J Peace 3
@JPeaceJPeace
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Not doing this for a living, doing this for a life
Joined March 2024
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Last Seen Profiles
@nick_coatsworth
As for clean indoor air, I don't see how you could come to the conclusion it would offer no health benefit? Could you please elaborate? Surely there are many reasons to aim for healthier indoor environments?
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@ZacharyGrinDPT
@NzDeanne
Lets get to the ACTUAL issue I have. What gives you the right to give a medical opinion on the reasons a young woman was medically neglected & died as a result of complications from a chronic illness? Is your opinion a professional one? Or is it a personal vent?
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@agy_lena
@thephysicsgirl
never a more compelling or candid portrail of what LC ME is like. Hard to watch but at the same time so good to see. And such lovely people involved. Immense gratitude from so many today.
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@ZacharyGrinDPT
@NzDeanne
Says who? You've been a PT for 3 years. You've got an interest in neurology and mental health. I assume you don't have a medical degree, or a background of research in ME/CFS. Where did you get this deep "biomedical" understanding and a definitive explanation for ME from?
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@ZacharyGrinDPT
@NzDeanne
Just out of interest would you class hers a functional death or do you think the "biomed" narrative might better explain it?
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@chydorina
I think that second major mistake is the missing piece in the understanding of treatment and causation of LC ME/CFS.
And I would add that because of the seemingly cyclical nature of baseline and crashing in ME/CFS I have found what works one day may not be helpful the next.
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@StilingJason
We feel you mate, your insights are straight up invaluable. Take care of yourself and know your thoughts have been appreciated. Silver lining is this is going to hit some people who haven't had to deal with ME directly too.
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@StilingJason
I like as a nickname "the Long C". But I agree the number of experts in SARS-C1 who expected long SARS2 from knowledge of the original makes me wonder why more wasn't done to understand, protect against and find treatments for before round 2. Rhen acknowledge LSARS2 from day 1.
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@alexandrite113
GET is rubbish. There is some truth to the above imo. BUT ONLY AFTER whatever was causing the dysautonomia in the first place has begun to resolve. Movement would be a better word than exercise. The only way to know if its working: LISTEN TO THE PATIENT. No other reliable tests
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@alvelda
I apologise if I'm incorrectly interpreting this study, but I thought that "post-COVID" patients was shorthand for Post-Acute-Covid-Sequelae which is a subset of those who catch covid (still a scary number of people, just not all who are infected). Please correct me if I'm wrong.
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@ZacharyGrinDPT
@NzDeanne
I assumed yours is a situation like so many other "specialists" who take their area of knowledge as "the hammer" and look at ME as "a nail". Lets look at your theory; elements of psycology, neuroscience and PT form its basis. I'm telling you there is more to it and you are wrong.
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@chydorina
This is a "conflict of interest" I love. Someone patenting a method of detecting something that previously went undetected, with the potential to diagnose many millions of previously psychologised patients. Amazing to see!!!
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@ZacharyGrinDPT
@NzDeanne
Apologies for reverting to sarcasm again, but lets say I find myself with a sudden onset of non-specific severe pain, do you suggest I call a personal trainer, a psycologist or a doctor? Tell me anything but doctor and I would assume you don't know what you are talking about.
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@PutrinoLab
@statnews
@davidtuller1
@mhornig
I think I've got it straight now in my mind. The key reason it can't be FND is in the defintion of FND itself.
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@SurvivingCFS
Kendra everytime I think of you I feel empowered & positive about how strength & warmth can triumph. Your being warms my soul & leaves me with the slightest hint of a smile.
Keep looking & you will find what it is you wish for I'm sure. We'll be following you all the way.
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Altered Lipid Metabolism in Recovered SARS Patients ‼️TWELVE YEARS ‼️after Infection - 2017
“Those who cannot remember the past are condemned to repeat it.” George Santayana
Idk what's more frustrating to me reading this; results or reference list
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@Dave_it_up
The inflammatory response presents an issue even without direct infection of neurons IMO
CV can result in hypoperfusion/increased build up of metabolites in brain tissue due to endothelial dysfunction.
