Tess Falor, Ph.D. | @RemissionBiome
@tessfalor
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🚀Space physicist➡️ #MECFS researcher🧪 Founder - Renegade Research @renegaderes - RemissionBiome @remissionbiome ✨Serendipity Meets Preparation✨
Denver, CO
Joined January 2021
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This is what I was excited about yesterday. 🥳
Exciting news! We got
@tessfalor
’s single-cell immune profiling data back from
@imyoohealth
. There's a clear signature of gene expression changes in CD14 monocytes during the AmoxiClav & for months afterwards!
Here's one example, but there are many more genes affected.
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Last night my husband asked why the labor shortage. I said, "hello? Long covid" & told him stats. He didn't believe & said that if the stats are right we would know >10 with it IRL. I know 2. Are ppl just not talking about it or don't know they have it?
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Raise your hand if you've been disbelieved, gaslit, humiliated
✋ For 18 yrs
"Your labs are normal. There's nothing wrong with you." "You look healthy. There's nothing wrong with you." "Why do you keep coming in? There's nothing wrong with you." "It's impossible to have that…
@TrueMECFS
@tessfalor
What needs validation are the thousands upon thousands of patients who suffer daily and miss out on life, opportunities and deal with the the humiliation of outsiders looking looking for proof of that suffering because there's no blood pouring out. 1/
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I just looked up a dr on here & fell into an alternate universe. Everyone was laughing about
#longcovid
& saying it's just hysteria. I know a lot of people just aren't aware of it, but I'm actually surprised by how many MDs are openly mocking it. I guess I'm in a Twitter bubble.
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I just saw a post on Facebook about having anxiety and racing heart after Covid. She said that it was due to "mass hysteria" and "mainstream media pushing a fear narrative." Should I tell her it's dysautonomia and have a bunch of people jump on me about spreading fear? 😬🤦♀️
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An MD I know is looking for a new job. I told her she should specialize in ME/CFS & Long Covid, & that I could teach her more in 1 hr than 95% of drs know. 😆
She said that she has never heard of ME/CFS. 🤯
Now she asked me for papers related to Long Covid & exercise. Input?
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😭 I never wanted a career in medicine. I hated health class in high school. I would get light headed just from hearing the teacher mention anatomy.
I loved SPACE & wanted to be an 👩🚀
But when I felt like I was nearly dying & was being told there was nothing wrong with me,…
The degree to which
#MECFS
patients are engaged with the intricate science of their disease is, in large part, a direct result of institutional and medical neglect and a trauma response.
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I had a meeting with someone yesterday who recently had POTS go into complete remission after taking antibiotics.
Her cardiologist said it's known it can happen and is published. I'll have to search in the literature for that!
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I met w/ someone new on Wed. I told her I have HSD & mentioned EDS. She said, "my friend's daughter *thinks* she has that, along with like *10* other things!" I said, "it's likely she does..." She cut me off & said, "but, I think she..." I cut her off. "No buts. Believe her."
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Are you wondering what the trending hashtag
#TheAcidTest
is?
#TheAcidTest
is a worldwide patient-led
#LongCovid
#MECFS
#VaccineInjured
project using at-home devices, like GlucoRx & Edge, to measure lactate at waking & 1 hr after breakfast
Story in 🧵
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Yesterday I overhead people complaining about a woman languishing at work & how they had to pick up slack for her. She has worked there for 30 yrs. At 1st I laughed along, then realized, "what if she has a chronic illness?" I bet there's lots of people just trying to hang on.
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I have so many questions about
#MECFS
#LongCovid
#microclots
#teamclots
#MEspine
#Abilify
#EDS
#HSD
but can't keep track of them/remember them when I want to ask, so going to collect them here...for myself, and in case anyone in the
#NEISvoid
finds them and has input.
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#IIMEC15
Dr Bhupesh Prusty
@BhupeshPrusty
Herpesvirus reactivation as a trigger for
mitochondrial dysfunction in ME/CFS
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"Applying the serum from ME/CFS patients to cultured microglial cells caused the microglial cells to erupt into activity & spew out free radicals and produce iNOS (nitric oxide) – an inflammatory & neurodegenerative form of nitric oxide. Meanwhile, the serum from the healthy…
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#TheLactateTest
BIG NEWS!
