Richelle Sepulveda @Really_Richelle Twitter profile

Pinned Tweet

Richelle Sepulveda

@Really_Richelle

1 year

I got on Blue Sky, finally! I'm on Threads, too

Richelle Sepulveda (@richellesepulveda) on Threads

95 followers

www.threads.net

0

18

Last Seen Profiles

@yowandrada

@nutritionitnb

@pochikansai

@MMoach

@Luisa_Oregon

@nurse_mean

@KeyozuVT

@severusceo

@selenagomez

@berkaydere0

@1Taif17

@_Melia_Familia

@Rana_0511

@ale_alez37144

@TylaTyGRR

@mishka_jackap00

@Bitcoin_Square_

@redditHasan

@budweisa

@6lacktears

@Thunayyan16

@zaythemain

@27bubblegum

@london2lagosboy

@DexusPlay_

@StevenHelhammer

@Earthdriver

@ArthurBelSam

@MrDude_7

@FindomLa

@saratepper

@FWBkalimantan

@datttdealll

@MSkymkjw

@mhmdrsa4353935

@Gregory45311481

Richelle Sepulveda

@Really_Richelle

2 years

@AditiJuneja3 @epidatageek I know so many couples (straight/white) that don't communicate, have no hobbies or friends in common, and otherwise seem miserable. The only reason they seem to be together is to check the "couple" box with someone they seem attractive enough to have sex with. Nothing else.

19

54

2K

Richelle Sepulveda

@Really_Richelle

1 year

@CuddlePotato @frogs4girls

4

71

2K

Richelle Sepulveda

@Really_Richelle

5 months

The first time I saw my husband play pool was after we had been married about 10 years. I just assumed he was slightly more skilled than me, but medium overall player We were having some drinks with friends who had a table, and he just DESTROYED them, even some trick shots.

Brizz-Chan (Mr drive)

@billybrizzle420

5 months

I forget I played competitive pool for 2 years when I was really strung out and I'll occasionally go out and play a game with the guys from work and run the table and I gotta be like sorry fellas I forgot I could do that

39

233

11K

1

24

2K

Richelle Sepulveda

@Really_Richelle

2 years

@ErinEARoss Reminds me of one anecdote I saw how a college student decided to get screened. She and her friends took some recreationally. Her friends were bouncing off the walls, she sat down and caught up on her email inbox.

11

13

1K

Richelle Sepulveda

@Really_Richelle

5 months

His explanation? "Oh, I hung out at a pool hall a few times a week for about six months after high school."

1

800

Richelle Sepulveda

@Really_Richelle

1 year

One problem I have with this new(ish) idea that I see doctors spouting "exercise can help everyone, but I don't mean hard exercise, just some movement every day, don't do too much to trigger PEM, but exercise will help..." is that this seems to place responsibility on the patient

18

39

490

Richelle Sepulveda

@Really_Richelle

4 months

Anyone with EDS (and subsequent resistance to anesthesia, novacaine, lidocaine, etc.) is probably feeling this a little bit too strong, lol! Being neurodivergent with a resistance to novacaine, and needing a lot of dental work left quite a mark on me as a child.

Victoria Duncan

@SNeurotypicals

4 months

At some point, very early on, undiagnosed neurodivergent children are faced with a terrible dilemma. They will tell someone they're in pain, someone they trust, and that person will say no they're not. That didn't hurt. It can't have. They're being selfish/dramatic/lying.

56

1K

7K

20

49

442

Richelle Sepulveda

@Really_Richelle

2 years

If I set up a discord server to discuss research into LC, ME/CFS, Fibro, Lyme, CCI, and related conditions, would anyone be interested? The idea would be to have an informal place to discuss, to just bounce ideas off each other for plausibility, and to... (cont)

44

35

383

Richelle Sepulveda

@Really_Richelle

2 years

@HowtoADHD As soon as someone in my life gets married, has a kid, etc., I put it in my Google calendar as an annual repeating event, and include the year. And put a notification alert for it for 1 week prior to the date. Otherwise I will forget how old nieces/nephews are, by decades!

6

3

279

Richelle Sepulveda

@Really_Richelle

1 year

It's almost as if the doctor/PT is aware of PEM, but expecting brain foggy patients who desperately want to do more to keep testing their energy envelope. Then if they push too hard, partially based on the doc's recommendation, then it's the patient's fault for overdoing it.

