NerdyPtChat

#NerdyPtChat curating tweets by patients swapping research, hypotheses, and thoughts

[Maureen Hanson @DrMaureenHanson]

Our paper on proteins present in plasma from ME/CFS cases vs controls appeared today. Despite a small sample size (20/20) due to the cost of the assays, important new information was obtained about biological disruptions in ME/CFS. https://t.co/TkXucqGgaM

[Hannah Davis @ahandvanish]

@mancunianmedic not everyone. the NIH conference was full of people describing it as post-ICU syndrome. too many others only putting papers out on hospitalized patients, or respiratory symptoms only.

[Hannah Davis @ahandvanish]

Things I wish #LongCOVID researchers knew:

1. Long COVID is *not* post-ICU syndrome.
2. Most LC patients weren't hospitalized.
3. Many LC patients had mild acute cases.
4. Many LC patients never had respiratory issues.
5. Many LC patients never had low oxygen levels.
#MedTwitter

[Jade Barclay 😷🌈♿️MPH MBA @JadeBarclay]

@OdyO11 Addressing overdiagnosis/overtesting has been mainly an economic argument: reduce needless stress and expense.

The economic argument re underdiagnosis/undertreatment is strong. Massive preventable loss of income and expense of disability to patients, healthcare, and nations.

[NerdyPtChat @nerdyptchat]

Interesting! Any folks who can share their experiences?

[davidtuller @davidtuller1]

From an infectious disease colleague: They're hearing anecdotal reports of some long-covid patients feeling improved after vaccination and is wondering if there are reports of ME (or ME/CFS) patients feeling improved after getting covid vaccine?

[NerdyPtChat @nerdyptchat]

Oh also #legal #advocacy #accessibility health care systems #journalism #DisabledinSTEM and so so much more

[NerdyPtChat @nerdyptchat]

As a #NerdyPatient we seem to live in a strange space that straddles #medtwitter #neisvoid #DisabilityTwitter #medscience #medethics #chronicallyill and more. #NerdyPtChat what are your thoughts? Any particular area you are especially nerdy about? #genetics #pharmacology #pt?

[NerdyPtChat @nerdyptchat]

Any #molbio or #immunol Nerds in our #NerdyPtChat amongst #DisabilityTwitter and #chronicillness ?

[aure 🍂🌰 @maureviv]

I think we overestimate how well many physicians understand mRNA vaccines

[NerdyPtChat @nerdyptchat]

Good old "subclinical" measurements

[Charis Hill | they/them | 🇵🇸 😷 @BeingCharisBlog]

[Medical]

We need to talk about the damage caused by refusing to treat symptoms because test results are "within normal ranges."

The mental & emotional impacts of losing functioning are still very real & true even if someone is still within clinically acceptable ranges.

[collagen machine broke @chronicallybeee]

googling “why does my body do this” and the answer is always thyroid disease, autoimmune disease, or connective tissue disorder. rude as hell.

[Joanna No Banana @JoannaNoBanana]

Doctors who get upset at chronically ill patients who do their own research are probably just projecting their own lack of knowledge about the topic.

[NerdyPtChat @nerdyptchat]

Calling out to all informal members of NAP (Nerdy Association of Patients) #NerdyPtChat

Why would a person with chronic headaches and vertigo feel better at higher (above sea level) altitudes? (They notice a difference during a few week of mountain retreat).

[Robert Saunders (aka McMullen) @RobertHMcMullen]

As someone with severe ME/CFS, which often follows acute infection, it’s painful to hear doctors with long covid asking not to be treated the way they have treated people with PVFS & ME/CFS. Please let’s work together to improve research & services for all https://t.co/W97rLMd56H

[oliver @fairyheadds]

#neisvoid i find it odd that doctors blame us for doing our own research when lack of access to healthcare is what creates the need to do our own research.