Isabel Ramirez-Burnett
@IsabelRamirezRD
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NBC-HWC CEO @renegaderes & Todologa @remissionbiome patient/Caregiver-led, decentralized, human-centered research. #MECFS #longcovid #IACI - views are my own!
Rhode Island, USA
Joined January 2012
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1.
#POC
face additional challenges (as if we didn’t have enough with
#mecfs
#longcovid
&
#IACI
) - part of that challenge comes from decades of racists policies that have led to under representation of POC in healthcare.
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I am still seeing way too many
#LongCovid
patients who had a very active lifestyle continuously trying to exercise regularly while feeling horrendous. Please decouple general health recommendations for otherwise healthy individuals from
#LC
- your body needs that energy resource…
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1K
1. The power of community in all aspects of life: After my adult kids were back home with us in 2020-2021 we decided to stay living together and buy a property with some separation, but lots of communal living, which we did in November 2022.
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11. You don’t have to follow whatever expectations society has of how things “should be” - do what works for you, what makes sense for your situation, and hopefully what brings you closer to yourself and others!
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It infuriates me to see ME/LC psychologized. Not only because it seeks to minimize the very real pathophysiology of these conditions, but also bc it shows a gross lack of understanding of biochemical processes by those who are supposed to know. 1/
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Dr. David Systrom, harvard medical school:
#MECFS
and
#longcovid
insights from invasive cardiopulmonary exercise testing: This is being used in the investigation of all forms of exercise intolerance
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The individual costs of
#chronicillness
like
#mecfs
and
#LongCovid
are profound. This is why it baffles me when critics think that people prefer to sit at home and do nothing. even people who opt out of the workforce do so for a purpose. 1/n
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I move between the worlds of ancestral medicine and post infectious conditions. While there are many overlaps, exercise as a condition management is NOT one of them for
#LongCovid
and
#MECFS
- we can't allocate that energy at the expense of the immune system. Sufficient energy…
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The vagus nerve is a cranial nerve controlling much of the parasympathetic activity. There’s a lot of recent research for good reason. Some non-device, low level stimulation are: gargling, humming, meditation, cold water immersion & laughter (if you don’t have chiari).
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1. Patients suffering from vaccine induced ME or LC, or where vaccines worsened their conditions are facing double the gaslighting from doctors and from many on the community that should be supporting them. We need to hold space for nuanced conversations and believe ALL patients.
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Lack of genetic expression in immune cells, lack of metabolites and protein changes during exercise in
#mecfs
Exercise Triggers Major Immune System Letdown in ME/CFS - Health Rising
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@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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Save the date: I am so excited to announce that we are starting a
#MECFS
,
#LongCovid
&
#postinfectious
#chronicillness
clinician’s round table, hosted by
@RenegadeRes
and
@remissionbiome
- Round tables will be held monthly and will start on Friday March 15th at 1:00 PM EST. 1/
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10. That’d just one example. We care for each other’s dogs, groceries, and whatever needs arise. We have enough separate space, but chose to spend most of our time outside work with each other. We eat meals together, go for walks together, help each other out .
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9. What prompted me to write all this? I had “complained” that I don’t have time to make some of the elaborate coffee/drinks I like. So this am, my son rearranged my kitchen and made me beverage station to make it easier for me.
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In
#longcovid
testing vo2 peak was mildly decreased, pulmonary blood flow is high but there is a disconnect with vo2 peak. There is impaired o2 extraction, aprox 1/2 of normal.
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@beowulf888
@Salon
@ahandvanish
Anyone who understand the difficulties of applying, & getting disability in this country understand this graph. It is also too early for PwLC to give up the hope to return to their careers. For many the Sx are invisible and w/o provider support (and good attny) applying is a no!
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I am someone who LOVES exercise and movement and thinks the
@NIH
recover trial is borderline abusive. So many other places to focus on recovery and THEN ppl can start to gain the benefits of exercise when PEM doesn’t make you worse. It’s so backwards!
If exercise worked, post-viral syndromes would be cured by now.
