Discover and read the best of Twitter Threads about #chronicillness

Most recents (24)

Hashimoto’s Thyroiditis

Over 95 percent of today’s thyroid disorders, including Hashimoto’s, stem from a viral infection. (The other 5 percent come from radiation.) That virus is Epstein-Barr (EBV).

After a long incubation period—typically in the liver—EBV.. [1/4]
..begins its journey to the thyroid, and then enters into the tissue there.

Over time, the viral load will weaken the thyroid, making it less effective at producing the hormones the body relies upon. [2/4]
As time passes, in many people the EBV will also slowly inflame the thyroid, leading from a case of hypothyroidism to a case of Hashimoto’s thyroiditis. [3/4]
Read 4 tweets
"Data on l#ongCovid, reaches from the past and further into the future, as scientists attempt to gain a better grasp of the collateral damage the virus has left in its wake after infecting roughly 60 percent of the US population in the past two years."
" Some of those experts are still keeping tabs on cases as a general sign of the trends on the ground and because of the potential effect of long Covid to have a lasting effect in even mild cases." #longocovidkids
#COVID19's long-term consequences is on #longCovid. Such long-term symptoms after an infection have loomed large over the pandemic, inspiring fears that a mild case of Covid-19 could still end up affecting patients for months after they ostensibly recover."
Read 6 tweets
Today, @AsthmaIreland made a public statement in support of Minister @EamonRyan's proposed Solid Fuel Regulations. We called on all parties to support the regulations in a bid to end the 1,300 premature deaths caused annually by fine particle emissions from burning solid fuels.
The new regulations would ban smoky coal and wet wood, and prohibiting the commercial sale of sod turf, will save lives, but provide for continued turf extraction by those with turbary rights and distribution within small communities. @Dept_ECC
Air pollution can cause as well as exacerbate #chronicillness like #COPD, #asthma, heart disease and #stroke, #cancer, #diabetes and #dementia. Irish clinical research also links spikes in air pollution with increased hospital admissions for asthma and heart disease @roinnslainte
Read 10 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
I've been thinking again about how folks don't understand being too sick to do the things they recommend and I remembered I already wrote about it in 2018 when I made a list of shit people have said I NEED to do.…
Self massage and yoga, for example are great and will most likely make you feel better except there's times when even gentle yoga is too strenuous and not everyone has the mobility, dexterity or strength to massage their own body or do yoga.
What a lot of people don't get is that a lot of chronic illnesses are degenerative. When you're diagnosed you know you won't be cured but no one tells you that you're going to get worse and it everyday brings new challenges.
Read 10 tweets
(1/15) PEM explained
When I woke up the day after jogging, I felt terrible, although terrible is probably an understatement. It is a feeling that healthy people can hardly imagine. It feels like having a flu, a hangover and a jetlag at the same time.
(2/15) At that time I wasn’t able to make the connection between yesterday's jogging and the terrible feeling the next morning.
Today I know that I experienced my first PEM back then.
(3/15) What is PEM?
PEM stands for Post External Malaise and refers to the worsening of symptoms after minor physical and/or mental exertion.

PEM occurs immediately after a performed activity or with a latency of approx. 12 to 48 hours thereafter and may persist for several
Read 15 tweets
1/🧵 I think Chris Rock wouldn't have made a joke about Jada's illness if more folks were educated about the high prevalence of autoimmune & other chronic disorders.

#chronicillness #Spoonies #autoimmune #Alopecia #women #health #ChronicPain #chronic #illness #SickNotWeak
2/ As a woman who lives with multiple immune-related disorders, when a comedian makes a joke about chronic illness, I feel unseen...not just for me, but for all my fellow #chronicfolks. Does Chris Rock have any idea what Jada goes through to live with alopecia? Probably not.
3/ As a country, we need to create more dialogue around chronic illness, and especially autoimmune diseases. They are so prevalent yet they are usually talked about in whispers....'Oh, she has Crohn's.' Cancer used to be spoken about in hushed words, too.
Read 5 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
While #science thought us that we can even cut and paste #genes with #CRISPR technology…even with that we only influence 3% to 5% of #chronicillness. The rest depends on #how you #live your #life!!! So how do we #SelfRegulate our #body?
1. Good #sleep is more important than most think! What happens during sleep? The fluctuation of consciousness…that we call the waking state. But in many wisdom traditions of the world, the waking state is merely a lucid dream that consciousness is having…
Read 41 tweets
Two years ago today that I contracted a mild case of #CV19, before vaccines, before masks, before lockdowns. My life has been turned upside since by #longcovid with waves of frightening, debilitating symptoms, desperation and deterioration in mental and physical health 1/12
From March 9th 2020 my health went downhill - constant crushing chest compression and pain, a constant feeling of suffocation (covid strangle), joint and muscle pain, fever, dizziness, cognitive impairment, ruinous insomnia, terrible gastro-intestinal issues (nausea, reflux) 2/12
The worst being the claustrophobic chest compression (like an anvil on my chest) and inability to breathe properly, or get a proper lungful of air for every second of every day, 24/7, for close to a year. Fuck me I will never forget how that felt. It’s traumatising. 3/12
Read 12 tweets
What is ME/CFS?
In short, in its severe stage, it is the worst non-fatal physical disease you can have.

