i missed this article a couple of weeks ago, and i am now caught in that strange space between empathy, and a scream of such frustration that it’s too big to make it out of my mouth

SOME THOUGHTS https://www.theguardian.com/commentisfree/2020/dec/27/consultant-infectious-diseases-long-covid-not-mild-illness-seriously-debilitated-new-clinics

the writer, a consultant in infectious diseases who you’d hope knows a little something about ME/CFS & other post-viral illnesses, accurately describes PEM, the hallmark of ME, & yet doesn’t mention that graded exercise is known to MAKE IT WORSE. that is not unique to long covid!

she continues with this hopelessly ignorant statement.

there is nothing, NOTHING, straightforward about post-viral syndromes. why? because medicine knows nothing about them, and has spent the last few decades offering harmful exercise treatments that have made patients sicker

ME PATIENTS HAVE BEEN CAMPAIGNING FOR THIS EXACT THING FOR DECADES AND BEEN IGNORED. YOU ARE DESCRIBING WHAT EVERY POST-VIRAL PATIENT HAS ALWAYS NEEDED AND BEEN DENIED.

yes, I hope it happens for long covid patients, but it needs to extend to every other post-viral patient too!

on a related note, has anyone with multiple chronic conditions ever actually experienced this fabled multidisciplinary team with one single point of contact? cancer patients, perhaps I could see receiving something like this, but EDS, POTS, ME, any other less funded illness? nah

the writer is describing an ideal that chronic illness patients have wanted forever but that exists only in her head, I suspect, or at least only in very well-funded hospitals with very common diseases. It’s a pipe dream for most, although it shouldn’t be.

she finishes with this, & while i have all the sympathy & empathy in the world for long covid patients, ‘at last’ seems out of place. it’s been less than a year for most patients. ME patients have waited decades, and in this article we are similarly written out of the narrative

what disturbs me about this article is the insistence on claiming long covid as something new, as unlike other post-viral illnesses. what she’s describing are hallmarks of ME. ME patients who had mono, swine flu, general flu, 1001 other viruses, & experienced the same thing

while i think the patients who had covid severely & have testable damage to lungs/heart etc do have something new, the milder cases like hers are simply another post-viral syndrome. & yet it’s being presented as unique/more debilitating, & ME patients are being erased again

your post exertional fatigue is not new. the crashes aren’t new. long covid is not the only post-viral syndrome to be made worse by exercise: that is a hallmark of ME. it is common, & it has been ignored. Do not now ignore ME patients when you talk about new treatments & research

talk to us! Visit the ME campaign groups and research centres and charity websites! Understand that we have been here for a long time and that we’ve been yelling for everything that you are now on the cusp of receiving. Do not leave us behind.