Discover and read the best of Twitter Threads about #PwME

Most recents (24)

Ich muss thematisieren, was hier m.E. zu kurz kommt.

Obwohl #MECFS seit über 50 Jahren als eigenständige Krankheit von der WHO anerkannt ist, wird sie NICHT anerkannt.

Was ich damit meine :

Obwohl es sich um eine schwere Erkrankung handelt, die 25% komplett bettlägerig und 60% der Betroffenen arbeitsunfähig macht, erhalten Betroffene keinen Behindertenstatus.

Ausnahme : zusätzliche andere Diagnosen (z.B. psychische, was dazu führt, dass Betroffenen immer
2/x Image
wieder suggeriert wird, sich auf eine psychische Diagnose "einzulassen" (was einige schlussendlich auch tun. Dass das das Bild noch mehr in Richtung "Psyche" verzerrt, brauch ich nicht mehr zu erläutern).

Ohne Behindertenstatus entfallen Betroffenen Hilfemöglichkeiten.

Read 19 tweets
Omicron wave of mass infection showing its impact. Too many friends & colleagues reaching out for advice on #LongCovid. Heartbreaking.

A 🧵on Rest & Pace. Biggest advice: don't repeat the mistake that most of us from the first wave in 2020 did i.e. push yourself.

Data suggest recovery after the first few months is infrequent.

Tran et al (France)*:
-Of LC patients who were still sick at 2 months, only 15% recovered by 1 year

-Of those who thought they were better, 33% subsequently relapsed

Whitaker et al (UK)*:

- A rapid drop-off in symptom reporting by 4 weeks, a further, smaller drop by 12 weeks, but then very limited further decline (for up to ~22 weeks of study duration) for both men and women.

*Non-vaccinated population
3/… Image
Read 21 tweets
Two years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing, grassroots movement of people who weren't recovering from covid. Across the world, we were fighting for recognition and studying our own disease

🧵 ImageImageImage
#LongCovid is now one of most studied diseases in history. It's not "rare" or "mysterious". It was recognized by the WHO in August 2020 already, after an history-making meeting with advocates and patient-researchers. We have come that far.…
And yet, this pandemic is a mass disabling event. Treatment options, open communication, and support for patients are still lagging behind. We will not stop fighting for the rights of people living with #LongCovid and other complex chronic diseases.
Read 28 tweets
What are some things I consider Very Bad that I don't see?
1) The Multiple-Hit Hypothesis

Folks who recovered from #LongCOVID can & will catch SARS-CoV-2 and contract #LongCOVID a second time. And many won't recover this time.

Many #pwME had multiple hits (usually but not necessarily w/o full recovery) before a 'point of no return'.
2) A Deadlier Variant

People assumed Omicron was 'mild' because they observed fewer deaths. As it turns out, it was killing vaccinated ppl less often. It's not less deadly than other variants. There is no reason we will move towards less deadly variants.…
Read 15 tweets
Pleased to share ⁦@FarazFallahi⁩’s #MECFS video this time with English captions featuring some of my favourite German & Austrian names #LongCovid #MyalgicEncephalomyelitis #pwME #MedTwitter #MedEd #TeamGP #psychtwitter. A sobering watch.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe neuroimmunological disease that mainly occurs after infections (including COVID-19).

Please watch, like and share the video - help us to finally get attention!
Unfortunately, there are no therapies, hardly any research funds and no significant care structure. Due to COVID19 the number of sick people is increasing drastically.

Those affected demand:
Read 6 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
My desperate cry for help. Twitter, please do your thing🤍

Dear @elonmusk (1/6) Image
Dear @elonmusk (2/6) Image
Dear @elonmusk (3/6) Image
Read 8 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
It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n
(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n
Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n
Read 17 tweets
So 2020-22 has opened a lot of doors for folks in the ME community. Overall, this is great!

AND it's opened the door to charlatans, tokenistic participation, patient-blaming & ableism, cutesy-app designers & folks clueless about chronic complex disease presented as experts. 🧵
People with #LongCOVID who are new to the space may be unaware how hard #pwME have worked to eradicate people of bad faith from our research, clinical, and advocacy spaces. We've developed a reputation for it: #pwME don't take yr sh!t.
We've developed that tough attitude after being exploited. A great deal. And lied about. A great deal. And promised. A great deal. And harmed. A great deal.

