Discover and read the best of Twitter Threads about #neisvoid

Most recents (24)

If you develop #longcovid, you will *not* receive the level of healthcare you are expecting to receive from the medical system.

Expect disappointment because there are *no treatments*. Nothing. Nada. ZIP.
Yes, there are treatments for POTS like BP meds, MCAS you can take antihistamines.

However, this doesn’t fix the *whole #longcovid picture* - which is what i mean by “there are no treatments”.

Let’s be honest here, the current treatments (like above) barely break the ice.
Read 4 tweets
By far, the most important events in the lifecourse of my daughter's #MECFS were two massive relapse events that severely degraded her baseline level of functioning. Hoping to crowdsource ideas from #Medtwitter and #NEISVoid on this phenomenon and how to study it effectively. 1/
A better understanding of exactly what happens during these events would help us make faster progress in understanding #MECFS and perhaps #LongCOVID. Yet this phenomenon remains dramatically understudied. We need to change this! 2/
The field lacks clear and uniform terminology for describing these events, which is one of many obstacles to studying them. For now I have settled on the term "massive relapse event" for these reasons: 3/
Read 27 tweets
🧵 ⭐️ NICE chronic pain guidance summary ⭐️ The word ‘psychological is used 27 times. ‘CBT’ 17 times. Recommends ACT- ‘acceptance and commitment therapy.’ 1/
Management = exercise. Psychology. Acupuncture. Anti-depressant. However in the ‘don’t’ list section it says don’t even offer paracetamol. 2/
However the first section of the guideline says ‘Offer a person-centred assessment to those presenting with chronic pain’ 3/
Read 10 tweets
🧵 ⭐️ let’s talk about exercise, post-exertional malaise and #MECFS ⭐️ Have you ever told your fatigued patient they are deconditioned and need to exercise? There have been some very eloquent studies that demonstrate why patients have been saying exercise makes them worse..1/
The 2-day cardiopulmonary exercise test (or CPET). Various measurements are taken while the patient is on a treadmill or stationary bike. What’s really interesting is the ‘2 day’ part. Most people if you do this test the day 2 results are the same or better….2/
When you do the 2 day CPET test in ME/CFS patients they are the same as controls on day 1 but WORSE on day 2. This is not normal physiology! Even patients with severe heart failure can produce the same results on day 2 of testing 3/
Read 14 tweets
2 yrs ago, to raise awareness for the #MillionsMissing due to #MECFS, I started a 🧵 on how tragic chronic illness has consumed my life

But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.

2 surgeries later... 🧵, 🎬 2

2017: I was Prof of #Epidemiology @PublicHealthUGA, researching #HIVprevention and #vaccine prep for emerging epidemics. I directed an epi training program @ICI3D. I loved my work & my amazing colleagues!

I was healthy & active 🚴🏄‍♂️ 🥁

Then, I bought a 🏡 and had it renovated. Jan 2018 I moved to the newly built master bedroom addition, I became sick.

⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects

Read 22 tweets
A question for people with #MECFS or #LongCOVID: in your experience, is post-exertional malaise a single phenomenon? Or is it possible there are distinct phenomena that are not being adequately distinguished, impeding understanding? #NEISvoid
With my daughter -- who has #hEDS, #MECFS, #POTS, etc. -- we have observed at least 2 and possibly 3 separate phenomena that all seem to fit the description of #PEM. Let's call them (a) "major crash," (b) "day to day PEM" and (3) "cumulative exertion PEM"
She has had 2 major crashes. These were biphasic events that appear to have caused severe damage lasting years. First major crash (2017) was what made us aware of her illness. She felt very hot in the morning. Then, some time after a long hike, she had whole-body chills/shaking.
Read 12 tweets
Are you neurodivergent? Does that include dysautonomia? Do you know viscerally the two are linked - but want to understand exactly how? I am composing a thread for you (yes, you) right this very moment. Stay tuned. #NEISvoid #ADHDtwitter #ActuallyAutistic #POTS #EDS
The manifestations of divergent neurotypes like ADHD are a complex function of dynamic external & internal* stressors. This makes the clinically defined subtypes (predominantly hyperactive/impulsive, predom. inattentive; combined type) largely inaccurate.
*such as dysautonomia
Two functions of the neurotransmitter norepinephrine or noradrenaline (henceforth NE) are relevant here. As a vasoconstrictor, NE increases blood pressure when the brain needs more oxygenated blood. NE also transports dopamine to the prefrontal cortex. Our adrenals release NE.
Read 15 tweets
🧵Thread - post-Covid cardiovascular issues incl. tachycardia, arrhythmia, POTS, inflammation.

