Read on Twitter
This year I managed to write one article, with @rndNumGen, who conceived it & did much of the research. It was a warning, in May, that #covid19 would lead to many people becoming disabled by post-viral illnesses. 
https://www.washingtonpost.com/health/could-covid-19-cause-long-term-chronic-fatigue-and-illness-in-some-patients/2020/05/29/bcd5edb2-a02c-11ea-b5c9-570a91917d8d_story.html#click=https://t.co/ny4YKFjnAw
https://www.washingtonpost.com/health/could-covid-19-cause-long-term-chronic-fatigue-and-illness-in-some-patients/2020/05/29/bcd5edb2-a02c-11ea-b5c9-570a91917d8d_story.html#click=https://t.co/ny4YKFjnAw
I am grateful that an editor I used to work w/ daily, Pooh Shapiro, agreed to publish. She told us the article was very well-read & it spent 24 hours on the WP homepage. It hit the weekend of the George Floyd protests; otherwise I think it would have gotten TV & radio coverage.
Unfortunately, our warning has been borne out. Along with people @MEActNet we were worried that the neglect of post-viral illnesses, namely post-viral fatigue syndrome, & myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), would mean another generation of suffering.
Physicians are not taught much about post-viral illnesses. Some are taught that long-term fatigue, cognitive problems, etc., are 'somatization' - turning stress into physical symptoms. Other docs believe patients but feel they have nothing to offer.
Facing neglect, patients w/ continuing COVID symptoms organized, as @EdYong documented in an in-depth article a few days later. The terms #LongCovid & #LongHauler entered the lexicon. https://www.theatlantic.com/health/archive/2020/06/covid-19-coronavirus-longterm-symptoms-months/612679/
We now know #LongCovid can include damage to lungs, heart, kidney, blood vessels, possibly the brain & also post-viral syndromes like ME/CFS. Patients experience some combo of these. Researchers are starting to pay attention, as @davidtuller1 reported. https://www.statnews.com/2020/07/21/chronic-fatigue-syndrome-keys-understanding-post-covid-syndrome/
NIH held a workshop & has launched studies on #LongCovid patients, to understand the pathology & to see something new is going on w/ them or if their ailments fit in existing categories. NIH is using an intensive inpatient ME/CFS protocol I took part in to study #LongCovid pts.
Anthony Fauci has even said #LongCovid symptoms are "highly suggestive" of ME/CFS. The stories of crushing fatigue, the smack-down after any activity, the soaring heart rate on standing, are all, to any ME/CFS patient, indeed highly suggestive.
At the NY Times, @PamBelluck recently covered the NIH workshop on #LongCovid, which included patients & lots of discussion of post-viral neurological issues. https://www.nytimes.com/2020/12/04/health/covid-long-term-symptoms.html
The attention from researchers is encouraging & much needed. Data from the UK show *10 PERCENT* of covid patients have symptoms at 3 months. https://www.independent.co.uk/news/health/coronavirus-long-covid-ons-data-b1774821.html
I encourage public health people to develop an IDR - infection disability rate - for #SARSCoV2 & other widespread viruses & factor 3 mo., 6 mo., 1 yr. disability into mitigation plans. We need an *IDR* to add to IFR.
The attention is encouraging. We need more research, patients need to be heard, properly diagnosed & cared for. In Oct. I joined @julierehmeyer & @jenbrea in offering advice to #LongCovid patients. https://www.washingtonpost.com/health/long-haul-covid-patients/2020/10/23/ab7c5324-0712-11eb-9be6-cf25fb429f1a_story.html
Our advice includes:
- Trust your body
- Reject suggestions your symptoms are psychological
- Don't expect docs to have all the answers
- Trust your body
- Reject suggestions your symptoms are psychological
- Don't expect docs to have all the answers
The world is waking up to the fact that death is not the only bad outcome from #COVID19. But we need more attention, more research & more willingness to listen to patients. /END https://www.meaction.net/2020/06/26/post-covid-research-clinical-care-must-include-me-cfs/
