Discover and read the best of Twitter Threads about #chronicillness

Most recents (24)

Wondering about the terms PEM or pacing? Seen #StopRestPace & were curious as to what it referenced? Been in our community a long time & want easy ways to explain these concepts? Perhaps you have seen pacing misused & want to clear that up. We hope this thread helps! #pwME #PwLC A helpful thread on PEM, pa...
Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, & sensory overload can trigger PEM. What is PEM? Post-exertiona...
Sometimes exertion is misunderstood as exercise. Exertion is defined here as anything that stresses or strains the system. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.
#PEM #MECFS #LongCovid Exertion does not equal exe...
Read 7 tweets
My ex - who had covid initially at the same time I did & also never recovered - was hospitalized several months ago with severe lymphopenia and opportunistic infections. He died early this morning. I am beyond shaken.
Many of you know I have also been dealing with persistent cd4 lymphopenia and opportunistic infections. We were both infected in February 2020 - long before vaccines existed, before the virus was officially documented in our city, and before masking had even been discussed.
He was a vietnam veteran that served this country like millions of others when drafted at 18. The final years of his life were spent on the streets - blocks from the largest VA hospital in the nation. Like us, there was no help for him.
Read 8 tweets

Today is my second recovery day after going to see 7 yo grandson's playoff day. It was cloudy and unexpectedly cool, so I decided to risk being in the world irl.

I also played catch with him before the game. Afterwards I pitched whiffle ball curves to teach him how to hit a curveball. They were good curves and spooked him. Took maybe 30 pitches before he started to figure it out. We quit after he crushed one :-)

I also learned from my outing that watching 30 seven-year-old kids play baseball can just about trigger an #ActuallyAutistic meltdown. Take care and be safe!
Read 9 tweets
Disheartening things I find w/ #ChronicPain & #ChronicIllness is misunderstanding &judgement from others. Weight seems to be a big thing for others. Overweight or thin seems to be an issue. Is it though or are those "others" basing it from their reality instead of the reality of
#ChronicPain & #ChronicIllness. I'll share just one of the many examples I've experienced. Recently I had to shop in the little girls' section & buy the largest size little girls to find a #sundress that would fit!!!(still a little big)So I'm a fairly small person. I, literally,
also had major #abdominalsurgery 2 weeks ago. A friend gave me a ride to get my staples out yesterday. He, on the way home, asked about my exercise, &about how often I walk. Yes, he knows about #ChronicPain & #chronicillness. Unless someone is asking you for exercise health
Read 6 tweets
I'm so tired of being told : you need to change doctors, find someone who will listen to me etc. Do you know know what it's like in reality ?
First of all. There's no one available. They don't take new patients. Appointments are in months or years. Second money. Third if you
have severe mecfs or very severe you can't go and just find a new doctor. 4. i did that for years. No one listened. No one. Or if one did they had no Idea what to do or put me in danger or sent me to other doctors who treated me like not a human. 5. Each travel to another apptmt
undergoing painful exams being gaslit for years and treated like i wasn't sick it was not enough my pain concerns and words never mattered. 6. The crashes after each apptmt. Physical pain. Suffering. Until being bedbound for weeks and months. 7. The mental toll of all of this and
Read 24 tweets
What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"

Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
Read 7 tweets
🧵1) of 9 #DisabilityTwitter #DisabilityRights #Disability #chronicillness #ChronicPain #RareDisease Is our country 80+ yrs later treating our most vulnerable citizens any different? 👇 Just killing us in different ways.…
🧵🧵2) "the Nazi ideological conviction which labeled these persons "life unworthy of life".This country makes it near IMPOSSIBLE to get disability after paying into it via taxes for decades once we become ill. Medications unaffordable unless you're rich.Why? Image
3) Yr after yr & appeals we fill out COUNLESS FORMS. "The limited space & wording on the forms, as well as the instructions in the accompanying cover letter, combined to give the impression that the survey was intended simply to gather statistical data."
Read 10 tweets
Sneak peek at our latest #LongCovid preprint about microclot detection using imaging flow cytometry

By Simone Turner, Jaco Laubscher, @resiapretorius & @dbkell

These are 1st results from the instrument YOU funded by donating to @givewithkernls


Grey columns are using brightfield microscopy; black are using Thioflavin T

See the difference in size between #LongCovid & control microclots

There were statistically significant differences in mean size, number & other variables

More in the paper!