1

19

249

Richelle Sepulveda

@Really_Richelle

21 days

Currently have Covid, so it's really weird to feel both sick and miserable, but my body at the same time feels closer to pre-LC self. Example: had to walk the dogs to their outdoor area so they could cool off in their kiddie pool, and coming back up the hill ...

29

10

249

Richelle Sepulveda

@Really_Richelle

1 year

I dunno, I just feel like it's a set up for the blame to be on the patient. "You should have tried harder!" or "You should have known better!" to be deployed anytime the patient isn't better. It can't be the doctor's fault, not possible.

3

19

241

Richelle Sepulveda

@Really_Richelle

2 months

@spoonfulofhan @DisabledStem Our daughter would get very tired every May and would put herself to bed (at 10yo!) around 7pm since she was so exhausted. We took her to the doctor and discovered she had a significant allergy to a heavy pollen in our area, making her lungs fill with fluid.

3

7

244

Richelle Sepulveda

@Really_Richelle

1 year

What symptoms do you really think CBT will address? Why is it always "the mind affects the body" and never the other direction, where the body affects how the brain functions? Example: my anxiety disorder disappeared after treatment for MCAS. Because histamine affects the brain

Grace Huckins

@grace_huckins

1 year

@loscharlos @VirusesImmunity @Slate In a world where we need to try everything promising to aid people who are suffering. I think we are ultimately on the same side here, really, but I don’t understand how you can assert without evidence that CBT isn’t worth further study.

45

0

5

19

30

240

Richelle Sepulveda

@Really_Richelle

1 year

Thinking your next Covid infection will be mild with no lasting effects because the previous one was is like saying you have immunity to injuries from a car accident because your previous one was mild/just a fender bender.

charlos

@loscharlos

1 year

Or maybe somebody told you #LongCovid not possible upon reinfection since you have immunity.. so you’re not thinking about it anymore until.. it happens to you. There is no warning. The waves will keep coming, & chance of it including somebody you love remains.

3

31

158

7

65

197

Richelle Sepulveda

@Really_Richelle

10 months

How much illness could have been prevented over the years if we had not just assumed everyone gets EBV and it's fine? Like if we had tried to control its spread and had a stronger public desire for a vaccine?

Dr Elisa Perego

@elisaperego78

10 months

@HarrySpoelstra The authors note that "two of them (CASSLGQAYEQYF and CASSLGYEQYF) were found to exhibit specificity towards T cell epitopes derived from EBV."

1

4

25

8

34

195

Richelle Sepulveda

@Really_Richelle

2 years

@bennessb I would rather mistakenly believe a "faker" (likely exceptionally rare, I think!) than make anyone second guess their own real needs and symptoms as being enough to count.

4

10

182

Richelle Sepulveda

@Really_Richelle

5 months

I kinda feel like research money for MECFS and LC is mostly being spent on "is it really?" more than "how can we treat it?" Sure, biomarkers would be nice, but even depression is researched for/via treatment options, and the results are determined patient reports.

7

27

174

Richelle Sepulveda

@Really_Richelle

7 months

@IBJIYONGI I think it also comes down to some cognitive tendencies: -Fascists are BAD -I am a GOOD PERSON -Therefore, things I support CANNOT be fascist. And then they react to being called a "bad person" when the thing they support is called fascist, rather than examine the argument.

6

18

160

Richelle Sepulveda

@Really_Richelle

10 months

Looks like I have a very faint line on my covid test. 😐 That explains my 3 day headache I suppose.

16

6

164

Richelle Sepulveda

@Really_Richelle

1 year

(I think I woke up in my cranky pants this morning 😆) The overall discourse just reminds me of new diet fad fans who are so certain this new diet is the magic cure for everyone, and if it doesn't work for you it's your fault for not doing it perfectly.

1

152

Richelle Sepulveda

@Really_Richelle

1 year

People can be hurt long term if they overdo it, but then the doc always seems to argue back some cloaked variation of, "But what if I tell them to rest and they become lazy slobs?!!" I just can't argue with those ones anymore. I don't have the time or energy.

2

4

152

Richelle Sepulveda

@Really_Richelle

1 year

A few of the doctors I've seen that might be asking questions in good faith would benefit from starting with "Rest is Best." When in doubt, tell the patient to rest and pace. Only then look for who might benefit from movement and light exercise.

2

5

151

Richelle Sepulveda

@Really_Richelle

3 years

Weight gain (or loss!) is a symptom. And health is not a reward for good behavior!

