Andrea Fighting for #MECFS Diagnostic Biomarkers
@mecfsnanoneedle.bsky.social
Severe #MECFS Patient
Bedridden. No energy to speak.
#MECFSDiagnosticBiomarkers
Drug companies need a #MECFS and #LongCovid diagnostic blood test for successful clinical trials.
https://mecfsdiagnosticbiomarkers.substack.com/
Bedridden. No energy to speak.
#MECFSDiagnosticBiomarkers
Drug companies need a #MECFS and #LongCovid diagnostic blood test for successful clinical trials.
https://mecfsdiagnosticbiomarkers.substack.com/
Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers
Sign the Petition
Save Savannah Victora-May - Prevent Another ME/CFS Tragedy
www.change.org
July 31, 2025 at 1:40 PM
Reposted by Andrea Fighting for #MECFS Diagnostic Biomarkers
Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!
July 31, 2025 at 1:38 PM
Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!
PEM is required for a ME/CFS diagnosis. That means only 55% of the UK Biobank ME/CFS samples are ME/CFS samples. Meaning that 45% of UK ME/CFS samples are *NOT* ME/CFS samples because they don't have PEM.
Shouldn't Non-PEM samples have been excluded as not meeting the definition of ME/CFS?
Shouldn't Non-PEM samples have been excluded as not meeting the definition of ME/CFS?
June 21, 2025 at 3:50 PM
PEM is required for a ME/CFS diagnosis. That means only 55% of the UK Biobank ME/CFS samples are ME/CFS samples. Meaning that 45% of UK ME/CFS samples are *NOT* ME/CFS samples because they don't have PEM.
Shouldn't Non-PEM samples have been excluded as not meeting the definition of ME/CFS?
Shouldn't Non-PEM samples have been excluded as not meeting the definition of ME/CFS?
I am puzzled.
"Among the ME/CFS cases with available Pain Questionnaire data, 55% reported long-lasting PEM-like symptoms (“Methods”). This allowed us to compare blood trait results for those with PEM versus those without PEM symptoms."
By definition, Patients without PEM are not ME/CFS patients.
"Among the ME/CFS cases with available Pain Questionnaire data, 55% reported long-lasting PEM-like symptoms (“Methods”). This allowed us to compare blood trait results for those with PEM versus those without PEM symptoms."
By definition, Patients without PEM are not ME/CFS patients.
June 21, 2025 at 3:46 PM
I am puzzled.
"Among the ME/CFS cases with available Pain Questionnaire data, 55% reported long-lasting PEM-like symptoms (“Methods”). This allowed us to compare blood trait results for those with PEM versus those without PEM symptoms."
By definition, Patients without PEM are not ME/CFS patients.
"Among the ME/CFS cases with available Pain Questionnaire data, 55% reported long-lasting PEM-like symptoms (“Methods”). This allowed us to compare blood trait results for those with PEM versus those without PEM symptoms."
By definition, Patients without PEM are not ME/CFS patients.
Thank you! 💜
January 28, 2025 at 4:15 AM
Thank you! 💜
📌
January 2, 2025 at 3:16 PM
📌
Once we can point to proteins, or genes or MicroRNAs it will get easier. In my opinion, anyway. The truth of ME/CFS will never be easy to explain- but if we can use some proteins for the highlights in time, the world will get it.
December 23, 2024 at 2:28 PM
Once we can point to proteins, or genes or MicroRNAs it will get easier. In my opinion, anyway. The truth of ME/CFS will never be easy to explain- but if we can use some proteins for the highlights in time, the world will get it.