Discover and read the best of Twitter Threads about #heds

Most recents (24)

#MECFS never gets easier to accept.

Every Fall/Winter my health declines significantly. In the Spring/Summer, my health improves a bit.

Each year though, my overall baseline declines.

It feels like dying slowly and painfully. Never knowing when your body will just quit.

And no. I’m not depressed or anxious. (Though it would certainly be understandable if I was.)

In fact, I continue to be in awe of myself and my community’s emotional strength in the face of this relentless physical suffering.

Any one of the typical #MyalgicEncephalomyelitis symptoms, turned up to an 8/10 intensity, would be difficult to live with after awhile. It would wear you down.

By the time you get to 3-4 of these symptoms, it’s debilitating.

Imagine getting to 100-200 daily symptoms.

Read 28 tweets
The medical profession and the patients. A partnership to cherish: Shouldn't Sweden's biggest #MECFS conference be arranged by the healthcare? Why aren't more impressions left in the collective consciousness of healthcare when ME research grows in scope around the world with each
The many faces of the disease we now call #MEcfs upcoming 🇸🇪 conference:
Disease mechanisms in ME/CFS
Øystein Fluge, Haukeland University Hospital, Bergen 🇳🇴
Disturbed energy metabolism in ME/CFS
Prof. Karl Johan Tronstad @kjtronstad University of Bergen @UiB @medofak_uib 👇🏻
#Dysautonomia in #MECFS and postcovid #LongCovid
Dr. Peter Rowe, Johns Hopkins University School of Medicine, USA
The link between hypermobile EDS (Ehlers-Danlos syndrome) and ME/CFS
Prof. Peter Rowe #EDS #hEDS 👇🏻
Read 7 tweets
It's still early, but I wanted to share some initial indications of a significant breakthrough in the treatment of my daughter's #hEDS & #MECFS. I attribute progress to Calcium D-Glucarate, a supplement known for improving phase 2 detox of estrogen & other steroid hormones. 1/
The usual caveats: I am a patient caregiver, and not an MD or a medical researcher. It is early. This is just one patient. This is a very complicated area. I am sharing not so much to encourage people to try the supplement but rather to encourage more research in this area. 2/
My daughter is part of the cohort of (mostly) women whose #hEDS took a severe turn for the worse around puberty, prompting #MECFS, #craniocervicalinstability, #POTS, #Chiari, #tetheredcord and other manifestations. This is important context. 3/
Read 22 tweets
Now that I’ve had a day to think about it, I realize why this comment bothered me so much. This reminded me so much of an experience I had as a highschooler. At a sports physical I checked off that there were times with intense activity that I feel dizzy and near syncope.
My wonderful pediatrician appropriately referred me to cardiology. The doctor did an EKG, listen to my heart and noted very slight murmur, and cleared me to participate in sports. Oh and of course to make sure that I stayed hydrated and was eating salt.
By the time I saw this cardiologist, I had already had several episodes of syncope, usually related to painful events. I also sprained my ankles multiple times by then. So for 20 years I thought I just needed to drink more water and eat more salt.
Read 5 tweets
Woke up to 5K followers! Thank you all so much 🥰

A quick re-introduction:

I’m Nicole, I spent over 10 years in academia researching emotions, concepts, and reasoning.

A few years into my “dream postdoc” at Yale I realized that I didn’t want to be in academia anymore…

1/ Image of Nicole, a white femme person, smiling in front of a
I’ve battled depression, anxiety, and chronic illness (#hEDS) my whole life and the stress of short-term academic employment away from support systems took its toll on me physically and mentally.

On top of chronic pain and month-long migraines, I had to have a surgery…

to remove tumors along my spine.

The academic job market obvi didn’t pause for my recovery and I decided I needed to make a change to prioritize my health.

While recovering from surgery, I built out my network and learned about non-ac jobs through informational interviews.

Read 6 tweets
Raising a child w #hEDS #MCAS #POTS requires lots of love, reassurance and planning. Inspired by @The_Weed I will attempt to be half as eloquent and helpful as he was in the thread I just retweeted.

