I don't like any confusion or lack of transparency about our thoughts/approaches regarding our research strategy surrounding #LongCOVID, chronic #Lyme, #MECFS, vaccine injury and other complex chronic illnesses that we study, so I wanted to post an end of year thread to share 1/
where we are right at this moment. This thread is by no means our "end game" in terms of strategy, just where we are at right now and how we're thinking about things. This may certainly change as we learn more and, as always, viewpoints other than ours are valid. So, with that 2/
let's begin. We're interested in studying conditions that can be framed as post-acute infection (#LongCOVID, chronic #Lyme, #MECFS triggered by infection) OR exposure (vax injury, ME/CFS triggered by mold exposure, trauma, etc) syndromes. When an infection or exposure event 3/
triggers a disease state such as #LongCOVID, chronic #Lyme, #MECFS or other infection/exposure-associated complex chronic illness, we believe it is due to 1 of 2 root causes: 1. the initial pathogen is persisting in the body and causing ongoing illness, 2. the body's immune 4/
system has been locked into a state of overactivity since the initial triggering event and this prolonged immune reaction is now causing damage to the body. Since nothing is ever simple, we also need to make room for 3: some people will have both - viral persistence PLUS a 5/
prolonged, overactive immune response. This year has seen multiple review and original research pubs showing that there is ample, direct evidence for both of these mechanisms, but when it comes to translating this research to clinical practice, we have a problem: most of 6/
our lab tests don't adequately test for viral persistence: they test for the antibodies your immune system is producing to fight pathogens. This could be happening because you either have the pathogen or your overactive immune system is producing antibodies for everything as 7/
though you have the pathogen. This can also be true for those whose illness was triggered by non-infectious causes: when your immune system has been overactive for a long period, it can lead to T-cell exhaustion and an exhausted immune system can then result in reactivation 8/
of viruses that were previously latent like EBV, HHV and other common pathogens. What will we be putting research effort into in 2024 and beyond? Creating tests for persisting pathogens that go beyond simply looking for antibodies and look for proteins produced by active 9/
pathogens or evidence of the pathogens themselves. Our hope is that this will lead to better testing procedures that allow us to understand who has pathogens, who has an overactive immune system and who has both. Making these distinctions regarding root causes of complex 10/
illness is crucial. You've all probably read the same case series' that we have of people experiencing complete remission from #LongCOVID, #MECFS or chronic #Lyme from application of different antibiotics, antivirals, monoclonals (addressing persistent pathogens) or IVIG, JAK 11/
inhibitors or other immunotherapies (addressing immune overactivity). Many pw complex chronic illness read these articles and react the same way: I tried these drugs and they didn't help me (or they made me worse!). This, of course, makes sense since clinicians can't tell for 12/
sure if you're experiencing these illnesses because of persistent pathogens or immune overactivity. If you give someone whose immune system is highly active due to persistent pathogens a drug that suppresses the necessary response their immune system is having, they will get 13/
sicker. If you give someone with no persisting pathogens, but an overactive immune system that is producing antibodies for a particular virus, an antiviral that boosts immune function, they will get sicker because the last thing they need is more immune activity. So a major 14/
gap here is that even if you find a clinician who is willing to try some of these drugs, they don't have adequate tests that allow them to identify "who is who" when it comes to prescribing these meds. We need guidelines and for that we need research. Therefore, in addition 15/
to studying better ways to test, we're also going to explore some of these antiviral and immunotherapies in the next few years alongside deep immune profiling so we can understand the immune characteristics of responders and non-responders to these medications. We think combo 16/
therapies will also hold great merit, but it is very difficult for us to get ethical approval to test combination therapies in clinical trials without first having done monotherapy trials, especially when we're repurposing existing drugs. Therefore, our pipeline over the next 17/
couple of years will be to first understand what some of these promising drugs do for these patients and then move into more complicated clinical trial designs that combine medications. Finally, I want to end this thread with acknowledgement of dysautonomia, MCAS, endothelial 18/
dysfunction (platelet hyperactivation and microclots), neuropathic pain, gut dysbiosis, small intestinal bacterial overgrowth, mitochondrial dysfunction and many other issues we see emerging in folks with #LongCOVID, #MECFS, chronic #Lyme and other complex chronic illnesses. 19/
Our clinic tests for all of these issues and we treat using existing guidelines (and in 2024 we will be releasing free educational content addressing these topics), but we consider them to be downstream of the root causes that this thread has addressed. There have been some 20/
great publications showing how immune overactivity and persisting pathogens can cause all of these issues. To be clear: it is still CRUCIAL that these issues are addressed - if I could snap my fingers and resolve immune overactivity or persistent infection, if those issues 21/
have already triggered POTS/dysautonomia or MCAS, you aren't going to feel better until we resolve these issues as well. In addition to sharing our assessment and interventional guidelines for these conditions, we're also investigating novel therapies for these commonly 22/
co-occurring conditions. Anyway, I'll leave it here and I hope that this provides some clarity for how I'm thinking about these issues and how we're developing our research strategy for the future. We will make some specific announcements about the drugs and therapies we're 23/
testing in 2024 as soon as we're able to do so. As always, I'd like to express my gratitude to some of the phenomenal researchers and clinicians who educate my uninformed ass regularly like @VirusesImmunity, @microbeminded2, @hmkyale, @resiapretorius and @doctorasadkhan as 24/
well as all of the people living with these conditions who so freely give their time and their energy to work collaboratively with us so that we can develop research strategies like this one here. Hope this has been helpful. Wishing everyone a safe holiday period🙏/end
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