1

14

152

Richelle Sepulveda

@Really_Richelle

5 months

For years I was developing more and more anxiety, and it interfered with many areas of my life, including sleep. Then I finally connected to the MECFS community and started treating my MCAS. My anxiety PLUMMETED with no other interventions applied besides the MCAS meds.

Sten Helmfrid 🇺🇦

@StenHelmfrid

5 months

Professor Sharpe’s reply to Monbiot’s excellent article shows that Sharpe just doesn’t get it. The problem is not doctors paying attention to fears and emotions, but doctors presuming without evidence that fears and emotions are the cause of #MECFS .

21

85

403

16

25

150

Richelle Sepulveda

@Really_Richelle

6 months

No one could tell me why eating made me feel so awful, just the "blood goes to the stomach to digest the food!" 🙄 Then I found out about GIP, and now I am able to predict and track when that postprandial tachycardia and crappy feeling hits.

HopeStarMasacre

@MscreStarHope

6 months

eating. the physical act of eating. is making me crash. please, for the love of god, help me see doctors. help me get medical care. this is becoming untenable. i have yet to try more than supplements. i have yet to get a proper medical workup. help.

25

111

174

14

11

146

Richelle Sepulveda

@Really_Richelle

6 months

It's actually harder to rest appropriately than it is to make myself exercise/move/exert. If jogging would cure me, I would be running like 5+ miles a day! It's not the motivation, it's the consequences that stop me.

Hana

@cojehp

6 months

The strange urge to do more things while in PEM

7

6

77

3

25

144

Richelle Sepulveda

@Really_Richelle

1 year

@oldenoughtosay Me too! Trying to explain too when the pain was at the worst during the cycle and the gyno (who was amazing!) said no, that's not normal. He fought my insurance company and helped me get my hysterectomy at 33!

1

141

Richelle Sepulveda

@Really_Richelle

2 years

I'm the only person I know in offline life with LC, but I find people ALL THE TIME who have symptoms, but just don't realize they aren't the only one with it. I give out links to research, support groups, and lists of comorbidities constantly. Averages out to 1-2 per week.

Chris J. Maddison

@cjmaddison

2 years

If you "don't know anyone with long COVID", you may not be the type of person that people confide in.

219

774

5K

3

19

137

Richelle Sepulveda

@Really_Richelle

1 year

Sometimes I am perplexed by things other people can't seem to understand. Right now I am struggling with why some in the Long Covid community are fighting so hard to avoid being associated with MECFS. It doesn't make any sense!

Hannah Davis

@ahandvanish

1 year

I have ME/CFS from COVID. I also have dysautonomia from COVID. There are specific definitions for each condition. It wouldn't be possible to solve #LongCovid without also solving these, because for millions of us (prob about half of people with LC), LC *is* these conditions. 1/

36

280

1K

19

6

135

Richelle Sepulveda

@Really_Richelle

2 years

@AditiJuneja3 @epidatageek It's like they assume you are not really supposed to like the person you share your life with. Like Mike and Nancy's parents on Stranger Things.

1

3

128

Richelle Sepulveda

@Really_Richelle

2 years

@Chinchillazllla Not a pig, but my dog loves his pool, too!

3

122

Richelle Sepulveda

@Really_Richelle

1 year

My early signs 10+ years ago were: -Progressively worse DOMS -Increasing sun/heat intolerance -Gut/stomach disruptions -always so itchy! -Legs feeling really heavy some days, but not others -Often really winded & gasping for air with mild exertion like gentle hikes

sunrequiem 🆓🇵🇸

@The_Gloria_Sun

1 year

A dozen years after I had a strange infection, I gradually became so disabled by #MECFS . It concerns me that #pwLC might not know what hit them until later. Seemingly mild cases can progress years later and it’s important to know the signs early and intervene with pacing.

10

47

306

5

27

131

Richelle Sepulveda

@Really_Richelle

1 year

GIP (Glucose-dependent Insulinotropic Polypeptide) is an incretin that triggers insulin release when nutrients like carbs hit the the stomach. In people with POTS it has been shown that instead of staying active in the system for less than 30 minutes, it can stay active 3 hours.

10

25

128

Richelle Sepulveda

@Really_Richelle

4 months

If they had years ago started looking at excess weight as a symptom of illness instead of a cause, where might this research be today?

