Post copied from the thread in memory of Beth Mazur
Reading
@B_V s beautiful obituary for Beth prompted this thread by Putrino lab in twitter .
We could do with more righteous anger like this when we lose so many amazing people
Long thread which is copy pasted below link
You know what, #medtwitter? Fair warning: I’m coming into the week pretty pissed off. I spent the MLK day weekend catching up on reading and thinking about the experiences of people with #LongCovid, chronic #lyme, #MECFS and other PAIS. I finally read Brian Vastag’s touching 1/
obituary for Beth Mazur and I just need to ask: how many more? How many more stories do you need of vibrant, exceptional people being cut down in their prime by these illnesses to finally act? How can you read what @meghanor and @danaparish articulate about chronic #lyme and 2/
all they have done with their lives before and since, yet continue to perpetuate a myth that this illness is made up? How can you read @julierehnyer’s account of fighting for her life her sheer will to live a full life and come to the conclusion that pw #MECFS are simply 3/
malingering? How many more years will you continue to repackage “conversion disorder” in increasingly opaque language with the same, frankly, pathetic science backing it and expect people to swallow it? More importantly, how long will you continue to dismiss the words of the 4/
people coming to you for help, ignore the scientific and clinical evidence showing severe immune dysfunction, neurological damage, vascular and metabolic disease, organ dysfunction and continue to consider GET and CBT to be the only tools in your toolkit? For real? I'm beyond 5/
disgusted. In short, how can you view so much suffering every day and have the casual cruelty, the nerve even, to say "you're just deconditioned" or "the brain can have a powerful effect on the body” as though that has any utility in explaining what is happening to these folks 6/
@NIH - HOW do you have the audacity to fund even a single exercise therapy/CBT trial for #LongCovid, let alone a whole mess of them and expect to be taken seriously by a patient population that has such large representation from former athletes and high performers? Why are you 7/
allowing committee members to even entertain this? The shameful history of the CBT/GET research community for falsifying data, such as in the PACE trial, alone should be enough to make you want to distance yourself from this whole line of research and yet you continue to 8/
throw good money after bad. Why? I know, I know: “because it is low cost, highly scalable and relatively low risk (if you know nothing about PEM), and although it is *slightly* controversial (see above re: blatantly falsified data) it deserves deeper investigation.” Really? 9/
Shame on you, our population deserves better. What about you @CDCgov, and @CDCDirector? Care to take some steps to encourage people to, you know, not get infected by a devastating pathogen that can cause lifelong disability? Masks, free tests, HEPA filters, clean air? Any of 10/
these ultra basic things ringing a bell? Shame on you. You are entrusted with the solemn responsibility of safeguarding the most important resource your country has - the health of the population and you are squandering it and avoid hard decisions in the name of political 11/
expediency, not science. To folks with #LongCovid, chronic #lyme, #MECFS and other PAIS who follow. I’m sorry for the rage. I’m usually better at regulating and this morning it just all got away from me. I’ll suck it up tomorrow. Everyone else, as always: see you in hell. /end