{"id":26970,"date":"2020-07-08T06:27:55","date_gmt":"2020-07-08T06:27:55","guid":{"rendered":"https:\/\/wames.org.uk\/cms-english\/?p=26970"},"modified":"2020-07-08T06:29:10","modified_gmt":"2020-07-08T06:29:10","slug":"long-haulers-to-the-rescue-barrage-of-covid-19-media-stories-studies-registries-spells-hope-for-me-cfs","status":"publish","type":"post","link":"https:\/\/wames.org.uk\/cms-english\/long-haulers-to-the-rescue-barrage-of-covid-19-media-stories-studies-registries-spells-hope-for-me-cfs\/","title":{"rendered":"\u201cLong Haulers\u201d to the rescue? Barrage of Covid-19 media stories, studies & registries spells hope for ME\/CFS"},"content":{"rendered":"

Health rising blog post<\/strong>, by Cort Johnson: \u201cLong Haulers\u201d to the rescue? Barrage of Covid-19 media stories, studies and registries spells hope for ME\/CFS<\/a>, 5 July 2020<\/h3>\n

 <\/p>\n

Media Barrage<\/strong><\/h3>\n
\"\"

Sars-Cov-2 has wreaked havoc but it does appear to be opening new possibilities for ME\/CFS<\/p><\/div>\n

A veritable avalanche of stories \u2013 the C19Recovery Awareness<\/a> website provides a link to approximately 50 articles since June 1st \u2013 have highlighted\u00a0 the problems that many people have had recovering from the coronavirus. With eight stories published in the past four days, they\u2019re still coming at a good clip.<\/p>\n

That is all good news. These media reports \u2013 some pitched by organizations like Solve ME\/CFS and ME Action \u2013 are crucial in getting us more support. The U.S., inadvertently, is helping a great deal to keep the story in the news.\u00a0 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.<\/p>\n

The U.S.\u2019s 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\u2019s bad news for them, but it\u2019s good news for everyone saddled with a post-viral illness.<\/p>\n

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.<\/p>\n

This isn\u2019t, 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.<\/p>\n

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\u2019s 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.<\/p>\n

Read more about the media stories of people’s recovery problems and the research into Covid-19<\/a><\/p>\n

Conclusion<\/strong><\/h3>\n

The media interest is there \u2013 and a follow up blog will show that it\u2019s producing results for us. Two big longitudinal immune-based and \u201comics\u201d NIH studies, and a smaller but intensive study featuring Avindra Nath, plus the OMF-funded Stanford and Harvard \u201comics\u201d 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.<\/p>\n

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.<\/p>\n

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\u2019ll be interesting to see if, after six months, the still ill post-COVID-19 patients are given an ME\/CFS diagnosis.<\/p>\n","protected":false},"excerpt":{"rendered":"

Health rising blog post, by Cort Johnson: \u201cLong Haulers\u201d to the rescue? Barrage of Covid-19 media stories, studies and registries spells hope for ME\/CFS, 5 July 2020   Media Barrage A veritable avalanche of stories \u2013 the C19Recovery Awareness website … Continue reading →<\/span><\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[5683,618,5821],"class_list":["post-26970","post","type-post","status-publish","format-standard","hentry","category-news","tag-coronavirus","tag-cort-johnson","tag-post-covid-19-fatigue"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p5qkYK-710","_links":{"self":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/26970","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/comments?post=26970"}],"version-history":[{"count":2,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/26970\/revisions"}],"predecessor-version":[{"id":26974,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/posts\/26970\/revisions\/26974"}],"wp:attachment":[{"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/media?parent=26970"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/categories?post=26970"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/wames.org.uk\/cms-english\/wp-json\/wp\/v2\/tags?post=26970"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}