@PutrinoLab
has joined the team & offered to cover shipping!! We're all set for getting priority shipping so that people in the US will have their devices in hand early next week. Thank to everyone who contributed. This community is amazing. 🥹
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🚨🚨🚨REMISSIONBIOME UPDATE🚨🚨🚨
I'm having an event. Not yet a "colors are brighter" full experience like Tamara and I had, but there is definitely something going on.
I've gone from full body pain & body feeling like lead this morning to my body feeling light, more energy,…
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One of my friends, who has
#MECFS
, just created this blog about analyzing her personal health data. She found some interesting trends! I'm going to do a similar analysis with my own data for comparison and will report back. Who else is into N=1 science?
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Heading home from the Bay area feeling hopeful about ME/CFS research.
I was patient
#1
for a new study in Ron Davis's lab. I'll share more when they start recruiting widely in Jan.
Then today I met with Rob Phair to share ideas. He is brilliant & really cares about patients
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I saw a 🧵 about avoiding crashing & it made me ANGRY 🤣
I have a 5 yr old! Pacing is a privilege. One thing that stresses me out most is being too rigid/perfectionist & totally avoiding crashes would require that (cue vicious circle)
It's HARD. What are EASY ways to start?…
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"The role of the gut microbiome in causing Alzheimer's disease has finally been confirmed.
Using gut microbiota transplants, an international team of researchers has shown memory impairments in humans with Alzheimer's can be passed on to young, healthy rats."
HT
@KOsnp
…
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For my friends IRL who started following me recently:
I didn't know what
#MECFS
was until the end of 2020. I had heard of Chronic Fatigue Syndrome, but didn't actually know anything about it & assumed it was a bs Dx. It's not. Many biological abnormalities have been found.
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4 years ago I was working on the propulsion system of Artemis I in this building at
@NASAKennedy
Today I ...
1) Worked with
@IsabelRamirezRD
& two researchers to devise a new (& super exciting!)
#LongCovid
&
#MECFS
research study. 👩🔬
2) Got an update on the plans to build &…
The Orion crew and service modules for the
#Artemis
II mission were joined together at
@NASAKennedy
! These two major components of Orion will fly the Artemis II crew on a mission around the Moon and bring them home safely. More:
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Feeling all the things right now
Sad & grieving for specific people, for all the people with
#MECFS
who haven't been helped for decades, for the kids younger than my son who have
#longCOVID
. There's so much suffering in the world. 😭
But also determined to make a difference.…
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We finished reviewing the first 250 applications for
@remissionbiome
! 50 people will work together as a self-experimenting community. Finalists have been notified. 🥳
@IsabelRamirezRD
@chydorina
@mervetepePhD
@KatBoniface
@RenegadeRes
🙌
We're going to have an amazing group.…
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I just unsubscribed from a NASA space physics funding email list. Bittersweet.
I've been getting emails from them daily that remind me about all the amazing opportunities I missed out on due to being sick.
It's freeing to decide to 100% focus on helping
#pwME
. (I've said this…
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This Reddit🧵makes me 😢😡
I found AMAZING drs in 2021 who ordered tests that explained my Sx, after 15 yrs of Drs like that blowing me off
As a scientist it's wild to see them posting things like, "all the tests that could be done were done" (no, they weren't) & "random 🦓 s…
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My takeaway from the conference:
We might not have a diagnostic biomarker yet, but holy @#$& how can anyone deny the biological abnormalities in
#MECFS
?
We still have to understand how they all fit together, but seriously... There's no denying it. & no, it's NOT deconditioning…
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Believe patients.
I've said this many times to practitioners, but today this is for fellow patients.
If someone tells me they had a remission, I believe them. If they say that something didn't work for them, I believe them. These anecdotes are important.
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I'm in Cambridge for the
@Invest_in_ME
#IIMEC15
conference tomorrow
@IsabelRamirezRD
& I will be live Tweeting the talks
We're grateful to the community for making it possible for us to attend! 🙏
If you DM me, I probably won't reply until I'm home on the 5th
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We've gotten 37 emails since this article came out
Many are from people who also had remission events after antibiotics/probiotics who say, "It's not just me!?! I thought I was the only one who had this wild experience!"
I'll never forget when
@chydorina
& I realized that we…
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Did anyone watch the Netflix show "Diagnosis"? I got 😠 with the bs diagnoses in many of the stories. One was Lashay, who got diagnosed with rumination syndrome (a "rare behavioral problem" according to Johns Hopkins). Turns out she actually had nutcracker syndrome.
