We the undersigned:

 Scientists, Medical Doctors, Researchers, 
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients (1), Long Covid patients, and the Global general public affirm that: 

*Whereas M.E. was designated a neurological disease by the WHO in 1969 at G93.3 

*Whereas CFS was designated a neurological disease by the WHO in 1992 at G93.3

*Whereas ME and CFS are coded under Post Viral Fatigue Syndromes in WHO ICD 11 at 8E49  

*Whereas the global population of ME/CFS patients was estimated to be between 20-67 Million patients prior to the pandemic and we have seen an explosion in the number of ME/CFS patients because of COVID-19 (2)

*Whereas half of LongCovid is ME/CFS. (3)

*Whereas a significant amount of ME/CFS biomedical research has been replicated in LongCovid (4) 

*Whereas ME/CFS has no treatment and no diagnostic test 

*Whereas most medical professionals are not educated about ME/CFS or how to treat the symptoms and comorbidities that can be treated.

*Whereas ME/CFS patients show an abnormal response to exercise in a
 2-day Cardio Pulmonary Exercise Testing but versions of Graded Exercise Therapy (GET) and CBT (cognitive behavioral therapy) continue to be studied and used by non-evidence-based academics and medical professionals (5) 

*Whereas ME/CFS and LongCovid are multi-systemic disabling diseases that can be fatal. (6) (7) 

*Whereas ME/CFS is blood-banned in the UK, Canada, Australia, and New Zealand without having a blood test to identify undiagnosed patients and without a public health campaign to notify the general public. (8)

*Whereas 75% of ME/CFS patients are too disabled to work and 25% of ME/CFS patients are bedridden and unable to eat, talk, or walk. (9)

*Whereas current studies show that there is a molecular basis for ME/CFS and that molecular tests in a lab situation can distinguish between ME/CFS patients, Healthy Controls, and MS Patients. (10) (11) (12)

*Whereas the economic impact of Long Covid ME/CFS because of COVID-19 is estimated to be 3.1 Trillion dollars in the US alone (13)

*Whereas ME/CFS continues to be the most underfunded to disease burden disease (14)

*Whereas government funding for potential diagnostic tests is being blocked by grant reviewers and institutions 

*Whereas 75% of ME/CFS patients are women even though it is a disease that can affect anyone at any time. 

*Whereas the pursuit of the biomedical and pharmacological approach to diseases that predominantly affect women is not equal in funding or political willingness to find molecular tests, and pharmacological solutions despite the expensive economic impact and human rights issues in failing in that pursuit  (15)

We the undersigned call upon WHO Director-General Dr. Tedros Adhanom Ghebreyesus, Ph.D., to immediately: 

* Call for and Fund the Rapid Acceleration of a Molecular Diagnostic test or panel for ME/CFS from all countries hit by COVID-19 

* Declare ME/CFS to be a global emergency worthy of funding to its disease burden  

* Call for a Global Strategy to fund and research ME/CFS from the biomedical and pharmacological approach

* Call for ME/CFS cases and deaths to be surveilled, counted, and recorded

* Call for a strong definition of ME/CFS based on the ICC/CCC and unified research protocol for all ME/CFS researchers to adhere

* Call upon government policies to be guided  and led by the biomedical Scientists at Open Medicine Foundation, PolyBio, and Invest In ME

* That the WHO begin a public health campaign to educate the general public about ME/CFS, its symptoms according to the ICC/CCC, prognosis, and the human rights issues and economic impact arising from 50 years of inaction

* Call for the Pharmacological industry to find pharmacological solutions to the many identified biological differences between ME/CFS patients and healthy controls.
 
*Call for a policy change to the rapid acceleration of the biomedical and pharmacological approach to diagnosing and treating disease in women. 

The time for bold action is now. 

