I’ve been getting more and more into skincare, and what’s so interesting about it is the overlap between the most popular topical treatments and what people with connective tissue disorders are trying (experimentally) to try to ameliorate major disorders. #MEspine In the skincare world, some of the most popular treatments include ingredients like hyaluronic acid, Vitamin C, and GHK-cu (copper peptides), all of which #hEDS and #MEspine people are already taking in an effort to reduce joint pain or improve ligament strength.

For #LongCovid folks taking Nattokinase, in addition to breaking down fibrin (potentially helpful for microclots) it apparently it hydrolyzes collagen fiber, which may not be good if you have a connective tissue disorder and could explain some adverse reactions. There’s not a lot written about Natto and collagen (as compared to its effects on fibrin) but here is one reference. “Posterior Vitreous Detachment Induced by Nattokinase”
▶️ iovs.arvojournals.org/article.aspx?a…

Just sharing @edyong209's excellent article on post-exertional malaise (PEM), a hallmark feature of ME and ubiquitous among #longCOVID patients. MD's, we can also experience fatigue but these are completely different things. My take? PEM is a neurological symptom...

https://twitter.com/edyong209/status/1684549672386576386

The patients experience when their nervous system is required to produce energy under conditions of hypoxia (low oxygen), which is caused by hypoperfusion of the brain and/or spinal cord. There is a wide literature on metabolism under conditions of hypoxia...

I went to a new sports medicine place. (Since Miami, I’ve started subluxating ribs again, which I haven’t done in > 1 year.) However, the chiro I saw there thinks my issues actually originate in my brainstem and cerebellum… …which is interesting as these were likely the two brain structures most affected by my CCI/AAI and tethered cord.

@mattyglesias So, a few things. One “ensure that no one gets it” can’t be the bar. It should be transmission prevention and risk mitigation to the fullest extent possible. (By possible I also mean plausible, but people often hide behind “plausible” as a way to defend doing Jack shit.) @mattyglesias There are many transmission reduction strategies that we could be employing but aren’t. (Read up and down the thread. These are the people who were full blast organizing a global masking campaign back when the CDC and most MDs thought that was a silly idea.)

https://twitter.com/math_rachel/status/1472025151726243840

This is important. I’ve had disabled people with fairly “mild” medical conditions (in terms of daily physical anguish) push back when I have tried to talk about disease severity with the critique that I was engaging in some kind of oppression Olympics. Or hierarchy of disability.

https://twitter.com/swampflora/status/1471778657865711616

Not all disabled people have medical conditions but many of us do, and for some communities, that IS the lion’s share of the fight. When you’re not getting your basic medical needs met, and are being actively harmed, you have to share the facts that mitigate that harm.

Anyone who wants to reduce #COVID19 DEATHS should be talking about #disability, #longCOVID, and methods for reducing transmission in each and every prevention message.

The “vaccinate so you don’t die”-only message is clearly not working. Right now 95% of the public health messaging (formal, informal, mass media, social media, expert, lay) is focused on “get vaccinated and boosted so we can reduce hospitalizations and deaths.”

I don’t think most Americans understand how hard it is to be hospitalized and how sick it is possible to be without ever seeing the inside of a hospital.

https://twitter.com/jenbrea/status/1471595193610616832

Personal anecdote: It took seven years of being primarily bedridden before I was admitted to a hospital for testing. I had to deteriorate to a point where I was constantly becoming paralyzed, would stop breathing, and would pass out, over and over again, for hours.

Our community takes a very non-judgmental approach to suicide because we understand the extremes of suffering people have had to endure. All I can say is that it gets better, even if your physical health does not, and it is still possible to live a very good life. #longCOVID

https://twitter.com/AlisaValdesRod1/status/1471443059065769985

My first three years, I had many dates and many bargains with myself. I thought that my post-viral illness was going to end in me taking my life. “I can’t watch myself be destroyed like this so in six months, if things don’t get better, I’ll…”

My last few days on Twitter in health officials’ and MDs’ mentions urging them that “maybe you should think more about #longCOVID” feels eerily like Feb 2020 when I was urging “we need to mask the entire population.” Still remember when this was a minority opinion among experts To be clear, I wasn’t the only one. I used to live in Asia, and spent time in cities where, out of politeness, people mask themselves when they *have a cold* to avoid sharing it with others. When it launched, I went bananas supporting the #masks4all campaign.