David Fajgenbaum, MD

@DavidFajgenbaum

4 months

Huge news! A drug that doesn't even work on the brain might be a treatment for Parkinson’s disease! A study came out that patients with Parkinson's disease experienced improvement on their symptoms when taking a GLP-1 agonist. This drug similar to Ozempic works directly on the

14

33

126

20

24

124

Richelle Sepulveda

@Really_Richelle

7 months

You know, I have some ideas on this, and it goes back to the Grief System (bonding/separation anxiety system), cognitive load, lower cognitive energy, Default Mode Network, etc.

🐀💜

@Guiness_Pig

7 months

A thread… I know many of us have observed personality changes in people following a 🦠infection. Some of these folks were previously 🦠-cautious, including some with a large social media presence.

38

67

694

6

26

124

Richelle Sepulveda

@Really_Richelle

2 years

So many illnesses have a post viral link: ME/CFS Multiple Sclerosis POTS/Dysautonomia MCAS PANS/PANDAS Type 1 Diabetes Alzheimer's (possibly...) And so many more! Also those that leave long term damage in other ways, like herpes/cold sores, chicken pox/shingles, HPV/cancer...

It'sME(Jaime)

@exceedhergrasp1

2 years

Just endlessly screeching. #MedTwitter for the sake of all that’s holy: it’s far past time to become acquainted with infection-associated chronic disease. You’re going to be seeing SO MUCH of it. It will not be rare again, maybe ever again. #POTS and #PANS , #MECFS #MCAS

9

109

405

5

34

118

Richelle Sepulveda

@Really_Richelle

2 years

@ellle_em We had to separate 2 puppies we rescued after their mama died when they were 2 days old for a very similar reason. 2 BOY puppies... One was particularly needy for the comfort of nursing, so we got him a pacifier.

2

1

121

Richelle Sepulveda

@Really_Richelle

3 years

@NomeDaBarbarian

1

30

118

Richelle Sepulveda

@Really_Richelle

2 years

@clarejdaly @WoollerEmma The breathing/gasping/cough thing was also the first one I got the doctors to investigate. Turns out my vocal cords were spasming and not fully opening. From patient support groups I heard that was common, to the point they called it "COVID Strangle". Docs had no idea, of course.

6

14

116

Richelle Sepulveda

@Really_Richelle

2 years

@ageniadel @Sciencewriter The ones that get me are when they beg for a 12 hour extension because they won't be able to access good internet while they are at their dad's funeral. I tell them as long as it's in by end of the semester I will accept it. And they are shocked I am accommodating them! 😢

0

114

Richelle Sepulveda

@Really_Richelle

6 months

I think this is why the empty platitudes from my family about my health bother me so much. "Hope you feel better soon!" "You need to stay positive!" It feels like I can't discuss my loss of function/health without them dismissing the validity of my grief.

JustJan 💗🐘📚

@janjowen

6 months

Btw, grief research shows that social support after loss and having communal validation of the cost and pain of that loss is the primary factor that helps grieving individuals integrate their loss. It actually does matter whether we are met w/kindness or dismissal.

29

1K

10K

4

15

118

Richelle Sepulveda

@Really_Richelle

2 years

Man, why does The Onion have to hit so hard?

The Onion

@TheOnion

2 years

Woman Puts Off Going To Doctor Until Disease Bad Enough For Him To Believe Her

63

486

5K

0

19

114

Richelle Sepulveda

@Really_Richelle

1 year

If you were designing a Long Covid clinic, what would you want to include? Obviously not requiring in person appointments and masks are the very first thing, but what would actually help YOU? (I'm NOT making one, BTW, just wanted to have a nice list for comparison purposes!)

48

19

114

Richelle Sepulveda

@Really_Richelle

1 year

#TheNicotineTest #LongCovid I started the nicotine patch around 4 weeks ago on a day when PEM was just kicking in. It ended that PEM episode and I haven't had any since, despite doing much more exertion than I usually do! I have even tested how well I am handling the heat.

12

15

107

Richelle Sepulveda

@Really_Richelle

8 months

The older and more experienced I get, the more I think UBI is necessary.

15

27

107

Richelle Sepulveda

@Really_Richelle

1 year

I wrote on my blog about OCD, ADHD, and the MCAS connection:

ADHD, OCD, and MCAS

The many overlaps By Richelle Sepulveda (This is another stream of consciousness blog post, done late in the evening when I should be settling down for bed. If it feels erratic and jumps around, th…

richellesepulveda.com

12

106

Richelle Sepulveda

@Really_Richelle

4 months

Even if I won the health lottery and tomorrow woke up fully healthy, I would just be thrilled to have all of that extra energy to use to help this community. All of the successful treatments I have started have been because of other patients graciously sharing their knowledge.

