Discover and read the best of Twitter Threads about #NEISVoid

Most recents (24)

#NEISvoid I am trying to get our local backasswards medical corporation to set up my mother's patient portal correctly and they are insisting she needs to go somewhere in person to do it. Her next appts are all telehealth, because she's home recovering from a GI bleed. 🧵
Why is this shit so difficult!?! They set it up without connecting it to their organization, so no data has ever been added to her patient portal. 2 years of labs, visits, meds, etc.... Poof! You'd have to request them all on paper. 😡
And you can fax/email this organization a medical records request without ever seeing anyone in Medical Records in person, so why the in-person to give them your email address? Again, cuz we've already gone through all of this once two years ago and they couldn't get it right.
Read 14 tweets
I have created an email template to be sent to expressing concerns about the RECOVER study for #LongCovid. It can be copied/pasted & sent as is (please add your name at the end, after sincerely, before references) or personalized. (1/3)…
It is written from the view of any stakeholder, which (in my opinion) means it can be sent by #pwME, #NEISvoid, anyone w/ illness pre-Covid who stands to benefit from this research (even outside the U.S). Also, caregivers/family, researchers, HCPs. (2/3)…
It should take only a few minutes to send. At the very least, @NIH should hear from us. I would encourage people outside the community to read it to learn of current ongoing issues. (Will pin this tweet for a bit to make it easily found.) #FBLC (3/3)…
Read 4 tweets
I feel like we should be talking more about the GAO report on #LongCovid that stated, "The full magnitude of health and economic effects [of Long Covid] is unknown but is expected to be significant." a 🧵…
What is the GAO you ask? The US Government Accountability Office is a non-partisan agency that uses data to evaluate how much something is gonna cost us. That's it. Their mandate is to, "improve the performance of government, ensuring transparency and saving money."
After reviewing the data available on #LongCovid, the GAO concluded that it, "has potentially affected up to 23 million Americans, pushing an estimated 1 million people out of work."
Read 11 tweets
Ok #NEISvoid friends I think I need accessible “relaxation” techniques that aren’t any form of meditation/mindfulness. I keep getting stressed by various crap going on & holding it in my muscles & wrecking my posture & causing more pain in my hyper mobile joints.
Other things that don’t work for me: breathing exercises, many sensory things: no smells/food oriented stuff due to allergies. No audio stuff involving words bc HoH.
& def no form of CBT oriented things trying to convince me things aren’t that bad. Things are unfortunately frequently that bad rn. I just need to not have my joints wrecked trying to emotionally cope w them is the issue.
Read 4 tweets
If you've been following me since last year, you'd know that I got COVID then and have been recovering with #LongCOVID. For almost 6 months now. In this thread I want to bring awareness to some of the very generous people I've met in the group who really need your support. 1/n
Dave @D_Bone, with Angela @TheExtraFiles, hosts 24hr zoom chats for #longhaulers. Like many, he is no longer able to work because of complications from Long COVID. He created the @initfortheLHpod platform. Please support if you can ♥️ 2/n
Tracey @haziethompson is someone I've learned a lot from in the group. She is a former chef who once enjoyed cooking and serving up amazing dishes. Now, because of Long COVID she is unfortunately housebound and cannot work. Please support if you can ♥️ 3/
Read 9 tweets
Thanks so much to @IAmLoudPro for putting this up ❤️

This is the poem I tried to write for #DisabilityDayOfMourning this year, but the scale of it was too much. After couple of months, I finally managed to get the words down.


It is always hard to mark #DDoM, but I am eternally grateful to the archivists at @autselfadvocacy for doing the painful work I speak about in the poem, and orgs like @NotDeadYetUSA, @notdeadyetuk for always fighting for our right to live with dignity, not just die with it.

The last few years has confirmed for us just how willing ordinary people are to excuse our deaths. Over the coming years, as vastly more people become disabled in a hostile world, we expect to see the list of names grow.

