{"id":84516,"date":"2024-03-12T09:51:28","date_gmt":"2024-03-12T09:51:28","guid":{"rendered":"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/?p=84516"},"modified":"2024-03-12T10:33:30","modified_gmt":"2024-03-12T10:33:30","slug":"long-covid-patients-say-their-voices-and-their-struggle-are-being-ignored","status":"publish","type":"post","link":"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/2024\/03\/12\/long-covid-patients-say-their-voices-and-their-struggle-are-being-ignored\/","title":{"rendered":"Long Covid patients say their voices and their struggle are being ignored"},"content":{"rendered":"\n<h4 class=\"wp-block-heading\">As many as 1.9 million people in the UK have been affected by Long Covid, so why isn&#8217;t it talked about more often? <\/h4>\n\n\n\n<p>PEOPLE suffering the long-term consequences of Covid-19 feel ignored by government and the public, they say. <\/p>\n\n\n\n<p>The Welsh module of the Covid inquiry runs until March 14, but even though <a href=\"https:\/\/www.merseycare.nhs.uk\/long-covid-awareness\">International Long Covid Awareness Day<\/a> falls on March 15, the issue is not on the agenda. <\/p>\n\n\n\n<div class=\"wp-block-media-text is-stacked-on-mobile\"><figure class=\"wp-block-media-text__media\"><img decoding=\"async\" width=\"1024\" height=\"768\" loading=\"lazy\" src=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-1024x768.jpg\" alt=\"\" class=\"wp-image-84535 size-full\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-1024x768.jpg 1024w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-300x225.jpg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-770x578.jpg 770w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-1536x1152.jpg 1536w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-293x220.jpg 293w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-1400x1050.jpg 1400w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842.jpg 2016w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><noscript><img decoding=\"async\" width=\"1024\" height=\"768\" src=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-1024x768.jpg\" alt=\"\" class=\"wp-image-84535 size-full\" srcset=\"https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-1024x768.jpg 1024w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-300x225.jpg 300w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-770x578.jpg 770w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-1536x1152.jpg 1536w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-293x220.jpg 293w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842-1400x1050.jpg 1400w, https:\/\/cardiffjournalism.co.uk\/thecardiffian\/wp-content\/uploads\/sites\/9\/2024\/03\/IMG_3842.jpg 2016w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/><\/noscript><\/figure><div class=\"wp-block-media-text__content\">\n<p>Gareth Evans, 46 wants to change that.  He started a fundraiser seeking \u00a3450 to put up a billboard in Cardiff to raise awareness of Long Covid. He ended up raising more than expected and has put the extra money into similar billboards wherever the Covid inquiry goes next.<\/p>\n\n\n\n<p>The billboard is on Cowbridge Road East, opposite the ESSO garage. <\/p>\n<\/div><\/div>\n\n\n\n<p>\u201cThere needs to be a greater focus on the long-term ramifications of the virus, so I\u2019m going to be at the inquiry every day, just so someone with Long Covid is actually there,\u201d said Gareth, who has suffered from Long Covid since April 2020.<\/p>\n\n\n\n<p>In March 2023 it was estimated that 53,000 people in Wales alone had Long Covid. Doctors at UCL Hospital think somewhere between one and five percent of the UK population are affected by the disease.<\/p>\n\n\n\n<blockquote class=\"wp-block-quote is-layout-flow wp-block-quote-is-layout-flow\">\n<p>\u201cLong Covid continues to limit the lives of millions in the UK and countless others around the globe,\u201d<\/p>\n<cite>Professor Danny Altmann. &nbsp;<\/cite><\/blockquote>\n\n\n\n<p>Victims of Long Covid say that despite a possible 1.9 million people affected across the UK, there is a lack of political and media coverage of the disease, which they worry leads to apathy from the public.