Isabel Ramirez-Burnett

@IsabelRamirezRD

4 months

We use every once of energy to find ways to bring access to care for people with #MECFS , #LongCovid & #PICI because we need to. We know the gaslighting, the disbelief, the labeling, the loss of self, the loss of QoL and all the challenges, but 1/

3

15

81

2

16

107

Richelle Sepulveda

@Really_Richelle

4 years

@rebeccawatson It's weird that people worried about "cancel culture" don't realize so many of us have been policing our own speech/expression of beliefs for years for fear of retribution or violence from those around us.

1

13

98

Richelle Sepulveda

@Really_Richelle

4 months

@kittywifclaws @laurenancona Actually yes! People with red hair are also likely very resistant to even their OWN endorphins, so they don't often get the post-meal "high" from hot, spicy foods.

16

12

97

Richelle Sepulveda

@Really_Richelle

21 days

... I had zero leg/body heaviness. I was actually (accidentally) faster than the 15 yo dog with arthritis! Yes, I am taking it very easy, laying around, staying cool, doing as little as I can, but it's really hard when my body otherwise feels really good.

0

2

97

Richelle Sepulveda

@Really_Richelle

6 months

@1goodtern If you haven't read "Unthinkable: Who Survives A Disaster Strike And Why", it's really illuminating on how people are responding to the pandemic and the resulting poor messaging.

The Unthinkable: Who Survives When Disaster Strikes - and Why

Discover how human beings react to danger–and what makes the difference between life and death Today, nine out of ten Americans live in places at significant risk of earthquakes, hurricanes, tornad...

www.amazon.com

2

15

96

Richelle Sepulveda

@Really_Richelle

2 years

... always proactively plan. Will I need my noise cancelling headphones at this event? This new shirt looks great, but since I haven't worn it before I better have a backup just in case there's some part that itches me. I will plan this appointment in the morning because...

1

2

94

Richelle Sepulveda

@Really_Richelle

2 years

@tomfolanmd @farid__jalali This is what I share when people request a cheerful picture. My dog playing in his kiddie pool in the heat.

1

5

92

Richelle Sepulveda

@Really_Richelle

2 years

I've pointed out to people this exact problem with "slept her way to the top". If they still have a problem understanding it, I put it in the context of bribery. Who is the victim in bribery? If someone was susceptible to a bribe, they should not have that power.

Wagatwe Wanjuki 🇰🇪 🇧🇸

@wagatwe

2 years

"AH in a nutshell" aka she's a victim of sexual violence and retaliation? "slept her way to the top" means there's a bunch of sexual harassers taking advantage of young actors 😭 the misogyny is real

11

202

2K

2

29

90

Richelle Sepulveda

@Really_Richelle

2 months

While nicotine patches don't help everyone, they are a critical part of my "defeat PEM" toolbox now. I even had a full Remission Event, like what @tessfalor has described! They don't always help me, but when they do, it's very, very helpful. @KatBoniface has some theories on it!

6

10

92

Richelle Sepulveda

@Really_Richelle

2 years

@chronicallybeee @OneSickVet I gave up on trying to find if they have garlic in anything. I either "pregame" with my antihistamines if I order food from anywhere, or just prepare food at home. They can't even tell me if garlic is in it!

3

90

Richelle Sepulveda

@Really_Richelle

2 years

The parade scene in Unrest with @jenbrea gets me every time. Even the first time I watched it, I knew what would happen. My husband knew what was going to happen. I have not (yet) been that severe, but that's partly because of Jen. Without her activism, I (1/4)

2

7

82

Richelle Sepulveda

@Really_Richelle

7 months

Given some other studies I read last year, I really am thinking that interstitial fluid is not being taken up by the lymphatics, leaving all of the "debris" from exercise and respiration just hanging out in the tissue.

Rob Wüst

@RobWust

7 months

@BraedenCharlton Blocking of capillaries by amyloid-containing deposits (or microclots) could reduced exercise capacity. We found these deposits in muscle tissue, but surprisingly not inside capillaries. They were located in between fibers, were higher in patients, and went up after exercise 5/n

19

146

932

7

12

85

Richelle Sepulveda

@Really_Richelle

1 year

@simuellers @TheNicotineTest @LeitzkeMarco I first started it in May. This week I was able to work 70+ hours in 7 days, including one day stuck outside in the heat. No PEM or brain fog. 🤯 I am basically in full remission. Not everyone has this much improvement, though. Ask me any questions, if you want to!

