Discover and read the best of Twitter Threads about #NEISVoid

Most recents (24)

chronic illness hygiene hack:

I finally decided to try getting a hairbrush made from natural materials because of all the hype about distributing the oils throughout your hair

"too tired to shower" periods are INDEED much less...greasy

there's a lot of boar bristle brush guides out there, but I was hoping for something with a different texture because bristly is a sensory nope for me

I found this list very helpful in finding a brush (but slightly spendy fyi)…
also I've been struggling to find a conditioner that works with my hair type, doesn't make my seborrheic dermatitis worse, and also isn't an MCAS trigger

I honestly think just brushing my natural hair oils throughout my hair is working just fine for me
Read 4 tweets
Needed a loan last week to cover hotel, so need $740 for hotel by Sunday and $500 ASAP to pay back loan in case I need to retake one.

Can NOT survive the streets at all. Please help me spread word! Anything helps!

Could I get as many friends sharing the above post as possible? I keep running later and later, closer and closer to the absolute end of my survivability. I'm scared as heck and need a LOT of ongoing help.

Read 4 tweets
Just doing some digging. #Pain is extremely nuanced. And the approach should also. W my kids #health & #pain there has been continued lack of knowledge, assumptions, & unwillingness to understand.
➡️#Anatomy of those that had #TPAIT & lack of understanding
by many docs 1
how this can impact #pain
➡️ Not identify or understanding impact of #MalabsorptionSyndrome
➡️Assumption that removal of #pancreas should immediately ‘solve’ issue of #ChronicPain
➡️ #GastricEmptying issues
➡️ Age of my kids (too young to have #pain)
➡️ Lack of 2
understanding & identification of #MedicalTrauma
➡️T3c #Diabetes
➡️ Impact of #NASH on #pain & options for #care

There are numerous factors that are critical in #Treating an #ChronicPain in #Individuals. They list of few listed above that are factors w my kids, have often 3
Read 8 tweets
1/ New @patientled paper alert!

Reproductive health issues after COVID are well known among #LongCovid patients but are not adequately studied.

For @FrontRehSci, we reviewed studies on repro health impacts of Long COVID & associated conditions in women:…
2/ There has been a huge need for this work and we're excited to say it is already the most viewed article published by @FrontRehSci so far in 2023! #LongCovid Four-panel diagram listing ...
3/ Studies show that people with #LongCovid and associated illnesses including ME/CFS, POTS, and CTDs like EDS report multiple menstrual health issues including disabling periods & severe period pain. #pwME #NEISvoid
Read 10 tweets
Seeking #pwME (pre-COVID w/ or wo/ viral trigger OR COVID-triggered) for a £ online questionnaire examining medical stigma & social media use. Info below, direct questionnaire link & unroll @ end of 🧵. Please RT unrolled 🧵#MECFS #myalgicE #LongCovid #pwLC #NEISVoid(1/18)
Compensation: £15 Amazon voucher for full completion (emailed to you) with partial compensation available (2/18)
Eligibility criteria: a) 18 years+, b) View &/or engage with social media content posted by &/or about ME/CFS &/or Long-COVID at least weekly, c) Currently reside in/received diagnosis, & most or all care in UK (3/18)
Read 19 tweets
You'd never guess - from the name - what Chronic Fatigue Syndrome 𝘳𝘦𝘢𝘭𝘭𝘺 is.
A lot of doctors don't know either.
According to current research, #MyalgicEncephalomyelitis (ME/CFS), otherwise known as "Chronic Fatigue Syndrome," is a neuro-immune condition with fluctuating physical and cognitive symptoms. The gloved hands of a scien...
Some people get ME/CFS after a virus, but in others it develops gradually without a known trigger.
The symptoms can range from mild to severe, it’s often highly disabling, and it is not rare. The exact causal mechanisms haven't been nailed down yet, but research is getting closer
Read 12 tweets
My aunt was institutionalised on account of severe panic attacks, anxiety & self harm tendencies. My father, who believed his sister when she said it happened only around her menstrual cycle, took her out of that place (against her husband's wishes) & found a gynecologist. 1/
She was found to have severe lesions in her uterus (this was 30 years ago, endometriosis was not a term my father said the doctor used) and was advised to have a hysterectomy. My mother nursed her in our home after the surgery. In 2 months, she was a totally different person. 2/
2 years ago, when I received my hEDS diagnosis, I called her & explained about it. My father, once again, took her to a rheumatologist who confirmed that she was definitely hypermobile (which is why it took a long time for her to get an arthritis diagnosis). 3/
Read 7 tweets
So, on top of the constant exhaustion and everything else that comes with #MECFS, I've figured out that I'm having anxiety attacks when trying to sleep.

Like, the fear of the dark, jolting awake, feeling like I'm about to throw up, etc.

It's like my body is desperate to get to sleep, but terrified of actually falling asleep.