Also, at least in LC dysreg. of HPA axis has a large impact on dopamine IMO
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Feeling like your heart is running a race without you?
Long Covid and POTS share altered Ang II levels due to impaired ACE-2. We need treatments not excuses.
💔
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@Renmakesmusic
@NicoReznick
@FrauXausNRW
FYI this was the "Most Replayed" part of a video that got 2.4m views so far since it came out around world ME day this year.
Before you rip on someone for expressing their feelings, think about how much respect they deserve from you.
(HINT: IMO ALOT)
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@ZacharyGrinDPT
@NzDeanne
It's good to see you're expanding the list of elements you mention, perhaps they require a SPECIALIST to assess rather than a PT?
CBT GET approach to ME/CFS is taught in PT. & speech therapy isn't going to help feeding tube complications three weeks out from starvation death
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@chydorina
Remember, the blood of LCer can induce endothelial dysfunction even in others healthy endothelial cells.
Note the difference measured was seen at PEAK LOAD!!
Result: Hypoperfusion - not enough supply to meet demand.
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@nick_coatsworth
I can see your sceptism, but as someone previously healthy who ended up rooted after an asymptomatic Covid infection I think you are way off re long covid and there are alot of reasons to research it.
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@ThePOTSPostman
As a syndrome POTS is a grouping of typical symtoms people experience. My understanding is that there is no POTS specific medicine because there are various sometimes interelated causes of POTS?
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@DaniBeckman
@zalaly
Hi Dani I think you may have switched those percentage labels by accident. I think it is probably meant to read
"8-10% (unvaccinated) to 3-5% (vaccinated)"
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@JKBurmeister
Canadian Consensus means PEM tested over two days right? Not sure if you've seen this?
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@subversivepsych
@DianaBlakely
A few weeks ago trying to go back to work too early i wound up face down on concrete asleep in the sun at 10am after four strong cups of coffee! It is a different sort of "fatigue". Annoyingly that night I couldn't get to sleep from the discomfort of a pounding heart and swelling
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A friend in the community saw a GIF & hoped we could change a word to get the message out that people may have Long Covid without realising it.
I changed it & then went further & created a few more on COVID-19 as I've been suffering from insomnia & completely bedridden for 48
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@BabaYagaSAD
@alvelda
Well we've yet had time to adumbrate the cumulative effects of repeat infections, but I hope we don't get to 40% of all people who've been infected!
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@Dave_it_up
This is why you get the blue tick! Fantastic summary. Do you know of research done about the repetitive infection aspect of the damage done, I remeber seeing something but can't find it now.
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@ZacharyGrinDPT
@NzDeanne
I'd love to have a read of your systematic review on the epigenetics of fatigue. Your published research on how healthy people walk when they are tired is interesting but not particularly relevant to ME I would suggest, unless you plan to repeat the study with ME patients?
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@Renmakesmusic
@ungenesbar
When I first read it I misunderstood what you meant. But totally get it now. You are sick of people giving their uninvited opinion relating to your health issues (and probs what you need to do to get better I'm guessing) Most with LC/ME CFS will empathise/relate. Much love
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@Daniel_E_Park
Does this suggest a genetic component? Again not consistent with the idea that more servere actute COVID increases the risk of LC from what I understand. Same disconnect with "by poverty status" prevalence. Also interesting that less than half surveyed report having had COVID!
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@Sunny_Rae1
@drclairetaylor
@HelenMMGoss
@AaronCa11
@PeteUK7
@drclairetaylor
@sunny_rae1
It means such an incredible amount that you would devote to us so generous a portion of your no doubt limited time off, so late into the night, answering our questions & through your extensive knowledge offering hope for our future. Deepest thanks❤️
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@Sunny_Rae1
@drclairetaylor
@HelenMMGoss
@AaronCa11
@PeteUK7
The next gp was great but I felt confident to keep trying in part because of your advocacy.
