Discover and read the best of Twitter Threads about #eds

Most recents (24)

This is the kind of paternalistic, unscientific nonsense that #MECFS #Lyme #Fibromyalgia #HSD #POTS #MCAS #Pandas #Pans #EDS #VaccineInjured #FQtoxicity patients have endured for decades. Now it’s the turn of #LongCovid
I’m going to make an offer to our colleague. Hopefully @DrKGregorovic can convey this message as I am blocked. Happy to have a Zoom coffee with both of you. We can examine
-the paper @awgaffney has tweeted & discuss the flaws
-the evidence for biomedical causation in #MECFS & LC
-the evidence for the ‘false sickness beliefs’
-the quality of the studies advocating exercise & talking therapies
-studies looking at the outcome of exercise in #MECFS & #LongCovid populations
-cardiovascular & other outcomes in #LongCovid

I think that is fair? Let me know
Read 6 tweets
@ICARSBanRandS @NeuroClastic @unsilenced_now So this ONLY applies to children??? I'm still traumatized 8 yrs after being brutally manhandled & physically harmed due to my #EhlersDanlosSyndrome after going to a hospital for 'HELP' while having what I THOUGHT was a panic attack but I now know was a meltdown caused by ...
@ICARSBanRandS @NeuroClastic @unsilenced_now undiagnosed autism. I only discovered a year ago that I'm autistic & what's been happening to me are MELTDOWNS. After I got there, the bright fluorescent lights, painful hard furniture & COLD in the psych ER where I found out the hard way that, once u're there, u can't leave ...
@ICARSBanRandS @NeuroClastic @unsilenced_now until a psychiatrist gets around to seeing you, which was about 17 hours that time although nobody would tell me how much longer I had to wait & they take all ur clothes & shoes & have no pillows or blankets; just a one-ply hospital gown open in the back and non-slip socklets ...
Read 123 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
Some long weekend reflection as we work to build effective research infrastructure around #LongCovid and other infection-associated chronic illnesses like #MECFS and #Lyme. For those who don't know, I was born and raised in Perth, Western Australia, so here's a "local" story. 1/
Apologies if this is a familiar story to many, but I think there is much wisdom to be gained. For the longest time, gastric ulcers were thought to be related to excess acid in the stomach and worsened by stress/lifestyle. People were treated for peptic ulcers with antacids and 2/
the recommendation to reduce stress in their lives. This went on for decades until a Perth-based physician/scientist, Dr Barry Marshall, made an accidental discovery that led him to believe that gastric ulcers may not be stress-related at all: in fact they might be a result of 3/
Read 13 tweets
BIG PROBLEMS with framing of new baseline study of NIH intramural #LongCovid #PASC cohort

lack of abnormalities on ROUTINE tests

no objective abnormalities

It ignores #LongCOVID similarities to #MECFS & advances in research on both, including those funded by NIH!

no evidence found

evidence against


Yes, it's a baseline study. But the pivot to discussions of depression and anxiety when abnormalities weren't easily found is jarring.

This follows the HORRIFYING tendency of medicine to psychologize illness, when physiological abnormalities aren't found.


Read 15 tweets
I haven’t provided much of an update in my #longcovid #mecfs #pots #mcas picture.

So here it goes… 🧵

For reference, I got Covid June ‘20 and spiraled into #longcovid July-Aug

What I’m working towards right now: tethered spinal cord evaluation by 2-3 surgeons.
Between Aug ‘20 - May ‘21 I was dx’d with: POTS, SIBO, MCAS, ME/CFS.

I also was tested for collagen disorders which came back negative.
Between Dec ‘20 and Aug ‘21 I had a workup around my c-spine because of *pulsatile* tinnitus in my left ear - a ‘whooshing’ sound. It can be an indicator of a vascular issue at the cervical junction (compression).

A CT revealed I had jugular compression.
Read 28 tweets
Many with #longCovid are finding it difficult to describe what they are feeling. Those of us in the #MECFS and #ChronicLymeDisease #EDS community have had longer to think about and put these experiences into words…
Post-viral illness wreaks havoc on multiple systems within your body which of course are interconnected. The way I describe it is that you are losing your body’s life force — this is different from your soul. And it’s not just energy. It’s your actual life’s force.
In the beginning when you first get sick, you can still feel the healthy parts of you versus the sick parts — kind of like layers of an onion.

