Tom Kindlon<p>Today is 6th anniversary of publication of this rejoinder.<br>Free here: <a href="https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0296-x" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bmcpsychology.biomedcentral.co</span><span class="invisible">m/articles/10.1186/s40359-019-0296-x</span></a></p><p>The more important paper is initial paper which included re-analyses of £5m <a href="https://disabled.social/tags/PACETrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACETrial</span></a> results.<br>Free here: <a href="https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bmcpsychology.biomedcentral.co</span><span class="invisible">m/articles/10.1186/s40359-018-0218-3</span></a></p><p>That is the last of the anniversaries of my paper publications for a while</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a></p>
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#pacetrial
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Tom Kindlon<p>It's the 7th anniversary of this paper.</p><p>A lot of it was only possible due to Alem's heroic FOI victory, which the <a href="https://disabled.social/tags/PACETrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACETrial</span></a> team fought so hard to stop.That surely wasn't because the real results weren't as flattering as they had presented them?</p><p><a href="https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bmcpsychology.biomedcentral.co</span><span class="invisible">m/articles/10.1186/s40359-018-0218-3</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>Today is 8-year anniversary of this rejoinder, where we defend our recovery reanalysis paper which found no difference in rates of recovery from <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> with graded exercise therapy or CBT vs specialist medical care-alone group in £5m <a href="https://disabled.social/tags/PACEtrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACEtrial</span></a></p><p>Free: <a href="https://researchgate.net/publication/315482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">researchgate.net/publication/3</span><span class="invisible">15482747_PACE_trial_claims_of_recovery_are_not_justified_by_the_data_A_Rejoinder_to_Sharpe_Chalder_Johnson_Goldsmith_and_White_2017</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>It's 8-year anniversary of this paper of mine. It could be useful if somebody feels coerced into doing graded activity or exercise programmes; also to counter claims that the <a href="https://disabled.social/tags/PACEtrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACEtrial</span></a> showed graded activity programs are safe.</p><p><a href="https://journals.sagepub.com/doi/full/10.1177/1359105317697323" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">journals.sagepub.com/doi/full/</span><span class="invisible">10.1177/1359105317697323</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CBT" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CBT</span></a></p>
ahimsa<p>For examples of scientific harm done to ME/CFS patients see this video by <span class="h-card" translate="no"><a href="https://mas.to/@brokenbattery" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>brokenbattery</span></a></span></p><p>It lists many issues, including the CDC renaming the illness in 1988 and the PACE trial, a flawed research study that has not yet been retracted:</p><p><a href="https://www.youtube.com/watch?v=RiwX9Y0NbiQ" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/watch?v=RiwX9Y0Nbi</span><span class="invisible">Q</span></a></p><p>"George Monbiot describes the treatment of Myalgic Encephalomyelitis as 'the greatest medical scandal of the 21st century' …'"</p><p>Transcript:</p><p><a href="https://medium.com/@abrokenbattery/me-cfs-scandal-explainer-eb4c1bfb7464#0cda" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">medium.com/@abrokenbattery/me-</span><span class="invisible">cfs-scandal-explainer-eb4c1bfb7464#0cda</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span> </p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/PACEtrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACEtrial</span></a> <a href="https://disabled.social/tags/Research" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Research</span></a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a></p>
Tom Kindlon<p>When PACE-Gate Meets Sample Size Calculations - Nuno Sepulveda</p><p><a href="https://link.springer.com/chapter/10.1007/978-3-031-68949-9_12" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">link.springer.com/chapter/10.1</span><span class="invisible">007/978-3-031-68949-9_12</span></a></p><p>Image is from latest Science for ME weekly update</p><p><a href="https://disabled.social/tags/PACEtrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACEtrial</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>8-year anniversary of reanalysis paper on recovery in £5m <a href="https://disabled.social/tags/PACEtrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACEtrial</span></a>, with data the PACE team fought so hard to keep to themselves. </p><p>Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol</p><p><a href="https://tandfonline.com/doi/full/10.1080/21641846.2017.1259724" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">tandfonline.com/doi/full/10.10</span><span class="invisible">80/21641846.2017.1259724</span></a></p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a></p>
Irish ME/CFS Association<p>16/<br>One of the slides from David Tuller's recent talks in Ireland.</p><p>The PACE Trial was a UK taxpayer-funded £5 million trial of graded exercise therapy, CBT, etc. for CFS </p><p><a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://mastodon.ie/tags/PACETrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACETrial</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p>
Irish ME/CFS Association<p>15/<br>One of the slides from David Tuller's recent talks in Ireland.</p><p>The PACE Trial was a UK taxpayer-funded £5 million trial of graded exercise therapy, CBT, etc. for CFS </p><p><a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://mastodon.ie/tags/PACETrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACETrial</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p>
Irish ME/CFS Association<p>8/<br>One of the slides from David Tuller's recent talks in Ireland showing the <a href="https://mastodon.ie/tags/PACETrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACETrial</span></a> ridiculous recovery criterion. "Distribution of SF-36 physical function scores from British community participants aged 18–59 without long-term illness or disability"</p><p><a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p>
dr elmyra<p>Gods imagine if the standard of evidence demanded by the <a href="https://wandering.shop/tags/CassReview" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CassReview</span></a> (randomised control trial) was also demanded in research on <a href="https://wandering.shop/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> before we implement treatment guidelines that kill people. (Yes I'm still mad about the <a href="https://wandering.shop/tags/PACEtrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACEtrial</span></a>. And yes, obviously the Cass review is bullshit. It's almost like the state will use any means necessary to kill marginalised people.)</p>
Tom Kindlon<p>The PACE trial: This $8 Million Medical Trial Is A Joke</p><p><a href="https://youtu.be/bzh8pT-g9v0?si=lKaPgE89O297zJad" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">youtu.be/bzh8pT-g9v0?si=lKaPgE</span><span class="invisible">89O297zJad</span></a></p><p>YouTuber and behavioural scientist Pete Judo presents the infamous <a href="https://disabled.social/tags/PACEtrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACEtrial</span></a> which he describes as "what is possibly the worst medical trial in modern history. (contd)”</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SEID</span></a> </p><p>1/</p>
Tom Kindlon<p>Today is 5th anniversary of publication of this rejoinder which can be read for free here <a href="https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0296-x" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bmcpsychology.biomedcentral.co</span><span class="invisible">m/articles/10.1186/s40359-019-0296-x</span></a></p><p>The more important paper is initial paper which included re-analyses of £5m <a href="https://disabled.social/tags/PACETrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACETrial</span></a> results which can be read for free here <a href="https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bmcpsychology.biomedcentral.co</span><span class="invisible">m/articles/10.1186/s40359-018-0218-3</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>It's the 6th anniversary of this paper.</p><p>A lot of it was only possible due to Alem's heroic FOI victory, which the <a href="https://disabled.social/tags/PACETrial" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PACETrial</span></a> team fought so hard to stop. That surely wasn't because the real results weren't as flattering as they had presented them? <br><a href="https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bmcpsychology.biomedcentral.co</span><span class="invisible">m/articles/10.1186/s40359-018-0218-3</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a></p>
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