@trekhausen
Am I being too cynical to suggest this is a trial balloon to test possible official responses to a looming disability crisis?

#LongCovid #PEM #pacing #MECFS #Covid #CovidIsNotOver #CovidIsAirborne #SpoonTheory #Spoons #Disability #DisabilityJustice #LongCovidJustice

Just had one of my worst experiences since having #LongCovid - I felt so poorly this morning too after a bad night sleep, but dragged myself to an online video group chat with the NHS Long-Covid Hub. Basically the facilitators said a load of shit about how the symptoms aren't often based on anything actually being physically wrong and there is often no lasting damage (yeah, they said that with confidence) and that it is about "reframming" the brain and its response to symptoms when doing various activities. They tied this into Somatic tracking etc. I was the only one in the group that spoke out on this by saying that I was concerned they were suggesting the symptoms are in our mind rather than being the physical reality they are - for instance, they were citing that tests often say we are fine or the fact symptoms fluctuate as evidence for what they were saying. They responded by coopting terms like #PEM and #pacing but the message was for the majority of people with Long-Covid there is nothing to really worry about as it's not physically harmful and rather about retraining the brain.

I was so mad and angry and felt so isolated. Then the facilitators spent the rest of the session periodically saying things that seemed directly related to me challenging them, for instance this included: "[to the group] I am so glad you have taken it on board and seen it for what it is." "It is neuroscience" "Not going to resonate with everybody" "we are providing evidence based options". Sadly noone else spoke out and backed me up and actually people in the group backed them if anything about how useful it was (I know this will sadly include people that are new to this shit and won't know the history of this well documented by the ME/CFS community). It just added to the sense of isolation I felt. Horrible experience.

This is something I haven't experienced at the Long-Covid Hub before and seems to clearly tie into the government's agenda around Long-Covid and how they want people with Long-Covid to get back into work, as they argue being out of work for longer makes it worse etc. Retrain and reframe those symptoms at work to see the "benefits" of being a "productive" part of the system kind of BS. Oh and of course, the main facilitator has had Long-Covid and they said they used these techniques/approach to recover from it.

In sum, it was all about promoting individualistic approaches and psychologizing Long-Covid. It's the exact same thing many have been doing to people with #MECFS for years; for instance, see here I found from a quick search: https://www.healthrising.org/blog/2019/11/11/somatization-myth-chronic-fatigue-syndrome/

I am glad I said something but sad I was the only one. I also feel gaslighted. And the Hub is the main source of support I get as someone who has had Long-Covid for 3+ years. Thankfully, but also sadly, I know that there are a lot of people here on Mastodon that understand how I feel and why I feel this way.

#Covid #CovidIsNotOver #CovidIsAirborne #SpoonTheory #Spoons #Disability #DisabilityJustice #LongCovidJustice

In the 3rd year of the global pandemic, we must end practices and policies that ignore, marginalize & deprioritize chronically-ill & disabled people, including people with #LongCOVID.

Please join me in signing @LongCOVIDNatl's #LongCovidJustice pledge: https://actionnetwork.org/forms/sign-the-long-covid-justice-pledge?source=twitter&&