2/n Image
Why is this important?
Because flow cytometry is already accessible in clinical settings, unlike fluorescence microscopy which is mainly a research tool.

Big thanks to @gezmedinger @HarryLeeming @fearnley_k @Geraint6Jones @clarejdaly @loscharlos @ShaneyWright @j_b_kennedy 3/n
Read 7 tweets
1-How is the #WarOnPainPatients being waged, let us count the ways...
You're probably seeing an MD because OTCs aren't working.
You're told ibuprophen works well for pain & offered an RX for ibuphropen.
You decline as you've been taking it OTC for months.

You just refused meds.
2-If you counter any aspects of #TheGreatOpioidLie, citing facts vs fiction...

It's can be charted that you're emotional-hostile-agitated.
'Drug seeking' behaviors.
*Women are often labeled hostile just for being in assertive when dealing with people in positions of power. 😔
3-If you have a #chronicillness that includes fatigue & pain syptoms and you taking an opioid...

It's the opioid making you somnolent, tired, depressed, not your illness or pain.
And this can be used as an excuse for an MD to taper or discontinue opioids or even benzos.
Read 7 tweets
its so easy to tell immunocompromised people to just stay home if they are rightfully afraid of getting Covid - or the flu, or norovirus, or even just tue common cold (which can kill us), or whatever other germs the eugenicist plaguerates demand the right to spread. 🧵
The pandemic did usher in the age of delivery apps, which does help. But its not a panacea for meeting one's basic needs, especially for follks living on a shoestring budget - which certainly describes most immunocompromised folks who are sheltering at home,
denied the right to participate in society for the plaguerats' normalcy. 🧵
Read 13 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
Do ppl understand that ppl die from #MECFS?
Common cause is starvation as the stomach shuts down.

We're now seeing trend amongst #LongCovid patients; where many of those severely ill are seeing huge rapid weight loss. I'm begging parents to take action early if your child 1)
Has the signs of #LongCovidKids.
Majority of ppl who become severe do not start out that way. Rather they steadily decline.
Common cause of decline is pushing through PEM.This is why we talk about the importance of early diagnosis. Promise you as a parent if your child becomes 2)
Severely ill w LC, you'll need to know you've done everything to care for them from the start. There are many parents out there w sick children who
a) dont know its LC because they aren't educated about LC
b) are in denial.
Those children likely to become more sick as they 3)
Read 8 tweets
"When we (@Metabolic_Mind) mention mental illness we're referring to severe
#depression #bipolar disorder or
#schizophrenia. But everything we say also may have applied to #ADD #OCD #anxiety moderate depression, #PTSD and more." (1/12)
@Metabolic_Mind I have seen it SIGNIFICANTLY improve or lead to remission in literally all of these disorders in my private practice and via my online Brain Fog Recovery Program. (2/12) #therapists #counselors #mentalhealthcounselor
@Metabolic_Mind It's ok to have hope that you can feel better. When you are suffering from any of these disorders, hope is a little scary. You don't want to be disappointed. Sometimes it's easier to practice acceptance of how you are feeling. (3/12) #hope #spoons #chronicillness
Read 12 tweets
🧵Let’s do a thread on how often COVID and long COVID are trending

Maybe this will help @JoeBiden @KamalaHarris @POTUS @VP @WHCOS @WHCOVIDResponse @NIH @CDCgov @CDCDirector @dscc @dccc @DNC take this more seriously

Dead, disabled, sick people don’t work and aren’t happy voters.
Jump in, add your own anytime!
Read 11 tweets
Some articles on ME/CFS are ignorant, but @nataliesurely‘s @newrepublic piece last month is so shockingly bad, so suffused with CBT/GET Brigade rhetoric that it’s hard not to believe it’s an exercise in bad faith. 1/7
The familiar tropes are all there, from the suggestion patients disparage mental health disorders and turn to illness because it gives them identity to misleading descriptions of what PACE offers and represents. 2/7
One line particularly stuck in my craw, though: “Considering PACE’s ultimately rather mundane finding, the tenacity of the response [from pts] is quite surprising.” The line implies unreasoned outrage on the part of patients. 3/7
Read 8 tweets
Its my 20 month vaccine anniversary today.

