Light Storm
morninglightstorm.bsky.social
Light Storm
@morninglightstorm.bsky.social
Agree. I had ME at 12. Lots of red flags based on my experience-- like pushing Milly to walk post-ME diagnosis, fear of needles causing 2 month testing delay until she caved, weeks of "careful discussion" where the parents didn't disclose known antibiotic side effects (no informed consent??)
September 30, 2025 at 6:00 AM
As someone who had ME/CFS at age 12 and still is ill today at age 28, this article makes me worried. What if both mainstream and Lyme docs fail Milly? This possibility doesn't seem adequately explored in the article. Also, you have perpetuated ME/CFS misinformation, as others have pointed out.
September 30, 2025 at 3:46 AM
If you live in CA, Kaiser actually does have a secret CFS consultative service that is much better than their standard care. A lot of doctors don't know how to send their patients there, but you can manually push through a referral. Feel free to dm me for more info, I'm a patient there.
May 2, 2025 at 2:59 PM
If you're talking about the NorCal consultative service, feel free to dm me for more info. I've been a patient there almost since it started.
May 2, 2025 at 2:55 PM
If you update it, can you use accurate stock footage? www.mecfs.de/stockphotos/ or europeanphotoawards.com/winner-info.... would be an example. The ME/CFS community hates the "help I've accidentally superglued my fingers to my face" stock images that do not portray the severe symptoms of ME/CFS.
January 19, 2025 at 9:49 PM