Read 5 tweets
Fragrance free products is a #disabilty issue. People have various reactions to fragrance from skin reactions to breathing difficulties and sensory overwhelm. Fragrance free products need to be accessible to those who need it most. To help, I made a list of those I've tried
If you find this thread helpful and would like to compensate me for my time and energy there are links at the end of this thread with ways you can do that.

Some of the links I share are affiliate links. This means I may earn a small commission at no extra cost to you.
Fragrance is not the only thing that can cause reaction and formulations are always changing so ALWAYS read the labels and check ingredients on the packaging. If possible consult with a medical practitioner to evaluate your needs.
Read 26 tweets
1/14🧵 ⭐️ It’s a little late on a Monday but still time for a public service announcement about MAST CELL ACTIVATION SYNDROME (MCAS) ⭐️ If someone tells you it’s not real it’s because they lack knowledge…
2/ MCAS is when mast cells Ⓜ️ inappropriately release histamine and other chemicals resulting in multi-system symptoms. 🔥sometimes they release too much, sometimes at the wrong time. They get a little confused 😐
3/ we need mast cells- they are our first line of defence (innate immune system) and located in most systems in the body. If you are stung by a bee and it’s red and itchy- that’s histamine release from mast cells Ⓜ️
Read 16 tweets
🧵 ⭐️ Response to the NIH ‘long Covid’ study⭐️ I hate to break it to LC minimisers but it’s not the most detailed, controlled, comprehensive investigation into LC. It would be akin to doing a lung cancer study with no chest X-ray and saying the symptoms were due to anxiety. 1/
2/ They used a very small group of ‘post Covid’ patients. This is not the same as long Covid. There were 189 patients, 55% of whom had no symptoms after Covid. That doesn’t leave many to study.
3/ they had an over reliance on Covid antibodies as proof of infection or not. We know not everyone makes antibodies. In this study below 36% of patients didn’t. This matters as the control group needs to be just that- a control group.…
Read 23 tweets
Stop doing standard tests on #LongCovid patients and claim that they are physically alright because the results are normal. Medicine & Science have not bothered to develop proper biomarkers for post viral illnesses for decades, ignoring the pleas from patients, including #pwme.1/
The world has not seen a pandemic on the scale of what #COVID19 caused (last was the Spanish flu) and by definition, you have not seen mass disability on the scale of what #LongCovid has been causing. Use your brains and empathy - if you have either of them - & think! 2/
Why would millions of people sit at home, losing their appetites, mobility, health, livelihood (and lives, sadly, in some cases) after contracting Covid without an actual biological/physical cause? They cannot all be depressed, surely? 3/
Read 9 tweets
thanks to Ehlers-Danlos that old so-and-so it's a "gotta put on a corset to do the work of holding your organs in bc your slacker ligaments are dead asleep at the job" kind of day, chez lulu
Yall #NEISvoid folks know the "body behaving suboptimally, it's an off day" kinda fit Pale woman with long messy ...
(Spot the accomodations in the photo! 😋
Need the cane, gatorade, corset and face stars as accommodations for sensory and pain and heart, the eyeore sticker for remembering my friends love me, and the socks with my cat on them so he knows he is a star)
Read 4 tweets
I used to declutter every three to four months, until #chronicillness happened. When I came back to our home in NL after my treatment in India, I was shocked to see how it looked. It was nothing like the home that @anandkumarn & I had lovingly built together. 1/
Still, I didn't want to jeopardise my hard worn health (I hesitate to call it recovery as I'm in bed 50% of the day - I was 90% in bed before). So with the help of a lovely lady who is helping us, I've been tackling inch by inch. 2/
It is starting to look like our home slowly. Truly decluttering this time & giving stuff away instead of just putting them in a place I can't see. We are redoing our bedroom to look less like a patient's room & a place that I will truly love to be in. 3/
Read 4 tweets
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
🧵 ⭐️ 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

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