I now take: ketotifen, sodium, statins, anticoagulants, antiplatelets, H1 and H2 antihistamines, plus vits/mins to address deficiencies and high needs, and some supplements

I still feel like crap

#postvacsyndrome #LongCovid
These meds address:
😞Mast cell activation syndrome
😞My inability to produce aldosterone (endocrine dysfunction)
😞Endothelial damage
😞Platelet activation
😞Unexplained hyperhomocysteinaemia (i.e. no MTHFR variant)
Luckily for me, people believe me. But some only seem to believe me because I agree with them about other things, because i take issue with the same people they take issue with, because i havent gone on media they dislike

And that is a HUGE bias we need to overcome
Read 11 tweets
Lots of sadness about Twitter potentially going or significantly changing among the #LongCovid & #ChronicIllness communities. Also remember how It amplified voices that could’ve not been heard otherwise on issues like #pandemic #science #racism #GenderEquity. But don’t despair 1/
We know how to do it now so we’ll do it again. Preferably on platforms not totally controlled by billionaires and not using our connection to gain massive profit and increase inequalities. I’m an optimist on this. Because life is change. Nothing stays the same. However 2/
It’s important that those who found solace & empathy on here don’t lose that. I’m now using Mastodon (non-profit SM platform with far less hostility and toxicity so far) and I see a place for less heard communities getting established there. Find me on 3/
Read 4 tweets
Popular culture does not prepare us for the reality of #disability and illness. Here are 7 facts and personal observations from me (ie: not applicable to everyone): 🧵

1) Illness and disability are common human experiences. ie: Not rare, and not because someone is cursed or bad
2) #ChronicIllness is defined broadly as conditions that last 1 year or more and require ongoing medical attention or limit activities of daily living or both. Chronic illness is very common and effects an estimated 40% or more of the population. Again, not rare.
3) 'Most' disabilities and chronic illnesses can be improved in terms of symptoms and quality of life, but won’t be ‘cured’. ie: You will most likely have to live with it for a long time. This is true even though you're doing ‘the right things’. See: positive thinking, kale, etc
Read 9 tweets
How do you know if you have #Dysautonomia/#POTS?
1/6 Dysautonomia/POTS is a common concomitant condition in complex #chronicillness. Normally our #autonomicnervoussystem (#ANS) responds to changes in position from lying or sitting to standing.
2/6 Often in chronic illness, the autonomic nervous system does not work properly and a change in position causes the heart rate to increase to compensate for low blood vessel tone (POTS) or the blood pressure decreases upon standing (#orthostatichypotension).
Read 7 tweets
Just read the @NYMag piece about #longcovid and I've got a lot of critiques of it - as a journalist, as an editor, &, of course, as a person living with complex chronic illness. Briefly, here are some of the issues I see, ones I think turn up in a lot of magazine pieces:🧵
First, the piece conflates patients with #longCOVID and #POTS who might be helped by exercise rehab (done right--itself hard to find) with those who will be harmed by exercise. There are different groups. Important to make fine distinctions as a science writer.
I am a patient with #longcovid and #pots who has benefitted from exercise, but for the first months of #longcovid my dysautonomia was so bad that exercise led to days-long crashes. This is not complicated to grasp/understand/message--backed up by research; see @PutrinoLab etc.
Read 16 tweets
In the very beginning of the pandemic, I created the hashtag #multiyearpandemic

2023 is approaching and we are seeing it span out in reality.

1) #COVID19 is nowhere near endemic status.

2) Mathematical modeling 👉 it’s going to take ~10 years to reach it.

This highly contagious virus has all of the necessary ingredients to ensure long term staying power. Millions will be disabled for life.

#COVIDisAirborne #asymptomatic #chronic #chronicillness #disability #longcovid #LongCovidKids
Here are the equations, if interested.
Read 5 tweets
On this day last year, on the eve of my husband's birthday, we all felt hopeless. #LongCovid had taken almost everything away from me & I wanted to die. Today, I cooked him his favourite meal & danced with him. I didn't realise how happy we were until I watched this! #NEISvoid 1/
@anandkumarn is a remarkable man. Smart, intelligent, charming, kind to a fault, fiercely protective of his family, a wonderful son & father, a well respected professional. He is the most loving & devoted husband a girl can dream of - a true partner & a prince among men. 2/
He is not faultless, nor is a Saint. He has, however, worked hard to accept his mistakes, learn from them, make amends & be a better man every day. He deserves more happiness than he now has & I will do everything in my power to get there. 3/
Read 5 tweets

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