How do these kids get #PTSD?
Their symptoms are ignored, they are told...
they need to ignore their symptom, toughen up, work through pain, not act like a baby, stay w/keep up w/ their peers, try harder, etc.
They may have fatigue, pain, discomfort, or an indescribable feeling that something is "wrong" (perhaps a subluxation) $ they need to stop.
The result of this is crushing isolation. They have nowhere to turn. Language has failed them. Asking for help is a vulnerable act, and at their most vulnerable they have been struck down, made to feel weak bc they can't just "toughen up" and been shown that the only people...
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
A question for people with #MECFS or #LongCOVID: in your experience, is post-exertional malaise a single phenomenon? Or is it possible there are distinct phenomena that are not being adequately distinguished, impeding understanding? #NEISvoid
With my daughter -- who has #hEDS, #MECFS, #POTS, etc. -- we have observed at least 2 and possibly 3 separate phenomena that all seem to fit the description of #PEM. Let's call them (a) "major crash," (b) "day to day PEM" and (3) "cumulative exertion PEM"
She has had 2 major crashes. These were biphasic events that appear to have caused severe damage lasting years. First major crash (2017) was what made us aware of her illness. She felt very hot in the morning. Then, some time after a long hike, she had whole-body chills/shaking.
Read 12 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
So excited to watch this interview between @polybioRF s @microbeminded2 and @MS_SouthNassau’s @RuhoyMD that I’m going to live tweet it. Dr. Ruhoy is a neurologist with a Ph.D in environmental medicine who works with #longCOVID #mecfs #EDS patients.
Ruhoy describes her long-standing interest in integrative medicine, natural approaches, and environmental medicine. She’s even a certified medical acupuncturist! She now helps lead a neurosurgery practice. 😍😍😍
Ruhoy: “I was an environmentalist from when I was very young and I believe that the world around us plays a role in our health. Even before I was a doctor, I would always try to find ways of living a healthier life. I saw no reason why I couldn’t combine it.”
Read 58 tweets
Someone wrote me an email asking about results for Survey 1/Chapter 1 of the Chronic Illness Survey Adventure! That survey is still open, so I can't respond in detail, but I can tell you a few things about our progress: (1/8) #SC4D #NEISvoid #MECFS #LongCOVID #MCAS #POTS #hEDS
We definitely need more healthy controls. Please ask your healthy friends & relatives to take the survey! Each section is taking most people less than 15 minutes so it's very straightforward and really helps our community. (2/8) #SC4D #NEISvoid #MECFS #LongCOVID #MCAS #POTS #hEDS
Overall, we have over 2K responders who 'crossed the finish line' in Survey 1. That means they completed the survey and meeting inclusion criteria (which were coded into the survey itself), and so on. Thousands more signed up and sat on it (as one does). (3/8) #SC4D
Read 8 tweets
Survey Section 2 of the Chronic Illness Survey Adventure (#SC4D) is now open! Check your email for your invitation!
Didn’t get your invite? Let me help you troubleshoot right here. (1/9)
Did you check spam?
Sometimes mass mailings like this get dumped by your mail client. Qualtrics tries to minimize this in part by sending in small batches, but it doesn’t always fix the issue. Check spam and promotional folders! (2/9)
Are you sure you weren’t ruled out? (1/2)
If you are a healthy control, you may have seen a message saying you don't meet the criteria for HCs. If so, you would not get an invite to Section 2. (3/9)
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
Collagen Supplements. *Research to Practical Advice Highlight* It might be time to reconsider taking collagen supplements if you have #hEDS but relevant for #MECFS and #LongCovid which can affect collagen (and hEDS/HSD/JH peeps). I was dx'd hEDS in 2016. 1/5 Image
I never tried collagen supplements as the reigning idea at the time suggested that if your collagen was being made incorrectly, taking supplemental collagen would not be helpful. 2/5
Fast forward to 2019 and recent hEDS research showing that there are major differences between cEDS_vEDS/hEDS and ONE of them relates to this COLLAGEN ISSUE: collagen biosynthesis/processing issues are NOT occurring in hEDS (see…. 3/5
Read 5 tweets
I see a lot of abled people focusing on single pronged approaches to this pandemic, and I am begging you to consider the chronically ill & immunocompromised who lost more than you can imagine pre-pandemic & just keep losing. Read on:
Background: In 2016 two things happened, my apartment began to leak, unbeknownst to me feeding a years old mold & mycotoxin colony in our ceiling, and I was given a pneumonia vaccine to see if my immune system was working. It wasn't, and I had full-blown pneumonia in 3 days.
I wasn't diagnosed with anything meaningful until 2018, and in between, I nearly lost my ability to walk, I lost my career and ability to leave the toxic home that was slowly killing me, and the cost to my finances just continues to accumulate.
Read 24 tweets
I was harmed by #CBT/GET not bc I was forced into the torture (aka #MEcfs) Clinics but bc lack of education meant #NHS Dx me w/ Depression as cause of #PEM, #BrainFog & debilitating #Fatigue and was then traumatised by #Psychiatrists who told me I was to blame 1/
I was a happy, successful, yoga pant wearing, posh gym attending, green juice drinking, extroverted Californian forced to undergo #CBT w/ stern British #Psychiatrists. I wasn’t Depressed until I met them, temporarily saved by acceptance into @BerkeleyHaas MBS program 2/
MBA life is hectic, exhilarating & inspiring. In remittance, I love people & Academics so got involved in everything. For 2nd year, I got a position teaching undergrad Business. An income meant I moved into nicer apartment, flew business clothes to NYC for Reuters internship 3/
Read 20 tweets
We should take some of the most replicated findings in #MECFS and study them in #longCOVID patients. Some of these findings, if also present in #longCOVID, *could* potentially imply avenues for symptom management or therapeutic treatment.
Here are a few that might be interesting:
1️⃣Low serum carnitine:
2️⃣ Low natural killer cell function:…
3️⃣ Elevated lactate (blood, brain):…
4️⃣ Cerebral hypoperfusion:…
Read 25 tweets
I googled “pelvic instability.” That’s all. I clicked on this article(pictured) which I thought sounded mechanically interesting. He mentioned this ‘Badgley Book Test” to examine SI joint instability. I googled that. And I found this tweet... mentioning EDS 😮👉〰️👈 Image
When EDS comes to me when I’m not looking for it, I feel like I’m a detective, on the right path. This browser doesn’t remember what I’ve searched for in the past so, if EDS turns up, it found me.
I’ve been having trouble for a decade with my toe joint. Now that I’m really investigating it... I’ve been led to wonder if an ankle issue led to foot and then to back & leg issues, or if it came from the top down, beginning with an unstable SI joint. 🧐
Read 9 tweets
A little at a loss for words. I don’t disagree with everything she is saying—it’s important to recognize that hypermobility is a widespread trait in the population and doesn’t necessarily mean disability—but ppl w/ EDS see these traits all around them. Image
If these associations haven’t been well-established in the literature, perhaps that’s important work to fund?

