Discover and read the best of Twitter Threads about #chronicillness

Most recents (24)

Alright, I’m just going to announce this: cognitive behavior therapy CBT is NOT an appropriate first-line treatment for poorly understood physical conditions such as #insomnia, #chronicpain, #MECFS, etc. It is a wastebasket that has enabled medicine to toss #patients a 1/
wastebasket because they don’t know any to admit they don’t know what’s wrong, which causes the conditions themselves to be psychologicalogized, minimized and trivialized. This has a chilling effect on biomedical research for these conditions. The numbers touting the success 2/
of CBT are easy to fudge, given the circular reasoning the theory is largely based on. Not to mention the damaging effects to patients when they supposed didn’t “think” hard enough to get better. Since #PatientExperience often has no credibility with medical practitioners, we 3/
Read 5 tweets
What does #ChronicIllness ‘look’ like. What do those in #ChronicPain ‘look’ like. So many misconceptions by public & those in #Healthcare. I can’t tell you the comments ‘she looks fine’, ‘he doesn’t look like he is in pain’ these misconceptions can harm those seeking 1/ Image
care and they can perpetuate the #stigma shared in society. There is NO ‘look’. There are many ‘faces’ of #chronicpain & #ChronicIllness. These are at best superficial as you don’t know the amount of work outings take or amount of times special events cancelled. 2/ Image
Even when they are doing ‘well’ it’s a struggle. Shared with their permission. A life w #ChronicIllness #ChronicPain Image
Read 8 tweets
Mega Dump
HIV/AIDS+CF/ME Research

Manufacturing a crisis

ICU
5:5 LOUD & CLEAR
#UseDiscernment #ThinkForYourself
#TheGreatAwakeningWorldwide
The Chronic Fatigue Syndrome Epidemic Cover-up: How a Little Newspaper Solved the Biggest Scientific and Political Mystery of Our Time
amazon.com/dp/B0796CT24Q/…
The Chronic Fatigue Syndrome Epidemic Cover-up Volume Two: The Origins of Totalitarianism in Science and Medicine
amazon.com/dp/B07DNMGQTT/…
Read 54 tweets
Thread:

12 reasons that <some> doctors disbelieve patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

1. Doctors tended to see #pwME as having “certain personality traits"

#SickNotWeak #MedEd #MedicalTwitter
bmj.com/content/328/74…
2. Doctors felt that #MyalgicE lacks a plausible pathological mechanism and its symptoms couldn't be ascribed to a precise location

3. There has been variation in the diagnostic criteria for #MECFS which has delegitimised the disease

#SickNotTired
bmj.com/content/328/74…
4. Doctors felt that #pwME had a poor work ethic

5. Doctors felt that #pwME had a poor attitude, they lacked stoicism and did not make every effort to get better as quickly as possible

#chronicillness #MedEd
bmj.com/content/328/74…
Read 8 tweets
1/ The Australian Fed government is using #COVID19Aus ‘mitigation’ modelling which permit ‘controlled burns’ of #SARSCoV2 through the population resulting in unnecessary deaths

doherty.edu.au/uploads/conten…
2/ Current federal government #COVID19Aus policy is based on 'mitigation' modelling where the #coronavirusaustralia is allowed to spread with a reproductive number R0 of >1.0 which would allow 10s-of-1000s of unnecessary Australian deaths

doherty.edu.au/uploads/conten…
3/ No responsible government should expose #chronicillness patients, cancer suffers, immune suppressed and the elderly to a #covid19 Mitigation policy where unnecessary deaths are tolerated

China and S. Korea used Suppression policies where the goal was an R0<1.0

It works!
Read 6 tweets
School's closed? Work cancelled or working from home? Quarantined or in isolation b/c of #coronavirus? Don't know what to do w/all the extra time?

#Spoonies & #unchangeables got you covered. We're experts on how to handle boredom & isolation.

A thread.
Fellow Spoonies, Unchangeables, #chronically ill peeps, feel free to chime in.

What to do with all this time?

Catch up on your fave shows on Netflix or start a new one.

