THREAD: I’m going to let you in on a little secret. In March 2020 millions of people across the globe- including a disproportionate number of healthcare workers like me- got in touch with each other and signed a pact. We all decided to fake a new illness.
We started exhibiting a bewildering array of seemingly disconnected symptoms reproducible between individuals. Chest pain, fatigue, breathlessness, brain fog. Blood tests, x-rays & ECGs were usually normal. #MedTwitter take note. This means it’s in the head.
Some of us were able to make our pulse rate, blood pressure and oxygen saturations fluctuate wildly, foxing doctors. In fact, some got so good at this game that we could fake damage to heart muscle on MRI & produce weird rashes & antibodies on demand.
@gezmedinger and I just had a phenomenal discussion with @dysclinic about #POTS in #LongCovid. Key message- symptoms are real & disabling; physical illnesses can’t be treated with psychological therapies; any doctor can do simple objective tests & start treatment.
The #LongCovid community can learn a lot from those suffering with #MECFS. We should welcome their attempts to reach out- it’s in our interest to collaborate. And if #MECFS patients end up getting the recognition & care they deserve due to #LongCovid research- good I say!
I’m not saying the two conditions are identical. LC is heterogenous- however there is a subgroup of LC sufferers with fatigue who exhibit PEM, the cardinal feature of ME. Both conditions can be associated with #MCAS#POTS sensory overload, stimulus hypersensitivity & severe pain
ME suffers have been stigmatised, ignored & abused by the medical profession, media & wider public. The poorly conducted, discredited #PACE trial recommended Graded Exercise Therapy (GET) & CBT- this has harmed and disabled countless sufferers by its inclusion in ME guidelines.
Recommendations for the Management of Long Covid; @bmj_latest rejected (apparently we did not consult the correct experts- there are none, doctor-patients are the closest) & @TheLancet has declined as well. Preprint here- please publicise papers.ssrn.com/sol3/papers.cf…