We're trying to stand between you and the same.
Read 6 tweets
Ok. Another request, another 🧵. Today, we address the strained relationship between psychology, psychiatry and #LongCovid. Much of this may also apply to #pwME and other infection-associated chronic illnesses (h/t again @microbeminded2) and other “invisible” illnesses (1/n)
Psychology and psychiatry have a complex history with syndromic illnesses. Why? When illnesses are diagnosed on the basis of symptoms rather than “objective” tests, some clinicians will doubt the reality of the condition. Let’s start by psychoanalyzing them, shall we? (2/n)
This behavior is not justifiable, scientific or ethical. But it is also is not new: in the 1800s, tuberculosis was regarded by most physicians as the “disease of the sensitive” before tubercule bacillum was discovered, the “cancer personality” was touted for decades (3/n)
Read 22 tweets
@AnilvanderZee @ZacharyGrinDPT @Silas33 @ShaneyWright @PaulGarnerWoof @PhysiosForME 1. Thanks @AnilvanderZee yes our feasibility study showed sign physiological abnormalities during everyday activities for #pwme with #pem. Using a portable metabolic system we found a high RER during many everyday activities such as doing stairs, bathroom activities and cognitive
@AnilvanderZee @ZacharyGrinDPT @Silas33 @ShaneyWright @PaulGarnerWoof @PhysiosForME 2. activities. Some people went over 1 just in supine. Some people had low O2 others high co2. A sign number had OI some with POTS some with inc BP some with decr BP. Using hrv monitors all had low hrv with over half showing no physiol recovery day or night for up to 5 days.
@AnilvanderZee @ZacharyGrinDPT @Silas33 @ShaneyWright @PaulGarnerWoof @PhysiosForME 3. Using lactic acid monitors some people had v high lactic acid, two in particular had sign high which correlated with their leg pains. The difficulty is that every person had a mixture of symptoms and physiological presentations. But all had #pem exac by exercise.
Read 5 tweets
Starting a Tollovid thread, just took the first dose, gonna take as directed (3caps 4x/day) for one week and I’ll tweet about it. I stopped olive leaf extract for now so as not to confuse anything as I’ve recently been feeling some relief with that. #LongCovid Image
Picture alt: holding a bottle of Tollovid and my probiotic tea in the background.
Tomorrow I’ll share my list of symptoms, too tired today, but 2 things I’ve noticed: my temp fluctuates all day, low 90s to high 90s, but today it was entirely w/in 97, my usual from before was 97.4. And I ate dinner in 30 mins instead of an hour+ and was still hungry 😋
Read 23 tweets
A story about ME.

In the late winter of 2004, I caught a nasty virus—perhaps SARS-CoV, perhaps not—and since then my life has been a series of shrinking options and forced limits. Take too many steps? Bed. Cook a meal? Bed. Mental stress? Bed. Hangout? Bed. Enjoy the beach? Bed.
In 2011, I was diagnosed with Myalgic Encencephalomyelitis—ME—but not before the push-crash cycle left me unable to work, unable to lead a normal life. PEM, a racing pulse, breathlessness, sleep disorders, OI, heat/cold/sound/light sensitivities—sounds fun, right?!
But interestingly, elevated liver enzyme levels were some of the first diagnostic results to raise a red flag after infection. The levels have bounced around, but have remained too high since my fateful trip to Europe in 2004. In early 2017, I was also diagnosed with NAFLD.
Read 13 tweets
Es ist immer wieder erstaunlich, wie verlässlich und mit gleichem Muster der Crash/PEM bei #MECFS auf eigentliche harmlose Tätigkeiten folgt. Nur durch konsequenten Verzicht auf "normales"soziales Miteinander+Beschränkung auf Lebensraum Wohnung/Bett lässt sich Status Quo halten.
PEM #MECFS: Keine 24h später: Selbst das abgedunkelte ruhige Zimmer verursacht starke Augen/Ohrenschmerzen. Es bleibt heute nur bewegungslos Liegen im Dunkeln, keine Gespräche, keine Gedanken.keine kleinste Ablenkung ohne dadurch weitere Verschlechterung zu provozieren.
Man ist gefangen in der eigenen Hölle, alleine lebendig begraben. Ich komme damit klar und lasse das Monster #MECFS wüten. Je weniger Widerstand, umso schneller ist es vorbei. Bei vielen kommen Panik und Ängste auf, was alles verschlechtert. Dann wird es schlimmer oder bleibt
Read 11 tweets
“ME/CFS: What Psychiatrists & Psychologists need to know” by @DoctorsWithME (March 2022)…

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #NeuroME #MEcfs #CFS #PwME #CFSME

#ME/#CFS is a chronic, complex, multi-system biological illness with often devastating consequences. It affects all age groups including children, and all social classes. About 75% of sufferers are female”

#MyalgicEncephalomyelitis #MEcfs #PwME #CFSME #ChronicFatigueSyndrome
ME/CFS “has a worse quality of life score than many other serious illnesses including cancer, stroke, rheumatoid arthritis and MS. 25% of patients are housebound or bedbound.”