No Netflix or Hulu? The following have free movies: Vudu, Crackle, Tubi, & Roku. Chime in if I missed some.
Books! If you like reading, download the Kindle app if you don't have a tablet. Amazon has Kindle Unlimited, a book subscription for $9.99/mo.

If you can't afford this, they always have free books. Or you can join an advance reader club on Facebook. Free books for reviews.
Read 24 tweets
What's in a name?
Why @WHO's formal name for the new #coronavirus #disease matters:

time.com/5782284/who-na…

#COVID19 #Covid_19
1. Wash your hands often and/or use hand sanitizer more frequently.

2. Try not to touch your face... 🙈

3. Cough into your shirt or arm.

4. Stay home when you are sick.

5. WASH. YOUR. HANDS!

#COVIDー19
#COVID19
#coronavirus

toronto.citynews.ca/video/2020/02/…
Read 12 tweets
In our long journey with our chronic illnesses and disablities we will pass through difficult twists in our lives;we may fall,get into frustrations,repeated relapses and supsequently almost losing hope.
No doubt,it's not as easy as talking for sure.
#chronicillness
#Disability
But there are only two options and we should to decide either to recollet our strength after every fall and get up to continue our struggle for our lives or simply to give up waiting for an uncertain fate.
#chronicillness
#disability
In the first choice,we many not get all what we want or even need but we may be able to live with the little we get.We may be able to steal a smile from sadness.
#chronicillness
#Disability
Read 5 tweets
1/ Thread

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

Is it really that bad?

Trigger warnings: The studies below paint a very bleak picture

#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter #SickNotWeak
2/ Full recovery from #MECFS is rare

The median recovery rate from multiple published studies is 3-7%

(just 1 paper linked below)
#MyalgicE #SickNotWeak #pwME #MyalgicEncephalomyelitis #ChronicIllness #MedEd #MedTwitter
academic.oup.com/occmed/article…
3/ ~25% of #MECFS patients are housebound or bedbound.....

....sometimes for decades!

That means no work, no vacations, no social life, lost time, lost goals, lost relationships.....

journals.sagepub.com/doi/abs/10.117…
Read 11 tweets
Here's my latest* update to my vetted collection of Twitter Disability and Chronic Illness hashtags. Please share it!

Thank you :-) Graffiti background. Foreground in black letters on a  white background to the left reads “Twitter Disability and Chronic Illness Hashtags”<br />
This collection is current as of 01.30.20, previous Twitter update 09.11.19.

There's a PDF version coming up this weekend, to be posted to my Kofi profile. I'll add the link toward the end when it goes up, after the questions, where you can also sign up for email updates.
This version has added

- community suggestions,
- mental health hashtags,
- Medical crowdfunding hashtags,
- and a section for cancer-related hashtags.
Read 84 tweets
My best friend of 42 years yes, 42 years, helps sometimes with transportation. I can no longer drive. 💔
Please help. 😭
I am doing my d*mndest to keep it together and RESIST this 'ADMIN'!!!
Until the last breathe leaves my body...
I've done Aqua Therapy for a year.
The results were minimal. 😔
If my mom can't afford my RX that I have to have.
I can't DIGEST food w/out it.
It's pretty important. 😏
Read 16 tweets
How to Spot a Zombie Service: an NHS #chronicillness Thread 👇🏻. If your service comprises of an assessment, and then 2 years on a waiting list, occasionally reanimated by incompetent letters, then I’m afraid it’s not actually a service
The fundamentals of a service: it enables a user to complete the outcome they set out to do, read more about good services here: @LouiseDowne blog.louisedowne.com/2018/06/14/15-…
Many public services are Zombie Services: dead services that don’t actually help anyone to do anything. They look like a service: there’s a building, a phone number, letters, but they’re actually the walking dead, lumbering Sean of the Dead zombies, not speedy World War Z zombies
Read 10 tweets
Here’s my latest update to the list of Twitter #Disability & #ChronicIllness Hashtags.

- previous update 02.24.19 -

Please share it! Thank you. :-)

@ImageAltText Graffiti background. Foreground in white letters on a  red background to the left reads “Twitter Disability and Chronic Illness Hashtags”
There will be a PDF version up for download on my Ko-fi, likely tomorrow morning. The link is at the end.
Hashtags For Personal Narratives.