Hoping @exceedhergrasp1 that your work can touch on this.
Talk on #hEDS, FII, and child abuse, taking a critical eye toward how hEDS diagnosis in kids may be being used to shelter abusive parents from child protection proceedings:
Read 6 tweets
Petra Klinge’s talk on tethered cord syndrome blew my mind. It‘s given me a deeper understanding of how tethered cord syndrome might play a fundamental role in the patholophysiology and symptoms of a subset of #MECFS and #EDS patients. THREAD [1]
Tethered cord syndrome is a cluster of symptoms that develop when the filum terminale, a string of connective tissue that links the end of your spinal cord to your sacrum, is either inappropriately attached to your spinal canal or is too tight. [2]…
This tethering exerts a downward force on your spinal cord. It’s why some neurosurgeons think tethered cord might predispose people to developing craniocervical instability/atlantoaxial instability (CCI/AAI) or symptomatic Chiari later in life. [3]
Read 51 tweets
I don’t know how to get the word out about this. I am concerned about #MECFS patients who are a) having craniocervical fusions b) in Europe and c) are not actively engaged in patient groups on Facebook. [1]
My primary concern is that a significant proportion of patients who have fusions experience an initial improvement, but then have worsening symptoms roughly 5-7 months after surgery.[2]
In many cases, this is due to the “unmasking” of tethered cord syndrome, a condition many patients with craniocervical instability have. [3]…
Read 76 tweets

There seems to be a GLOBAL EPIDEMIC of #ChronicIgnoranceSyndrome that is effecting the medical establishment & resulting in constant misinformation & treatments for #ChronicPain #CFS #pwME #Fibromyalgia #hEDS #EDS #Lyme #FND, the list is...1/2
shocking & endless. So during #InvisibleDisabilitiesWeek we ALL have an opportunity to highlight this spread of #ChronicIgnoranceSyndrome, the effect this has had on our #MentalHealth & what we are collectively doing daily to fight this medical ignorance & abuse! 🦓✊ #MAIMES
Read 3 tweets
#Fibromyalgia, #HSD, & #hEDS are subjects of this Twitter Thread. I am a General Medical Doctor who encounters these types of patients.
Undoubtedly, #HSD & #hEDS have genetic underpinnings. My speculation is that the majority, but not all, of the #fibromyalgia patients have clinically manifest joint hyper-mobility & genetic variations as part-cause of their disorders. Below I suggest a study of this matter.
Besides the usual Beighton hyperextensions, clinical manifestations of hyper-mobility include scoliosis (vertebral spine disks are specialized ligaments) & Genu valgus & varum, but that is not all ...
Read 25 tweets

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