Peer-reviewed & not p-revd. Different perspectives & findings.

This is not medical advice.
#Health #hearthealth #CovidIsNotOver #LongCovid #longhaulers #NEISvoid #chronicillness
Long COVID-19 and Postural Orthostatic Tachycardia Syndrome- Is Dysautonomia to Be Blamed?…
In Conversation: Long COVID's cardiovascular implications…
Read 21 tweets
@debbie_seymour I'm so sorry. How can we support you? The #MECFS community is here for you.

Are you aware of the #NEISvoid community for people with chronic illness? We're a great place to ask questions & get support. We're also a repository of life hacks for living with limiting conditions.
@debbie_seymour I don't know if it would help your husband understand, but this vid does a great job of explaining the physiology behind #LongCovid, #MECFS, and #Fibromyalgia:

Read 3 tweets
#NEISvoid has anyone w #MCAS rxns to medical adhesives done a patch test? My #MCAS referred me to dermatologist for contact dermatitis testing bc I asked abt safe alt bc medical adhesives diff to avoid. Test req contact for days / not showering. Worried abt COVID safety & flare
[food] Note that my current MCAS flare - 16 months & ongoing - started bc I reacted to adhesive on my heart monitor. It was itching as soon as I put it on & I tolerated it overnight before all hell broke loose & has continued since. My diet has shrunk to like 5 foods etc.
Test requires putting on patches on my back on Monday. Then not getting it wet till Wednesday when they take them off. Then I get rechecked on Friday. I usually change/shower as soon as I get home bc COVID & the idea of not showering imm is scary.
Read 5 tweets
“Maybe your doctor leaned away from you when you brought up your concerns and suggested you see a therapist. Maybe you feel really alone right now. Maybe you’ve been feeling alone for a long time.” /1 #NEISVoid
“I want you to know that you’re not alone. I want you to know that there are so many other people who feel uncertain and isolated and scared because something is happening with their bodies that their doctors can’t explain.” /2 #NEISVoid
“Maybe you’re wondering if this is all in your head. Maybe you’re wondering if you brought this upon yourself somehow … Maybe the doubt and the guilt and the wondering have stopped you in your tracks completely.” /3 #NEISVoid
Read 7 tweets
Sometimes if I meditate and focus on my body’s “lava lamp” pain waves, I’ll calm, then tense. Kind of buzzing. Then… SNAP! feeling from my neck down throughout. Sudden release. My entire body relaxes fully for a bit. Is this some kind of #VagusNerve release? #NEISvoid #meCFS
I always feel a LOT better after. I can’t always do it but when I can; it’s lovely. No pain for a short while. I’m entirely relaxed and feel full mobility. I don’t move much, I lie and enjoy it. Soon, I feel myself tense up again and the normal soreness and pain returns.
Almost half asleep, I can do it. Deep meditation and focus with intentionality. The snap is so sudden, the relief so great. It’s similar to orgasmic, in the build up to sudden release and after glow. Can anyone else in the #NEISvoid do this? Do you know what the sudden snap is?
Read 13 tweets
#LongCovid recovery story is long but short notes here:
#POTS confirmed with heart rate variability test & started on Ivabradine.
#MCAS treated based on clinical symptoms with Desloratadine, Famotadine, Montelukast-Cetrizine
#autoimmune assays done - #rheumatoidarthritis
Started on Methotrexate after all vaccinations. GI motility treated with Prucalopride.
Lung perfusion abnormalities but no cause detected (#microclots in blood) - treated with budesonide + tiatropium inhalers, ipratropium nebuliser & supplemental oxygen. #NEISvoid
Weekly IV infusions with Saline at home. Pulmonary rehabilitation. Eyes checked - connective tissue degeneration- tear film corrected with refresh tears & gel, special glasses & convergence exercises given.
Read 7 tweets
Chronically ill culture is having symptoms that would send most people to the ER, then saying "idk maybe it'll go away" and laying on the couch instead. #NEISvoid
Before anyone says this is irresponsible: Most ER docs aren't trained to treat chronic/complex patients so they typically can't help anyway. Also, $$.
This isn't a thread for unsolicited advice, so please don't throw it at people in the replies.

