Why
“ME/CFS lacks a single sensitive and specific diagnostic test, making the development of a simple test with the potential for early diagnosis a critical goal. Early diagnosis would enable patients to manage their conditions more effectively, potentially leading to new discoveries in disease pathways and treatment development”.- (Xu, J et al, 2023. Advanced Science)
Dr. Ron W Davis, PhD Biochemistry and Genetics, Director Stanford Genome Centre presents Plan for ME/CFS to Albert Einstein College of Medicine in 2019.
The reasons it is important to fund, advocate, and support
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) diagnostic biomarkers.
* Fast, safe, accurate, low-cost, objective ME/CFS diagnosis that can be administered in the doctor’s office or at home.
* Blood screen to ensure the safety of the Blood Supply and Organ Donation. ME/CFS is blood-banned in 5 countries without plans or funding in place to ensure the safety of the blood supply.
* For FDA approval of ME/CFS Treatments. In 2012, Ampligen (OTC Pink: AIMI) was denied approval as an ME/CFS treatment because of a lack of a diagnostic blood test.
* To improve ME/CFS biomedical education for doctors
* To rally public support behind ME/CFS patients and their families
* To give governments datasets and an undeniable reason to build ME/CFS medical infrastructures.
* To prevent medical doctors from psychologizing and sectioning ME/CFS patients.
* To prevent medical doctors from refusing life-saving treatments like feeding tubes, and starving ME/CFS patients to death in hospitals.
* To provide accurate diagnosis, treatment approvals, pharmaceutical pipelines, clinical trial networks, and medical infrastructures in hospitals so that ME/CFS patients get the medical, social, and public supports they need to reduce and prevent ME/CFS patients choosing Medical Assistance In Dying.
* Make ME/CFS Visible to family members, doctors, scientists, health agencies, governments, journalists, and philanthropists. With a diagnostic blood test ME/CFS patients will be able to be accurately tracked across various important metrics that should theoretically solve our funding problems.
* To bring Pharmaceutical companies and pharmaceutical money to the table to solve ME/CFS. The FDA, and therefore pharmaceutical companies, require Entry and Endpoints for successful clinical trials. Biomarkers are necessary to demonstrate that the drug is effective, as well as to confirm that it is being tested on the intended patient population.
* End the Erasure of ME/CFS