It doesn't help that I'm hyper-sensitive to all the noises & light.

There's this incessant humming, every night, all night, coming from *somewhere* and it's really fucking annoying.

Not to mention the constant traffic driving past the house...
Read 4 tweets
in a continuation of my microbiome research on myself, I am trying a probiotic... for my sinus microbiome

I'll post more details when I have more than a few days of data, but so far? I have been able to stop using my nasal sprays, and my sinuses remain unclogged 🤞

For contrast: typically when I miss a single Neti pot use or twice daily nasal spray

I get visible bruising along the sides of my nose, instant headache, and it takes like three days until I can breathe through my nose
*whispers* I have also been outside during peak DC Spring pollen season, without a mask, without deep regret for my life choices
Read 7 tweets
does anyone have any research papers about what mast cells are *supposed* to do in the digestive tract?

seeing a lot of papers about dysfunction, but honestly I always find it easier to troubleshoot when I understand how something works in like, a Platonic ideal



For possible help finding info on this (see above tweet)
My general sense is that mast cells are responsible for sending two types of signals to the digestive tract:

Yes, it's safe to digest food rn

Nope, it's fighting invaders time, please pause digestion during this emergency
Read 5 tweets
I have been down a research rabbit hole for the past couple days, and now I'm coming up for air and sharing with Twitter

Today's topic: new research on the glymphatic system, and potential implications for Dysautonomia (and like... honestly every neurological issue)

First off, what the heck is the glymphatic system?

Well it's basically how our bodies clean gunk out of the brain

Including the leftover products from making/using energy, as well as immune waste
Clearing waste products out of the brain is Important, because some of them are neurotoxic

Meaning they can damage the brain if they stick around

Glymphatic System Problems (tm) have been documented in a number of neurodegenerative conditions, including Alzheimer's and MS etc
Read 50 tweets
Totally agree. POTS is now much more prevalent. Around half* of people with Long Covid have POTS ( around 1.5% of population) and add to that those who already have POTS- over one million people could have POTS in the UK.
* estimates vary for prevalence of POTS in long Covid from 15-50%. From experience in long Covid clinic it is at the higher end, if not even higher.
Recent article in BMJ on POTS. Starter article for when to suspect, how to test, investigations, medications.
POTS= postural orthostatic tachycardia syndrome
Heart rate goes up on standing but effect may take several minutes&many don’t feel faint.…
Read 4 tweets
Gonna do a quick 🧵 on hip labral tears, since I recently got diagnosed with this

There's frequently a long diagnostic delay for these types of injuries

They are also relatively common in people with EDS, hypermobility, and/or connective tissue disorders

First, what the heck is a "hip labral tear"?

Ok so the hip joint is a ball and socket joint, which is what lets our hips rotate in multiple directions

There's a layer of cartilage lining the joint acting kinda like the shock absorbers on a car

It helps protect the hip bones
The cartilage lining your hip joint is called the "labrum"

And it basically wraps around the top of your femur (technically the "femoral head") inside the ball and socket joint of the hip

This cartilage can tear, and that is called a "hip labral tear" or "torn labrum"
Read 48 tweets
Millions are missing
And the cooper’s wife is too
So we hold our silent vigil
For a girl in a gown too blue
Lost in halls and hospitals
A silver talisman bears true
The diagnosis they doubted
With “Maybe it’s just you?”
“Maybe it’s your fault
Did you ever think it might?
It sure looks like anxiety
Caught in fight or flight
This isn’t an emergency
I’ve no time to spare tonight
For another hypochondriac
Who thinks her Google search is right”
The words echo again
We’ve heard them all before
Generations of us girls
Lost to fable and to lore
Seal wives and fae women
Changelings left by the door
You wouldn’t hear our screaming
So now you’ll hear our roar
Read 15 tweets
On April 5, 2022, I lost my words
It started with a feeling of numbness spreading down my left side, quickly growing prickly and painful. I felt very sleepy, like I was shifting out of consciousness.
The next day I felt some numbness and weakness in my face, and a growing headache. By that night, my speech was becoming slower, slurred.
Read 25 tweets
[medical BS, medical diet]

so I talked to my GP about my blood sugar issues, which I was able to do because I brought one million snacks with me

and she offered to write an order for a continuous glucose monitor, even though she thought an insulinoma unlikely


[medical BS, medical diet]

skipping over the hassle that was trying to fill the prescription (which involved Herculean assistance from my mom and the pharmacist)

I am *definitely* having a lot of hypoglycemic episodes

Like I didn't expect it to be this bad
[medical BS, medical diet]

I'm currently awake because the dang hypoglycemia alarm went off again

I kinda feel like that time I ended up babysitting a sick, teething baby who screamed the entire time

Exhausted, trying all the tricks, sobbing "what do you want from me??"
Read 10 tweets
Possibly niche question:

Since they started, my post-viral cognitive issues (and honestly, some of the movement ones) have really felt similar to every time I've had Autistic burnout

Is that a thing? Like, can a viral illness cause Autistic burnout?

