I don’t know who needs to hear this, but: surviving an infection doesn’t make you “stronger” for it. Surviving a #COVID19 infection leaves a mark. Like a boxer, every fight leaves it’s mark on your body. It can be an easy fight or a hard fight 1/
but the point is it creates damage. Like a boxer, fighting new opponents can give you experience and make you better at fighting. Doesn’t change the fact that each fight does lasting damage. It doesn’t change the fact that every fight you pick causes damage that could have 2/
been avoided if you just prevented the fight breaking out in the first place, because every fighter knows that there comes a point where experience counts for nothing when the body can’t keep going. The more hits a boxer takes, the more likely it is that we will see the mark 3/
of boxing on their brain. But we can never predict which fight will change them forever until that fight happens. We watch these fighters transform from tall, strong and proud paragons to fragile, weak and lost in a heartbeat. We marvel over the ‘mystery’ of the brain, how 4/
no one can perfectly predict who will “get” CTE or dementia pugilistica or Parkinson’s from fighting whilst ignoring the obvious: we do know, without doubt, that in those who were disabled by these terrible illnesses, it was the persistent head trauma that got it done. There 5/
is no difference when it comes to persistent infection. I can’t tell you which acute infection of SARS-CoV-2 will give you #LongCovid, but I can tell you that in those who have it, it was the #COVID19 infection that got it done. You can tell me what every boxer, footballer and 6/
veteran has told me in my sports performance career: “won’t happen to me, David, because I *insert what makes them special here*”. Doesn’t matter. It takes them regardless. I know many out there don’t like my message. They call it “fear-mongering”, they prefer the messaging of 7/
other health professionals who tell us “COVID is over! Get back to your lives!”. I wish that were reality, but the reality is this: #CovidIsNotOver, #CovidIsAirborne and *every infection*, whether you feel it or not, leaves you diminished. Every infection, whether you feel it 8/
or not, could be the one that knocks you (or someone YOU INFECT) into #LongCovid. I know our culture tells us that strong people win fights, but I have thousands of impossibly strong patients from all walks of life who thought that way and now wish that they had just avoided 9/
the fight. They didn’t need to get infected, they just figured they were strong enough to survive it and what’s one more immune challenge. Well, guess what? They did survive it, but sometimes survival isn’t the only outcome that matters, and these folks: the ones who tell you 10/
to just get out there and get back to life - these “fight promoters”? Think they’ll have your back if you get #LongCovid? 🙄 So that’s my ‘radical’ public health message that has been so controversial this week: Don’t get infected by viruses over and over. Avoid the fight. end/
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With very little due respect to this tweet: STOP minimizing getting infected with a virus that causes a life-altering chronic illness, #LongCovid, at least 10% of the time. At the very least, public health orgs that FOLLOW THE SCIENCE should raise the alarm EVERY time a new 1/
variant demonstrates immune evasion and the ability to become the next dominant variant. They should remind the public of strict infection-prevention protocols until cases stabilize: mask, HEPA filters, UV light systems, good ventilation, outdoor gathering, and work from home. 2/
This isn’t hard. You are from the Centre for Epidemic Response and Innovation, for God’s sake. Your job is to understand the science well enough to know that with every single reinfection people face increased risk of death and chronic illness. Experts urging folks to maintain 3/
In the light of the damning report yesterday from @betsyladyzhets about lack of @NIH progress on #LongCOVID, I wanted to share a story of my own. In 2014, I was a newly minted young faculty member at Cornell Med. My research institute did this thing where they paid some large 1/
amount (six figures over however many years) to an organization that would mentor young faculty on how to write NIH grants. That was all they did - day in and day out: taught you to write things that the NIH might say ‘yes’ to. Now there were lots of tips and tricks about 2/
how to write specific sections of the grant, and course was taught by this guy, John R, who was a lovely and charismatic man and in his time in academia (before he realized that TEACHING people to write grants paid better than writing them himself) he was one of the most 3/
Soon, we will be formally announcing the launch of our new clinic: a center dedicated to recovery from complex chronic illnesses. In this clinic we will treat folks with conditions like #EDS, #LongCOVID, #MECFS and #LongLyme. We were incredibly intentional about the decision 1/
to treat many complex chronic illnesses because we truly believe that a commitment to understanding the similarities and the differences between these conditions will serve to develop better and more specific therapeutics for all of them. This categorically does NOT mean 2/
that these conditions are all the same, and we need to proceed carefully as a community in this regard. These are COMPLEX, chronic conditions. IMO the greatest source of harm (inadvertent or intentional) that people with these conditions have experienced is from clinicians 3/
I want to thank so many members of the #LongCOVID #MECFS, #dysautonomia and #Lyme community for sticking up for me on this app as a few uninformed folks launch into silly ad hominem attacks. I appreciate the support, but also want to ensure that noone spends undue and precious 1/
energy responding to this foolishness and here's why: gaslighters are always going to gaslight. As I have said many, many times before - our clinics are deeply interdisciplinary. We employ ALL tools at our disposal to help our clinical communities. In our complex chronic 2/
illness patients, we work closely with the Brain Injury Research Center, led by the incredible @DamsOConnor to provide psychological support and active neuropsychological care for cognitive issues. We partner with some truly phenomenal social workers to lead social support 3/
Incredibly grateful to @theNASEM, @polybioRF and @cohengive for the opportunity to speak at #nasemforum yesterday. Not only was it wonderful to hear from (and see) some incredible colleagues in the field of infection-associated complex chronic illness, I truly appreciated the 1/
opportunity to share our clinical model that we developed for #LongCovid and are working on expanding to other complex chronic illnesses, incl. #lyme, #MECFS and #EDS and receive great feedback from veterans in the space: patients, advocates, scientists and policy-makers. 2/
I left with an incredibly strong sense of purpose and energy for the work to come. I wanted to share an explanatory thread about some of my early comments in the presentation because this unfortunately continues to be an issue that requires clear and decisive leadership: our 3/
Some time ago, a person with severe #MECFS requested that I visit with them. It has been a while since I was there and I’m still working through everything I heard and saw that day. This person had been unwell for many years and their (1/)
#MECFS was about as severe as I could imagine being possible. The visit started with a friendly coffee and chat with this person’s caregivers. There were so many emotions and feelings in that conversation: grief, resignation, gratitude, fear and concern for the future and (2/)
exhaustion to name just a few. After some time, one of the caregivers went to see if my host was still comfortable meeting with me. I was told I could enter their room. The room was small, very dark (because light was such a trigger) and well-organized so that this person (3/)