Tara Foti, PhD MPH
@TaraFotiPhD
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Following
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909
Perinatal health researcher, Adjunct @usfcoph | Former @kpdor Postdoc, @usfcoph PhD, @URMC MPH | Now #disabled #LongCovid #PostVax #MECFS @RemissionBiome #R50
Tampa, FL
Joined April 2012
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Last Seen Profiles
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I'll be headed to Miami to start treatment soon. Our household is spread so thin with two of us (me & 12 y/o) with ME/CFS/LC. Any little bit that you could help would be so appreciated. ❤️
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Day 10 of
#RemissionBiome
acute phase and, practically in an instant, all
#longcovid
#mecfs
sickness symptoms are gone. I feel great - clear head, no pain, energetic. No clue how long it will last, but I’m being present and grateful for each “healthy” moment.
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I went to the dentist over a week ago for the first time in 3 years. I met with several different people and don’t know their roles. The dentist was kind and lovely. He was familiar with long covid and, unsurprisingly, found lots of inflammation. He was very familiar
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I'm mostly in my
#LongCovid
bubble, but when I interact with healthy people it never ceases to amaze me how little they know about what we are experiencing, how shocked they are about our poor quality of life, our limitations, our agony, our loneliness.
Spoke to
@PBS
along with
@edyong209
about how
#LongCovid
is hidden in plain sight — yet is the fastest growing public health crisis in the country, for which there are still zero answers for.
3+ years in, the degree of suffering & QOL is truly unfathomable.
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12 y/o w/ long covid and fairly debilitating POTS has been in school for three full days in a row... which is remarkable for the past two months. What made the difference? A well-informed and compassionate doc who adjusted meds and gave an IV.
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Today I experienced almost 7-1/2 hours of being in a healthy body with a well-functioning mind. My
#RemissionBiome
remission event is ending. What an interesting thing to observe my sickness return.
Day 10 of
#RemissionBiome
acute phase and, practically in an instant, all
#longcovid
#mecfs
sickness symptoms are gone. I feel great - clear head, no pain, energetic. No clue how long it will last, but I’m being present and grateful for each “healthy” moment.
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I used to be an over-planner, over-achiever. I worked on whatever the thing was until I literally dropped. I almost singlehandedly managed holidays, celebrations, kids school, parties, gifts, medical, dental, mental health, entertainment for the family.
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19
233
It’s been over six hours of feeling like a healthy person. No more adrenaline, no more vibrations. But I’ve lived the equivalent of at least two sick days in six hours and am still upright. That’s incredible.
#RemissionBiome
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11
178
This is what I’ve been saying! My life/functioning may look better to some outsiders, but the reality is that there is so much more I no longer attempt. Normal things I don’t even try to do. My life, my world, has gotten so, so, so small.
“Some individuals do experience some recovery over time, but for most recovery is long & arduous… Some people may come back to the clinic & say, ‘I'm doing better,’ — but if you really flesh it out & dig deeper, they didn't do better; they adjusted to a new baseline.”
#LongCovid
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Towards the end of my remission event yesterday, I caught a glimpse of the sunset in the sky. I just stood up and walked outside and took a picture. And then I realized that in two years of being sick, I had never "just stood up and walked outside."
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But they had no idea how much improvement I had to have to make it to/through that appt. Or how I broke down and cried once I was alone. Or how debilitated I was for days to follow. And I wish they did. I wish I had energy to write a letter.
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@biomesight
My kiddo said, “You look like you have more energy.” And I told him, “I feel healthy.” And we hugged and cheered.
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But I have no room on my plate for anything extra. I can barely get through the bare minimum. And I wish they could understand that.
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@biomesight
I’ve worked a lot on my mental health in the past month and have found joy and love and connection, largely through the
#RemissionBiome
community. And right now, this very moment, I feel healthy. I feel energetic. I feel optimistic. And I’m a tiny bit afraid.
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1
120
Two days ago, I felt like a healthy person. Today is brutal. I’ve managed to join the big family for “Thanksgiving” but my pain is severe and my cognitive functioning is poor. I’m here but not here. I’m grateful for everyone but also wish I was home in bed.
