The U.S. federal government has announced initial funding of $1 billion to establish an Advanced Research Projects Agency for Health (ARPA-H) “tasked with building high-risk, high-reward capabilities (or platforms) to drive biomedical breakthroughs—ranging from molecular to societal—that would provide transformative solutions for all patients.” President Biden, in proposing the new body (and pressing that it ought to have a three-year $6.5 billion budget), charged it to “… have a singular purpose: to develop breakthroughs to prevent, detect, and treat diseases like Alzheimer’s, diabetes, and cancer.” Inspired by Covid research and the shortcomings of the current system, the new agency has been established to better facilitate and accelerate more innovation and breakthroughs in health. It is to be hoped that ME/CFS research benefits.
Also included in the Consolidated Appropriations Act 2022 (H.R. 2471) was an additional $82.5 million in funding for the National Institutes of Health (NIH) and provision to permit the current funding for the Center for Disease Control’s (CDC) ME/CFS programme to remain at $5.4 million.
The possibility of greater funding for ME/CFS research via ARPA-H, NIH and the CDC is certainly warranted. Coincidentally, the CDC and Medscape have produced a report highlighting that the lack of awareness about ME/CFS is widespread, and that this delays diagnosis and treatment. The study’s findings were based on an online survey completed by 3,550 adults aged 18 or over who visited WebMD.com from 22 January to 8 June 2021. The full results are behind a paywall but an article provides a few of the top-line findings –
- Most (69%) of survey respondents said they felt slightly or not at all knowledgeable about ME/CFS.
- About one-half of respondents with ME/CFS symptoms said their symptoms have a significant impact on their quality of life. 90% said their symptoms caused them to give up social, recreational, or work activities, but only about one-third have spoken to a health care professional about it. They “don’t think their health care professional will take them seriously” was a common reason for not seeking medical care.
- About 6 in 10 respondents who did talk to a health care professional about their ME/CFS symptoms felt their health care professional did not take them seriously: 64% said their health care professional told them to “get some rest.”
- 62% said the doctor told them their symptoms were due to a “mental issue.”
- 30% said they prefer to manage their symptoms on their own before seeing a health care professional.
Further, on 5th April 2022, a Memorandum on Addressing the Long-term Effects of COVID-19 was issued and addressed to all heads of executive departments. In particular,
- The Secretary of Health and Human Services (Secretary) to coordinate the US Government-wide response to the long-term effects of COVID-19.
- The Secretary, supported within the Department of Health and Human Services by the Assistant Secretary for Health and the Assistant Secretary for Mental Health and Substance Use, to publish a public report within 120 days from 5th April 2022 outlining services and mechanisms of support across agencies to assist the American public in the face of the far-reaching and long-term effects of COVID-19.
- Create a National Research Action Plan on Long COVID.
- Coordinated efforts across the public and private sectors are needed to advance progress in prevention, diagnosis, treatment, and provision of services for individuals experiencing long COVID. The Secretary, supported by the Assistant Secretary for Health and in collaboration with the Secretary of Defense, the Secretary of Labor, the Secretary of Energy, and the Secretary of Veterans Affairs, shall coordinate a Government-wide effort to develop the first-ever interagency national research agenda on long COVID, to be reflected in a National Research Action Plan. The National Research Action Plan will build on ongoing efforts across the Federal Government, including the landmark RECOVER Initiative implemented by the National Institutes of Health. The Secretary shall release the jointly developed National Research Action Plan within 120 days of the date of this memorandum.
- The National Research Action Plan shall build upon existing research efforts and include strategies to:
- help measure and characterize long COVID in both children and adults, including with respect to its frequency, severity, duration, risk factors, and trends over time;
- support the development of estimates on prevalence and incidence of long COVID disaggregated by demographic groups and symptoms;
- better understand the epidemiology, course of illness, risk factors, and vaccine effectiveness in prevention of long COVID;
- advance our understanding of the health and socioeconomic burdens on individuals affected by long COVID, including among different race and ethnicity groups, pregnant people, and those with underlying disabilities;
- foster development of new treatments and care models for long COVID based on a better understanding of the pathophysiological mechanisms of the SARS-CoV-2 virus;
- inform decisions related to high-quality support, services, and interventions for long COVID;
- improve data-sharing between agencies and academic and industry researchers about long COVID, to the extent permitted by law; and
- specifically account for the pandemic’s effect on underserved communities and rural populations.
Why, one asks, is there not a similar Memorandum for ME/CFS?