But eventually the sick parts seep into the healthy parts and you can no longer distinguish between the two.
Read 18 tweets
#chronicillness Twitter to doctor advocates
-you’re only speaking out because you’re sick yourself
-now you know what it’s like (implication- all of us neglected & psychologised patients before. NOT true- some of us just did our best within a system stacked against us)
-you need to mention ‘x’ disease as well. (We’re learning as fast as we can. Remember we are sick too. Some of us are bed-bound lying in darkened rooms. You know how much energy it takes to speak up)
-don’t dabble in areas you know nothing about. (In my case #Palestine. Being a chronic illness advocate doesn’t make me a one-trick pony. I’ve visited the West Bank & witnessed firsthand the horrors of #IsraeliApartheid. So I will speak up- I’m not here for anyone’s comfort
Read 5 tweets
Day 823 of my #longcovid battle
a thread.
This will mostly be rambling, screaming out into the void as I've felt even more disconnected as my health continues to deteriorate.
Took cpl hrs to get this out & is all over the place but that's ok too.
"mild" case of covid February 2020 led to LC rearing it's ugly head by June 2020. In 1styear, I went from being healthy & active to suffering 100+ symptoms.
Each dr visit & scan found further degeneration & damage. I was met w dismissal & gaslighting from med community.
I found great solace & help in the LC communities on social media. It gave me strength to keep advocating for healthcare & finding ways to self manage symptoms until I could find a dr to listen.
I firmly believe I wouldn't have survived w out y'all.
Read 22 tweets
What I have learned since being unwell myself has destroyed any faith I had in my profession’s leaders. I used to think that deep down most senior clinicians acted because they had the best interests of the patient, their colleagues & society at heart. That illusion is gone. 1/n
Be it the treatment of those with #MECFS #LongCovid #Fibromyalgia #POTS #MCAS #EDS #HSD #PansPandas #Lyme #FQtoxicity #vaccineinjuries & other so-called invisible illnesses; 2/n
the refusal of senior medics to stand up & protect colleagues, the public & schoolchildren from airborne spread of #SARSCoV2 as they are too afraid to displease those in the ivory towers of infection control, @UKHSA & @NHSE management & @UKgovcomms; 3/n
Read 7 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
The British Association of Social Workers have published Fabricated & Induced Illness & Perplexing Presentations Practice Guide…
(PP ~ MUS) 🧵1/20
@doctorasadkhan @NurseDiane2020 @PandasPans @LongCovidKids @FiGullonScott @BASW_UK
This well-considered & positive document provides guidance to social workers (SW) to enable them to adopt professional curiosity & respond ethically to FII concerns. The following points are some that I feel are relevant to #PANS #PANDAS #LongCovid #MECFS #EDS communities 2/20
lt is recommended SW need to be aware of the lack of evidence for currently used indicators for FII & perplexing presentations and the high incidence of these indicators identifying children where illness is neither fabricated or induced #PANS #PANDAS #MECFS #EDS #LongCovid 3/20
Read 20 tweets
Next speaker
Peter Rowe, MD: Lessons from ME/CFS that can inform Lyme disease as well as Long COVID
Professor of Pediatrics @HopkinsMedicine
#LymeDiseaseAwarenessMonth Image
Peter Rowe, MD
Postural Orthostatic Intolerance #POTS is very common in ME/CFS.
#LymeDiseaseAwarenessMonth ImageImage
Peter Rowe, MD
Common forms of orthostatic intolerance. Frequently the heart rate will be above 120 BPM. #POTS #NMH
#LymeDiseaseAwarenessMonth Image
Read 14 tweets
Although I almost always keep my Tweets focused on weather, climate change, and related Earth system events, this thread is going to be a little more personal. May is #EhlersDanlosAwarenessMonth...and I have Ehlers Danlos Syndrome (hypermobility type). #hEDS (1/41)
Before continuing, I want to emphasize that I'm #NotThatKindofDoctor--I'm a physical scientist & science communicator, not a biomedical scientist nor a medical doctor. All the information and reflections in this thread are therefore either personal reflections... (2/41)
...or come from the perspective of a "highly informed patient." I do, however, strive to get the facts right, and offer links to various true experts in the clinical and research fields below. (3/41)
Read 40 tweets
@SJschmidt963 A reply in a thread 1/16
“Often occurs with LongCovid” does NOT exclude other associations NOR does it imply LC as the only cause. If this conversation was about Ehlers Danlos Syndrome, it would be equally valid to say that “dysautonomia / POTS often occurs with #EDS”. But it wasn’t, so I didn’t. 2/16
Here is a link to a peer review paper by Hannah Davis @ahandvanish et al showing the link between #POTS and #LongCovid : 3/16
Read 16 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 🧵
Being Autistic for me is so similar to having my invisible illness and being an ambulatory wheelchair user due to peoples judgements and assumptions about my disabilities and physical health.
#ActuallyAutistic #allautistics #AutismAcceptanceMonth #AutismAcceptance
(I’ve had 3 knee surgeries and will need a knee replacement eventually and I have Ehlers Danlos Syndrome and heart condition etc)
1. People say I don’t look Autistic.
People also say I don’t look sick or disabled. But it’s not something you can always actually physically see. You can’t see Autism just like you can’t see a lot of disabilities and physical health conditions.
Read 22 tweets
I’ve just been made aware of a #POTS management clinic run out of @uclh autonomic service. Brace yourself. I’ve had feedback from an attendee and it isn’t good. @UKPoTS you may be aware of this @YorkCardiology @dysclinic it’s awful 1/n
Run by 2 specialist nurses. Some jewels:
“We learn to think in particular ways
These ways may not always be helpful when you have ongoing health issues. Unhelpful thinking can increase symptoms. 2/n
These thoughts are automatic, you may not even be aware of them, until we train ourselves to think differently”
Hypervigilance, particularly of body sensations is a common thinking pattern in PoTS”
The website was recommended for dissociative symptoms 3/n
Read 11 tweets
1/5 „Jahrzehnte auf der falschen Fährte“