#longcovid
#mecfs
Day 10 of
#RemissionBiome
acute phase and, practically in an instant, all
#longcovid
#mecfs
sickness symptoms are gone. I feel great - clear head, no pain, energetic. No clue how long it will last, but I’m being present and grateful for each “healthy” moment.
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The appt was as stressful as I expected. But the really unnecessary part was the 12 times it was restated (to me or to staff) that I hadn’t been in for a cleaning in 3 years. There was no empathy, compassion, understanding that I physically couldn’t have
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Gearing up for the acute phase of
#RemissionBiome
starting tomorrow. Grateful for the wisdom of the people who have developed and tested this protocol and for the community we are building together. Hopeful for any form of remission/baseline improvement from
#LongCovid
&
#MECFS
.
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I’m too tired and brain foggy to keep writing. My youngest asked if I still feel healthy and I shook my head no and cried. He hugged me and said, “When you feel sick, just remember how good you felt. And someday, when this is all over, you’ll be healthy again. Just remember.”
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I’m mostly resting today after my
#RemissionBiome
remission event yesterday. I feel good, great even, but my body says to rest. My youngest has been very sad and anxious lately. He was telling me that he wants to beat his older brother in a video game. 1/n
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Is there an invisible social rule to pretend health problems are not long covid, and is that why a lot of us who are vocal about our long covid are neurodivergent?
I think most people who have developed a new health problem following Covid19 infection (what I would call Long Covid) have decided to pretend it has nothing to do with the virus. That’s the accepted approach and it is seen as rude / anti-social not to do so.
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These moments of normalcy are remarkable. They remind of of what we have lost and what we can regain. They are why we feel grief and loss, hope and optimism, all at the same time. 6/n
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It's not even just that I'm grieving the life that I used to have. I quite literally don't know what to do with myself. I don't know how to make my expectations be so small. Miniscule.
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@biomesight
I posted in our
#RemissionBiome
slack and got love immediately. I called my mom on video to tell her the news. “Mom - I’m having a remission event. I feel healthy!” (for practically the first time in almost two years). We both had tears in our eyes.
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@biomesight
We went outside and sat in the shade, enjoying the sunshine and bright blue sky. I could feel adrenaline coursing through my body. I was vibrating. I took a short video for documentation and just sat for a moment to feel what feeling healthy feels like.
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Just started Nattokinase today and I feel off, don’t quite know how to explain it. Is this probably just an adjustment period? MCAS? Better bloodflow? Is there anything I should know?
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I knew something was strange when I got dressed in jeans, washed up in the sink and put on deodorant. I felt (and still feel) buzzing with energy.
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And, for some reason, people keep telling me that IVs are not recommended when the patient can orally hydrate. I beg to differ. Combine severe POTS with post-exertional malaise and autism/sensory issues and *drinking is hard*! Another reason to not label patients non-compliant
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Reflections on post
#RemissionBiome
(and ketamine infusion) improvements: more brainpower, more than doubled the amount of work I can do (1-2 hours to 6-9 hours/week), can read a bit more, a bit more energy, less frequent and shorter crashes, less sensory overwhelm,
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I’m trying to help my family understand that when I don’t respond is when I need the most help. Just bring me the food and water. Turn off the TV. Turn down the lights. Talk softer. Just make the decisions. Because I can’t at that point. It’s really hard for others to understand.
Talking is one of the hardest things for me when I'm not feeling well.
When I'm totally crashed it feels like my brain hurts when I try to do it.
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I out project-managed my project manager husband at home. And now I watch life happen. I hope to be able to bake a few Christmas cookies (vs. the dozens I used to make). I save energy for a week and a half just to shower.
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If a regular healthy person, in an instant, went from their normal amount of pain to my
#LongCovid
#mecfs
normal amount of pain, they’d call an ambulance and go to the hospital. But for me, it’s my least worrisome symptom.
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I am declining. A couple of weeks ago, I thought I had found a good routine. Now I am crashing from short conversations and new TV shows. I constantly feel a nauseous tingle in my throat - a sign of a crash to come. I run out of brain energy after a couple hours of being awake.