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Europe's first facility for severe
#MECFS
patients is non profit. LTC facility with 3 houses, each with capacity of 4 pts. Staff is Rn, OT, MD, Research, PT, Psychology, nutritionist and more.
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2. We bought a house with 3 apartments and lots of common outdoor space where we can garden, and have 5 dogs. My kids love and nurture for their dogs is incredible and so beautiful to see.
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4. When I moved to the US at 21, and learned that kids are expected to move out at 18, this concept was very alien to me. The explanation that if they don’t, they don’t become independent and are complacent was even more at odds with my lived experience.
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8. So for a full year, we had 6 adults, in a relatively small house, barely ever leaving the house & we had a great time together. We still are!
Not a utopia, there are compromises and lots of communication, but overall great!
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I am not cured, but my function, and thus my QoL is pretty high MOST days. There is variability day to day and even within the same day most of the time. I still have many Sx present and those also fluctuate, but they are often de-coupled from my function. Meaning …. 1/n
Back to doing my favorite “Dominican” thing with my “lil” brother. I can’t dance the whole night like my siblings, but I can do a few songs without paying for it later!
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3. grew up in the Dominican, where people don’t necessarily move out or far at a certain age. People move, often close to family, if/when they go onto establishing their own families. It is very normal to buy, build, rent in the same neighborhood as your parents.
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@sum_dude44
@jbullockruns
How does having an accommodation that exempts you from working nights negate any skill as a physician? Are your current skills dependent upon your availability? Do you cease being a doctor when you go home? This 🧵 is so telling!
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Today
@tessfalor
& I fly over to UK to attend the
#IIMEC15
#investinME
conference, which will also cover
#longcovid
. Thanks to this amazing community for making it possible. We will be live tweeting on Friday 6/2 from the conference.
#MECFS
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Scientists discover receptor that blocks COVID-19 infection
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End of the
#IIMEC15
- it has been an amazing day.
@tessfalor
and I are beyond grateful to be here and be able to listen and share with all of you. A lot of amazing work being done to advance research and treatment for
#MECFS
#LongCovid
and others. We can solve together
#cure
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1. On this
#MEAwarenessDay
and
#MothersDay
I’ve been thinking a lot about my grandmother, who both managed my
#MECFS
and was my fierce advocate from the beginning. She used both the medical system and traditional herbalism & knew things that were not common knowledge yet.
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I know many of you know this already, but for those who may not: It is good practice to always get a copy of all your medical ANYTHING. Orders for labs and images to be matched with the results 1/
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5. Lucky for me, eventhough my husband is from and grew up in the US. He didn’t share this view, especially after living in the DR for 4 years and seeing the interactions and cooperative dynamics in every family he encountered.
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Today I am celebrating my 50th birthday. I keep jokingly calling it 30, not because I believe we should be denying our age, but because I feel way better than when I turned 30. That decade was the absolute worse in my
#MECFS
history.
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For the chronic illness community
#mecfs
#longcovid
social media is a great source of community & information, but unfortunately also an easy avenue that makes us the target of profiteers & charlatans with influence. How to distinguish the two? 1/
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On the
#unraveledpodcast
with
@RuhoyMD
and Dr. Kaufman, he states “Everyone of my patients says they’ve already done a bunch of tests and they were all normal. My patients are never normal, what’s normal is that the right tests have never been ordered”
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This is not neuroscience, it's neuro-dogma. The arrogance of people calling for not investing in research for a condition that has been grossly underfunded, yet not acknowledge that this is precisely the reason why we are here, is simply gross! Psychosomatic is not misunderstood.…
Imagine all you would have to ignore in order to come up with this opinion.
Impressive, really.
Neuroscientists should study that.
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I've discussed previously the importance of distinguishing between Symptoms and function when it comes to
#MECFS
,
#LongCovid
and
#postviralchronicillness
- I think it is also important to discuss the interconnectedness at every stage of the recovery continuum. 1/n
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Working on physiologic end points to prove that these things (such as exercise intolerance) is not on patients heads. Detraining >increased not decreased biV filling pressures. Detraining is NOT a sig cause of impaired systemic O2 extraction.
