In May, a Bill was introduced into the US Congress (H.R. 5057) by Representative Jaime Raskin calling for “the expansion, intensification, and coordination of the programs and activities of the National Institutes of Health with respect to post-viral chronic neuroimmune diseases, specifically myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), to support the COVID–19 response, and for other purposes.” The Bill, the first, specific Congressional legislation on ME/CFS, has been remitted to the Committee on Energy and Commerce.
If passed, an additional $60 million would be allocated to existing ME/CFS research projects and into researching connections between ME/CFS and COVID-19 survivors over a 4 year period to 2024.
The box below will update about the current status of the bill.
The Bill text lays bare a number of stark facts about ME/CFS which ought not fail to persuade Congress that additional funding is not only long overdue but desperately needed –
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, chronic, and multisystemic disease associated with survivors of viral infections. It affects individuals of every age, racial, ethnic, and socioeconomic group, including children. Research shows that ME/CFS is two to four times more likely to occur in women than men.
- ME/CFS is characterized by chronic or lifelong symptoms across multiple body systems including post-exertional malaise (PEM), brain inflammation, fever, pain, neurological, immune and cognitive dysfunction, and swollen glands or tender lymph nodes which are most likely to appear following a viral infection, like coronaviruses, Epstein-Barr, or Q-River fever.
- The cause of ME/CFS is unknown. There is no diagnostic test for ME/CFS, and there is no treatment for ME/CFS that is approved by the US Food and Drug Administration.
- Patients with ME/CFS frequently suffer for years before receiving an accurate (sic) diagnosis and are often given harmful treatment recommendations exposing them to unnecessary and costly tests and procedures, as well as needless suffering and expense.
- The economic impact of ME/CFS is high. The annual cost in the United States for ME/CFS is estimated to be between $17,000,000,000 and $24,000,000,000 in medical expenditures and lost productivity. The overwhelming majority of people with ME/CFS are unable to work.
It would be churlish to query how funds will be allocated between ME/CFS research as opposed to concentrating efforts through the prism of COVID-19. The US National Academy of Medicine estimated that up to 80% of cases of ME/CFS arose after a viral infection and with the virus which leads to COVID-19 infecting (as of May 27, 2020) 1.7 million Americans and causing over 100,000 deaths, the need for research is pressing. However, ME/CFS purely on its own merits (namely severity, chronic under-investigation and prevalence) warrants and deserves significant funding irrespective of coronavirus and COVID-19.
According to the Bill, the authorities “shall conduct and support research and related activities concerning the diagnosis, treatment, and risk factors of post-viral chronic neuroimmune diseases, specifically myalgic encephalomyelitis/chronic fatigue syndrome……, COVID–19 patients exhibiting ME/CFS symptoms, and survivors of COVID–19 with ME/CFS. Such research shall attempt to better understand the underlying cause or causes of ME/CFS to reduce the rate of onset of ME/CFS in COVID–19 survivors or identify effective treatments and improve outcomes for COVID–19 survivors with ME/CFS.” Funds would be also be available for data collection and education.
ME Research UK heartily welcomes the possibility of additional funding and the recognition of the reality of ME/CFS but, as with the European Parliament’s Resolution on ME/CFS, neither a Bill nor a Resolution is sufficient. The Commission of the European Union must allocate/ring-fence funding and Congress must pass the Bill before text becomes action.