More info on why:
Read 3 tweets
I want to talk about the hot button topic of exercise and #LongCovid. I had an interaction with a doctor recently and when I said I had long covid, she said I should be on a graded exercise program to "start healing." The thing is, I have been getting better. 1/
In the last 2 months, I've been able to do some VERY light movement and it isn't sending me into a crash (yay!). I think doctors and the public see me doing a bit of exercise, and they think that's why I'm improving. And yes, it is certainly helping me 2/
build back some of strength that I'd lost being stuck in bed for so long. But, until I had a basic level of health, all exercise did was send my body into a full on crash, and I mean stretching for less than a minute would put me in bed for a day or two. 3/
Read 11 tweets
🧵 I would just like to say as someone who recently decided that I would try to qualify for #MAiD. That #C7 expanding state sanctioned sUicIDe to PWD is predatory and fucked.

Do I wanna die bc I’m in too much under-treated pain and drs can’t/won’t diagnose or treat me? #NEISvoid
Or do I want to die bc my life is falling apart? Bc everywhere I turn there is emotional trauma, grief and a crush of overwhelm? Bc I *feel* trapped by circumstances and poverty — by broken and cruel systems and people?
I can’t really tell you. Neither can any dr who would sanction my death. Bc it’s all of those reasons and more. What I do know is that for months, on both my better days and in my lowest moments. My mind keeps returning to #MAiD. #C7 opened a door, I once worked harder to close.
Read 10 tweets
For anyone wondering if @KTTape is ok to use on places with body hair, I just put KT, Packing, and Duct tape on my arm to compare for science. KT tape BY FAR was the best. Packing and Duct tape stung a bit. And Duct tape waxed my arm lol. #NEISvoid #EDS #hEDS
@KTTape does recommend trimming / shaving excess hair. My arm smarted a bit after but not uncomfortably. KT tape area stinging faded after ~2 minutes. Packing tape stung more and for 4 minutes. Duct tape stung most, still stings; it’s been 10+ minutes.… Partial Screenshot from KT Tape’s website. “How to apply
@KTTape has FSA and HSA eligible products. Here’s their normal cotton tape in pre cut but you can check out their store for other options. I get bright colors for fun usually but they also have a tan option. No dark brown unfortunately.…
Read 6 tweets
Neurodivergent and disabled people tend to have a "spiky" set of abilities so it becomes extremely important to be aware of all the internal daily factors that are an influence of us and especially to know how and to what extent we can control them.

I'm going to go through my internal factors that I am currently aware of and share both how they influence me and what I can do about them. I hope you find this process helpful.

Thread 🧵
#ADHD #ActuallyAutistic #NeurodiverseSquad #Disability #DisabilityTwitter #PTSD #NEISvoid
First, let's get toxic positivity out of the way. It is not a matter of "effort" and even if we were not disabled, sometimes there are still no good options. Having so many aspects of my self that are working against me means I'm starting from behind every day.

