Isabel Ramirez-Burnett @IsabelRamirezRD Twitter profile

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Isabel Ramirez-Burnett

5 months

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.

How Present-Day Health Disparities for Black People Are Linked to Past Policies and Events | KFF

This brief examines how past policies and events are linked to present-day disparities among Black people in health and health care.

www.kff.org

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Isabel Ramirez-Burnett

@IsabelRamirezRD

11 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

@weeklyshowpod The #GreatestMEdicalscandal and the decades of abandonment for #MECFS patients. How we went through a pandemic that added more people to the post infectious chronic illness pool and we have all been abandoned #JohnvsJonvsME

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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

@weeklyshowpod Just watch this and you’ll start to understand the #GreatestMEdicalscandal and how we keep getting abandoned over and over!

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@ABrokenBattery

3 months

George Monbiot described the treatment of #MECFS as "one of the greatest medical scandals" & "this is about how the scientific and media establishment closed ranks around bad science, defending it from legitimate questioning and criticism." #GreatestMEdicalScandal

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Isabel Ramirez-Burnett

@IsabelRamirezRD

8 months

@ITV @Suej1959 The gross neglect, gaslighting and lack of research for #MECFS patients who have been sick for decades!

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Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

9 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

11 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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

Exercise Triggers Major Immune System Letdown in ME/CFS - Health Rising

The great question for chronic fatigue syndrome and long COVID is: what causes post-exertional malaise (PEM)? The latest study to come out of Nancy Klimas’s Institute for Neuroimmune Medicine – led...

www.healthrising.org

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

@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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Isabel Ramirez-Burnett

@IsabelRamirezRD

7 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

2 months

@MetalfaceDIO @skinnyprinsess @denorx_ except in RI, the smallest state, where people pack a lunch if they have to go further than 15 mins. Generally speaking for mundane things, 1-1.5 hrs is far away, for important things, 3 hrs is far.

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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

@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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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!

Todd Davenport

@sunsopeningband

1 year

If exercise worked, post-viral syndromes would be cured by now.

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Isabel Ramirez-Burnett

@IsabelRamirezRD

2 months

@ElonMNews How about TwitterX

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

1. Someone asked me what meals do I make that I consider nutritious when I have the least amount of energy. Sharing in case anyone finds it useful if they have the spoons to do:

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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

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

Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

#Jersey folks. I need someone to host a #PwME for the night. A young person who's parent is not as understanding of the condition and told this person they needed to get out. Person is in central Jersey, Freehold area. If you have an extra couch/bed please let me know ASAP

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

@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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

14 days

URGENT - need an attorney in MA for an ME Pt who is being forced to psych care against their will. Please message me any contact. If anyone knows an advocate in the state please message me asap

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Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

Scientists discover receptor that blocks COVID-19 infection

University of Sydney scientists have discovered a protein in the lung that blocks SARS-CoV-2 infection and forms a natural protective barrier in the human body.

phys.org

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

9 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

Dr. Bhupesh Prusty: Herpes virus reactivation as a trigger for #MECFS and #LongCovid

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

9 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

9 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

2 months

Parkinson’s linked to gut bacteria that synthesize B2 and B7

Parkinson's Link to Gut Bacteria Suggests Unexpected, Simple Treatment

Inching closer to the full picture.

www.sciencealert.com

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Isabel Ramirez-Burnett

@IsabelRamirezRD

6 months

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.

Todd Davenport

@sunsopeningband

6 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

5 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

26 days

Celebrating 31 years married to this guy who’s lived up to the “for better or worse” part. ❤️❤️

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Isabel Ramirez-Burnett

@IsabelRamirezRD

6 months

Scientists invent new dye to shine light on diseases such as #MECFS - patients with the condition had fewer, but larger Lipid Droplets (LD)

Scientists invent new dye to shine light on disease

Scientists at La Trobe University have developed a new fluorescent dye which better shows how the body processes and stores fat, opening the possibility for new research directions for several...

www.latrobe.edu.au

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

Preload failure is observed in all patients with #MECFS and #longcovid

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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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

Jake needs housing to manage Long covid & Chiari, organized by Isabel Burnett

Jake is one of the participants for R50 Remission biome. Jake is all s… Isabel Burnett needs your support for Jake needs housing to manage Long covid & Chiari

www.gofundme.com

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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

@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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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

@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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Isabel Ramirez-Burnett

@IsabelRamirezRD

9 months

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

Vital Reaction®

@h2vitalreaction

9 months

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Isabel Ramirez-Burnett

@IsabelRamirezRD

6 months

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.