ME/CFS is a severe, physical and complex disease, usually caused by a viral infection. Because so little research has been done on it, scientists are not sure about the
underlying cause yet.
An incorrect response of the immune system to an infection is likely which then, as in a chain reaction, leads to a dysregulation of the immune system, the nervous system, the endocrine system, the energy metabolic system and the cardiovascular system.
The disturbed immune regulation also leads to a sustained T-cell activation and a reduced function of natural killer cells.

Who is prone to develop ME/CFS is also still unclear. There are probably two factors:
-An infection at the time of high physical activity or stress load
Read 9 tweets
Please check out our piece on @NBCNightlyNews tonight!

Awareness & education are key in propelling the #LongCovid & #chronicillness community forward. #Longhaulers in the millions are being failed in healthcare & social supports.

Options have run out. #LongCovidActionNow
We want to thank @NBCNightlyNews @CynthiaMcFadden & @KitRamgopal for highlighting the struggle #longhaulers face trying to access benefits.

We hope to see @POTUS address the devastation of #LongCovid in the upcoming #SOTU address & take immediate action to help millions.
Our founder & president (featured in the story @K_Bishof ) can be reached at or you may check out & contact us through our website or on Facebook
Read 5 tweets
1/5 For anyone who wonders what severe ME looks like, this is how I have spent 90% of every day for the last 10 years. It is a living hell. It is incredibly common, and incredibly severe, but is ignored by society and by medicine. #MECFS #Chronicillness Image
2/4 ME is twice as common as MS and just as severe according to the NICE guidelines issued to GPs. However, doctors receive almost no training whatsoever about ME. The funding is pitiful, merely a fraction of other chronic diseases.
3/5 ME causes more ‘functional severity’, and has a higher score on the DALY chart (disability adjusted for lost years) than any other disease. Immunologist Nancy Klimas once said ‘I have spent my entire career researching AIDS and ME. Given the choice I would rather have AIDS.’
Read 5 tweets
On the top picture, you see me.  
Back then I enjoyed life and did not worry about the future. I had just finished school and couldn't wait to see what life had in store for me. I was a very sociable person and loved having people around me. I lived a very active life and there Image
was hardly any party I missed. Photography and travelling were my great passions. 
On the picture below, you see M.E.  
A severe and utterly frightening disease that hardly any research has been done on. This disease is to blame for the fact that I have lost everything about my
old life. Here I am getting another infusion because I am in such a bad general condition again. 
So, what happened between the two pictures? 
I developed Myalgic Encephalomyelitis / ”Chronic Fatigue Syndrome” after a mild virus infection. (hard to pronounce, even harder to
Read 8 tweets
1/? My region is bracing for extreme weather. A blizzard - a whole lot of snow & hurricane force winds. We're going into this with diminished resources & it's reminiscent of how I felt when I still didn't know how to pace around my #ChronicIllness.
2/? I'd burn thru my own resources (or someone would do it for me) & then when I needed them to deal w/ something that could easily be a crisis, I didn't have what I needed to get thru it without a total disaster. I feel like my entire state has done this wrt COVID, & now we're
3/? in trouble. My entire state was ok with the costs (b/c it was only the unvaxxed, the old, the sick, people who were "unwell to begin with" who they thought would bear them) of burning thru our resources like they were easily replenished. They weren't. Now, will we have
Read 6 tweets
#Medium #Mediumship, was reading an old #Tufts@TuftsDaily⁩ article from 2008 interviewing ⁦@jessicaalba⁩ about her film #TheEye, watched the trailer:
you do see how see people died, though, if contacted by the deceased, they share their personality, images of what is relevant, what they think is, which can be difficult; I take #antidepressants, and, am #healing myself from illness, some #trauma, too, and, was seeing more,
earlier in my healing, and believe it is crucial to have a filter/level of #health with, a pretty well-known #medium told me he also got very sick with #pnemonia, I had #mycoplasmapnemonae, in #MeCFS #CFS, had #Lyme #LymeDisease, too, and, the information is for #healing,
Read 39 tweets
Covid #LongHaulers please take note.
Those in the #MEcfs community has been down the Post Viral Sydrome road for decades now.
The CDC is fully aware of our plight, but has done little in the way of research or help.
2-It begins, usually, with an infection.
For the majority of #MyalgicEncephalomyelitis pts it was the Epstein Barr Virus. But there are other infections that lead to #MEcfs as well. In almost every case the person knows that from that point, they were never the same again.
3-For some the progression is slow, fits & starts of decline.
Many continue with some sense of 'normalcy' in life for years. For others the onset of their post viral syndrome happens immediately and functional decline deterioration of all body systems is rapid.
#LongCovid #MEcfs
Read 10 tweets
Dr Rochelle Walensky @CDCDirector said on @GMA "the overwhelming number of death [sic] over 75% occurred in people who had at least 4 comorbidities, so really these are people who were unwell to begin with, and yes really encouraging news..."
I have 4+ comorbidities that I live with daily. Does the @CDC think that #ChronicIllness means practically worthless? I hear an echo of Scrooge in Dickens' A Christmas Carol, "If they would rather die, they had better do it, and decrease the surplus population..."
Dr Walensky, I know I'm no longer as vital a contributor to the #GNP than I once was, that I am more liability than asset in your ledger, but I still contribute to the emotional and spiritual richness of our society by my actions and even by my needs being met by those around me
Read 6 tweets
I'm going to be sharing some mutual aid requests. Holidays, extreme weather events from #ClimateEmergency, COVID surges, bad public policies, systemic oppression .... people are in need. We will also be viewing adorable pictures of cats. photo of a brown and black ...
Help out with some 💵, QT or RT for circulation.
Cat tax for #MutualAidRequest. It's my sweet girl Anya again, this time considering a salad. NO. Not for you my dear kitty.
Also, does anyone actually know what kind of plant this is?
#PlantIdentity #PlantParent #CatParent Brown and black shorthaired...
Read 35 tweets
There has been a lot of talk on Twitter lately about the difficulties in applying for DSP &/or NDIS (see quoted thread below). Yesterday @AllergyWhispers & I were talking about this article of mine wherein I talk about states of health and society. (1/3)…
It occurred to me, my generation is effectively the first generation in human history with an appreciable number of chronic illness patients in society. This is because NOW medical science can keep us alive, whereas historically that was not possible. (2/3)
This simple fact may go a long way to explaining the issues society generally has in accepting chronically ill people (see my article in tweet 1) and the specifics of the difficulties around qualifying for support such as the DSP and NDIS. It is all linked. #chronicillness
Read 4 tweets
something i think doctors don't always appreciate:
diagnoses are important to patients, even if there's no treatment


