Thread by @PutrinoLab

I’ve been fortunate enough to have some time to stand back and reflect on the state of the field of post-acute infection syndromes(PAIS)/infection associated chronic conditions (IACC) such as #LongCOVID, #MECFS and chronic #Lyme and I wanted to share some opinions. Before I 1/

begin, a couple of disclaimers:
1) This is a topic that brings with it a lot of passionate points of view. I’ve turned off comments because I don’t want arguments to break out in this 🧵
2) I’m not a patient and I’m not a part of any advocacy org. I’m a scientist and an ally 2/

for pw IACCs. This means that I’m not going to tell people with #longCOVID, #MECFS or any other IACC how to feel or how to act about opinions of mine that run counter to theirs: I’m simply going to openly and transparently share my grasp of the science and the field whilst 3/

understanding and honoring that the stakes are different for me and I don’t have the lived experience (or years of experience) that others do.
3) This is a thread about opinion and reflection. This isn’t a peer-reviewed study or a last living testament: I might change my mind 4/

and my opinions as the science develops, and, as always, opinions other than mine are valid.

With all that in mind, let’s get into it. According to the most recent @theNASEM definition for #LongCOVID, LC is an IACC, meaning that, near as we can tell, it clinically resembles a 5/

group of chronic disease states that are caused by an event related to the body’s interaction with a pathogen. The category of IACC also includes people with a diagnosis of #MECFS, chronic #lyme, #fibromyalgia, post-Ebola syndrome, and other diagnoses. Some people will also 6/

have diagnoses that are included under the umbrella of IACC, but don’t agree that their diagnosis was triggered by a pathogen. This includes people whose disease state and ultimate diagnosis was triggered by exposure events (mold or vaccine injury) or trauma (e.g car accidents)7/

In full transparency, to my knowledge, people thinking about case definitions, syntax and science haven’t yet figured out how to handle this elegantly or correctly. So for now suffice to say: we hear you, we see you and we hope that some of you may find benefit from treatments 8/

discovered that help folks who fall under the current definition of the IACC category.

When dealing with the complexity of a topic like this, I feel that analogy helps. A good analogy we might consider for IACCs is cancer. Cancer is an all-encompassing term for >200 distinct 9/

diagnoses. In fact, even when we try to simplify cancer diagnosis by the place where it originates, such as lung cancer or breast cancer, you still end up with sometimes as many as six or more distinct subtypes that require distinct approaches to management. Now, some people 10/

study interventions that can impact all cancers (e.g rehab oncology experts looking into pain and exercise interventions), while others study particular subtypes of cancer (prostate cancer), while others still become highly specialized (HR+/HER2- breast cancer). The category 11/

of “cancer” appears to be helpful for the study and treatment of all cancers with the understanding that many of the people living under the big tent will have a vested interest for advocating for funds and attention for their specialty. A takeaway that I reflect on from this 12/

analogy is that when a new type cancer is discovered, stating that cancer is “nothing new” is rarely expressed with an intention to minimize a new cancer, but familiarity with the illness is often used as a point of solace: we have seen illness of this sort before, and we’re 13/

going to stand on the shoulders of previously existing knowledge in the field and get to an answer for this new thing faster. As we delve into the need to build out the field of IACCs, we should take lessons from other illnesses and fields. E.g. we know that many people with 14/

#LongCOVID and chronic #lyme are sick because of persistent pathogens, but the exact nature of the pathogen still matters. When I worked clinically in a critical care respiratory ward back in🇦🇺, I would see medically complex folks admitted with acute pneumonias all the time. 15/

We couldn’t just treat them all the same: we had to culture their sputum, understand their medical history and hit them with the right medicines for the actual pathogen(s) attacking their lungs. Similarly, for those with IACCs, the triggering pathogen HAS to matter, and 16/

unlike critical care pulmonology for pneumonia, we are in the STONE AGE of identifying drugs to target persistent pathogens in IACCs. Similarly, we know that many pw #LongCOVID, chronic #lyme and #MECFS have co-infections. In fact, some evidence even exists showing that some 17/

persistent pathogens may not even be that bad until they’re running with the wrong crowd, so even though your most recent infection pushed you into the chronic disease state, it may well be the combination of persistent pathogens that is the problem. It MAY EVEN BE that the 18/

previously latent pathogen, now reactivated and rolling with some new baddies, is the one causing the most harm. Again, understanding how other fields of medicine, such as HIV, have addressed the management of co-infections here is valuable. Once again, unfortunately, we are 19/

in the STONE AGE of understanding how to identify and/or manage co-infections as we address IACCs. Now, here’s the rub: if we take the view that #LongCOVID is purely unique and not an IACC - this is the nuance you risk missing: what if your symptoms are from Borrelia or EBV 20/

reactivation alongside your persistent SARS-CoV-2 virus? This is the sort of knowledge that the IACC community needs to develop together in order to appropriately embrace the complexity of these pathologies. In addition, the decades of work that clever physicians, patients 21/

and scientists who are “IACC-literate” have done to develop meaningful strategies to manage MCAS, mitochondrial dysfunction, POTS, chronic pain, cognitive impairment, endothelial dysfunction and other symptoms have been game-changing for many of our patients. It is undeniable 22/

that many of these symptom management strategies are valuable across IACCs. I’m running low on space so I’ll wrap up here on my final point: it is my opinion that we are stronger together moving forward as a community. This opinion is tempered by the fact that we must to 23/

acknowledge differences and similarities in the communities that share the IACC category, we need separate pots of funding to explore interventions and research that address the unique elements of different IACCs and we need funding that enables research into the similarities 24/

that these conditions share and interventions that may work across >2 IACCs. We also need to shine a light on these topics (@jonstewart @weeklyshowpod) so more ppl will GET MAD about how little we have done for pwIACCs to date. I hope this was helpful and not a rambling mess 🙏🏻

@jonstewart @weeklyshowpod @threadreaderapp unroll