Discover and read the best of Twitter Threads about #HSD
Most recents (24)
To those intent on psychologising #LongCovid & #MECFS because ‘there is no biomarker’- let me tell you something as a senior Dr. Many diseases don’t have biomarkers & diagnosis is clinical. Take asthma for example. Symptoms vary between patients. 1/n
Many patients have abnormal exhaled nitric oxide (FeNO) & histamine challenge tests- some don’t. Yet if the patient’s symptoms & signs fit with asthma, we have no hesitation in making the diagnosis. 2/n
There is the well-known example of multiple sclerosis. Many deemed it psychogenic because there was no lab or radiology test that was diagnostic. Until of course the MR scan was invented. 3/n
October is #DysautonomiaAwarenessMonth. Today we are looking at some of the known causes of autonomic dysfunction, and how it is investigated. [THREAD] 
The cause(s) of #autonomicdysfunction in #EDS and #HSD remains unclear. However, some possible causes include:
🧍🏾♀️Increased blood pooling (e.g., in the legs when standing or around the gut after eating)
🩸Low circulating blood volume
🧍🏾♀️Increased blood pooling (e.g., in the legs when standing or around the gut after eating)
🩸Low circulating blood volume
💊 Medications with side effects that trigger or make problems worse, auto-immunity (immune responses to the person’s own body)
😷 Too much #histamine in the body (related to #allergy)
⚫️ Rarely, brainstem or spinal cord restriction
😷 Too much #histamine in the body (related to #allergy)
⚫️ Rarely, brainstem or spinal cord restriction
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 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
-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
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!
1/
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!
1/
no evidence found
≠
evidence against
LOOK HARDER
Yes, it's a baseline study. But the pivot to discussions of depression and anxiety when abnormalities weren't easily found is jarring.
2/
acpjournals.org/doi/10.7326/M2…
≠
evidence against
LOOK HARDER
Yes, it's a baseline study. But the pivot to discussions of depression and anxiety when abnormalities weren't easily found is jarring.
2/
acpjournals.org/doi/10.7326/M2…
This follows the HORRIFYING tendency of medicine to psychologize illness, when physiological abnormalities aren't found.
#MedTwitter
3/
#MedTwitter
3/
#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)
1/n
-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)
1/n
-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)
2/n
2/n
-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
3/n
3/n
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
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
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
“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 neurosymptoms.org was recommended for dissociative symptoms 3/n
Hypervigilance, particularly of body sensations is a common thinking pattern in PoTS”
The website neurosymptoms.org was recommended for dissociative symptoms 3/n
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
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
Inspired by today's Open science panel @MCAA_CroChapter event, here's a short #GreenOA guide, useful for scholars w/limited funds.
Most Cro journals are funded by ministry & required to be diamond OA = free-to-read & free-to-publish, available at : hrcak.srce.hr 1/7
Most Cro journals are funded by ministry & required to be diamond OA = free-to-read & free-to-publish, available at : hrcak.srce.hr 1/7
But, the authors who want (& need to= publish in international journals are often faced with the fact that the most of the prestigious ones are hybrid journals which means you need to pay for Gold OA if you want your article to be accessible. 2/7
This is very costly & Cro institutions don't have funds nor contracts with publishers as some other countries (e.g. Slovenia & Sage ), which would allow them to publish Gold OA free of charge. But there are other options that are under-utilized, most notably Green OA. 3/7
Excited to share my new paper with @ActinDomain! We are proposing an updated definition of #EDS/#HSD, and explain how they could all be disorders of membrane-bound collagen. We explain the science in our new publication in @FrontCellDevBio. doi.org/10.3389/fcell.…
Please also see the blog on @hEDStogether for a shorter and more easier-to-read lay summary of the main findings! hedstogether.com/projects/patho…
In our review, we explain how fibroblasts play a significant role in the connective tissue, by adhering to collagen and pulling on it to control tissue tension via a mechanism called “tensional homeostasis” doi.org/10.3389/fcell.…
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: me-pedia.org/wiki/Carnitine
2️⃣ Low natural killer cell function: me-pedia.org/wiki/Natural_k…
3️⃣ Elevated lactate (blood, brain): me-pedia.org/wiki/Lactic_ac…
4️⃣ Cerebral hypoperfusion: me-pedia.org/wiki/Brain#Blo…
1️⃣Low serum carnitine: me-pedia.org/wiki/Carnitine
2️⃣ Low natural killer cell function: me-pedia.org/wiki/Natural_k…
3️⃣ Elevated lactate (blood, brain): me-pedia.org/wiki/Lactic_ac…
4️⃣ Cerebral hypoperfusion: me-pedia.org/wiki/Brain#Blo…
#niet_in_journaal #nieuwsuur #1V #Op1 #bbvpro #NPORadio1 #surveillance Der Staat schaut zu: In diesen Städten stehen die meisten Überwachungskameras faz.net/-ikh-a1s9k?GEP… #fplus via @faznet
EXERCISE FOR #FIBROMYALGIA & HYPERMOBILITY SPECTRUM DISORDER (#HSD) 1/4/2020:
@EmLyWill: “Androgens seem to promote growth and maintenance of connective tissues like tendons and muscles. Estrogen promotes similar growth but also rapid turnover-- something not seen with androgens. So musculoskeletal connective tissue will simply be weaker in females”.