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I'm excited that I've been nominated by
@patientled
to be a patient reviewer for the DoD Peer Reviewed Medical Research Program. They will be funding
#MECFS
research!
Please share w/
#MECFS
researchers. Letters of intent are due in mid-April
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"A common symptom for me is the need to get work done, but I just don’t want to and I cannot start. I would often describe it as “difficulty getting going today.” To test the connection, I tried a Zyrtec and set a timer for when it would likely be kicking in. Sure enough, the…
I wrote on my blog about OCD, ADHD, and the MCAS connection:
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3 days until I head to Stanford! I'm going to get to meet one of my favorite Twitter friends, get coffee with one of my favorite
#MECFS
researchers to discuss
#remissionbiome
hypotheses, & get a bunch of testing done for 2 interesting ME studies. 🤩
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We have an Emmy nominated editor, producer, & location crew who are enthusiastic to create a
@remissionbiome
documentary!
It will be about RB &
#Renegade50
w/ larger goal of raising awareness of
#MECFS
&
#LongCovid
How to get funding? Are there grants for projects like this?
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I'm starting to feel better from acute COVID, but I'm still doing
#TheRestTest
.
That's usually my first recommendation when someone gets acute COVID.
What are your recommendations for avoiding
#LongCovid
?
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During my 2009
@remissionbiome
event, I was shocked to realize how sick I had really been. I had gotten so used to it that I didn't even know how bad it was until it went away.
I started to think that EVERYONE was probably actually sick, but was just used to it.
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"I'm optimistic...we're posed for a breakthrough. I think this disease is curable."
"I've talked to patients who have spontaneously gotten over it after being sick for years"
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I asked Jarred Younger about PET testing for neuroinflammation, since I've seen a lot of discussion of it. He said it was OK to Tweet his answer: "The scans haven’t made their way into clinical practice yet anywhere in the world." 1/
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A few months ago I stayed up all night trying to help someone. Then donated to his GoFundMe, got a bunch of other people to donate, & reached out offering to help him with Long COVID. Then I offered to send him FREE supplements via a friend in his country.
I have receipts.
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Fibronectin is indeed linked to A LOT of the issues found in
#MECFS
and
#LongCOVID
(Figure showing some of what fibronectin can do)
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@ChrisPalmerMD
@hannahba94
Follow
@BhupeshPrusty
In this paper they took serum from ME/CFS patients, put it with healthy cells, & it caused the healthy cell's mitochondria to fragment + those cells became resistant to certain viruses! Pretty wild
We will announce a biomarker for
#MECFS
and
#LongCovid
very soon. A very interesting piece of the puzzle to unfold in coming weeks. Knowingly I did not use the word 'Novel Biomarker' as a lot is known about it and that is actually a very good news. Fingers crossed!
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Today has been fucking emotional
- Waking up to a Facebook memory describing how sick I used to be & gratitude for health
- $295k in funding for
@remissionbiome
that will directly help more than 50
#pwME
&
#LongCOVID
, which will then exponentially help future participants
1/3
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Just met with a researcher, who is an expert on the microbiome &
#MECFS
, about
@chydorina
& my
#remissionbiome
self-experiment.
We're getting close. Just waiting for a few more tests (that companies are providing to us for free! 🥳) & to finalize our hypotheses & protocol.
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I spent 17 years reading medical papers, trying to figure out what was wrong w/me & understand my sudden remission in 2009, but I didn't come across hEDS/HSD or
#MECFS
until fall 2020
Since learning so much about them, I find myself assuming that everyone knows, but...
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"We find the disease burden of
#MECFS
is 2x that of HIV/AIDS & over half that of breast cancer. We also find that ME/CFS is more underfunded w/respect to burden than any disease in NIH's analysis of funding & disease burden"
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Can we do this in
#MECFS
please?
@cstroeckw
,
@DaniBeckman
is my pick to get into the field. :)
Danielle, do you have any interest in studying ME/CFS?
What does the beginning of neuroinflammation in
#Alzheimer
's look like? Microglia are everywhere (🟢IBA1), but activated ones can be observed when combined with the HLA-Dr marker (🔴). This response is localized in areas with a high density of neurons (🔵NeuN).