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1. Longest crash since last May today. Usually my crashes are “mini” meaning they don’t last more than a couple of hours and are not frequent. 43 years with ME helps me identify possible factors:
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Scientists invent new dye to shine light on diseases such as
#MECFS
- patients with the condition had fewer, but larger Lipid Droplets (LD)
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Throughout my illness, I have gone through financial devastation from medical bills and not being able to work. There were many times when I saw people having access to trx I couldn't even think of having. I clawed myself out some of the worst times by 1/
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6. However, eventhough we always told our kids they didn’t need to move out until they decided to or “at all”, the pressures of society made them believe that moving out & figuring everything out by themselves was the right thing to do.
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7. Until 2020 when restaurants closed (my oldest is a chef & his relationship ended), and the situation brought us back together, including my daughter’s bf because my husband said “you either stay or you leave until the pandemic is over” (he had no idea how long that would be)
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Well,
#narcolepsy
sucks. Slept through 4 alarms and had a mini panic attack when I saw it was 10 mins before my flight departure. I always have multiple alarms even though this hasn’t happened in years. Brought back all the trauma of so many years unable to wake up. 1/
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I previously shared about housing needs for a person in
#NJ
. We have not been able to find a place. It was also made clear that this situation will be permanent. We are raising funds for Jake to get through the next 6 months while we explore permanent…
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@TrueMECFS
@tessfalor
Someone's medical records are between them and their providers. This is a voluntary act, not a transaction. There's enough gaslighting from the medical community . If it doesn't meet your guidelines, there's absolutely NO obligation from EITHER party.
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@ForsterSam
So, you think that you are better equipped to explain the black experience because you “disguised” yourself as a black person? “I can explain this better than black people” Appropriation, hubris, white savior, arrogance, there just aren’t enough words!
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You are a beautiful human who deserves to be cherished, and to be heard. You are the embodiment of strength. We are not alone, we have each other. United through suffering, stronger through community ❤️
#MECFS
#LongCovid
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PEM is disproportionate. Comparing what healthy individuals experience after exertion is not remotely adequate. We can’t have it sound as if the threshold is equal. I don’t know any healthy individual that has to spend a day in bed, feeling poisoned bc they cried.
I have no doubts that PEM often has an immediate component and that it can be terribly disabling. I just don’t think it’s the feature that most reliably differentiates people with ME vs people with other forms of fatigue, particularly in relatively mild cases.
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Back to doing my favorite “Dominican” thing with my “lil” brother. I can’t dance the whole night like my siblings, but I can do a few songs without paying for it later!
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#MECFS
where you can get all of the symptoms of being drunk and hungover at the same time, but the fun part never happened 🤷🏽♀️
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Brain fog in long COVID: A glutamatergic hypothesis with astrocyte dysfunction.
@KatBoniface
did an amazing presentation on glutamate at the
@remissionbiome
science round table. She’s been up to this for a while.
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Mito dysfunction in
#mecfs
was observed in electron transport chain, evidence of several deficiencies, perhaps as the result of the poor o2 extraction.
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4 yo ME. I already had some Sx, mostly GI, but also extreme leg pain anytime I tried to do physical playing like my peers, so I learned to read before my 4th bday. I remember the fatigue setting in after having shingles at 7. Guess the year!
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I have had short term remissions and baseline increases from several antibiotics & 1 with antivirals in my 40+ years with
#mecfs
. None of them were as impactful and systematic as
@remissionbiome
which has had a major impact on cognitive function. 1/
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amazing 3 days in UK for the
#IIMEC15
conference. Will never forget this experience.
@tessfalor
and I will forever be thankful to this amazing community for making this happen. Going home with a full heart (& a luggage with monitors for
#theacidtest
)
@remissionbiome
@RenegadeRes
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Brain retraining may be needed, but the ones needing it are certainly NOT the patients with
#mecfs
and
#LongCovid
- the providers still psychologizing these conditions need retraining ASAP!
Brain retraining and positive psychology won’t cure an impairment of mitochondrial energy production.
Pass it on.
