It'sME(Jaime) Profile picture
Director of Sci & Med Outreach, #MEAction Consultant researcher, Stanford U. #ME, #EDS, #POTS I work for several employers, even you! Views my own
#LongHauler for 24 Years - #MECFS G93.3 Profile picture 1 added to My Authors
May 6 6 tweets 2 min read
So 2020-22 has opened a lot of doors for folks in the ME community. Overall, this is great!

AND it's opened the door to charlatans, tokenistic participation, patient-blaming & ableism, cutesy-app designers & folks clueless about chronic complex disease presented as experts. 🧵 People with #LongCOVID who are new to the space may be unaware how hard #pwME have worked to eradicate people of bad faith from our research, clinical, and advocacy spaces. We've developed a reputation for it: #pwME don't take yr sh!t.
Apr 16 23 tweets 5 min read
Anybody remember when, in 2016, #MEAction put together this community request to help respond to the @NIH 's RFI on ME?

I was pretty new to the world of advocacy. A long, thoughful 🧵(1/)

meaction.net/2016/06/18/tak… That summer, I went to the Johns Hopkins Summer Epidemiology Seminar; had a great prof I still talk to now & again.

Put the survey together (with the help of Paige) and we got 1800+ responses to questions around patient research priorities in ME/CFS. (2/)
Mar 27 14 tweets 2 min read
Given the number of questions on this one, an elaboration. ITT (insulin tolerance test) is often mistaken for a GTT (glucose tolerance test). They are different. You might even say they are opposite!

GTT tests your response to high glucose.

ITT tests your response to low glucose.
Mar 27 27 tweets 7 min read
THREAD #2:

Neuro diseases like ME/CFS may involve hyperexcitability. Hyperexcitability of the neural network can occur after brain injury or degeneration & is a key feature in epilepsy, neuropathic pain, & even tinnitus. bioelecmed.biomedcentral.com/articles/10.11… It is well-known that dropping carbohydrates helps reduce the number of seizures in treatment-resistant epilepsy, for example. This is not a theoretical construct, but one for which there is an official and extensively tested diet. hopkinsmedicine.org/neurology_neur…
Mar 27 26 tweets 4 min read
Okay! Let's talk about what lifted me out of the worst crash I've had in years! You may not like it 🙂🙃🙂

An enormous 🧵so get your cuppa and... Background:
I almost always crash in the winter. I hadn't during the pandemic as badly so I was hopeful maybe I'd totally miss it this year? No such luck. From the first to last week of February, I was as badly off as I've ever been.
Feb 14 7 tweets 2 min read
A familiar old chestnut: people who refuse to accept their chronic illness will get well.

A study out of the UK years ago found that those who said their illness was "purely biomedical" didn't get better.

The flaw in reasoning is obvious unless you're a True Believer: (1/2) Severity is correlated to belief in the biomedical nature of the disease.

A combo of not believing their 'thoughts' have THAT much power & knowing they would never do this to themselves.

People with severe presentations are least likely to spontaneously recover. (2/2)
Jan 30 9 tweets 5 min read
So it appears there is some association with positive SARS-CoV-2 pre-op in kids with appendicitis -- including kids who tested positive but were asymptomatic. A story about how this relates to #MECFS (1/6)
#LongCovidKids #LongCOVID

bmcinfectdis.biomedcentral.com/articles/10.11… My own story is that I had LRQ pain and was taken to the ER as a kid. It was baby's first medical gaslighting: they made us wait in the ER for hours, never scanned for anything, said I had probably eaten something bad (like I was 1 instead of 8) and sent me home. (2/6) #MECFS
Jan 28 4 tweets 2 min read
Did we know that Neil Young had post-polio syndrome?

Post-polio syndrome is one of many post-viral complications, & is frequently discussed in ME/CFS literature. Percentage affected by long-term symptoms is similar to #COVID19's #LongCOVID.

me-pedia.org/wiki/Post-poli… Apparently, so did Joni Mitchell?!
Jan 8 4 tweets 1 min read
I have a small piece of good news. Remember this? (1/3) I got the rest of the funding for the pilot from a private donation! (2/3)
Jan 7 7 tweets 4 min read
Glad to be a panelist at Project ECHO on #LongCOVID & #MECFS today! Fruitful convo on #POTS & comorbidities. The big meetings, starting next week, are open to all.
To register for any of the sessions: echo.zoom.us/webinar/regist…