13

8

81

Richelle Sepulveda

@Really_Richelle

2 years

@AditiJuneja3 @epidatageek Culturally, too, I think. All their friends are in similar relationships. They don't realize it can be any other way, and assume there is such a difference between men and women that there is no way to actually men and women to enjoy life together.

2

4

77

Richelle Sepulveda

@Really_Richelle

2 years

@NataniaBarron Do you notice they never work to include "historically accurate" sweet things about humanity?

2

17

80

Richelle Sepulveda

@Really_Richelle

11 months

I kinda went down a rabbit hole in regards to metformin and GIP and Covid and interstitial fluid pressure and dysautonomia. It feels like my hypothesis is coming together even more!

8

2

80

Richelle Sepulveda

@Really_Richelle

2 years

...I will need the rest of the afternoon and evening to destress from it or I won't sleep well, and I HAVE to be functional the next day. Every part of our lives is less stressful and traumatizing if we preemptively plan, but NTs just seem to wander through life never...

1

2

79

Richelle Sepulveda

@Really_Richelle

2 years

@AditiJuneja3 @epidatageek My husband and I are like kryptonite to those relationships. They meet us, discover they don't have to be miserable, and spilt usually in a year. They don't learn their lesson, though, as next relationship is often similar.

2

3

74

Richelle Sepulveda

@Really_Richelle

3 years

Any content creators, really. Do you want money and fans from people who think your loved ones lives don't matter? Even Games Workshop has said, "We don't want your money!" to those kinds of folks. And they really like money! They don't want their brand associated with hate.

1

10

73

Richelle Sepulveda

@Really_Richelle

2 years

This thread makes me think of the game "Papers, Please". Do you follow the rules, but lose parts of your humanity, or do you use your position to help people, risking your own family?

0

15

72

Richelle Sepulveda

@Really_Richelle

2 years

... really planning for tomorrow, let alone next year, next decade, besides just thinking of the best case scenario. It's like looking at the future only through rose colored glasses, assuming anyone who points out how it could go wrong just WANT it to go wrong.

1

3

71

Richelle Sepulveda

@Really_Richelle

2 years

@dreamsofskies @UntoNuggan It's kinda funny, I've interviewed at a casino, partly because there's still smoking on the floor, so they have a good ventilation system installed to keep that air from moving into the non-smoking areas.

1

2

71

Richelle Sepulveda

@Really_Richelle

1 year

@blkgirllostkeys I don't know exactly what it is, but platitudes often just exhaust or anger me. It's different when it's from people who have the same experience, but when I explain something that affects me to people that don't understand, the platitudes feel like they are in place of action.

2

5

69

Richelle Sepulveda

@Really_Richelle

3 years

@StrangeAlienSky @SarahTaber_bww I have heard several people say, "kids these days won't show up for work" because of no call no shows. I replied that all the good workers who will regularly show up work in jobs where pay and treatment are better. Funny how crappy workplaces are also the ones with minimal pay.

1

0

64

Richelle Sepulveda

@Really_Richelle

4 months

It's almost as if the weight gain might be a SYMPTOM of illness, and GLP-1 agonists treat a possible actual cause...

NEJM

@NEJM

4 months

Among patients with obesity-related heart failure with preserved ejection fraction & type 2 diabetes, semaglutide produced greater reductions in symptoms, physical limitations & body weight than placebo at 1 year. Full STEP-HFpEF DM trial results: #ACC24

2

254

682

2

16

66

Richelle Sepulveda

@Really_Richelle

11 months

@sunsopeningband It's much, much too close to "useless eaters" for my comfort.

1

6

65

Richelle Sepulveda

@Really_Richelle

2 years

@margal @farid__jalali MCAS, Dysautonomia (like POTS), Gastroparesis, and other symptoms can show up after an infection, especially Covid. One of the big things to watch for is PEM (Post Exertional Malaise). That's exertion (cognitive, physical, emotional) can trigger massive fatigue, illness symptoms.