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Key points summary - Ron Davis :
Susceptibility factors:
Immuno genetics /dysregulation
Micronutrient deficiency
Viruses
Microbiome (virome mycobiome, archaeome, etc)
Mitochondrial
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When autonomic nervous system is dysfunctional, blood flow goes to areas that do not need it. Pts dx w/small fiber neuropathy, preload failure and impaired o2 extraction have similar prevalence.
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I have been sick since the age of 7. I don't have memories of being a healthy person. Yet, having experienced remission events, I know what a completely healthy body feels like. I know for many the memory starts to fade. I am so overjoyed for Tara's experience today.
#renegade50
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.
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How many people with
#MECFS
and
#LongCovid
have eye and visual problems . If other please comment
Dry eyes
531
Blurred vision
593
Film over the eyes
38
Floaters
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I keep forgetting to update too. I am mostly living a normal life.
@tessfalor
described herself at 100% and I’m at 80-90 most days now, with today being more like 98%. I have had a few short crashes with only one being a whole day. 1/n
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Spain 🇪🇸 bound - For the next week, you can find me eating everything in sight. It’s my favorite food & favorite place with my favorite renegade & friend
@tessfalor
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Stress: this is a big topic that we all have to deal with. Our conditions
#MECFS
and
#LongCovid
add a level of constant stress to our bodies and the stress of dealing with everyday medical situations can also be overwhelming 1/
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shortness of breath pathogenesis VE/VCO2=1/paCO2 x (1-VD/VT) - ventilatory inefficiency = hyperventilation in
#longcovid
. The genesis is unknown, a signal from the periphery is suspected, which could be neuro-mediated.
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#greatestMEdicalScandaal
- I have had
#mecfs
since the age of 7. I am now 50 & have spent the majority of my life limited and unrecognized. The life robbing power of this condition is unfathomable - we need help, we need action NOW!
#millionsmissing
The
#GreatestMEdicalScandal
affects millions of individuals around the world. We invite you to tag your personal
#ME
#MyalgicEncephalomyelitis
#MECFS
#MillionsMissing
stories with
#GreatestMEdicalScandal
. (I'll include my own below.)
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I think my grandma was the ultimate intervention stacker for my
#MECFS
. She used to give me bicarb drinks, antiviral herbs, enemas, Bvit, Iron and much more. She helped me to pace…..& always believed my symptoms!
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preload failure tends to compromise VO2 peak. High vs low flow in MECFS. The high flow group shows poor systemic 02 extraction in a addition to preload failure.
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Amazing time and conversations with
@jencurtinmd
and
@ryan_kellogg
and
@tessfalor
at
#IIMEC15
followed by a delicious
#renegade
dinner 😉 - Safe travels!
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@MarieThereseBka
From a GP some 20 years ago: I’m going to give you antidepressants
Me: but Im not depressed
GP: I think you are depressed, you are in my office crying
Me: I am crying because I’m in a lot of pain
GP: I still think antidepressants will help.
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This is why we need
@iamjohnoliver
&
@jonstewart
to cover the
#GreatestMEdicalScandal
in
#JohnVsJonVsME
so we don’t continue to battle
#misinformation
while left to suffer with
#MECFS
It’s been 43 years for me!
People like the presenter at
@ACSMNews
hold false beliefs about exercise and illness like ME/CFS and Long Covid.
One of them is they believe the disease is caused by bed rest - but the reality is, 80% never did any bed rest at all at the onset of illness
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Emotions and PEM are double the cruelty. You have the distress of the emotions and the payback of the PEM. Trying not to feel “distress”, not to cry when something is important is further stripping of our humanity!
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In my many years having
#MECFS
I have come to recognize that it is important not to attribute all & new symptoms directly to it, even when it is the catalyst for so many comorbid conditions 1/
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I am so excited to see the first few members of the
#Renegade50
get through their testing & prep, walking towards the acute phase of the protocol already seeing improvements.
#patientled
#communitydriven
#sciencebased
#individualized
WE are
@remissionbiome
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invasive CPET, neurovascular dysregulation, mitochondrial dysfunction, breathlessness/hyperventilation
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Let's start with the financial costs to the ill person: Loss or decrease in income, added expenses for medication, supplements, medical devices, tests, doctor's visits, food. Imagine all that money was saved and/or invested 2/
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It’s half way through 2024 :
LC is not deconditioning or FND
Paxlovid should not cost 1400
We should not have HCW who are this misinformed.