Only a widely accepted standard diagnostic criteria/treatment protocol inc. phenotyping that will make the difference for all! We'll get there one day because of work like yours 🩷
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@PutrinoLab
@statnews
@davidtuller1
@mhornig
Thank you for spelling this out. And thankyou for continuing to advocate on our behalf.
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@subversivepsych
And then comes the mirage. On some day seemingly just right you see the oasis you've been waiting for, health. You run towards it joyous and dive straight into the sand. Too hard too soon gone. Lost again. This is the moment someone can finally hold your hand. Brush away the dirt
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@dysclinic
I'm at the point that I am considering cutting off contact from the outside world and limiting the contact with the ones i love.
I'd rather be useful and absent than invalid and present tbh
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@ar_pnw
dysautonomia and inflammation can also change the function of the spine and the neck causing issues very quickly. The neck has evolved to move instinctively (autonomic nervous systmen is involved in its stability)
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Feeling like your brain is lost in a fog?
Long Covid and a leaky blood-brain-barrier share altered Ang II levels due to impaired ACE-2. We need treatments not platitudes.
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@sanilrege
@dysclinic
Everyone I speak to with ME on here has a combination of both the symptoms & the experience of e.g. above.
ME is an orphan disease, no current specialist takes responsibility/is expected to know about it.
Needs its own specialty, rather than being tumbling down to a psyc.
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@Sunny_Rae1
@drclairetaylor
@HelenMMGoss
@AaronCa11
@PeteUK7
You've already have, more than you'd imagine. I literally made this and printed it out to take to a new GP after the 1st didn't bother to report my bloods had come back suggesting I'd recently had a virus. He "felt I needed to stop stressing". Could barely walk 200m at a time.
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@resiapretorius
Professor, has similar imaging (re blood cells shown in ur unite2fight talk) been done to confirm/characterise endothelial damage present in LC associated micro-cloting? Aware of studies indicating dysfunction, yet none that show definitive visually confirmed widespread end dmg.
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@Silas33
@MECFSNanoneedle
I engaged with this directly, I like PTs and I think they do alot of good in alot of situations. Crazy thing is that this is still a "justifiable" opinion in the 21st century. Everything is simple when you know you're right, & this guy isn't making stuff up, he was taught it.
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@Kirstycfsmelife
@LindseyMarie_xo
Or just jealous and ready to kick someone while they are down to feel better about themselves
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@RobWust
@AndrewG76201347
@MEResearchUK
@VU_FGB
IMO anything requiring a redirection of blood flow (too often or too much) leads to issues elsewhere. Digestion, standing, normal urination, stress, fast pace cognition (I compensate by slowing down), hot temperatures. Hypoperfusion is main suspect. E.D. compensatory mech limited
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@dialucrii31
@TactNowInfo
These guys are professionals either remember. They are just dudes on the internet :)
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@resiapretorius
@tessfalor
@ahandvanish
@Be_Kinderr
@dbkell
@cazd45
I'm not sure the technical challenges invovled, but it would be amazing to see the endothelium imaged as you have the blood cells. A Unite2Ft prestenter measuring the flexibility of BC; they suggested the build up may be making them "stiffer". Could mc have this affect on EC too?
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@LizHighleyman
The millions in the LC cohort are struggling against the onset dozens of new health issues from infertility to heart muscle death, as well as poor quality of life. No one is counting the houses not getting built nor school classes not taught, nor the children not born. Oh, wait..
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@LizHighleyman
@erikmoldwarrior
@reluctantlyjoe
I believe we should be calling for infrastructure to be built that protects against suffering caused by airborne illness, just as a modern society expects to live free of most waterbourne disease. My issue with "herd immunity" is it's being used to justify failing to attempt this
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From above: Autoantibodies specific for nicotinic acetylcholine receptors in the autonomic ganglia are potentially pathogenic and may serve as serologic markers of various forms of autoimmune autonomic neuropathy.