3

9

64

Richelle Sepulveda

@Really_Richelle

2 years

@AditiJuneja3 @epidatageek It's like they believe the New Relationship Energy will always be there, and any questions will make things uncomfortable and awkward, which is what white women are trained to avoid. "Don't make it awkward!" is drilled in since early childhood. Superficial happiness is paramount

1

6

58

Richelle Sepulveda

@Really_Richelle

11 months

Life goal (for the moment): To get PEM to be a household word.

1

6

62

Richelle Sepulveda

@Really_Richelle

2 years

@blkgirllostkeys I read a study about 15 years ago that showed people who you feel very similar to (in the study, close friends and family) you assume have access to all the same FACTS as you do, not just perspective. Even when it is mostly impossible that they do.

4

5

62

Richelle Sepulveda

@Really_Richelle

5 months

@MamaSitaa__ I often say, "Since the pandemic began."

1

61

Richelle Sepulveda

@Really_Richelle

2 years

@DataDrivenMD @atrupar It's like using neutral in a car with no brakes on a hill.

0

3

58

Richelle Sepulveda

@Really_Richelle

4 months

My son woke up during surgery and knocked out a nurse. A panicked patient (highly likely due to waking up in that kind of condition) is a safety issue for the entire surgical team. It's in EVERYONE'S interest to be watching for EDS as much as they do for natural red hair.

N🤗VA ME-CFS/POTS/LC/FMS etc Support Group

@CFSnova

4 months

"Dr. Hakim also explained how people with a type of #EDS or #HSD might experience unusual responses to local anesthetics, requiring higher doses or finding them ineffective. ... this phenomenon is well-documented and should be anticipated in emergency care settings."

0

17

31

6

8

60

Richelle Sepulveda

@Really_Richelle

3 years

This was a frustration I had with my son's teachers. They kept saying he wasn't trying hard enough, and I kept arguing there was something going on. Since it wasn't autism or ADHD, the school could not see anything besides a problem kid.

René Brooks | Black Girl, Lost Keys

@blkgirllostkeys

3 years

If I did poorly, I was told I was too smart for poor performance. If I did well, nobody cared because I was SUPPOSED to do well. Welcome to double trouble:

122

715

3K

1

6

55

Richelle Sepulveda

@Really_Richelle

7 months

For ND folks, they pay attention more to the internal moral compass rather than how NTs give more weight to the social moral compass. So, neuroinflammation triggers activation of the DMN, and in NDs this makes a need to leaning into being more "safe", while NTs lean more social.

2

4

57

Richelle Sepulveda

@Really_Richelle

6 months

Back before I got sicker, exercise would help me with possible dysautonomia-triggered hypoperfusion. I would feel so much better and alert afterwards, then 1 1/2 days later I would feel like crap. I kept saying I was just out of shape... Nope, it was PEM

Todd Davenport

@sunsopeningband

6 months

In an abundance of fairness, we haven’t looked into every form of movement and exercise prescription in POTS and there is a subgroup of patients who seem to feel better with exercise. This is where we “circle back” (ugh so corporate 🙄) to the precautionary principle: do no harm.

2

3

72

1

4

55

Richelle Sepulveda

@Really_Richelle

2 years

@Be_Kinderr @RuhoyMD Also with the idea of how important preventing infection is critical to preventing loss of function! Especially for viruses (and other pathogens) that we have allowed to become endemic like HSV, EBV, Covid, influenza, and so many more!

1

3

55

Richelle Sepulveda

@Really_Richelle

2 years

... that's because you have to slow down and pay attention, exactly what is needed in a place with so many pedestrians who are not great at watching for cars. This would require proactive planning to address it, but NTs seem to be awful at that. Neurodivergent folks have to...

1

2

56

Richelle Sepulveda

@Really_Richelle

7 months

After Covid infection, you have a higher level of neuroinflammation, so the DMN (default mode network) is very primed to activate. The DMN is strongly implicated in social anxiety, so we become hyper aware and sensitive to the feelings possible ostracism and social abandonment.

1

6

57

Richelle Sepulveda

@Really_Richelle

2 years

@pisa_lisa @AditiJuneja3 @epidatageek Yeah, toxic and traumatic history does make it risky to speak up. I saw someone once say, "Are you low maintenance, or are you just used to your needs never being met?"

1

2

53

Richelle Sepulveda

@Really_Richelle

3 months

Going through my previous test results and notes in my chart for today's appointment, and I saw it noted several times in there that, "the patient has an anxiety diagnosis, but exhibits no anxiety regarding the appointment/procedure, this is unlikely the source of symptoms."