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #SevereME
Read 10 tweets
Could an upset liver be a key clue in ME/CFS?

Our recent results using a large metabolomics screen of 250 plasma samples from ME/CFS, MS and healthy controls has identified a consistent liver issue in mild, mod and severe patients. See last slide
The VIP scores show the importance of metabolites in our patient v control comparison. Blue lower than control, red higher. VIP scores > 1 are worth following up and may give clues on affected pathways.
We are looking at trends rather than highly significant differences.
Interestingly the liver issues are not observed in multiple sclerosis patients.

Why might the liver function be of interest?
The liver circulation is plumbed into the gut. The next stop for material coming into the blood stream from the gut is the liver.
Read 7 tweets
1/4 We are social beings. We need the conversation, other people, our work, experiences, love, affection, humor. Also walking around outside, being in the fresh air, smelling spring, walking in the park or in the woods, travelling, joy. And we need our memories. Image
2/4 But what should we remember if we have been seriously ill for years? What can we do that actually constitutes being human? #pwME can't do all that. None of that.

Not only are we tormented by myriad symptoms, but also by the isolation cut off from all that constitutes life.
3/4 Added to this is the fact of suffering from an illness that is ignored by the system. Basically one of the worst things that can happen to you.

We also have no chance of healing. Many think that #pwME are dramatizing or exaggerating.
Read 4 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
🧵1/9 Psychologist
"We think your symptoms are psychological." I couldn't get this sentence out of my head. How could my symptoms be psychological? Bulls**.

But what if he was right? I couldn't get rid of the thought & followed the doctors advice & went to see a psychologist.
2/9 It was an old man, around 75. After I have told him about everything, he asked me what bothered me. "My symptoms" I said. “But there has to be something that burdens you mentally” he answered. The following conversation went something like this:
3/9 "Did you have a bad experience in your childhood?"
- "No"
Did you lose a close family member?"
- "No"
Are your parents divorced?
- “No”
He was desperately trying to find something in my past and I was getting more and more confused.
Read 9 tweets
I got published for the first time!! While seriously ill with Long Covid!

🧵 Summary of the article:

#LongCovid is Britain's next public health crisis. There are 1.5mn ppl with Long Covid in the UK, of whom 281k are seriously ill. 1/8…
Though Long Covid is no longer a scientific mystery, widely available and effective treatments remain a distant prospect. The research therefore is moving far too slowly for longhaulers. This is largely the fault of our political leaders. 2/8
The UK gov't has only invested £50mn into Long Covid research. That is a pittance in the context of pandemic era gov't spending. Our failed track and trace system cost £37bn. £2bn was spent on unusable PPE. 3/8
Read 8 tweets
A fear #PwME share is that if we get a new life-threatening illness, we won’t notice because we’re used to being so sick. This finally happened to me last month. I’m OK now, but it’s a miracle we caught it in time. A rambling thread🧵
In late Feb, I suddenly got much sicker. I thought I was relapsing into severe ME as I neared my 3rd trimester carrying twins. My pregnancy symptoms (swollen feet, nose bleeds, aches) got worse, but that was expected, right?
My energy envelope dropped to 30 minutes of upright activity a day and headaches got worse, but that’s life with ME, right? And I developed a wet cough and shortness of breath, but that was probably allergies, right? … NOPE.
Read 16 tweets
Not such good news for #pwME in the Netherlands?

Dutch patients should no longer expect that future Dutch guidance for #MEcfs will be based on the new NICE guideline.


#MyalgicE #MEcfs #MillionsMissing
In December 2020, the Dutch Care Institute (Zorginstituut Nederland) had announced it would work towards a new "quality standard"/guideline for care for people with #MEcfs. In that announcement it stated that the British NICE guidelines could possibly serve as
the basis for those guidelines.

Read 10 tweets
From sailing the world to living in an aged care facility –
Ketra tells her story and explains why she thinks the #MECFS guidelines in Australia need changing.
“She was discharged into a nursing home, unable to care for herself. “It was really, really bad,” she says. “I was on a dementia ward. I remember the first room I went into. I thought: ‘Oh well, this is the room I’m going to die in’.” #MEAwarenessHour…
“It still makes my blood boil that those guidelines were written. The harm they’ve done me and other patients — and the cost to taxpayers — is obscene” says @KetraKet

#ChangeTheGuidelinesEmerge #pwme #mecfs #MEAwarenessHour
Read 4 tweets

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