Nina A Tomei, MD Profile picture
Life derailed #Sjogrens #MECFS #POTS #LongVax Child with #LongCovid Surviving Not Living. Sick Not Tired. Tweets not medical advice. We just want our lives back
BELLYLAUGHTER2🐭 Profile picture 1 subscribed
Mar 2, 2023 20 tweets 7 min read
@Dakota_150 Wish I could read this one.

"Johnson could still see from genetic data that viral particles were being freshly made and expelled for more than a year — many times longer than a typical two-week Covid infection." 😲 @Dakota_150 "Scientists are exploring the possibility that some of the most infectious versions of the coronavirus...came from chronically infected individuals whose immune systems were weakened by disease, drugs or both." /1
Mar 1, 2022 22 tweets 6 min read
If you cannot access an #MECFS doctor, following are suggestions to treat possible co-morbidities & get your symptoms documented in your medical record:

1) Ensure thorough work-up for causes of fatigue. Your primary care provider can order most of these tests: /1 This is a great resource for tests to request or check to see if you've had done to evaluate for underlying causes of fatigue: /2

batemanhornecenter.org/wp-content/upl…
Feb 7, 2022 11 tweets 5 min read
@sfcem_mexico It may help for those experiencing co-morbidities of ME/CFS to find specialists who may be able to help some symptoms:

1) Cardiologist to test for POTS w/NASA Lean Test or Tilt Table; sometimes treatment for POTS helps (sometimes it doesn't); /1 @sfcem_mexico 2) Neurologist who can diagnose Small Fiber Neuropathy w/skin biopsy; ideal if they understand Autoimmune Autonomic Dysfunction;

3) Rheumatologist to investigate autoimmunity, particularly Sjogren's; sometimes treatment helps (sometimes it doesn't); /2
Feb 5, 2022 15 tweets 6 min read
#Endometriosis is now considered a systemic disease rather than a disease predominantly affecting the pelvis. Endometriosis affects metabolism in liver & adipose tissue, leads to systemic inflammation, & alters gene expression in the brain..."

sciencedirect.com/science/articl… #Endometriosis affects 5–10% of women of reproductive age...Despite this high prevalence, disease recognition is inadequate & diagnosis time ranges
from 4 to 11 years, with 65% of women being initially
misdiagnosed." 65%!! /2