More info below on this 🧵! (1/5) #MedTwitter #MedEd Image Family Health Centers of San Diego, the ECHO Institute, University of Washington, and University of Colorado have collaborated to provide a CDC-funded monthly webinar-style ECHO learning session to rapidly disseminate Post-acute Sequelae of SARS-COV-2 infection (#LongCOVID) (2/5)
Nov 21, 2021 23 tweets 8 min read
The chronic illness community saw it coming and did our best to prepare folks. #MEAction had a coordinated response. But the chronic illness community is not a public health agency, and cannot coordinate a response on the level necessary to educate the public as a whole. (1/7) We're told patients should ensure researchers study #MECFS rather than CDC/NIH ringfencing funding. At the public health level, we were left to do our best to educate about the potential for post-viral chronic complex diseases like #LongCOVID. I'm not sure how many heard. (2/7)
Nov 21, 2021 7 tweets 2 min read
Just had a funny convo with my uncle. "I said you're coming for Thanksgiving and some of my friends asked if you know @davidtuller1?"
"Yes, I know David--"
"He writes about ME"
"Yes --"
"I read one of his articles, about cognitive behavioral therapy.. (1/7) "...and exercise and how they just throw this at ME patients and of course it doesn't help but that National Institutes of Health in UK changed this. Did you know about that?" (2/7)
Nov 10, 2021 8 tweets 8 min read
Someone wrote me an email asking about results for Survey 1/Chapter 1 of the Chronic Illness Survey Adventure! That survey is still open, so I can't respond in detail, but I can tell you a few things about our progress: (1/8) #SC4D #NEISvoid #MECFS #LongCOVID #MCAS #POTS #hEDS We definitely need more healthy controls. Please ask your healthy friends & relatives to take the survey! Each section is taking most people less than 15 minutes so it's very straightforward and really helps our community. (2/8) #SC4D #NEISvoid #MECFS #LongCOVID #MCAS #POTS #hEDS
Nov 10, 2021 12 tweets 5 min read
Survey Section 2 of the Chronic Illness Survey Adventure (#SC4D) is now open! Check your email for your invitation!
Didn’t get your invite? Let me help you troubleshoot right here. (1/9) Did you check spam?
Sometimes mass mailings like this get dumped by your mail client. Qualtrics tries to minimize this in part by sending in small batches, but it doesn’t always fix the issue. Check spam and promotional folders! (2/9)
Nov 9, 2021 6 tweets 1 min read
Acts of Helplessness, by Rumi

Here are the miracle-signs you want: that
you cry through the night and get up at dawn, asking,
that in the absence of what you ask for your day gets dark,
your neck thin as a spindle, that what you give away is all you won, that you sacrifice belongings,
sleep, health, your head, that you often
sit down in a fire like aloes wood, and often go out
to meet a blade like a battered helmet.
When acts of helplessness become habitual,
those are the *signs*.
Nov 9, 2021 11 tweets 4 min read
Today, someone told me that a negative test "proves the person never had COVID" (in ref to #LongCOVID).
Should we list, AGAIN, the reasons why "no + COVID test" is NOT a reason to assume the person didn't have COVID?
yes, yes we should! A🧵(1/9) First, and this may be new to some of you: as Dr. William notes, COVID testing seems like it is not catching some of the newer variants. (2/9)
Sep 27, 2021 6 tweets 4 min read
Now we get to another area of particular interest for me: circadian rhythms and #fatigue. Elizabeth Klerman presenting. (1/5) #sleep How does sleep/circadian rhythms affect various body systems and ultimate effects?
First I've heard of health disparities, here; well done, Klerman. #fatigue #sleep
Sep 27, 2021 4 tweets 2 min read
Dragana Ragulja reports: what actually is cause of death in sleep deprivation?
Loss of life in test animals on Day 10 of sleep deprivation led to dissection and finding of serious increases in ROS in the gut in particular (1/3) Antioxidants specific to the gut can 'rescue' the animals tho. (2/3)
Sep 27, 2021 7 tweets 5 min read
ooooh, I am very interested in this! Pierre Magistretti is discussing the astrocyte-neuron lactate shuttle. I had a long conversation with someone who wrote a review paper on this one. (1/6) #fatigue #neurology Lactate is required for energy for the brain. BUT -- it is not only this but also a signalling molecule for neuroplasticity & neuroprotection. (This idea of lactate being 'neuroprotective' is of particular interest to me.) (2/6) #fatigue #neurology pubmed.ncbi.nlm.nih.gov/21376239/
Sep 27, 2021 9 tweets 6 min read
Now we're up to Ron Davis and the metabolic trap hypothesis for #MECFS: yeast model for the metabolic trap. (1/7) #metabolism #fatigue Tryptophan is largely metabolized by a protein made by an enzyme called IDO-1. A second enzyme, called IDO-2, may be a "more primitive" version of the same enzyme. IDO-1 is substrate-inhibited. (2/7) #metabolism #MECFS
Sep 27, 2021 11 tweets 6 min read
Mark Davis now. He's talking about celiac (severe gluten intolerance/sensitivity). He found that gluten-specific CD4+ T cells were directly associated with the response. (1/6) #fatigue #celiac #autoimmunity Interestingly, they're mentioning elevated KIR+ CD8+ cells in autoimmunity. KIR is typically thought of as a marker for NKCs, & associated with their maturation (me saying this, not M Davis). Intriguing, then, that KIR+ CD8+ cells are associated w/autoimmunity... (2/6) #fatigue