U.S. COVID-19 Long Haulers Bill

In May 2020, 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, was the first, specific Congressional legislation on ME/CFS and, if passed, it would have led to 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. which follows the progress of such bills now lists H.R.5057 as ‘Died’.

Fast forward to April 2021 and through a global pandemic – a new Bill has been introduced by Representatives Don Beyer and Jack Bergman to the US House of Representatives entitled ‘COVID-19 Long Haulers Act’ (H.R. 2754). The Bill, supporters state, contains provisions which could benefit people with ME/CFS, and also applies to the broader community who suffer from post-viral illness.

Specifically, it authorises the Patient-Centered Outcomes Research Trust Fund to fund research into the symptoms of COVID– 19, and for other purposes. Particular provisions include nationwide medical education (with ME/CFS included), expanding prevalence tracking (with ME/CFS mentioned), and research about access to post-viral care and diagnostics (which applies to everyone with post-viral illness). It instructs research be carried out on

… any other relevant questions or issues related to individuals who experience a diagnosis of, treatment for, and management of care with COVID–19, PASC, or related post-viral illnesses overlapping with PASC.

With fund appropriation running into many tens of millions of US dollars, if passed, ME/CFS research could receive a very welcome fillip in funding. Let us hope the Bill does not go the same way as its 2020 predecessor. Progress can be followed below