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with Sjogrens, but acknowledged how hard it is to diagnose, especially in FL. I could barely stand for the x-rays. I was shaking with adrenaline and anxiety. I had deep pockets and needed a deep/inflammation cleaning that was traumatic.
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"Boy, could I use some more rest/down time/time off work/sleep, too!" Not like this, bro. I promise.
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@biomesight
And I want to a very dark place, mentally. Within days (with no improvement, only crashing even more), the pain was unbearable and I didn’t think I could live any more. That was just over a month ago.
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My little one keeps checking in - “Do you still feel healthy, Mom?” It has been so agonizing to feel absent from my children’s lives. But I’m not absent. And we are adapting. My children are kind, empathetic and resilient, and we continue to re-adjust.
@biomesight
My kiddo said, “You look like you have more energy.” And I told him, “I feel healthy.” And we hugged and cheered.
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@biomesight
But, just as quickly as they came, they vanished. They more than vanished. They took what little gains I’d ever had and I was worse than I’d been in a long time. Only now, I wasn’t numb any more. My heart was open and I hold no shield from this agony.
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@biomesight
It’s not actually the first time of having a remission, though. I had a short one during the prep phase. It was incredible - I was filled with joy and wonder and love. My pain and brain fog and fatigue were gone for two afternoons in a row.
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Whoever I was mainly with kept reporting that I “had Covid symptoms for a long time” instead of long COVID. She couldn’t understood that I was practically bedridden for almost a year and couldn’t stand for long enough to brush my teeth most days.
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One dose of nattokinase and my toes are noticeably warm in bed. I can’t think of one time in my life when my toes were “noticeably warm”, let alone how chronically cold they’ve been with long covid. So grateful my new doc took the temps of my fingers and toes.
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I am quite literally still paying a price for showering yesterday. But in my mind, I'm mentally planning how to clean the house, how to decorate, baking with the kids, planning a menu. I can't do any of these things. Can I do one thing? A half of a thing?
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(other than from the dentist). They showed me a picture of the back of my teeth and, to be kind, they were not in great shape. I almost gagged/cried and apologized to my hygienist that she had to care for me.
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I don't know how to lay down in my pajamas or sweatpants in my messy lived-in house and greet 9 relatives with no gifts and no decorations and some unknown meal. I don't know how to have no plan and no stress and get rest and feel no guilt all at once.
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that says We Did It! We found balance and joy and we celebrated what we have, even though it feels so small. Minuscule. Because it's all we have.
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Per the
#RemissionBiome
protocol, I collected tubes of urine and a sample for
@biomesight
. I had to stop myself from running up and down the stairs.
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I tensed my muscles so bad during the 2 hour appt that I couldn’t move my shoulders/neck for days. My gums were cut open and bleeding. It’s taken a week to get back to baseline.
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When I was in the bathroom, I looked at myself in the mirror. I looked tired and sad. I whispered, “I love you.” And I cried.
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I don't know. I just know we can't keep postponing life. We can't keep ignoring holidays. We have to find something that suits our life now. Something small. Something that brings joy. Something for us to remember. Something to take a photo of and hang on the wall
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I’m grateful every day that I came across Dr. T and Tess on Twitter. I am generally very skeptical and slow to adopt, but I jumped at the chance to be in
#R50
and my intuition steered me right!
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Truly. A kid going to school. A family playing together. Joy. Hope. Simultaneously small and gigantic all at once.
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and to *really listen to them* when they tell you what is going on, what is hard, etc. Believe me, he'd been drinking as much as he could. And now, not only doing well at school again, but is playing with family in the evenings instead of wiped out in bed recovering from his day.
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I don't know how to make Christmas cookies if I'm not making 6 different gluten-free, dairy-free paleo recipes, matching favorites and desired flavors for each family member.
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Life keeps getting harder and harder, it never slows down. And then my specialists are like, “Did you try putting your feet on a vibration plate?” Ma’am, sir, I am crashing daily just from life. No, I did not try the vibration plate. No, next month will not magically be easier.
