Thread by @theinvisible81

I was harmed by #CBT/GET not bc I was forced into the torture (aka #MEcfs) Clinics but bc lack of education meant #NHS Dx me w/ Depression as cause of #PEM, #BrainFog & debilitating #Fatigue and was then traumatised by #Psychiatrists who told me I was to blame 1/

I was a happy, successful, yoga pant wearing, posh gym attending, green juice drinking, extroverted Californian forced to undergo #CBT w/ stern British #Psychiatrists. I wasn’t Depressed until I met them, temporarily saved by acceptance into @BerkeleyHaas MBS program 2/

MBA life is hectic, exhilarating & inspiring. In remittance, I love people & Academics so got involved in everything. For 2nd year, I got a position teaching undergrad Business. An income meant I moved into nicer apartment, flew business clothes to NYC for Reuters internship 3/

Then flew to India for 3 week mobile health project w/ MBA classmates. Finished on Friday, flew to NYC & on Monday started work. I began to relapse, undiagnosed pushed on. Middle of 2nd year, a virus in 2012 caused spiralling health. Back in U.K., I was humiliated by #NHS 4/

Went to hospital several times for chest pain & collapsing. Was balked at, told manifesting symptoms, at one point kicked out bc told if I couldn’t sit up, I’d collapsed on waiting room floor, I’d have to leave. Went private, Dx w/ #POTS, GP said “I guess you aren’t crazy” 5/

In 2013, no treatments offered for #Dysautonomia. Worse, despite significant research connecting #MEcfs & #POTS, it was never mentioned. Drs. treated me like I was lying when I said I exercised everyday. Bc I contradicted the Deconditioning theory, it was me who was wrong 6/

I pushed on, career, exercise, social life. I joined most expensive Wellness clinics, did every alternative therapy, lied to co-workers about private life, ashamed to admit I was too weak to make myself better. Every night I said tomorrow will be better but it was always worse 7/

By 2017, could no longer work. Still believing lies, I thought time off, less stress etc. would help bc we can overcome #ChronicIlness right? All those pretty white women on Instagram say so. I learned the hard way how wrong they were. 2019, barely functional, #NHS did nothing 8/

Family had to bring me to CA, where I was finally Dx w/ #MEcfs, #EPI, #hEDS, #SIBO & more in addition to #POTS where in U.K., attitude is once Dx w/ one thing, all testing ceases & all future symptoms attributed to that one Dx that they claimed had no cure 9/

I hope @UKPoTS gets involved in @NICEComms #CBT/GET scandal. My anger is bc #MEcfs dismissed, I went undiagnosed & despite OI /ME link nobody, over 15 years ever said, “Why is she so fit but gets worse w/ exercise?” How many out there like me? Lives destroyed by ignorance 10/

I am now predominantly bed bound, unable to work, engage in social activities & even a conversation w/ friends is too much. I kept going for years, not knowing I was destroying my body’s ability to produce energy. How can #MedTwitter #CDC #NIH #NHS do this to patients? 11/

Instead, we are cast aside as trolls, hypochondriacs & stupid. We are not. We are suffering, we are dying. We don’t want pity or to be seen as victims. All we want, is to live. Or at a min, to not be vilified in Media & abused by powerful men. There are Millions just like me 12/

People around the world don’t understand, this isn’t just about #MEcfs @NICEComms #NHS, & the U.K. It’s about the systemic abuse of #ChronicallyIll pts WW in a medical system so advanced in many ways yet horrifically abusive in so many others and nobody cares but the victims 13/

Journalists can publish articles attacking & discriminating against the disabled bc they quoted someone from Harvard or King’s College. If someone says you are lazy, attention-seeking malingerer, it’s true or they’re entitled to their opinion of you, someone they’ve never met 14/

Professors & MD’s @RCPCHtweets can flat out lie & say “It’s Evidence-based” when there is no Evidence, but they have a fancy title, you are a worthless malingerer. You must be stupid & therefore wrong. So Doctors believe them, not you. I don’t need empathy, I need logic 15/

Too many Doctors parrot “Evidence-based” w/o reading the study. Like all professions, most Researchers are well intentioned, but it is the narcissistic personalities that rise, have the most influence & act unethically to maintain power, even if it means killing & disabling 16/

How many more of us will die? Become permanently disabled? Housebound or bedbound for life before #MedTwitter @NICEComms #AcademicTwitter say “Enough is enough” #LongCovid is adding to our numbers. We are too sick & marginalised to push back against those who do harm 17/

I don’t understand how one can swear a Hippocratic Oath & do nothing. I don’t blame Doctors for not knowing. But no excuse now w/ #Pandemic & #LongCovid yet decades of research & Millions crying foul still ignored. Silence is complicity. I know my long thread won’t be read 18/

But to conclude, I just want to say this. The #ChronicallyIll are not lazy, malingerers or hypochondriacs. Many of us now unable to work were teachers, PhD’s, MD’s, MBA’s, mothers, brothers, your local shopkeepers, friendly neighbours, students w/ potential now lost. 19/

We are human beings who want nothing more than to work & contribute to society. But we can’t bc we got a virus that triggered a multi-system disease. Ignoring Science to say it’s anxiety or fear of activity is not an opinion. It is Hate Speech. Stop the Hate. @nytimes #LongCovid