<\/p>\n\n\n\n<p>Dr David Putrino, a leading American voice on Long Covid of the Icahn School of Medicine at Mount Sinai, referred to the illness as a \u201cmass disabling event\u201d.<\/p>\n\n\n\n<h4 class=\"wp-block-heading has-text-align-center\"><strong>What is Long Covid?<\/strong><\/h4>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe class=\"zeen-lazy-load-base zeen-lazy-load\" title=\"How does Long Covid affect your daily life?\" width=\"1200\" height=\"675\" src=\"about:blank\" data-lazy-src=\"https:\/\/www.youtube.com\/embed\/VJvU0jxEb-U?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><noscript><iframe title=\"How does Long Covid affect your daily life?\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/VJvU0jxEb-U?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><\/noscript>\n<\/div><figcaption class=\"wp-element-caption\">Two Long Covid patients discuss how it affects their daily life<\/figcaption><\/figure>\n\n\n\n<p>In simple terms, Long Covid is identified as Covid symptoms that have lasted longer than 12 weeks.<\/p>\n\n\n\n<p>However, those symptoms can manifest differently in different people. Which makes it much more difficult to track and treat.<\/p>\n\n\n\n<p>People suffering from the disease are not confident they will get the treatment they need, especially since there is no one-size-fits-all treatment.<\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-wp-embed is-provider-flourish wp-block-embed-flourish\"><div class=\"wp-block-embed__wrapper\">\n<iframe class=\"zeen-lazy-load-base zeen-lazy-load wp-embedded-content\" sandbox=\"allow-scripts\" security=\"restricted\" title=\"Interactive or visual content\" src=\"about:blank\" data-lazy-src=\"https:\/\/flo.uri.sh\/visualisation\/17063718\/embed#?secret=f1mf9M9ZHD\" data-secret=\"f1mf9M9ZHD\" frameborder=\"0\" scrolling=\"no\" height=\"575\" width=\"700\"><\/iframe><noscript><iframe class=\"wp-embedded-content\" sandbox=\"allow-scripts\" security=\"restricted\" title=\"Interactive or visual content\" src=\"https:\/\/flo.uri.sh\/visualisation\/17063718\/embed#?secret=f1mf9M9ZHD\" data-secret=\"f1mf9M9ZHD\" frameborder=\"0\" scrolling=\"no\" height=\"575\" width=\"700\"><\/iframe><\/noscript>\n<\/div><figcaption class=\"wp-element-caption\">According to an ONS study in 2023, based on figures of people at home, with self-reported Long Covid symptoms, these were the most likely symptoms.<\/figcaption><\/figure>\n\n\n\n<p>\u201cIt\u2019s so difficult for people to prove they have it, especially when GPs don\u2019t know for sure what it is,\u201d said Mr Evans.<\/p>\n\n\n\n<p>Part of the issue is that, with one key symptom being tiredness, it may not be taken as seriously as it should be.<\/p>\n\n\n\n<p>Dr Emma Wall, , an Infectious Diseases expert at University College London Hospital, explains Long Covid as \u201ca disconnect between the amount of oxygen in your blood and the amount of oxygen in the tissue that needs it\u201d. This may lead to tiredness but can also lead to far more severe side effects.<\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-wp-embed is-provider-flourish wp-block-embed-flourish\"><div class=\"wp-block-embed__wrapper\">\n<iframe class=\"zeen-lazy-load-base zeen-lazy-load wp-embedded-content\" sandbox=\"allow-scripts\" security=\"restricted\" title=\"Interactive or visual content\" src=\"about:blank\" data-lazy-src=\"https:\/\/flo.uri.sh\/visualisation\/17076716\/embed#?secret=saqrnqx169\" data-secret=\"saqrnqx169\" frameborder=\"0\" scrolling=\"no\" height=\"575\" width=\"700\"><\/iframe><noscript><iframe class=\"wp-embedded-content\" sandbox=\"allow-scripts\" security=\"restricted\" title=\"Interactive or visual content\" src=\"https:\/\/flo.uri.sh\/visualisation\/17076716\/embed#?secret=saqrnqx169\" data-secret=\"saqrnqx169\" frameborder=\"0\" scrolling=\"no\" height=\"575\" width=\"700\"><\/iframe><\/noscript>\n<\/div><figcaption class=\"wp-element-caption\">This slider shows a normal lung, compared to the lung of a Long Covid patient.<\/figcaption><\/figure>\n\n\n\n<h2 class=\"wp-block-heading has-text-align-center\"><strong>Why does Long Covid feel like a fringe issue?<\/strong><\/h2>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe class=\"zeen-lazy-load-base zeen-lazy-load\" title=\"Why is Long Covid not taken seriously?