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@sanilrege
@dysclinic
3. Dr Blithshteyn is frustrated at the level of misdiagnosis of POTS as being FND. Similar to how despite presently MS being less commonly diagnosed now as FND than visaversa, in the past before the "NECESSARY" causation of MS was properly understood, often misdiagnosed as FND
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@AaronCa11
@1goodtern
Media outlets in general have become too casual with language around important issues. BBC are not a tabloid they're a public funded broadcaster (same here with the ABC). Why did they decide chasing clicks was more important than being a trustworthy source of info to society?
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What role does small fibre neuropathy play in LC? Could small fibre peripheral neuropathy induced by endoneurial hypoxia play a role?
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@MVGutierrezMD
We need a clinical trial using doppler US to measure flow in the internal jugular veins in a large ME/LC cohort ASAP.
Cannot believe it hasn’t been done already, it’s minimally invasive, fast, cheap…
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@BecauseIMatter
@Dfrizz007
Which research articles do you suggest? I went to 4 doctors was dismissed by 3 of them (after my first retired). The female doctors believed me and the male ones didn't.
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@Dave_it_up
the cause of the poor blood flow is still a bit of a chicken and egg scenario, autonomic dysfunction seems to have a role to play, hard to say what comes first espc bc the micro blood vessels aren't directly nervated, they respond to chem released into blood (via many pathways)
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@rjmendoza444
@nick_coatsworth
It is unlikely it would have prevented it, but improved indoor air systems could have reduced it's transmissibility and perhaps the viral load some were exposed to. NPIs don't have to completely stop transmission to be useful, ideally they would reduce r below one.
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@Tiff__Annie_
Recently I'm reconsidering the role that thoracic outlet syndrome-induced craniovascular hyperperfusion phenomenon (TOS CVH) may play in the diffuse symptoms that intersect ME and CCI.
It almost seems to me to be the intersection of so many paths of dysfunction in MECFS LC.
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@noralove
@salamasinamusic
I feel stupid for repeatedly exposing myself to the risk of Covid in the past in a quest to "make up" for lost time being sick with LC. I don't want to cut myself off from the things I love, but as someone who just keeps getting wrecked by it I don't see what else I can do?
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@HarrySpoelstra
This is my bet on what is going on for me at least. It explains imo how the spike (come from either a vaccine or virus) could then cause longer term issues if not cleared, especially the "non-uniform & not easily detected" ones LCers experience possibly due to reduced oxygenation
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@Daniel_E_Park
Thx for sharing. Suprised, one would expect a lower serverity of illness (and less LC) amoungst vaccinated but yet the long covid rates don't change until booster? As someone who began experiencing long covid like illness after a booster, I wonder what mechanism explains this?
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@drkerrynphelps
Prof is there currently an Australian initiative looking at the provision of clean indoor-air utilities/HVAC (to provide fresh clean indoor air supply) and reduce the prevalence and spread of airborne pathogens?
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@diannahaze
When I was very severe I spent my time keeping one limb lifted up on something at a time for 30sec-1minute, back down to rest for a while, & the another limb repeating every so often to try to keep the blood moving. No twitter at all, just streams of childhood favs to calm myself
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@livenonaprayer
@doyouseem_e_now
That is true off the top of my head a trial conducted in an obese cohort showed ~ 30% reduction in the chances of developing LC over 12 months when metformin was started within a week of the onset of acute rona. The vit D levels seem to be a huge factor in outcomes for sure.
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@JaymieGill
I don't know you, or your younger self. But I know that long covid will have better treatments before your current self becomes a much older self. Medicine, after so long spinning its wheels in the mud, is just starting to gain traction.