Todd Davenport

@sunsopeningband

6 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

2 months

@DreAllDay @maybegabrielle You don’t have to be a woman to understand how pregnancy and birthing can affect your health. From back pain, urinary incontinence, preeclampsia to death. This is basic knowledge!

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Isabel Ramirez-Burnett

@IsabelRamirezRD

7 months

#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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Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

11 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

9 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

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

Todd Davenport

@sunsopeningband

3 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

2 months

I had a terrible morning. I’ll share the context of why. I have had #MECFS for 43 years. After being dx with several other conditions less than 10 years ago, I realized that it is important for me to separate/understand my comorbidities, even if they all stem from the same

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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

Guys: let’s all let @jonstewart know that we need him to cover the #greatestMEdicalscandal He can win the #JohnVsJonVsME

The Weekly Show with Jon Stewart

@weeklyshowpod

3 months

Unfortunately, everyone has opinions. Fortunately, we want to hear yours! Who/what should Jon talk to/about?

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Isabel Ramirez-Burnett

@IsabelRamirezRD

11 months

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!

Todd Davenport

@sunsopeningband

11 months

Brain retraining and positive psychology won’t cure an impairment of mitochondrial energy production. Pass it on.

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

Key points summary - Ron Davis : Susceptibility factors: Immuno genetics /dysregulation Micronutrient deficiency Viruses Microbiome (virome mycobiome, archaeome, etc) Mitochondrial

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

2 months

A probiotic reduced the amount of Staphylococcus aureus, or “staph,” bacteria in the human gut and nose without harming beneficial gut microbes. Source: National Institutes of Health (NIH)

Probiotic blocks staph bacteria from colonizing people

A probiotic reduced the amount of Staphylococcus aureus, or “staph,” bacteria in the human gut and nose without harming beneficial gut microbes.

www.nih.gov

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Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

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

Tara Foti, PhD MPH

@TaraFotiPhD

10 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

US fights their own soldiers because #racism

AFRICAN & BLACK HISTORY

@AfricanArchives

3 months

The Battle of Bamber Bridge, 1943. Racist US military police attacked black US troops on British soil. US military authorities demanded the town’s pubs impose a colour bar, the local landlords responded with signs that read “Black Troops Only” which pissed them off. A THREAD

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

11 months

How many people with #MECFS and #LongCovid have eye and visual problems . If other please comment

Dry eyes

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

9 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

7 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

1. When blankets statement about herbal/natural compounds are made, mocking people who use them, you are likely internalizing a colonialist mindset. It’s one thing to want to understand the mechanisms & want to verify that the products contain what they claim.

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

#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

María Richardson

@_diatoma

4 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

18 days

@collin_ruth89 @EpoxyGuySac Employees experiences are on the losing end of this. If someone doesn’t feel comfortable disclosing that maybe they forgot to put in time off for this ahead of time then the environment is not conducive to feeling comfortable disclosing the real reason. Is it right? No, but

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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

@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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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

@DisabledDoctor This sounds like the background story of “handsmaids tale”

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Isabel Ramirez-Burnett

@IsabelRamirezRD

3 months

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!

Naomi Harvey PhD #WearAMask

@Naomi_D_Harvey

3 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

5 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

9 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

1 year

invasive CPET, neurovascular dysregulation, mitochondrial dysfunction, breathlessness/hyperventilation

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Isabel Ramirez-Burnett

@IsabelRamirezRD

13 days

We need to form a strong coalition that prepares patients for the inevitable emergency & hospital (including mental hospital) admission with documentation, information, and a network that can act swiftly and knows the law/rights where they operate. If you have expertise or are

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Isabel Ramirez-Burnett

@IsabelRamirezRD

14 days

1) We need to do so much more to educate families on the nuances of post infectious chronic illness. So much of the work is being done by patients, caregivers & far too few clinicians/researchers, but there is so much more to be done.

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Isabel Ramirez-Burnett

@IsabelRamirezRD

17 days

@acnewsitics Men that mock other men for crying is everything that’s wrong with society. The cruelty of picking on a young man with disabilities is as despicable as it gets.

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Isabel Ramirez-Burnett

@IsabelRamirezRD

10 months

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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Isabel Ramirez-Burnett

@IsabelRamirezRD

8 months

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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