@zeiss_micro
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Don't know what
#TheAcidTest
is?
It's a community science project using fingerprick lactate devices measuring AT REST 1st thing in the morning & then an hr after breakfast
Results were collected via a survey from
@sunsopeningband
8 mmol/L is wild. Graph is normal rest values
Fun fact for folks keeping track of their lactates at home: 8 mmol/L is a criterion for maximal exertion on a cardiopulmonary exercise test. Judging from some of your measurements, you’re already exerting at that level just getting out of bed to take your first test.
#TheAcidTest
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72% had improvement on IVIG! Who has tried it?
Check out results on IMMUNOGLOBULIN in this thread -- one of the top-most promising treatments from my
#TREATME
survey.
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I'm home from the hospital after getting an artificial disc replacement surgery yesterday.
Recovery is going ok so far. Yay to not have spinal cord compression anymore!
🤞 that I get improvement in
#MECFS
symptoms, like in the Rowe paper.
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I've still been thinking about this
#MECFS
#LongCovid
subgroup graph presented by Wenzhong Xiao at
#MeLcFladLisbon
based on survey data from
@organichemusic
.
Based on your symptoms, which group would you most fit with? (Poll in thread.) Group 1 for me.
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Update: she took it well! 🤯🥳 She said it was timely because all 6 people in her family have it now, so she will keep it in mind for all of them.
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What does hope in chronic illness mean to you? Do you think that hope and acceptance are mutually exclusive? For me, hope without acceptance, seems to leech my energy. Not living in the present. But, no hope, makes life seem blase. It's hard for me to describe.
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I have the contact info of this woman who I met with. Besides telling me that someone who likely has EDS is a hypochondriac, she was super sweet. I'm going to ask her to pass my contact info to her friend's daughter.
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I'm having trouble sleeping. I keep thinking about how much life I've missed due to
#MECFS
& how each time I get a baseline increase I think, "This is it. I can live the life I want to live again!", but then the cycle repeats. I crash. I get disappointed. For 19 years.
@OtrPat
@yeld_tamsin
@chydorina
@remissionbiome
@IsabelRamirezRD
🤞
(Me at 6 and during a triathlon a year after my 2009 remission)
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Do providers not realize that saying, "Good news! Your results are normal!" is a terrible way to present results to an undiagnosed patient? Especially someone who they know has been searching for yrs for answers. Is this a reflection of how medical training doesn't prep for 🦓?
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This woman who possibly has EDS is local. This is how I'm feeling about getting her in to my amazing local providers. I have 4 MDs, 2 physical therapists, & 1 chiropractor who know about EDS. And one of my PTs has hEDS herself, so knows even more providers who can help.
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He started harassing her & doing other concerning things online before she sent them to him, so I stopped talking to him. This was all months ago and all of a sudden now he is saying that I scammed him and am doxing him. 🤦♀️ Ahhhh... sometimes the internet really sucks.
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I just decided I'm also going to personally reach out to some of them & ask them to share
#MillionsMissing
info. Some have 100s of 1000s of followers. One has 600k. 🤮 (nervous, but it doesn't hurt to ask, right?) I should have done this a long time ago.
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I avoided Twitter for a long time. Interactions seemed snarky & aggressive. Finding
#neisvoid
#pwME
#MECFS
#LongCovid
etc changed that. It feels like a welcoming place now. Sharing cutting edge science and ideas. Community, support, friendships. ❤ Thank you all. 🙏
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For 16 yrs, I thought I procrastinated w/aerospace work. It was a struggle to think when I did it. When studying medical research on my phone (for fun), my 🧠 would work better. Turns out I was always lounging or laying down when doing the fun stuff. Orthostatic intolerance. 🤦♀️
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"These findings are important because they show for the first time that there is an antiviral activity in the serum of patients with ME/CFS that is tightly associated with an activity that fragments the mitochondrial network and decreases cellular energy (ATP) production."
@ales_frost
@ChrisPalmerMD
@hannahba94
@BhupeshPrusty
This is a summary of the study by
@MEAssociation
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#RemissionBiomeUpdate
@remissionbiome
I keep forgetting to post updates, because most days I'm in remission! I don't think to post every day saying, "I'm having another good day".
I've had some bad days, but they are like "normal" bad days that healthy people have.
