @KatHammSF @ACRheum #ACR26 #ACRambassador

[ArianeK 💜 #Care4Complex (she/her) @arianek]

Dryness often comes late, and unless severe is the least of #Sjogrens patients' worries. It's the SFN (sensory/neuralgias + weakness), severe Dysautonomia/POTS, GI dysmotility, arthritis, kidney and lung issues, and crushing life stealing fatigue that are ruining our lives.

[Emily Johnson (is on Mastadon and Bsky) @emily_rj]

As a Palliative patient, I will die on the hill that Palliative and Hospice patients are worthy of protection from avoidable infections wrecking remaining quality of life because clinicians don’t mask

It’s no longer just an idiom, with so many nosocomial infections fatalities

[Manuel Ruiz-Pablos @manruipa]

Yesterday, I shared a thread about something fascinating: patients with genetic autoinflammatory diseases report flare triggers remarkably similar to those experienced by people with ME/CFS and Long COVID, including stress, exertion, and poor sleep.

But triggering a flare is not the same as causing a disease.

In my latest Substack article, I explore whether persistent immune activation could explain why relatively small triggers lead to severe exacerbations, and why patients may return to their chronically altered baseline rather than fully recover.

Read the full article and subscribe for free to follow my latest research reflections:

https://t.co/ZKVwViM1Hk

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

Its #MedSafetyWeek & ~5.5 years since my adverse COVID vaccine reaction that caused multiple permanent disabilities, currently somewhat manageable with a ~35 pills/d cocktail

I have seemingly some of the most common post-vac sequelae yet these are still not officially recognised

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

Another lovely review, so glad Ekin is happy with the service! She was my first client from her country too!

If you want help understanding "gifts" chronic illness brings like ME, POTS, MCAS, hydration, blood sugar issues, etc, you can book here: https://t.co/Qt9pAT4eQp

[SEP field patient @SEPfieldPatient]

@JulianAndrew63 @noplaceforsheep He is absolutely not the worst. Most disappointing, pathetic, etc… yes that.

[BittersweetFigs @BittersweetFigs]

@angryhacademic Thank you for your tireless work and valuable insights. It is researchers like you that are incrementally moving the needle, and giving people like me hope. Millions of people with invisible illness finally feel seen, and our experience valididated in physiological science.

[Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic]

Latest paper:
Hypothesis: Myalgic Encephalomyelitis (ME) as a Mast Cell Activation Disorder (MCAD)
https://t.co/xpgqGc6gtQ

This is a long paper because I wanted to "set the scene" so to speak and also cover anticipated and valid critiques. A wee summary below 🧵

[Thomas Massie @RepThomasMassie]

Tonight’s outcome isn’t about placing faith in Democrats or socialist principles; it’s about holding Republicans accountable for betraying their promises.

All Republicans had to do was:

1. put Americans First
2. not start another war
3. prosecute sex traffickers

[SEP field patient @SEPfieldPatient]

@MojoRizen My deepest condolences to you and Madison, and everyone who loved Tina.

[SEP field patient @SEPfieldPatient]

@gymrat_bookworm @bschermd That ketosis is an optimal metabolic state for some people does not preclude that it really doesn’t suit other people. It should, at this point, be abundantly clearly that there is not in fact a one-diet-suits-all solution.

[SEP field patient @SEPfieldPatient]

@gymrat_bookworm @bschermd I have a primary immune deficiency, multiple autoimmune diseases, a family member on immunotherapy for neuropsychiatric illness. Of course people should have proper immunological work ups. This does preclude the actual ketosis being really really good for some people.

[SEP field patient @SEPfieldPatient]

@gymrat_bookworm @bschermd As in function not running for exercise. I can’t even walk for exercise on carbs though.

[SEP field patient @SEPfieldPatient]

@gymrat_bookworm @bschermd I can tell you that for me it IS the ketosis that matters. Doesn’t mean this is true of everyone. I run profoundly better on ketones.

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

🚨 Our new paper on #EDS/HSD, #MCAS and #dysautonomia as risk factors for adverse events and complications: an invited paper. Thanks to my co-authors, Drs. @KSivakoti89360 and Larry Afrin, for their contribution.

https://t.co/1Up6nUZsqA

[ArianeK 💜 #Care4Complex (she/her) @arianek]

I am SO SICK of trying to negotiate with medical professionals (especially dentists!!!) about wearing respirators. I shouldn’t have to risk what is left of my health and life TO GET NECESSARY DENTAL WORK. My teeth hurt. It’s just a mask. Grow the fuck up!

[SEP field patient @SEPfieldPatient]

Well, that & you have to deny any Neuropsych issues in order to get your physical symptoms investigated at all. Otherwise you’ll just be bounced to a Psychiatrist for your lupus. Who might try to get you to “make the rheumatologist treat you better” (but not wade in themselves)

[Brain Inflammation Collaborative @BrainInflCollab]

Theme #3: Under-eliciting by docs, under-reporting by patients (stigma fears).

Some clinicians report never or rarely asking about their patients' mental health symptoms.