This feels like a very tense moment online for many people who are part of the clinical, scientific and patient communities in #LongCOVID, #MECFS and other related complex chronic illnesses. People are angry and with very good reason: we have a number of complex chronic
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illness diagnoses that are associated with devastating effects on quality of life and severe disability and we still have no biomarkers, no approved treatments and minimal amounts of access to informed and compassionate care. There is vehement disagreement on how to parse the
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problem (e.g. "lumpers" vs. "splitters"...I am a splitter) and if I'm being brutally honest, its hard not to feel like a failure as a clinician or a researcher most days. Here are a few truths and I hope people are prepared to really hear them:
1) Patients and their allies
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have every right to criticize, question and press researchers and clinicians. It would be great if this could be done respectfully, but the research and clinical communities must also understand and accept when frustration and anger come through. This is a frustrating
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situation and anger is a reasonable emotion. To everyone on here working on or living these extraordinarily hard problems: you have every right to your frustration and anger, but please try to stop short of abuse and ad hominem attacks.
2) Clinicians and researchers: Please
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understand that there is a power differential between you and the patient community. This power differential must be acknowledged and honored. Full stop. It is healthy and wise to take breaks from social media if you are feeling attacked online. It is also healthy to sometimes
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reset and decide if you even want to continue to engage with online communities on X. It is NOT OK to threaten folks with leaving the field or halting research unless people online "act right". TBC: I'm not saying that every clinician and researcher should have to withstand
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non-stop abuse or angst or attacks online, I'm just reminding my colleagues that this platform is just one way of interacting with a community, and that you hold a position of power that must be acknowledged. If being on X isn't working for you, don't do it. If working in a
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specific field of research or clinical practice isn't working out, you can also leave without making threats. This isn't an airport - no need to announce your departure.
3) Researchers and clinicians DO have a right to speak out and respectfully set straight sources of
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threats were made against @miketweetchap, a fundamentally decent and kind man living with #LongCOVID who put literally everything he had into this conference with nothing but the purest intentions of making a difference for the community. You may say that you disagree with
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misinformation. X can be a wild place and people can, and often do, say whatever they want. I think it is important if untrue claims are being made about researchers or clinicians that all members of the community take the time to call them out. As someone who has just spent
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the last few days at a conference being quietly shadowed by 4 security guards because the Dutch police, independent of the conference, decided that there were credible threats of harm against me I can say that this hits home for me. I was also devastated to learn that similar
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every single aspect of how this conference was carried out and that is your right to do so, but spreading misinformation, lies and false rumors about people places them at risk. We should be able have discourse without it. Similarly, I do also have to call out some of my
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colleagues here, including Drs Buonsenso and Joffe who have recently been making comments that I find quite jarring and shocking to read. I know these two to be passionate and caring people with their patients, which is precisely why this online behavior is disappointing to
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me. It is my opinion that they have demonstrated poor judgement online and I sincerely hope that they turn this behavior around and start to comport themselves with the intelligence, care and compassion that I know them to possess.
I will end here with a final thought:
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Whether you believe me or not, I truly believe that we are getting close to having actionable treatments and biomarkers for #LongCOVID, #MECFS, chronic tick- and vector-borne illness and many related diagnoses. Closer than ever before. But we need to work together on this. We
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need to be bold enough and humble enough to work with people we disagree with, even vehemently, to get to the truth. We have an opportunity, collectively, to be part of a solution to problems that have caused untold and horrific suffering for millions of people for decades.
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Let's meet this moment and change the face of medicine. Together.
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(p.s. I'm probably going to step away from social media now and touch grass)