“Deconditioning also lowers testosterone further decreasing muscle mass creating a challenging viscous cycle! Regaining lean mass is crucial in #ehlersdanlossyndromes and any #pain condition!”
#IBS & #TMJ: an interesting essay showing why these seeming separate disorders are related; with emphasis on TMJ etiology.
Relation of IBS & TMJ: The nexus is hyper-mobile joints. TMJ occurs in TM joint of face uppermost in people who chronically tilt head; oft associated w. scoliosis (common in #HSD) & d/t Masseter muscle spasm attempting to maintain normal dental occlusion.
#IBS is associated with ligament laxity of SIJ & autonomic nervous system impingement within contiguous presacral plexus, which tracts to intestine; #IBS is a #dysautonomia. These are my clinical observations and theories
“Hip” is socket (acetabulum) where femur (upper leg bone) inserts into pelvis (ilium/ischium). If hip were to dislocate, person would have excruciating pain & be unable to stand/walk. Sacroiliac joint (SIJ) is 17 cm square in area; vs. ilium & sacrum/coccyx (tail bone)....
SIJ commonly subluxes in pwHSD, generating painful ligament stretch interpreted as low back/hip pain in 13-30% pwLow Back Pain. When SIJ subluxes, Ilium rotates CW or CCW around a virtual transverse axis from Right to Left & through both mid-SIJs ....
Rotation of Ilium relative to Sacrum creates an oblique relationship of contours of the two bones. In a lean person, & depending on whether there is a CW or CCW rotation, the tail bone can appear to become stationed closer to the hip region on that side....
CARDIOLOGY & #HSD & #PANIC ATTACKS
pwHSD=persons with HSD
HSD=Hypermobility Spectrum Disorder
MVP=Mitral Valve Prolapse
PA=Panic Attack
pwHSD=persons with HSD
HSD=Hypermobility Spectrum Disorder
MVP=Mitral Valve Prolapse
PA=Panic Attack
For decades, doctors have been aware of a relationship vs. Mitral Valve Prolapse & Anxiety Attacks. Lack of physiologic understanding caused many sufferers to be labeled “psychologic”.
In these patients who had frequent Panic Attacks, the primary etiologic factor was oft regarded to be an anxiety-infused mind driven by a“hysteria”.
PREVALENCE OF HSD
@ChronicWholenes @robotswonthelp @LittleV33244419 @agirlandme @t_linda @turtlechillout @MellyHopper @JohannBoucher @abby_osteen @readstothrive @BluesteinLinda @Mcallahan9 @JHobbsSaunders @albaugh_er @KelseyHardin @add_bri @sholin @LoveInYourTummy
@ChronicWholenes @robotswonthelp @LittleV33244419 @agirlandme @t_linda @turtlechillout @MellyHopper @JohannBoucher @abby_osteen @readstothrive @BluesteinLinda @Mcallahan9 @JHobbsSaunders @albaugh_er @KelseyHardin @add_bri @sholin @LoveInYourTummy
By my estimation about 15% of the population is beset with hypermobility tissue variations, and most are women. These tissue variations are genetic traits & seemingly conserved within the population.