Read 117 tweets
#neisvoid DO NOT pay full price for medical bills if you can at all avoid it. You can probably avoid it. (Not always, but worth a shot.) A thread:
The most beginner tip I can give is (if you're able) ask for an "early pay" discount as soon as you get the bill. I've had offices that had never given a discount before do one just because I asked. #LongCovid
Next level: ask if the doctor can code tricky tests or procedures in a way that insurance is more likely to cover. Rifaximin for SIBO is $3k. Rifaximin for diarrhea is totes covered. Correct coding matters. #chronicillness
Read 10 tweets
Since so many people asked for details about treatment in my last #LongCovid thread, I thought I'd do a detailed thread on it. I'll start by saying that this was with guidance from my doctors. I know medical care is inaccessible to many but please be cautious.
Things that have helped me the most:
- d-ribose was the first thing that allowed me to get out of bed for more than a few minutes. I credit this with turning the corner from bed bound to "just" home bound.
- CoQ10 gave me some more energy and clarity.
- NADH is the third supplement that has made a real difference in my energy levels.
- B1 and B12 plus a multivitamin
- D+K vitamins
- Floradix for anemia
Read 12 tweets
🧵 1/
#MESpine #NEISvoid
In 3 years, I went from a primary dx of mod/sev #MECFS to a primary dx of hypermobile craniocervical instability, #CCI.

My skull-to-C2 fusion should look a lot like this.

Why did I even get screened for something so *rare*? Image
Well, hypermobile #CCI may not be that rare, especially for #pwME.
#MECFS patients are increasingly getting dx'd and treated for #CCI. #LongCovid pt's now too! See the article for more info on CCI.

BTW, cervicomedullary syndrome can result in PEM.…
Even the known triggers of #MECFS and hypermobile #CCI can be the same, notably infection here.

How can doctors differentiate btwn ME/CFS and CCI + ME/CFS?

✋I know - SCREEN #MECFS patients for #CCI

Imaging + surgical consult 1 = $1300 OOP. Ymmv

The crash sucked
Read 19 tweets
As a brown woman in academia, (and in a very white field studying Ehlers-Danlos Syndrome), I am so tired of my authorship being erased from my own work. Here are some examples, just from twitter. #NEISvoid #AcademicChatter 1/
This thread has plagiarised my paper on the Beighton Score (…) without citation to my work, only to get over 6x more attention than my own tweet of the actual published paper. 2/
There were even calls for the thread to be published and for the tweet author to be given first authorship... 3/
Read 12 tweets
I don't think people understand how expensive it is to stay alive with a poorly-understood illness.

I just finished reviewing my 2021 finances, and it cost me a smidge over $90k to care for my illness last year.

A tiny thread. 🧵
There are many expenses people don't think much about until they're forced to do battle with our health insurance system. And people don't realize how difficult it is to get insurance companies to even pay what they're supposed to pay out.

The $90k is what I paid *out of pocket*
My actual "burden" on the health care system was much, much more than that, as I was fortunate to have decent-ish insurance last year.

It is absolutely bonkers that instead of being able to find a knowledgeable doctor and be treated, I instead racked up several ER visits.
Read 30 tweets
If you're chronically ill, so much of your wellbeing comes down to individuals. A doctor who believes you, a boss who lets you wfh, a specialist who recognises your symptoms. Systematically you're doomed, and u just have to hope your path crosses with people who get it. #NEISvoid
The fucked thing is that people "getting it" is determined by things outside of your control. PoC are less likely to be believed by drs, and industries like hospitality etc, where your physical wellbeing is key to the completion of your work, are unlikely to be supportive.
This isn't really a thought-out tweet, I'm just reflecting on how much of me being okay is due to individuals who advocated for me, and how much of that advocacy is due to me being a white women with a Masters degree, in a "professional" job. And even still, it's been so hard.
Read 4 tweets

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