Sincerely, 

Andrea Martell 
Severe ME/CFS patient 
Bachelor of Journalism with Honours 
Carleton University 
_________________________________________________________________________________

Scientists 

Professor Todd Davenport, PT, DPT, MPH, OCS
University of the Pacific
Scientific Advisor Workwell Foundation 

Patient Organizations 

RME Kronoberg Blekinge ME-patient association in south eastern Sweden 

Journalists 

Tracie White 
Science Writer for Stanford University
Author of "The Puzzle Solver" 

 

References: 

1. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management
Bateman, Lucinda et al.
Mayo Clinic Proceedings, Volume 96, Issue 11, 2861 - 2878 
DOI:https://doi.org/10.1016/j.mayocp.2021.07.004

2. Hanson MR, Germain A. Letter to the Editor of Metabolites. Metabolites. 2020 May 25;10(5):216. doi: 10.3390/metabo10050216. PMID: 32466160; PMCID: PMC7281557. 

3. Davis, H.E., McCorkell, L., Vogel, J.M. et al. Long COVID: major findings, mechanisms and recommendations. Nat Rev Microbiol 21, 133–146 (2023). https://doi.org/10.1038/s41579-022-00846-2 

4. Replicated Findings 

5. 42 Studies showing 2-Day CPET as objective biomarker 

6. Insights Biomed. 2017;2(2). pii: 11. doi: 10.21767/2572-5610.10027. Epub 2017 Jun 12.Differentiating Multiple Sclerosis from Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. Jason LA1, Ohanian D1, Brown A1, Sunnquist M1, McManimen S1, Klebek L1, Fox P1, Sorenson M1.

7. Death in Chronic Fatigue Syndrome (ME/CFS) - What has it Told Us? The Autopsy Files - Health Rising  

8. https://me-pedia.org/wiki/Blood_donation#Transmission_of_ME/CFS_on_blood 

9. National Academy of Medicine (previously called the Institute of Medicine). Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an Illness. [Internet]. National Academies Press; 2015. Available from: https://doi.org/10.17226/19012. 

10. Esfandyarpour, R.; Kashi, A.; Nemat-Gorgani, M.; Wilhelmy, J.; Davis, R.W. A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Proc. Natl. Acad. Sci. USA 2019, 116, 10250–10257 https://doi.org/10.1073/pnas.1901274116

11. Xu, J., Lodge, T., Kingdon, C., Strong, J. W. L., Maclennan, J., Lacerda, E., Kujawski, S., Zalewski, P., Huang, W. E., Morten, K. J., Developing a Blood Cell-Based Diagnostic Test for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Peripheral Blood Mononuclear Cells. Adv. Sci. 2023, 2302146. https://doi.org/10.1002/advs.202302146 

12. (Pre-print)Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID
Zheng Liu, Claudia Hollmann, Sharada Kalanidhi, Arnhild Grothey, Sam Keating, Irene Mena-Palomo, Stephanie Lamer, Andreas Schlosser, Agnes Kaiping, Carsten Scheller, Franzeska Sotzny, Anna Horn, Carolin Nürnberger, Vladimir Cejka, Boshra Afshar, Thomas Bahmer, Stefan Schreiber, Jörg Janne Vehreschild, Olga Miljukov, Christian Schäfer, Luzie Kretzler, Thomas Keil, Jens-Peter Reese, Felizitas A Eichner, Lena Schmidbauer, Peter U Heuschmann, Stefan Störk, Caroline Morbach, Gabriela Riemekasten, Niklas Beyersdorf, Carmen Scheibenbogen, Robert K Naviaux, Marshall Williams, Maria E Ariza, Bhupesh K Prusty
medRxiv 2023.06.23.23291827; doi: https://doi.org/10.1101/2023.06.23.23291827 

13. The Economic Cost of Long Covid: An Update 

14. Mirin AA, Dimmock ME, Jason LA. Research update: The relation between ME/CFS disease burden and research funding in the USA. Work. 2020;66(2):277-282. doi: 10.3233/WOR-203173. PMID: 32568148. 

15. (2023). Women’s health: End the disparity in funding. https://doi.org/10.1038/d41586-023-01472-5