It might be a consideration that occurrence of these tissue variations negatively impacts the incidence of population-wide fecundity and procreativity. I do not know if anyone has studied this hypothetical dynamic.
Twitter thread about these relationships follows:
ANXIETY AND PANIC ATTACKS:
I have my own theories about these disorders in those with #HSD. Panic attacks are common in persons with #Fibromyalgia, the patient population I study.
I have my own theories about these disorders in those with #HSD. Panic attacks are common in persons with #Fibromyalgia, the patient population I study.
Often people with #Fibromyalgia come to me by way of federally-funded clinic Psychologists, who are treating them for psychologic disorders. They want me to prescribe major psych meds.
My regard: ligaments in those with #HSD are super flexible & hyper loose, but not stretchable. Normally, ligaments resist being stretched, & reason for confessions during Spanish inquisition (on the rack). Muscle spasms are unconscious attempts to compensate for joint laxity. t.co/M8rLtd52nG
I agree, “bendy” is not correctly illustrative & too carnivalesque. Better terms to describe anatomical characteristics of persons with #HSD are “tilt” & “twist”. A good portion of persons have a palpable scoliosis when upright; oft absent prone, thereby “functional” because ...
vertebral disks are specialized ligaments holding bones of vertebral spine together & being flexible they twist (a word better understood by laypeople than “scoliosis”) as spine-post bears weight of upper body; oft on platform of an unstable pelvic platform. Gravity impress ....
DYSPAREUNIA:
Many years ago, I encountered a young woman who had pelvic pain and dyspareunia. “Jane” suffered from chronic low back pain & with pelvic pain during intercourse, “dyspareunia”.
Many years ago, I encountered a young woman who had pelvic pain and dyspareunia. “Jane” suffered from chronic low back pain & with pelvic pain during intercourse, “dyspareunia”.
Jane consulted a Gynecologist who told her that vaginal prolapse was cause of her dyspareunia. Many visits were taken in attempt to deal with her problem: pessaries, creams, etc. Nothing helped.
Finally, the Gynecologist wrote a consultative note that she now considered that Jane was experiencing pain originating from a “musculoskeletal” disorder. Jane came to my office.
Unilateral dominance of chronic pain & disability is something I commonly see in the #fibromyalgia patients I study. My theory is that they injure one side of their low back. The explanation seems to be in the pelvis...
The pelvic girdle is a bony ring & is platform for the spine. When the pelvis is fractured it commonly breaks in two places on the ring. However, forces that are not strong enough to fracture bone can tear ligaments.
When pelvic joint ligaments are injured, it usually occurs to one of the sacroiliac joints (SIJ). My guess is that impact of injury springs one joint first; tearing ligaments here first & this defuses/decompresses force from injuring other SIJ; protecting it.
I think you are expressing that baseline inherited ligament laxity potentiates additional ligament laxity. This seems correct. In medicine we call ligaments, “plastic tissues”. They can be lengthened if exposed to chronic repetitive stretch. Ligaments connect bones at joints.
Each joint has a normal range of motion. Ligaments hereditarily & excessively stretchable endow joints w. greater range of motion (ROM). Over time joints experience repeated mechanical stress of forced ROM & repetitive mechanical stress tends to stretch ligaments into new lengths
Over time, as ligament becomes longer, this endows joint w. even greater ROM. Greater ROM of joint imposes greater angular moment of force on ligament, with additional excessive stretching. The dynamic of stress-ROM-stretch magnifies over time; lengthening this plastic tissue.
COSTOCHONDRITIS : is more common in women. Etiology can be related to trauma, but IMO most is related to repetitive stress. The loci of pain occur in regions where the rib (bone=costo) joins with chondro (cartilage) tissue of connection with the breast bone (sternum).
The reason for inflammation seems to be that the connections incur repetitive mechanical stress. The structure of the chest wall (all the ribs) is like a barrel. All the ribs connect to the spine in the back and breast plate (sternum) in the front.
Commonly there is a twist in the spine as either a kyphosis (curve forward) or scoliosis (curve sideways) or scoliosis with a rotation (clockwise or counter-clockwise as seen from above). These curvatures shift the ribs askew & the neat lineup of ribs & sternum is interrupted.