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I went for a short, slow, hike yesterday & kept my HR from getting too high. It felt good & I still feel good this morning, but post-exertional malaise (PEM) can hit up to 72 hrs after exertion. That's part of why it took 15 yrs for me to connect my exertion & crashes. So, 🤞
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This is one of my favorite
#MECFS
papers
I think that many different roads lead to the same place - neuroinflammation.
People will require different interventions, based on underlying issues, but I think many will benefit from lowering neuroinflammation
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When I was moderate/severe, it was like my (body) battery was at 2%. I would go into power-saving mode. I would try to plug in, but my battery still would discharge faster than it could charge ... unless I turned off all the apps & put it down so it could slowly gain more charge…
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#IIMEC15
Dr David Systrom
ME/CFS and Long COVID: Insights from Invasive
Cardiopulmonary Exercise Testing
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I'm working on a thread about the overlap between
#MECFS
& post-spaceflight physiology in 👩🏿🚀🧑🏾🚀 w/
@cstroeckw
&
@cuboidalhug
I'm going to use this thread to gather references. Please share any you have, especially for dysautonomia & viral reactivation!
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How do you build a work culture & organizational structure that is specifically for people with chronic illness?
This is something that
@chydorina
& I have thought about since the beginning of
@remissionbiome
.
I would love to hear your ideas.
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I just heard from an OG
#MECFS
clinician that
@remissionbiome
type events have been well known since the 90s!
He said there's a paper where 50% of
#pwME
improved with antibiotics. I'm trying to track it down.
@chydorina
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The 1st of the
@remissionbiome
#Renegade50
will be starting AmoxiClav this weekend!! 🎉
I just ordered this gong to be delivered to him tomorrow from Amazon Germany to kick off the party. 🤣
I 🫶 our rogue band of pirates. 🏴☠️
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#IIMEC15
is over
Thanks again to everyone who donated so we could come here. It was fantastic.
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#MECFS
can look like depression from the outside, especially if the person with it is content.
Not having the energy to do something can look like not having the motivation to do it. Contentment can look like apathy.
Thinking about contentment ...
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I haven't been on here much the past week, because I was up in Whistler, BC hanging out with
@chydorina
in person. I wondered if it was going to feel different being face-to-face, but it didn't. It just felt like hanging out with a longtime friend. :)
We made a lot of progress!…
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When people follow me, I try to follow back if I see
#MECFS
#LongCovid
#hEDS
or related conditions in their bio. I want to follow other patients, caregivers, researchers, etc who really care about these conditions.
If I don't follow you, but you Tweet about those conditions, lmk
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For people who don't know where the trending hashtag
#TheAcidTest
came from. (Please correct me if I'm wrong about any of this)
@Vickyvdtogt
, a
#LongCovid
patient, did self-experimentation, found out she had high lactatate, wrote a hypothesis paper & recently published it! 👏…
I didn’t really go into it that much before.. but these readings were the first readings from all of the tests (many!) I had done up until that point that showed that something was seriously off.
It felt cathartic.
#LongCovid
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Feb 8, 2009. I thought I was dying. I was in unbelievable pain everywhere. I couldn't stand up without feeling like I was going to pass out. I could barely remember what had happened a few minutes before. I felt like my battery was at 1%. Every cell in my body was out of energy.
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All of you realize what a big deal this is, right? 3 days!
@chydorina
's 2019 remission: "I went from being in a dark room, headphones on, not moving in bed, to out on my patio, hat came off, headphones came off. I went running outside & did angels on the grass"
Mine in 2009:…
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#pwME
what are your top 3-5 low hanging fruits for helping your Sx? (Low cost/easy to implement)
Mine:
1. Trying to stay w/in my energy envelope
2. Posture -
3. Low Dose Abilify (harder to implement... Need Rx, but easy & low $ w/my insurance)
4.…
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I didn't know about
#MECFS
until Oct 2020, so I've missed so many interesting results, even though I've been reading a lot the past 2 yrs. What are the most mind-blowing papers that have come out? This
@BhupeshPrusty
one is up there for me.
"These findings are important because they show for the first time that there is an antiviral activity in the serum of patients with ME/CFS that is tightly associated with an activity that fragments the mitochondrial network and decreases cellular energy (ATP) production."
