Not Recovered

08/08/2025

Silence. Darkness. Pain.
A life fading behind closed doors.
Today, we speak for those who cannot.

05/08/2025

Research shows ME/CFS is one of the most under-researched diseases worldwide, considering its prevalence and severity.

A major reason: it mostly affects women, fueling a false psychosomatic narrative.



Source:https://www.nivel.nl/sites/default/files/bestanden/1004310.pdf

30/07/2025

ME/CFS is one of the most prevalent and debilitating neurological conditions – yet many neurologists still don’t know how to recognize or diagnose it.

23/04/2025

Imagine your body breaking down—and no one believes you.
ME/CFS affects millions around the world. It’s one of the most common neurological diseases, yet still one of the most ignored. Why? Because for decades, it was misunderstood, dismissed, and silenced.

Many spend their lives in dark rooms, too weak to sit, too forgotten to be helped.
Their quality of life? Among the lowest of any disease.

We can’t keep looking away.
ME/CFS is real. ME/CFS destroys lives. ME/CFS deserves recognition

Sources:
https://pubmed.ncbi.nlm.nih.gov/38689398/

https://www.nationalmssociety.org/understanding-ms/what-is-ms/who-gets-ms/how-many-people

https://www.cdc.gov/epilepsy/data-research/facts-stats/index.html

https://www.apdaparkinson.org/article/parkinsons-disease-registries/

https://www.cdc.gov/me-cfs/about/index.html

https://journals.plos.org/plosone/article/figures?id=10.1371/journal.pone.0132421

18/04/2025

In a survey of Long Covid patients in Germany, 56% reported that their health worsened as a result of medical treatment.

A deeply alarming signal.



Source: https://www.sciencedirect.com/science/article/pii/S1865921725000467

20/02/2024

03/02/2024

This picture is my husband and I’s dream wedding in Zion National Park December 2021. Who would have guessed we would have our dream life stolen 7 months later. We finally reached our goal of living in the Southwest July 2021, able to enjoy so many amazing beautiful destinations, and it was all taken away one year later. Covid July 2022, absolutely fully bedridden and unable to care for myself at all by February 2023. My husband had to take care of all my needs down to picking and brushing my teeth with a baby toothbrush, spoon feeding me in bed, and wiping me down. And he’s 11 years my senior, people joked about how I’m going to have to be taking care of him, who could have foreseen his bride being struck down so hard? I feel so very sorry for him and the dream life he had planned gone, his retirement spent caring for me 24/7. It was absolutely terrifying having my life reduced to only a bed and absolute total darkness with ear plugs and noise canceling headphones over my ears, couldn’t even have my cats near me because I couldn’t stand the stimulation and was too weak to push them away if I had to. Horrifying being in total darkness and silence 24/7, trapped alone with my thoughts and fear. Previously I was so extremely active, hiking regularly, water aerobics, pickleball, ping pong, buggy riding in Sedona, traveling. The most active, happiest, and healthiest I’ve ever been in my life and it was all stolen from us. There needs to be more information out to people, more monies released for research, and more education for practitioners and encouragement to prescribe off label medications to try to ease victims suffering. It is only through an off label medication written by a caring daring practitioner that I am able to look at this phone screen again. We need more monies, more help, more care and more education to practitioners. The disease progressed so far in my case due to gaslighting and lack of care or education of practitioners, which by the way I spent five days in a local hospital and none of the doctors agreed with the idea that I quite possibly was suffering from a post viral illness. Think about that.

31/01/2024

30/01/2024

Diagnosed with ME/CFS since 2015, EBV virus, Lyme disease, 18 operations and still no end to the suffering in sight.