I had the privilege of talking to someone almost two years ago who was very intimately involved in fighting the pandemic and shaping our entire response to it. I offered to present (or curate people to present) to their organization on post-viral illness and disability. It seemed important to have more (rather than less) information. And perhaps some of their considerable resources could go into research & prevention. Or at least their influence.

I was rebuffed.

Disabled folk…as we are know, medicine has long held a major blind spot when it comes to disability. I think this gap is feeding into poor public education about the true risks of COVID, but it is hard to have this convo with MDs who feel under siege and under-supported… …and are experiencing their own traumas. At the same time, remaining silent about constantly being left out (not counted, barely mentioned) isn’t an option. I am thinking here about #HighRiskCovid19 but also about #longCOVID and this reality

https://twitter.com/jenbrea/status/1470975455188557827

I am just going to keep saying it. This is the largest mass disabling event in our history.

The more I sit with that reality the more dissonant our entire approach to the pandemic appears.

It would be great if MDs could start talking about this. To clarify, when I say it would be great if MDs could start talking about this, I mean could start talking about the pandemic *like this*, as well as sharing the below public health info, still poorly understood by many HCPs or considered “low priority”

https://twitter.com/itsbodypolitic/status/1471242593312907268?s=20

This morning I received a DM from a cardiologist. It expresses, in his view, why when it comes to complex, chronic illness, most doctors “treat these patients like garbage.” THREAD 🧵

#LongCovid #mecfs #NEISvoid #POTS #medtwitter #COVID19

https://twitter.com/jenbrea/status/1470110176623562758?s=20

I share his words because even though we disabled people and people with chronic illness have known it in our bones and through direct, lived experience (many of us for years, many of us all our lives), I’ve never heard an MD share the truth with such unflinching bluntness.

Watching #Succession and trying to understand why kids worth billions can’t just use those billions to start new businesses… I observe the family dynamics and understand family systems like this. I still think the question is fundamentally unanswered. The show would benefit from someone speaking for the audience in this regard, just to better understand each character’s motivation.

I am concerned these are going to fly well under the radar #LongCovid

https://twitter.com/BohumilRajchl/status/1470035092630290432

Cerebellar tonsilar herniation following infectious mononucleosis: academic.oup.com/neurosurgery/a…

What are your favorite strategies for coping with the psychological tax of the pandemic? Thanks everyone for all of your answers (and ideas!) I thought I’d respond to my own question.

SVP stop saying Omicron is “not severe” as if that matters for the overall # of people who will ultimately die from it or the 50-70% who will develop #longCOVID and become ill for months, years, or decades.

Almost every MD and Ph.D in my feed is saying this and it is inaccurate. Also, the most plausible models of ME (post-viral condition first recognized in the wave of 100+ epidemics over the span of decades, please God, this is not new) are “multi-hit.” Meaning that your chances of developing it increase as you experience additional insult events.

Vaccines help prevent severe disease, which is wonderful. However, I am far more worried about transmission. What happens in ICU’s is important but a very small % of what this virus is doing to us all. We need to make sure we are not only looking where the light is. Far more is happening that what can be gleaned from studying patients in hospitals or talking to experts who work there. (I was mostly bedridden for 7 years and it took 7 years to even get admitted to a hospital.)

I am so glad that @LisaBeilfuss wrote about this but I want to push back gently on this point. #longCOVID is not really a mystery. And the reason why we don’t know how many people are not working due to #longCOVID is because WE AREN’T COUNTING THEM.

https://twitter.com/loscharlos/status/1468693639987535873

.@uscensusbureau’s Household Pulse Survey could do this. There is a long history in reporting of calling medical conditions “mysteries.” Much of the time the “mystery” is some combination of politics, low awareness, ignorance, discrimination, poor priority setting, etc.

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. 😍😍😍