#MEcfs und #CCI #MEspine

Prof Scheibenbogen sagt: „Es (MEcfs) ist ein eigenständiges Krankheitsbild, so ist es ja auch eingeordnet, als neurologische Erkrankung, der Infektauslöser ist schon relativ typisch, das kennen wir auch nach …
2/5 vielen Infektionen, (…) aber es gibt ein ganz ähnliches Krankheitsbild, was auch unabhängig von Infektionen auftritt, da kennt man als mögliche Auslöser ein Unfall gerade mit einer Halswirbel Säulen Verletzung (…) “

Das kann so passieren. Ja. ABER:
3/5 Abgesehen davon, dass im Interview die Nennung von #EDS fehlt als Mitfaktor, können natürlich Kombinationen auftreten. Man kann einen/mehrere Unfälle haben UND Infekte. UND man braucht gar keinen Unfall, damit Pathogene (übrigens auch Medikamentenschädigungen, die wiederum
Read 5 tweets
For anyone wondering if @KTTape is ok to use on places with body hair, I just put KT, Packing, and Duct tape on my arm to compare for science. KT tape BY FAR was the best. Packing and Duct tape stung a bit. And Duct tape waxed my arm lol. #NEISvoid #EDS #hEDS
@KTTape does recommend trimming / shaving excess hair. My arm smarted a bit after but not uncomfortably. KT tape area stinging faded after ~2 minutes. Packing tape stung more and for 4 minutes. Duct tape stung most, still stings; it’s been 10+ minutes.… Partial Screenshot from KT Tape’s website. “How to apply
@KTTape has FSA and HSA eligible products. Here’s their normal cotton tape in pre cut but you can check out their store for other options. I get bright colors for fun usually but they also have a tan option. No dark brown unfortunately.…
Read 6 tweets
And others.

"Need to effectively utilize #CNMs has never been greater," says Kohl from

Finding a supervising provider may prove difficult.
Body of evidence has consistently shown that although these barriers do not improve care.
"Time to follow the economics and evidence and remove supervision of practice"

Notes that team based care is the "future of #healthcare in the US"
Read 56 tweets
A few mths before getting #LongCovid in Nov 20 I was a frontline NHS respiratory consultant; 6am gym goer; couldn’t sit still, always travelling the world with my wife & 2 gorgeous children. Sep 21- bedbound, gastroparesis, complete sound & light intolerance, bladder incontinence ImageImage
post-viral urticaria that made me suicidal, pericarditis, angina, cognitive impairment, crippling #POTS resistant to all medication, renal impairment, impaired glucose tolerance, intolerant of most foods. Was waiting for life to end. Got v little help from @NHSEngland 2/n
Have spent over £35,000 on supplements, private specialists & experimental treatment in Germany. I am better but still housebound, 50% bedbound, with work or family life a distant dream. Yet I am one of the lucky ones- had the resources to give myself a fighting chance 3/n
Read 9 tweets
🧵 1/
#MESpine #NEISvoid
In 3 years, I went from a primary dx of mod/sev #MECFS to a primary dx of hypermobile craniocervical instability, #CCI.

My skull-to-C2 fusion should look a lot like this.

Why did I even get screened for something so *rare*? Image
Well, hypermobile #CCI may not be that rare, especially for #pwME.
#MECFS patients are increasingly getting dx'd and treated for #CCI. #LongCovid pt's now too! See the article for more info on CCI.

BTW, cervicomedullary syndrome can result in PEM.…
Even the known triggers of #MECFS and hypermobile #CCI can be the same, notably infection here.

How can doctors differentiate btwn ME/CFS and CCI + ME/CFS?

✋I know - SCREEN #MECFS patients for #CCI

Imaging + surgical consult 1 = $1300 OOP. Ymmv

The crash sucked
Read 19 tweets

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