#MedTwitter #chronicillness #DisabilityRights
im sure there's other reasons but key things overall i think are:
1. a diagnosis gives you limits - what treatment can and can't be tried, what can trigger things, what's the prognosis, etc
2. it gives patients a community - there's tonnes of groups for people with all kinds of ailments, conditions, illnesses, disabilities. being able to talk to someone with a shared experience helps make everything less shit
Read 12 tweets
I'm so dissapointed in the doc who has been my best PCP for years #NEISvoid #DisabilityTwitter #EhlersDanlosSyndrome I have cci and it got significantly worse the last 2 months. I've tried to deal with it myself, but its been a major issue for pain, mobility & neuro symptoms #eds
that nothing helps. we changed from a pain patch to an injection because it give me more relief, but my symptoms persist & cause serious limitations i didn't have before. my PCP told me I had to do PT to get scans. I said okay, because this has happened before. I need 6 weeks
to get scans, which is a lot. my 1st pt was terrible [and I posted about it earlier] and my next pt is somebody I've never been with, so idk if they know eds. the only PT who I know, like, and who knows eds is booked through December. I called insurance to ask about getting scans
Read 16 tweets
A thread 🧵 on #LongCovid and chronic diseases…

Could long covid unlock clues to chronic fatigue and other conditions? - The Washington Post ⁦@washingtonpost⁩ ⁦…
“Could endemic covid leave millions disabled with long-haul symptoms every year, creating a growing public health crisis?”

“Maybe this is a chance for us,” said Krumholz, who is working with colleagues to design rigorous, broad-based studies. @hmkyale
Among his fellow researchers is Akiko Iwasaki, a Yale immunologist and principal investigator at the Howard Hughes Medical Institute, who lists five hypotheses that she believes could explain the biological underpinning of long covid.”
@VirusesImmunity @YaleMed
Read 12 tweets
#SpoonieChat do you say you are chronically ill, disabled, or both? why? whats the difference? to me chronic illness is any chronic health condition. it doesnt have to cause discomfort or interfere with your life #NEISvoid #DisabilityTwitter #chronicpain #chronicillness #spoonie
disability is when you have a permanent or temporary condition that negatively impacts how you interact with your environment. it can be acquired or congenital- and dynamic, stable, or progressive in presentation. there are many models of disability: mainly the social and medical
I am disabled due to a chronic illness & also due to the cumulative impacts of 15 different mental and physical conditions. between undiagnosed adhd & asd, and official eds, neuropathy, pinched nerve, costochondritis, asthma, lung damage, rib slipping, crps, migraines, headaches
Read 6 tweets

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