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And tonight's whole-family, heart-raising hide-and-seek was a miracle (for us both!). I don't know if I will ever cease to be amazed at how powerful it is to do "normal" things as a family again. Our little moments of joy are palpable.
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I don't know how to host the whole family without an imperfectly perfect house, a decorated tree, a perfected meal, the most thoughtful and customized gifts.
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I realize that while I accept I may not get better, my kids are waiting for the day that I do. The day they come home from school and I meet them at the door, pick them up and swing them around and say all our problems are over - time to get back to life. And it breaks my heart.
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And my youngest said, “Yeah, you have.” He pushed for a moment. “You used to do this and it was my favorite.” he said. “Chase you?” I asked. “Yeah. It’s been so long, I forgot it was my favorite.” 4/n
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A much needed thread on personal experiences with differing quality of healthcare for people with HIV vs. ME/CFS/LC. May we take inspiration from current HIV care/programs/research to help this rapidly growing population of people with disabling conditions.
I have
#HIV
and today is
#WorldAIDSDay
So why am I warning
#plwHIV
about
#MEcfs
?
Because some plwHIV have / will be getting
#longCOVID
.
And about half of those will have the ME version of LC.
As a person w both HIV and ME, and in the interest of patient safety,
🧵
1/n
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I haven’t even attempted to apply for disability benefits because of how arduous and often unsuccessful the process is, let alone the lack of support/knowledge about the process from my MDs.
The knee-jerk assumption that people are faking
#LongCOVID
or
#MECFS
for benefits harms all disabled people.
I don’t know a single person who is riding a benefits gravy-train for being disabled. On the flipside, I do know many who are unable to get adequate gov support. 1/
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Please be careful with any exertion - physical, mental or emotional - if you experience any post-exertional symptom exacerbation. It can be dangerous, damaging, and cause long-term setbacks. Exercise is not safe for everyone, especially in the context of long covid.
Exercise reduces long-term COVID symptoms in young women 🏋️♀️🧠❤️
#ExerciseHeals
#COVID19Recovery
#YoungWomenFitness
#PostCOVID
#MentalHealth
#Neurological
#Health
#StayActive
#COVID
#Health
#PhysicalActivity
@SciReports
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I’m very been feeling ok lately. Pain is better. Function is better. People keep telling me I’m better. But I disagree. I’ve given up key measures of independence and joy - bathing myself, driving, reading, cooking/baking - just to barely rise above status quo
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I grabbed him again and kissed him all over his face and neck. “This part isn’t my favorite.” he said. That’s ok little guy. “It’s MY favorite.” I thought. 5/n
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This is a tough ask, but we are drowning in medical $$ with me and kiddo having long covid (and 2 special needs kids). After >2 years, I finally have a doc to treat my brain, Lyme, and other reactivated infections. Please consider donating and/or sharing.
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22
39
Heading to Miami soon to see a specialist who treats late stage Lyme, long covid, mycotoxins, and dementia. I have a lot of anxiety that the treatment regimen they recommend will be far out of reach financially. They told me to be prepared to spend extended time local to them…
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Rested for hours, took and nap, ate, and feel better now. One thing I’ve noticed since
#RemissionBiome
is that I have not crashed in a long time. I’ve had “take it easy” days and lower HRV days but only one real crash in several months. It’s really remarkable. Huge impact on QOL.
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Worn out from having an early morning MRI (with NeuroQuant) and an hour+ long ME/CFS specialist appt… in preparation for another specialist appt coming up that requires travel. It’s unbelievably exhausting and expensive to have long COVID.
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Today, I got to share my feeling healthy, my remission event, with my family and with the
#R50
, my new friends. I’ve got to experience the joy see in the hearts of people who love me, who are rooting for me.
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When I got sick, I was doing qualitative postdoctoral research on improving healthcare services for individuals with cannabis use in pregnancy and postpartum. I couldn't have imagined at the time that my work would be relevant to ME/CFS, long covid, chronic Lyme, etc.