\" width=\"1200\" height=\"675\" src=\"about:blank\" data-lazy-src=\"https:\/\/www.youtube.com\/embed\/ywoJhdKRNuY?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><noscript><iframe title=\"Why is Long Covid not taken seriously?\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/ywoJhdKRNuY?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><\/noscript>\n<\/div><figcaption class=\"wp-element-caption\">Two Long Covid patients discuss how perceptions of Long Covid change how it is dealt with<\/figcaption><\/figure>\n\n\n\n<p>\u201cThe government think the pandemic is in the past while the WHO say its still in the present,\u201d said Ondine Sherwood, Co-Founder of Long Covid SOS.<\/p>\n\n\n\n<p>Ms Sherwood said that this change in perspective on Covid-19 by the government leads to a lack of public messaging around Covid and Long Covid.<\/p>\n\n\n\n<p>It is possible that as many as one in 20 people in the UK have or have had Long Covid, but patients with Long Covid remark on their surprise when they got it.<\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-rich is-provider-crowdsignal wp-block-embed-crowdsignal\"><div class=\"wp-block-embed__wrapper\">\n<script>var pd_tags = new Array;pd_tags[\"13459090-src\"]=\"poll-oembed-simple\";<\/script><script type=\"text\/javascript\" charset=\"utf-8\" src=\"https:\/\/secure.polldaddy.com\/p\/13459090.js\"><\/script><noscript><iframe title=\"Do you know anyone who has\/had Long Covid\" src=\"about:blank\" data-lazy-src=\"https:\/\/poll.fm\/13459090\/embed\" frameborder=\"0\" class=\"zeen-lazy-load-base zeen-lazy-load cs-iframe-embed\"><\/iframe><noscript><iframe title=\"Do you know anyone who has\/had Long Covid\" src=\"https:\/\/poll.fm\/13459090\/embed\" frameborder=\"0\" class=\"cs-iframe-embed\"><\/iframe><\/noscript><\/noscript>\n<\/div><\/figure>\n\n\n\n<p>\u201cLong Covid continues to limit the lives of millions in the UK and countless others around the globe,\u201d said Professor Danny Altmann, a Professor of Immunology at Imperial College London. &nbsp;<\/p>\n\n\n\n<p>The <a href=\"https:\/\/www.ncbi.nlm.nih.gov\/pmc\/articles\/PMC8259553\/\">National Library of Medicine<\/a> published an article in July 2021 asking whether Covid-19 could be considered a new trauma type. Perhaps partly, Long Covid fails to take up more of the public consciousness because of how eager everyone was to move on from the pandemic as soon as it was possible.<\/p>\n\n\n\n<p>There are groups trying to change this. Long Covid Support and Long Covid SOS, are both UK based charities doing what they can to raise awareness of Long Covid, and push for change.<\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-rich is-provider-twitter wp-block-embed-twitter\"><div class=\"wp-block-embed__wrapper\">\n<blockquote class=\"twitter-tweet\" data-width=\"550\" data-dnt=\"true\"><p lang=\"en\" dir=\"ltr\">Are you living with, or caring for someone with, <a href=\"https:\/\/twitter.com\/hashtag\/LongCovid?src=hash&amp;ref_src=twsrc%5Etfw\">#LongCovid<\/a>? <br><br>Our International Long Covid Support Group on Facebook is here for you. <br><br>\u27a1\ufe0fPeer support<br>\u27a1\ufe0fAccess resources<br>\u27a1\ufe0fJoin our wellbeing events <br><br>See our website for the link and more info about us \u2b07\ufe0f<a href=\"https:\/\/t.co\/BcAi1Nod5e\">https:\/\/t.co\/BcAi1Nod5e<\/a><\/p>&mdash; Long Covid Support \ud83c\udf0d (@long_covid) <a href=\"https:\/\/twitter.com\/long_covid\/status\/1760959531838771319?ref_src=twsrc%5Etfw\">February 23, 2024<\/a><\/blockquote><script async src=\"https:\/\/platform.twitter.com\/widgets.js\" charset=\"utf-8\"><\/script>\n<\/div><\/figure>\n\n\n\n<h2 class=\"wp-block-heading has-text-align-center\"><strong>What needs to change?<\/strong><\/h2>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe class=\"zeen-lazy-load-base zeen-lazy-load\" title=\"What needs to change?\" width=\"1200\" height=\"675\" src=\"about:blank\" data-lazy-src=\"https:\/\/www.youtube.com\/embed\/SjHDvroh7ko?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><noscript><iframe title=\"What needs to change?\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/SjHDvroh7ko?