Thread by @patientled

Next, whose presentation within the module, Clinical Cases, is an interactive session, Dr. Lucinda Bateman @bateman_md spoke: “Can discordant identical twins become concordant for ME/CFS?” #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic

Dr. Bateman speaks of a case study: an identical twin female, 17years, track athlete, who developed severe exhaustion affecting every area of her life. She was able to attend college, but never able to work full-time. #MECFS

At age 24, she suffered an infection and was erroneously diagnosed with a psychiatric disorder. She was seen by Dr. Bateman, who tested for and diagnosed dysautonomia. The patient was able to be upright for 1 hour on worst days. Pyridostigmine was a beneficial therapeutic. #MECFS

Her identical twin contracted #Covid_19 at age 41. 10 months after acute Covid, and fearing the developement of #MECFS, the twin was treated early-on with various therapeutics, and although the patient had POTS, she did not go on to develop ME - due to #earlyintervention.

Next up is Melissa Siller, also within the Clinical Cases module: “A severe illness for the long-haul: patient experience, novel treatments, and current state.” #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic

Siller described an active 62y patient who contracted #COVID19 in March 2020, & is having multiple, long-lasting symptoms. She first had slow, but significant improvement in her most severe symptoms with treatment.

Siller further described how, months later, the patient developed new, multi-systemic issues & had multiple relapses of previous symptoms. One year on, the patient is disabled & still experiencing cognitive and physical symptoms. #LongCovid #Covid19 #CovidIsNotOver @NIH

Dr. Leigh Jerome rounded out the Clinical Cases module, presenting on “Insights for the provision of long COVID psychotherapeutic care: a case report”. #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic

Dr. Jerome described a case study of a previously healthy, 38y old architect, who has been ill for 2 years, following #COVID19 infection, before PCR testing was widely available. #CovidIsNotOver #mecfs #LongCovid #iacfsme @itsbodypolitic @NIH

Dr. Jerome said that sudden onset of chronic & disabling conditions will often trigger anxiety [which is normal under the circumstances] & should not be pathologized. #CovidIsNotOver #mecfs #LongCovid #iacfsme @itsbodypolitic #Covid_19

Dr. Leigh Jerome referenced @itsbodypolitic as a resource for those suffering from #LongCovid. #CovidIsNotOver #mecfs #LongCovid #iacfsme @itsbodypolitic #Covid_19

Dr. Leigh Jerome advocates for an integrative treatment model & multidisciplinary treatment for those suffering from #LongCovid. #CovidIsNotOver #mecfs #LongCovid #iacfsme @itsbodypolitic #Covid_19

Next up is Dr. Geoffrey E. Moore, whose presentation within the module, Provocation Studies 1 is: “Recovery from 2-day cardiopulmonary exercise testing in persons with ME/CFS”. #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic

Dr. Moore’s said that ME subjects “look deconditioned, but recover like they're overtrained”(!) #MECFS subjects also showed “highly statistically significantly prolonged recovery versus similarly sedentary controls”. #COVID19 @NIH #LongCovid #IACFSME

Next, also within the Provocation Studies 1 module, Dr. Betsy Keller (for Dr. Candace Receno) presented: “Physical activity levels in ME/CFS before and after a 2-Day Cardiopulmonary Exercise Test Protocol” #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic

Dr. Keller showed that “activity patterns in #MECFS patients are different, compared to highly sedentary healthy individuals”, and that accelerometry can be an objective tool to measure physical activity in MECFS.

Dr Keller also noted that “a single bout of exercise can negatively impact those with #MECFS”, and that fatigue can last days, post-exertion. #CovidIsNotOver #LongCovid #iacfsme #COVID19 @itsbodypolitic @NIH