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He tried to grab my cell phone and run away (frequent tactic). So I jumped up and chased him up the stairs and around the house. I caught up to him on the way back down the stairs and I grabbed him and tickled him. “I got you!” I said. “I’ve improved!” 3/n
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Happy holidays to
@biomesight
! So grateful for the info you provide to understand my
#remissionbiome
baseline and for targeted repopulation during and after antibiotics. 🎄🔔🎁
@biomesight
Thank you so much for the discount to make your testing more accessible for
@remissionbiome
. I discovered certain comorbidities thanks to the test, the doctors took the results seriously and decided to do more testing and I will be able to receive treatment. 🙏
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My physician saying “I believe you” would bring me to my knees and leave me sobbing like a baby. It is unimaginably powerful for people who have been marginalized in health care settings.
"I believe you." -- something I say A LOT. Sometimes, this Is enough to make people cry, because medicine has a bad habit of assuming people "fake" their symptoms.
Have you been accused of (directly/indirectly) "faking it" by your medical team? Please comment.
#AskThePatient
❤️🩹
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@Drewhywhywhy
@remissionbiome
@RemissionBiome
is more than a protocol. We are a community. We love, laugh, support, grieve, and learn. I'm especially grateful for the individualization and the expertise of
@IsabelRamirezRD
, who has checked in on me and met with me regularly since starting abx. ❤️💊🦠🫂
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I don't know how this sounds to healthy people, but one of the best things my husband and I did when I got sick was get separate mattresses and bedframes. Add earplugs and eye mask, and I get as much continuous sleep as possible... without any external movement or noise.
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My 12 y/o had COVID 3/22 and has been unhealthy since. I realized this week, after he was unable to complete a short school tour, that he meets ME/CFS criteria, either moderate or moderate-severe. These new CPET study findings are both important and heart-breaking.
Cardiopulmonary Exercise Testing in Children With Long COVID: A Case-controlled Study
🔥Interesting study, demonstrating that C9 is NOT mild for many children, may even have long-term consequences!😡Sorry, AGAIN, I TOLD YOU SO! PROTECT OUR CHILDREN
#CleanAir
➡️Study:
“May
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What a strange thing, to be blocked by someone who co-developed the RemissionBiome protocol that may be the thing that saves my life, who I have publicly defended on social media. Not trying to play into drama here… just think it reflects poorly on one’s character
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Took 12 y/o to local peds cardiologist today (Dr. Ballal, Tampa, FL). *Highly recommend*. He took over POTS med management, changed meds/doses and added his recommended salt capsules. Gave kiddo a saline infusion and wrote all needed notes for school. What a relief!!!!
My 12 y/o with LC, POTS sees a specialist who doesn't take insurance. Just heard from ped about local ped cardiologists who manage POTS. 12 y/o had a normal echo last year... is it worthwhile to schedule appt with ped cardio? Maybe can get POTS managed through insurance?
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Just updated my medications and supplements spreadsheet and set alarms for each different set of pills and powders throughout the day. Whew, it is a lot. My
#LongCovid
#MECFS
brain could never remember all of this!! 💊🫗⏰🥣
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Based on this scale, I would be “very severe” with short periods of severe. I find this proposed framework to be very valuable with more clear definitions (esp beyond severe) but with some limitations, as others have noted.
@fereshtehjahan1
@JanetDafoe
@DafoeWhitney
@OpenMedF
@azuravesta
@hroest
@SnyderShot
2/
Proposed Framework for Personalized Severity Assessment in ME/CFS to Capture Variation in ME/CFS Severity and Life Impairment across Patients and Time.
from:
#MEcfs
#CFS
#PwME
#SevereME
#SevereMECFS
#SevereCFS
#VerySevereME
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But that he can’t, his brother is better. “Can we improve?” I asked. “No.” he said. “Did my health improve?” I responded. “Yes.” he admitted. “Can you get better at your video game if you try?” I asked. “No.” he responded, with a slight grin. 2/n
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Thank you
@remissionbiome
for allowing us to test a new approach based on science while being accompanied by our respective doctors. I am only in the preparation phase and I already have significant improvement. Thank you for your constant support.