Why is Twitter more informative than HC orgs
Physiotherapist checking in to say: no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no no
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In the meantime, working with
@remissionbiome
to provide equitable access and give as much as I possibly can of my time to do something is the best I can hope for. Yet, I know that it is not enough. So many people are left behind, it's daunting.......it is haunting, really 4/4
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These chronic illness communities is where real achievements are at. You endure difficult day after difficult day in your own bodies and still show care and compassion for others. Your value is intrinsic and rooted in your humanity.
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These scenarios really pain me. I think its incredibly unfair to not have access to life changing treatments in a world that has access to so much. I wish I could personally help EVERY SINGLE PERSON not to have to go through that, I wish healthcare was equitable everywhere 3/
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Our next
@RenegadeRes
Research roundtable is Thursday May 23rd. The topic is "T-cell dysfunction in
#MECFS
and
#LongCovid
" with researchers Liisa K. Selin, MD PhD; Anna Gil, PhD, viral immunologists from the University of Massachusetts Chan Medical School
Roshan Kumar, PhD,…
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Here we go.
@tessfalor
and I are getting ready to head out and listen to this incredible line up of speakers and tweet all about it. Stay tuned
#MECFS
#LongCovid
#IIMEC15
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Then, the personal cost to relationships: marriages are strained, social connections may be lost, family relationships broken. The sorrow that I often feel for how much of my children's life is impossible to describe 3/
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Tests are performed mostly at Women and Brigham hospital in MA, testing patients upright (not to miss orthostatic intolerance) on a bike. minute ventilation is measured with two catherers (one through the jugular vein). Both sample blood gases, lactate and other biomarkers
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This picture is 10 years ago. It’s incredibly deceiving. I spent most of this party sitting, dizzy and in so much pain. Had a month long crash after. Everyone commented on a great pic. Few knew how much suffering my body was enduring, that was not captured!
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Those who think that people "CHOOSE" that life because of depression are really out of their minds. Yet this idea continues to be perpetuated, among people, and worst of all, among those who are supposed to provide care. 5/n
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This is what I mean by research dogma. They are convinced by the impossibility of exercise being harmful for patients with PEM and will waste research funds, instead of using it to understand why.
Yep. Those symptoms are gonna guide a lot of people to live in their beds. ✨✨✨
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Years after I was dx I noticed that when I cried (not the movie type cry) my pain leves and malaise increased (I didn’t know what PEM was then). That’s when I started focusing on managing stress at all cost. My “personality” has literally changed because of this. 1/
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COVID-19 Antibody Discovery Could Explain Long COVID
This is def interesting!
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We deserve to have providers who are educated on our conditions. The system has failed at that. We become citizen scientists & gain deep understanding of our bodies. We are tired of the status quo, but even from our beds, we endeavor to move the research forward!
@remissionbiome
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We need to unite as a community, but we also need to show how chronic illness is going to affect their bottom lines. They do not care about our humanity, but very much care about their bottom line. We need a campaign that shows both and recruits more allies 8/8
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@Delta
Anyways- on my way now despite a complete itinerary change. Trying to breath and channel the frustration into working on
#renegade50
stuff so we can all have to suffer less with all the comorbidities that
#mecfs
and
#LongCovid
bring 3/3
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Our collective interest is to restore quality of life. We want to raise our children, pursue or passions, enjoy an outing with friends. No one is more resolute than US, the patients, to break through the days, months & years of unrelenting agony.
Suffers of long COVID, ME/CFS and other chronic conditions are taking medical research into their own hands.
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peridosygmine increased VO2 peak in a second exercise test in a small cohort of 50 women. This potentially primes the pump better.
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Body strain: When you are able to do things, often there's a payback. Imagine if you were in vastly more pain and debilitating fatigue, just bc you went to your child's graduation or attended your sister's wedding (I was severe for a month after traveling for this years ago) 4/n
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