3

0

54

Richelle Sepulveda

@Really_Richelle

7 months

ND folks are used to this feeling already, plus have a different way they respond to "moral behavior" and the DMN may, for them, be activating more intrusive guilt feelings for not doing enough of the "right" things rather than being socially accepted.

1

5

54

Richelle Sepulveda

@Really_Richelle

1 month

@weeklyshowpod #TheGreatestMEdicalScandal

XingJian

@tis_xingjian

2 months

Wrote a lil theme song for #JohnVsJonVsME ! Absurdly proud of myself for rhyming “research is precious” with “Dr. Ron Davis.” @lastweektonight & @TheDailyShow — who’s going to get in on #TheGreatestMEdicalScandal ? #MEAwarenessMonth #ME #MECFS #LongCOVID (Lyrics in vid & replies)

45

174

388

0

8

54

Richelle Sepulveda

@Really_Richelle

3 years

@SarahTaber_bww I had a kid in my class not make it to graduation because he rolled a tractor and tore his femoral artery. I can remember multiple accidents involving classmates, their dads, and neighbors. Safety never did seem to be a high priority.

3

2

53

Richelle Sepulveda

@Really_Richelle

1 year

Yay! On one hand, I hope it could help eliminate persistent virus, but if nothing else a EBV vaccine could prevent millions of new cases of MS, MECFS, maybe Alzheimer's, and more!

Billy Hanlon

@bhanlon15

1 year

Vaccine against Epstein-Barr virus may enter clinical trial next year German startup plans to test EBV-001 in preventing mononucleosis, MS risk factor

12

214

1K

1

8

53

Richelle Sepulveda

@Really_Richelle

2 years

... cool research we've found that maybe we don't have the spoons to dive in depth, or specialty knowledge, but someone else might. @ales_frost @Be_Kinderr @exceedhergrasp1 @JeffLubell_C19 @chydorina @qkate @netiamccray (Tag anyone else, this list is just people I saw today!)

3

1

53

Richelle Sepulveda

@Really_Richelle

5 months

I heard MECFS people mention the 3 groups of responders, no responders, and reactors. That was the first time I had thought about subgroups of the illness, beyond the inciting source/infection. It also made me get a bit angry at the prescriptive advice by "cured" patients.

Amy

@alexandrite113

5 months

I respond so badly to every med/supplement, it's insane. Even vagus nerve stimulation causes huge stress spikes for me. I'm beginning to realize that even if they do develop a treatment, it won't work for me. I will still be sick while everyone else gets their lives back.

37

3

90

4

7

52

Richelle Sepulveda

@Really_Richelle

7 months

Both desperately feel the need to suppress the Grief System, which is connected/overlapping with the DMN, but NDs cannot bypass the guilt feelings of putting people at risk (including themselves) and might find them have spiraling thoughts of how their behavior may affect others.

1

3

53

Richelle Sepulveda

@Really_Richelle

3 years

@tiramissou34 @AITA_online Mine doesn't read much either, but he got audio books of my favorite series' so he could listen to them during his commutes so he could share the experience with me. He also listens to them while doing household chores (dishes, laundry, etc.) so he can catch up to where I am!♥️

3

0

49

Richelle Sepulveda

@Really_Richelle

2 months

Hey, everyone. My nephew has found unresponsive yesterday and is still in a pretty rough state. Regardless if he wakes up today, given the extent of what he is dealing with he will be out of work for an extended period of time. My sister (his mom) has set up a GoFundMe for him.

9

18

50

Richelle Sepulveda

@Really_Richelle

4 months

@laurenancona @kittywifclaws This overly relaxing, satisfying feeling after the meal, specifically from the "burning" feeling quenched. Very similar to the feeling of having been very hungry for a particular food, and eating just enough of the craved food that just "hits the spot."

4

0

50

Richelle Sepulveda

@Really_Richelle

2 years

@daire_shaw @magicgoeshere @EXECUTIVESTEVE If you ever talk to some Native Americans, they will understand! They probably won't want to talk too much about the mysterious creatures that live in their forests, because just naming them brings their attention, and you definitely don't want that!

0

1

48

Richelle Sepulveda

@Really_Richelle

2 years

And I was reading another one this morning that demonstrated how high cognitive tasks/focus actually cause a build up of glutamate at the synapse, and if it's not cleared leads to other neuro-inflammation. I wonder if that's behind the PEM some people get with cognitive stress?

2

8

50