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@weeklyshowpod
The do as I say not as I do joke that has the rich and powerful ensuring them and their kids have clean air while expecting the plebs to keep getting sick to save money on buildings aircon. Maybe visit John Snow's water pump in London to compare it to start of clean water supply
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@AutonomicBrad
Hey mate this shit pisses me off. Knowing how hard you try to do everything you can to not get worse, and knowing that others aren't doing everything they can to help you get better. I know you'll work out what next soon but keep your chin up & don't let the dickheads get to you.
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@HarrySpoelstra
Am I right thinking the only time a SARS-2 infection would have been picked up by this study was if the child presented to a participating ED with it in that 6 month period?
So no way of knowing if the "COVID neg." kids prev. had or later got Covid themselves?
Bonkers! 😠
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@dr_kevinlee
@DrRebeccaRyan
@dysclinic
I think that is the biggest issue behind this whole discussion. & reason behind patients anger! No-one should be content with the currently all too common situation of diagnosis by default!
MECFS/LC NEEDS TO BECOME ITS OWN SPECIALTY IN MEDICINE!!!! (like oncology).
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@TahirihWalsh
I'm sorry for your relative. Hope she is able to improve her health. Please pass on this paper from cardiologists at the University of Marburg Germany.
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@magpie_crazy
@drkerrynphelps
Not quite zero, just not where you or I hang out I'm guessing...
Note the new ceiling at the Whitehouse.
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@LizHighleyman
New variants tending to be more infectious but less deadly, many vunerable have already been lost leaving those remaining less susceptible as a population. Unfortunately we're likely left with a new burden of chronic damage and disease (example below). Pandemics suck
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@sanilrege
@dysclinic
2. Chronic stress/psycological distress are obviously not sufficient cause for POTS, but may be a contributary cause. From what I understand stress could not be described as a "NECESSARY" cause for POTS, and there is some other necessary cause (e.g. autoimmune like in MS)
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@dysclinic
Theoretically by measuring an abnormal pressure gradient in a standing at different heights along the cns compared to healthy controls?
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@JordanCrane2
these are the two groups that I am aware of looking into paxlovid.
More coming from the rega institute hopefully soon while stanford trial had issues with reinfection imo (~10% catching COVID again)
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@saltfishnackee
@BanhamGemma
@drclairetaylor
@Dan_Wyke
I think its own specialty is needed, like there are oncologists for cancer. That is my laypersons opinion though.
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@Dave_it_up
It is a pretty scary thing all around.
@davidtuller1
if this persons story is something that is being repeated in many others then it potentially has massive ramifications.
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@subversivepsych
oh hey random person on the internet. I have exactly the same issue. luckily as I improve it goes away but unluckily when it's happening if I ignore it I start getting chest pain. Oh btw never had either of these things in my life beforehand.
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@JudySmi98006978
@aparachick
Well I don't know what the official policy is & why here sorry. They generally do a pretty good job of protecting recipients but after what happened in the UK coming out recently, hopefully they are being extra careful. We all have to help each other out imo
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@dysclinic
float in the pool. take breaks often but the pool helps so much just treading water and streching. the "excercise" needed is just movement to improve blood/lymphatic flow. if you cant walk/move yourself get someone to do a pedal pump or just circle your arms and legs.
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@emmiskyten
@dysclinic
That was my initial interpretation. From my understanding there is evidence of both? And as far as cause and effect it is concievable that dysfunction could be in either direction. How could this be further investigated?
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@StevePhillipsMD
Just out of interest, did they mention if the viruses were water borne from the drinking water supply? Or more likely, were they air-borne pathogens spread due to not-fit-for-purpose HVAC systems that don't ensure, clean fresh air indoors?
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@FndPortal
@DrRebeccaRyan
With respect, I agree with you that FND should not be stigmatised, but the problem is when it is mis-used as a catch all. Dysautonomia, mast cell issues and seizures/limb numbness(at least) may all be linked to auto-immune inflamation for instance. FND would be a misdiagnosis IMO
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@0xCryptoNorth
@thephysicsgirl
🤣 if only i could workout how to prove it to you utilizing a distributed ledger.
ah well one day we shall have the technology!
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