Health rising blog post, by Cort Johnson: “Long Haulers” to the rescue? Barrage of Covid-19 media stories, studies and registries spells hope for ME/CFS, 5 July 2020
A veritable avalanche of stories – the C19Recovery Awareness website provides a link to approximately 50 articles since June 1st – have highlighted the problems that many people have had recovering from the coronavirus. With eight stories published in the past four days, they’re still coming at a good clip.
That is all good news. These media reports – some pitched by organizations like Solve ME/CFS and ME Action – are crucial in getting us more support. The U.S., inadvertently, is helping a great deal to keep the story in the news. Six months into the coronavirus pandemic, infections have slowed down markedly in Europe, Asia and Australia but have picked up steam in the U.S., South America and other countries.
The U.S.’s inability to get its act together, as tragic as it is, does present a silver lining: the more people that get infected, the more people will likely have difficulty recovering, and the more people will come down with an ME/CFS-like condition. That’s bad news for them, but it’s good news for everyone saddled with a post-viral illness.
Plus it could be argued that the more people that get sick, the more chance we have of getting the resources to develop treatments that will help them and others get well.
This isn’t, after all, just about Covid-19 or chronic fatigue syndrome (ME/CFS). The insights learned from this research may be able to be applied to every disease that can be triggered by an infection including fibromyalgia, POTS and autoimmune diseases. Potentially millions of people could be helped.
The media is playing a crucial role in getting the COVID-19/ME/CFS link out, but some media stories are better than others. It’s crucial that a link be made between ME/CFS and problems recovering from the virus. The best media stories for us involve people who look like ME/CFS patients; i.e. they are healthy younger or middle-aged people who were never hospitalized and who remain ill several months later. The worst news stories focus on hospitalized patients, who often have underlying conditions and never mention ME/CFS.
The media interest is there – and a follow up blog will show that it’s producing results for us. Two big longitudinal immune-based and “omics” NIH studies, and a smaller but intensive study featuring Avindra Nath, plus the OMF-funded Stanford and Harvard “omics” studies provide cause to hope that we may finally be able to catch ME/CFS in the act during that crucial period when an infection somehow devolves into a life-long illness.
They are a good start. We need more and we will hopefully get them as some of the 25 CMDRP grant applications get funded and as more NIH grants get funded as well. One would hope and expect that a well-funded Request for Applications (RFA) grant opportunity to study the long-term affects of COVID-19 will pop up soon at the NIH.
The birth of numerous COVID-19 registries and tracking efforts provides hope that the extent and seriousness of post-viral illnesses such as ME/CFS will finally hit home in the medical community. It’ll be interesting to see if, after six months, the still ill post-COVID-19 patients are given an ME/CFS diagnosis.