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><\/noscript>\n<\/div><figcaption class=\"wp-element-caption\">JC Bjerkeland talks about what would help her and others with Long Covid<\/figcaption><\/figure>\n\n\n\n<p>\u201cIf there was more covid awareness, especially in a health setting, that could really change things pretty quickly,\u201d said Ms Sherwood.<\/p>\n\n\n\n<p>She argued that reintroducing and normalising mask-wearing will slow the spread of disease, and lower the risk of more Long Covid infections.<\/p>\n\n\n\n<p>\u201cPeople need to be considerate,\u201d said JC Bjerkeland, 37.<\/p>\n\n\n\n<figure class=\"wp-block-embed aligncenter is-type-rich is-provider-crowdsignal wp-block-embed-crowdsignal\"><div class=\"wp-block-embed__wrapper\">\n<script>var pd_tags = new Array;pd_tags[\"13459071-src\"]=\"poll-oembed-simple\";<\/script><script type=\"text\/javascript\" charset=\"utf-8\" src=\"https:\/\/secure.polldaddy.com\/p\/13459071.js\"><\/script><noscript><iframe title=\"Would you go back to wearing a mask if it was saving lives?\" src=\"about:blank\" data-lazy-src=\"https:\/\/poll.fm\/13459071\/embed\" frameborder=\"0\" class=\"zeen-lazy-load-base zeen-lazy-load cs-iframe-embed\"><\/iframe><noscript><iframe title=\"Would you go back to wearing a mask if it was saving lives?\" src=\"https:\/\/poll.fm\/13459071\/embed\" frameborder=\"0\" class=\"cs-iframe-embed\"><\/iframe><\/noscript><\/noscript>\n<\/div><\/figure>\n\n\n\n<p>Gareth Evans\u2019 billboard states: \u201cWe demand clinical trials now!\u201d. <\/p>\n\n\n\n<p>Ms Sherwood said clinical trials will make it possible for NHS doctors to prescribe medicines for Long Covid that they\u2019re not able to at the moment.<\/p>\n\n\n\n<p>This means GPs often offer symptom management, rather than specific medical treatment for Long Covid.<\/p>\n\n\n\n<p>\u201cI have given up on regular GPs,\u201d said Jennifer Robertson, 49.<\/p>\n\n\n\n<p>Wales has no Long Covid specific rehabilitation centres. The <a href=\"https:\/\/www.gov.wales\/getting-support-recovery-covid-19-long-covid\">Welsh Government<\/a> website says: \u201cIn some cases, you may need to go to hospital, if this is the case, you will be referred by your GP.\u201d<\/p>\n\n\n\n<h2 class=\"wp-block-heading has-text-align-center\">Staying hopeful for the future<\/h2>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe class=\"zeen-lazy-load-base zeen-lazy-load\" title=\"What gives you hope?\" width=\"1200\" height=\"675\" src=\"about:blank\" data-lazy-src=\"https:\/\/www.youtube.com\/embed\/eM-BUVcavSU?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><noscript><iframe title=\"What gives you hope?\" width=\"1200\" height=\"675\" src=\"https:\/\/www.youtube.com\/embed\/eM-BUVcavSU?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" allowfullscreen><\/iframe><\/noscript>\n<\/div><figcaption class=\"wp-element-caption\">Long Covid patients talk about how they stay hopeful for the future<\/figcaption><\/figure>\n\n\n\n<p>March 15 will mark the second annual International Long Covid Awareness Day. Long Covid SOS are planning to send a reply to a letter from Rishi Sunak&#8217;s office, asking him to do more, and renew funding for Long Covid research to mark the day.<\/p>\n\n\n\n<p>The Long Covid Choir, which meets over zoom, will be releasing a new video on their Youtube channel, which JC Bjerkeland will be performing in.<\/p>\n\n\n\n<p>The Welsh module of the Covid Inquiry will close on March 14, and perhaps, with Gareth Evans\u2019 billboard, and the push of Long Covid Awareness Day, the subject will get more airtime in Module 3 which begins on September 9.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Amid the ongoing Covid inquiry, people suffering the long-term consequences of the virus feel ignored by government &#8211; and the public.<\/p>\n","protected":false},"author":1044,"featured_media":84568,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[2,3],"tags":[6769,13,2537,4572,8735],"coauthors":[8527],"class_list":["post-84516","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-featured","category-news","tag-covid-3","tag-health","tag-illness","tag-inquiry","tag-long-covid"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.2 - 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