These hashtags are for sharing your stories & experiences. Also good for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 58 tweets
I have a brain tumor/IIH & such severe intestinal damage that I can't digest food w/out enteral food RX.
It's $198/mo even w/a pharma scholarship.
My now 77-year-old mom is my caregiver & she can't afford it.
We get $64/mo for food + trying to save home. Please help!
In 2011, I was bitten by a tick. I contracted E. Chaffeensis, Rickettsia, & Lyme. I wasn't treated for 11 mos. The bacteria went to my spinal cord/brain.
Please help us 💔
#Lyme #IBD #Fibromyalgia #Spoonies
During 1 of my numerous hospitalizations, I caught Vanc-resistant C. Difficile for 3.5 yrs & had to have 2 FM transplants.
I can't digest/ absorb food w/out EnteraGam.
It's norm. $1600/mo but I get a pharma discount, making it $198/mo. My 77-year-old mom still can't afford it.
Read 8 tweets
I was bitten by a #tick in 2011 & it's turned my worle upside down!
I was a practicing trial atty & am now on a walker.
I contracted E. Chaffeensis, Rickettsia of unknown et., & #Lyme.
I wasn't treated for 11 mos. By then, the tick bacteria had invaded my spinal fluid/brain.
Read 12 tweets
#MECFS citizen science: What are the answers to these 6 important questions on Myalgic Encephalomyelitis???

The insightful questions below come from this nice @diagnostic_mdpi review

#mdpidiagnostics #pwME #chronicillness #SickNotWeak #MyalgicE
mdpi.com/2075-4418/9/3/…
1. Is there a genetic susceptibility which leaves some individuals vulnerable to #MECFS after exposure to a virus, bacteria or toxic chemical?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #genetic
2. What is the key initial physiological trigger causing the dramatic downward spiral in health leading to #MECFS?

#pwME #chronicillness #SickNotWeak #MyalgicE @diagnostic_mdpi #medtwitter #immunity
Read 8 tweets
Thread:

#MECFS patients face disbelief that they are sick

Many #MECFS patients are told that they are simply tired, stressed, anxious, depressed, lazy or malingering

How can #pwME respond to such disbelief and lack of understanding??????

See thread below:
2. Below are 7 evidence-based scientifically supported findings that you can use to inform those who dont understand that #MECFS is a multi-organ, systemic and severely debilitating illness

From a lovely review by @HarvardAskDrK in @JAMA_current
ja.ma/2xF3WNT
3. #pwME have deficiencies in 3 organs important for the body's hormonal balances called the hypothalamic-pituitary-adrenal axis

Importantly, the deficiencies observed in #MECFS patients are quite different to that seen in #depression
Read 10 tweets
On a serious note:
Tuesday is my father's 2nd yahrzeit
Sunday 4/21 was the 2y anniversary of his death.

In reflecting back, I have some thoughts for #medtwitter, #Jews and the general public...
1/

#death #dying #grief #PalliativeCare #medicine
1. Condolence notes just need to say, "I am thinking of you" or "I was sorry to hear your news" or "I am sorry for your loss."

Don't overthink it, and don't offer false platitudes. Send your note or make your call, and the person who is #mourning knows you care.
2/
2. Show up.
For #shiva, for #kaddish. The first week, there's a lot of people around in a #Jewish house of mourning. Then everyone goes home, and we are left alone.
Offer to go to lunch. Bring dinner. Take a walk.
Join us in shul. Kaddish that first time in services was hard.
3/
Read 14 tweets
1. thread.

Nice @FrontPediatrics paper providing guidance for docs and #pwME in the diagnosis and management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#MedEd #MedTwitter #chronicillness #chronicpain #SickNotTired
frontiersin.org/article/10.338…
2. #MECFS is commonly misdiagnosed as a #somatic disorder

#pwME "..have been humiliated or dismissed by other providers, so [doctors] will need to be.. nonjudgmental.. & acknowledge that #MECFS is not a #psychological condition but a real illness"

frontiersin.org/article/10.338…
3. #MECFS symptoms can be diverse, complex, fluctuate and overlap with many other conditions making the diagnosis difficult

This @FrontPediatrics paper lists 33 (!) co-morbidities commonly associated with #MECFS

#MedEd #MedTwitter #pwME #SickNotTired
frontiersin.org/article/10.338…
Read 8 tweets
Here's my latest update to my collection of active Twitter #Disability & #ChronicIllness Hashtags - previous update 12.13.18.