[food intolerances [

In addition to just all the Inflammation and everything, this particular round of illness just... completely wrecked literally everything about my routine, including making many of my stims and safe foods...things that made me physically ill
Alternatively, maybe Autistic burnout is also caused by neuroinflammation? So that's why parts of this post viral giant MCAS havoc flare feels so similar to Autistic burnout?
Read 9 tweets
#LongCovid treatment update:
As promised to my fellow #NEISVoid folks, here is a full list of my medicines, supplements, medical devices & rehabilitation in my recovery journey.
1. #POTS (Hyperadrenergic) - Ivabradine, Amlodipine, IV Saline (every 7 to 10 days as needed). 1/
2. #MCAS - Desloratadine, Montelukast, Cromolyn Sodium (Cetrizine + Prednisolone for rescue)
3. Rheumatoid Arthritis - Methotrexate, Paracetamol, Diclofenac Cream
4. #asthma - Budesonide/Formeterol, Ipratropium Bromide, Salbutamol (Rescue) 2/
5. GI issues - Pantoprozol, Prucalopride
6. Eyes - Olapatadin & Cromolyn eye drops, Refresh Tears, Refresh Eye Gel
7. Supplements - Calcium, Vitamins C & D, High Potency B Complex
8. Hypermobility - Braces for shoulders, ribs, wrists, elbows, knees & neck as needed 3/
Read 7 tweets
I mentioned earlier in the week that IPSO are't willing to create guidelines on reporting disability because they don't get complaints. They asked me to provide 5 recent examples of media ableism so please drop examples below #DisabilityTwitter #NEISVoid
Ideally it must be from an IPSO participating publication. However this includes Daily Mail, The Sun, The Telegraph, The Times, The Mirror, Metro and more.…
And of course please send me any current stories to complain about
Read 4 tweets
I really wish I'd paid more attention to biology & chemistry in school! Learning about the pharmacodynamic & pharmacokinetic properties of medications is truly fascinating. I'm so enamored by the cytochrome P450 family of enzymes & the highly important CYP3A4. 1/ #NEISVoid
There is a long list of drugs which are either substrates, inhibitors and inducers of CYP3A4, which determines how these drugs are metabolised. Grapefruit juice can also inhibit this enzyme, which when coupled with a moderate or strong CYP3A4 inhibitor drug can be dangerous. 2/
While it may not directly cause QT prolongation, combining two drugs (one of which may cause QT prolongation) which are metabolised through this enzyme can lead to increased levels of this drug, increasing the risk. 3/
Read 13 tweets
pros: had a good appointment with my GP where I explained all the weird things about my headaches that make me think it's not a migraine

cons: my GP agrees that whatever is going on probably doesn't have a diagnostic code or like, any well-researched treatments


I explained some of the things I've been doing that have been working

My understanding of current research around positional headaches and EDS/MCAS/POTS

And possibilities indicated by extremely hot off the press medical research
My GP was like, "well we're officially outside the bounds of things I'm familiar with, so I don't know enough to say whether you're onto something....but I also don't immediately disagree with anything you've mentioned"
Read 34 tweets
so fun fact. if you sprain your ankle or something, tissue repair is supposed to go like this:



Make more collagen (etc) and repair what's damaged

If you're perpetually inflamed because of immune system shenanigans, this process gets borked

Also, I know this is going to sound fake

But apparently the "inflammatory phase" after an injury lasts...a few days




(I guess if your immune system isn't perpetually in fight mode)…
This is *probably* part of why there's a lot of overlap between MCAS and EDS

EDS causes all kinds of connective tissue injuries

Mast Cells are... theoretically supposed to help rebuild that connective tissue
Read 18 tweets
🧵 Doctors who haven't experienced poverty should have to live on an SSI level income and without insurance for a year. Here are things they would think twice about saying: (1/?) #neisvoid #disability
"Why haven't you gotten your labs done?" (Because I can't afford the fees or transportation) (2/?)
"Just get this OTC med. It's super cheap." (Maybe for someone who has $30 a month to spare.) (3/?)
Read 6 tweets

To all those remaining on Twitter in #NEISvoid, #MECFS and #LongCOVID circles... this is a big deal.

Looks like RECOVER is trialing exercise and CBT for #LongCOVID. Guess we have our reason why they were so keen to exclude #MECFS advocates! A 🧵
All along, #LongCOVID and #MECFS researchers, clinicians & advocates warned that RECOVER was going to be a colossal waste of time & money if they tested for values we already know are normal in infection-associated chronic illness, & therapies we already know do not work. (2)
Researchers, clinicians, and advocates begged-- in some cases, literally-- RECOVER researchers to connect more genuinely with the community rather than as a hoop to jump through so they could claim to have done so. (3)
Read 19 tweets

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