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Happy Holidays and a big thank you to
@nurosym
for their powerful vagus nerve support as an important component of the
#RemissionBiome
protocol. It's always fun to see people wearing the ear clips during our meetings. 👂📎⚡️🔦
@nurosym
thank you for the help to the
@remissionbiome
project. By adding your device our protocol gives us even more possibility of increasing our baseline by stimulating our vagus nerve. Initiatives like this give hope to our community
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My husband came home from the store and came right up to me. “How are you feeling?” he asked with concern. “I’m fading,” I said. That’s what he guessed - my sparkle is gone.
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First, I felt my mind slowing down. Then I kept thinking about taking a nap, so I sat in the recliner.
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How’s my day going so far with ME/CFS (and a bunch of other stuff) and homeschooling my 10 y/o? I’m so glad you asked.
Dragged myself out of bed at 10:25am to say hi to hubby before his first meeting of the day. Minus 5 spoons.
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We've been trying to figure out if I need to treat COVID persistence with anti-virals before treating recurrent, late-stage chronic neurological Lyme disease (reactivated from the COVID booster). First, we tested my SARS-CoV-2 Spike Ab Dilution (2598, down from 3020 in 7/2023).
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Antibiotics and antifungals *again*. Another doctor speech about how these common microbes don’t cause problems for most, but “because I’m symptomatic…” But no one will address the why. No one will say “immunocompromised”. Just another pill, another cream, another mouthwash…
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So much of this
#longcovid
#mecfs
story resonates with my own experiences over the past two years. Thanks
@hortonrachel_
and
@ellbail
for all you contribute to
@remissionbiome
. I am blessed to be a part of
#renegade50
with these very capable and vulnerable folks.
Wanna know more about
#Renegade50
's?
Our own
@hortonrachel_
interviewed with
#Renegade50
participant
@ellbail
for you.
We're so happy to have you in the team Elly. Thank you 💙
@chydorina
@tessfalor
@IsabelRamirezRD
@remissionbiome
@RemissBiomeVids
#RemissionBiome
#MECFS
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I swear I would be sicker, less informed, and more isolated/lonely without Twitter. It is really a lifesaver, in so many ways, for me. Thanks to all of you who have posted valuable info and support on here - it really has made my life better. ❤️
1
0
26
Then my arms got heavy and I had little stabbing pains in my muscles.
1
0
25
I seriously messed up my evening POTS meds and had to stay up for hours hooked up to a blood pressure machine to make sure I didn’t have to go to the hospital. Living with severe cognitive dysfunction from ME/CFS, long COVID, late stage Lyme, POTS etc is so hard.
3
0
24
My physical pain is increasing. My body either feels hot or cold. Small noises are so loud, lights are so bright. I can’t make decisions and often can’t communicate my needs. I think about death a lot (again). I am afraid.
6
0
25
I got up to collect urine samples for
#RemissionBiome
. I could feel my knees and ankles on each stair.
1
0
24
A special thanks to
@tessfalor
and
@IsabelRamirezRD
, who have really changed my life. And thanks to
@hayden_phabib
@Really_Richelle
@KatBoniface
@NovaSupport
and everyone else who are making
@RemissionBiome
what it is (and shaping it into what it will be). 🫂
7
3
24
I realized my fingers and toes were aching and I had a mild headache.
1
0
24
This is a great overview of
@RemissionBiome
. I am fortunate to be a part of this citizen-science project and am hopeful that it will not only help us participants improve our health but also provide information for the many people suffering from
#MECFS
and
#longCOVID
.
A personal intro to
@remissionbiome
for friends, family, and, of course, social media.
#RemissionBiome
#ME
#MECFS
#MyalgicEncephalomyelitis
9
47
143
0
5
22
@tablefor1pls
It's honestly so emotional for me to read messages like this. If we could just remove the judgment and shame, the physical difficulties of these appointments would be so much easier to bear. I hope you are able to get the care you need in the near future. ❤️
1
1
23
I don't know that it moved the needle much on overall functioning scales/scores, but ABSOLUTELY improved my quality of life. And gave me community and hope when I most desperately needed it. ❤️
2
0
23