Please share it. Thank you! :-) Light blue sand background has the # drawn in the sand to the right. The left side is blank. <br />
<br />
At the bottom of the picture, text reads
Portable PDF version will appear on my Kofi in the next day or so.

Link: ko-fi.com/TinuWrites
HASHTAGS FOR PERSONAL NARRATIVES

These hashtags are for sharing your stories & experiences. Also helpful for crowdsourcing solutions.

#InvisibleIllness
#MySpoons
#MyPainDay
#ShareOurPain
#ShareOurStories
#SpoonieStories
Read 45 tweets
18 myths & misconceptions of Post-Exertional Malaise #PEM in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#PEM (aka PENE, "flare" or “crash”) is seriously debilitating symptom caused by exercise

#SickNotWeak #SickNotTired #pwME #chronicillness #medtwitter #MedEd
1. #PEM is just tiredness

No

#pwME experience <pathological> fatigue after #exercise which can be long-lasting and includes debilitating fatigue, flu-like symptoms, cognitive impairment, #sleep disturbance

@PNASNews #MECFS #MyalgicE #MedEd #medtwitter
pnas.org/content/114/6/…
2. #PEM is not a real

No

“there exists no medical condition.. where exertion.. causes #immune/ inflammatory-related symptoms like sore throat, tender lymph nodes, or flu-like feelings, yet 60%.. of.. [#pwME].. reported these symptoms”

@PLOSONE #MECFS
dx.plos.org/10.1371/journa…
Read 20 tweets
76 yr old Mom needs help gofundme.com/76-yr-old-mom-…
In 2011 I was bitten by a tick. I have a brain tumor/IIH & such severe intestinal damage that I CANNOT digest food w/out enteral food RX. It's $198/wk, even w/pharma discount. My (now) 77-year-old Mom is my caregiver but she can't afford it. Don't have enough to eat/save 🏡. 😭
I contracted E
Chaffeensis, Rickettsia of unknown etiology, & #LymeDisease. I just had 8th spinal tap to relieve pressure on my brain.
I'd been on antibiotics for 19 yrs.
I caught Coxsackie B4 virus-a cousin of polio. Lost most use of (L) side.
I wasn't treated for 11 mos. #Lyme
Read 17 tweets
thread

Remarkable @bmj_latest @BMJCaseReports report documenting the extreme lengths a bedbound patient went through to get a diagnosis of #POTS, #MCAS, #SIBO and #tachycardia

read her story here

#MedEd #MedTwitter @MayoClinic
casereports.bmj.com/content/2018/b…
2. After suffering for 16 years, seeing 19 docs with repeated misdiagnosis:

Her cardiologist couldnt diagnose #POTS

Her gastroenterologist couldnt diagnose #SIBO

Her immunologist couldnt diagnose #MCAS

Her neurologist referred her to a #psychiatrist!

casereports.bmj.com/content/2018/b…
3. Patient: the "neurologist was out of ideas and suggested I get a psych evaluation, which I declined"

the patient <referred herself> to @MayoClinic

#SickNotWeak #chronicillness #chronicpain #MedEd #medtwitter

casereports.bmj.com/content/2018/b…
Read 10 tweets
Decided on my project for #BlackHistoryMonth 2019. Reads: Black History Month in large block letters with a colored inside and a hollow outside. Black is red inside, Hustory is green inside. Both words are in the foreground. Month is in the background. The graphic is transparent.
Once a week I'll write briefly about up to 7 historical/famous figures in the Diaspora who

- had/have #ChronicIllness
- spoke of the possibility of being in #DiagnosticLimbo
- or were considered #Disabled.
Why once a week and not every day?

I'm a #Spoonie dammit. I have no clue what day or time I'll have energy.

But I can commit to weekly.

The whole thing is for you to see that we're everywhere. For you to SEE us.

So let's get it.
Read 15 tweets

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