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I ended up looking at some of Leslie Simpson's work last night. He first suggested that less deformable red blood cells could lead to symptoms of ME in 1986! It was replicated in 2019 in
#MECFS
&
#LongCOVID
in 2021
@CaroleBruce17
Les Simpson getting forgotten in the final section 1989? 1997? for his work on red blood cells. So much there that was learnt over 30 years ago.
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@KyleMcnease
@sentientsixp
@dbdugger
Fyi for patients in the US, if your healthcare provider won't order, you can't get an appt, you don't want to go in because you've been gaslit, etc., you can order this lymphocyte panel yourself for $166
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We're on the train headed to Barcelona to an appt with one of the top
#MESpine
neurosurgeons in the world.
Many of you will understand what I'm feeling ... "Yay! I'm having bad symptoms today! 🎉 The doctor will get to see what it's like." 😆 I'm not actually in a full crash,…
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Are there any social workers, lawyers, etc. who specialize in
#MECFS
#LongCovid
disability benefits? Or anyone willing to learn?
I imagine someone who is the go-to for the community, aware of how to have the best chance of getting benefits specifically for these conditions -…
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Although it's gutting, I wish that everyone out there understood that there are millions of people out there going through this
[TW: story about severe ME/CFS]
Some time ago, a person with severe
#MECFS
requested that I visit with them. It has been a while since I was there and I’m still working through everything I heard and saw that day. This person had been unwell for many years and their (1/)
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What am I feeling? I can't find the word. It's not depression or apathy, boredom or ennui. I'm surrounded by things that I WANT to do, but don't have the energy.
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@Be_Kinderr
💯 I had no idea what
#MECFS
was until 2 years ago. I had heard of Chronic Fatigue Syndrome, but like many people, assumed that the main symptom is fatigue. I had NO IDEA how bad it really is. If someone would have told me I had CFS back then, I would have just rolled my eyes.
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I've met a lot of people recently who don't know about all of the comorbities that go with hEDS/HSD or don't even know their hypermobility might matter, so here's my quarterly public service announcement
"From chaos ... Order"
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I've been posting about opportunities to participate in
#MECFS
and
#LongCOVID
research as I learn about them on the
#MECFS2023
meeting.
Collecting all of them in this thread
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I was told many times that my Sx were psychosomatic. Nope. CSF leak.
For any providers reading this. If you have a patient w/Sx that fit w/conditions on this figure, please investigate further rather than assuming psychosomatic
We don't understand all of the pathophysiology…
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Summary of hypothesis:
#MECFS
starts with viral infection, leads to mitochondrial dysfunction in localized cell
viral activation reaches lymphoid tissue (didn't quite hear this part) - showed bone marrow, spleen, MALT
depletion of natural IgM
chronic inflammation, increased…
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What do you think you would you be doing right now if you never got sick?
#MECFS
#LongCovid
#NEISvoid
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14 yrs ago I had the wildest experience of my life - spontaneous remission from severe illness. Tomorrow,
@chydorina
(who also experienced this) & I are perturbing our systems to try to trigger remission & get a baseline increase.
[Checklist to save cognitive energy tomorrow]
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Feeling broken. I "sat in on" (via the phone) the worst doctor appointment of my life today. She wasn't just dismissive. She was outright hostile. For no reason. First I was 💔 & 🤬 for my friend. Now a few hours later, just broken. Doctors, please just say, "I don't know."
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I think
@RenzPolster
's work is some of the most important in the
#MECFS
world, bringing together results in multiple fields. This 🧵is based on his 🤯
@healthrising
comment
"This is another very important piece of work! We may finally be getting at the core of ME/CFS."
1/17
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I gave the first lightning talk of the meeting. Trying to explain
@remissionbiome
in 2 minutes with 1 slide was 😅, but I'm grateful for the opportunity.
(I'm also glad that I did it first thing so that I can now actually pay attention to the talks the next 3 days. 😆)
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In Barcelona doing Cone Beam CT (CBCT) to look for Craniocervical Instability (
#CCI
) + prone lumbar MRI & evoked potentials for
#TetheredCord
#MECFS
#MEspine
#GreetingsFromTheWayside
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I'm in my surgeon's office. He is the best dr I have ever met. Compassionate, listens, believes me, etc. And yet, my heart is pounding through my chest. Thoughts are racing through my head that I need to have an explanation for why I have a headache today. Medical trauma is real.
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