
In 2020 @CDC described #MEcfs as a debilitating illness that impacts patients' lives harshly; they put emphasis on PACING to prevent #PEM Post Exertional Malaise now called #PESE Post Exertional Symptoms Exasperation. I was glad: My illness that started with a strange FLU on June 17, 2001 (after one year of fighting BC) progressed making me homebound and bedridden. But @CDCgov refrained from declaring #MEcfs a major threat to Patients like HIV, cancer, lupus or Parkinson's. Why not?! BC 3 millions #ME sufferers are WOMEN? Like everywhere in the World. @CDC did not prepared us for the #Pandemic!!! And I took payed a heavy price. I should have known that the highest risk of catching infection is staying in institutions. For 20 years I survived in SF (with my #ME) working as a LIVE-IN Caregiver of women with dementia. I lived in the homes of my clients. So when I retired at 70yo I became... homeless. In February 2020 for the 1st time in my life I entered a large SF Shelter. Just on time for the COVID times. We wore masks & became SIP but living in a room with 100 metal beds on Women's floor that were 2 feet apart the consequences were quick but in my shelter invisible. I acquired COVID clandestinely in March only with loss of TASTE & hair, some skin problems in the eyes, nose, and mouth with hard pain also in the surrounding nerves. But I soon recognized symptoms of my CFS as the infection lingered becoming #LongCovid It helped that FEMA moved 2,500 homeless SF ppl, with me, to 25 then empty SIP hotels in which we were COMPLETELY ISOLATED: I had a room with bathroom only for myself. Our three meals were hung on the other side of the doors. We put full garbage bags outside & cleaned the rooms ourselves. Here, I could watch the news and analyzed my #LongCovid compared to #ME. I was sure that apart from their viral particularities their CORE was the same. My #LongCovid made my #MyalgicEncephalitis much worse, adding SOB & few other symptoms. I happily bathed in that luxury bath I had. TWICE. After each I acquired a horrible PEM. #LongCovid taught me what the "flair up" really is, how viscious it can be. Afterwards I was given a room in a new SRO & preparing to return to it. I have been 3 years in a LTC facility North of SF were there was help 24 hours, indeed. Here there's NO ISOLATION of any sort and no one but strived for it. There were several Covid outbreaks; I cought Omicron in January 2023 & FLiRT in July 2024. Each introduced their bunch of ills. Omicron within five months developed cataracts in my eyes, I had the 2d surgery yesterday. These eye exams put my poor ME body into positions that I would like to scream of pain. Today was a check up, all went very well. FLiRT made me go to ER bc one morning I couldn't BREATHE! At the hospital a simple Blood Test had showed GHL at the level 2.4 - the lowest they ever seen. I could be dead THE NEXT DAY had I not got professional help with many blood transfusions. Even though my LTC was responsible for not checking blood some time after the outbreak in July they made a serious effort to DUMP ME there. Ombudsman had to interfere. Impact on my morals & health was tremendous. I developed some new long term symptomatology with regular episodes of MONONUCLEOSIS, I got extremely confused & weak so had to stay in bed also in the afternoons. Like in 2001. Both variants damaged our memory further.The limb weakness made me functionally QUADRIPLEGIC!! Excellent diagnosis by my newer doctor - who also, totally out of blue skies, prescribed for moderate to severe pain Oxycodone with my last dosis of 2016: 3x30mg/pd. Which brought all my functions back in 2012. I have not even asked for #opiates. But I must return to the Single Room Occupancy hotel bc this term SRO devised for the homeless could be a medical term for ppl like me, with a severe progressive #ME of 24 years and TRIPLE #LongCovid. I hope to get IHSS & Meals on Wheels. Wish me luck & strength. @CDCgov do you get it now!? Most still




























