6 ms·

I have chronic fatigue syndrome since a bad viral infection in 2001. I find this article quite unfortunate. There is plenty of good research being done into CFS

I have chronic fatigue syndrome since a bad viral infection in 2001. I find this article quite unfortunate. There is plenty of good research being done into CFS that does not generate the outrage that the PACE trial has. There are many reasons that particular study has been the focus of campaigners while other researchers are encouraged or left in peace, but I would encourage those who are coming to this issue here for the first time to do some more reading before coming to an opinion. The abstract to the study itself is here (the full study is behind Elsevier paywall): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/?report=reader https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065633/?report... David Tuller's blog critiquing the study is at: http://virology.ws http://virology.ws Searching for "PACE trial" will bring up plenty of articles on either side of the debate. My own thought as to why this particular study stirred so much controversy is that it has been seized on by some in the medical-political establishment in the UK as defining a solution for all CFS sufferers, and negating the need for further study into the condition (although recent hearings in UK Parliament have begun to reverse this approach), when really the effect demonstrated by the study is quite small. Fortunately, the US establishment has not taken this tack: http://nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx http://nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx https://www.cdc.gov/me-cfs/index.html https://www.cdc.gov/me-cfs/index.html CFS remains a poorly-understood disease with a grossly underfunded research program when the number of people affected and the severity of the condition are taken into effect. Those who rally against PACE in particular seem to be mainly asking that it not be the end (or even the main direction) of the road in terms of CFS treatment and research in the UK. In my opinion, global social media systems are toxic on nearly every topic, not just this one.

erentz 8y ago
Hi, fellow here who also meets the ME/CFS criteria. These articles in which Sharpe and Weasley pop up are always very disturbing because they cry “ow, poor me, the big mean activists are attacking science!!” And it’s surprisingly effective as seen in this thread. People assume they’re doing real science, and the activists are of the bad type. But in this case it’s Sharpe and is colleagues that aren’t doing real science, they’ve done an abortion of a study full of holes, and it’s been used to cause harm to very ill people. Causing denied disability, forced exercise (which is contraindicated for ME/CFS), and do on. Their study has been torn to shreds by other real scientists but they refused to accept it and they call this response activism. Sadly as we see here lay people even in tech are all too eager to lap up their claims. Prof. Bruce Levin at Columbia even started using Sharpes and co’s PACE trial as a teaching example of all the bad things you can do to make a wrong study. (His slides were online but I’m having trouble find them right now.) Another accessible article on the subject: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome... Edit: here is Sharpes colleague Wesseley comparing people who refuse their PACE trial to climate change deniers and antivaxxers. Its entirely them who are refusing the science though because it shows they got it very wrong. https://www.forbes.com/sites/julianvigo/2018/06/27/resistance-to-science-and-technology/ https://www.forbes.com/sites/julianvigo/2018/06/27/resistanc...
- elefanten 8y ago
  As someone who is new to this subject as of this thread, let me share some honest feedback. The way you describe and defend your position leaves me deeply skeptical about your claims. "Real science", "abortion of a study", "real scientists", "entirely them who are refusing the science" Even if your claims and descriptions happen to be right, the certainty, starkness and immature/sweeping language have led me to assume I would disagree with you if I dug in. Just sharing a piece of outsider anecdata.
- deleted 8y ago
  [deleted]

erentz 8y ago

Hi, fellow here who also meets the ME/CFS criteria. These articles in which Sharpe and Weasley pop up are always very disturbing because they cry “ow, poor me, the big mean activists are attacking science!!” And it’s surprisingly effective as seen in this thread. People assume they’re doing real science, and the activists are of the bad type. But in this case it’s Sharpe and is colleagues that aren’t doing real science, they’ve done an abortion of a study full of holes, and it’s been used to cause harm to very ill people. Causing denied disability, forced exercise (which is contraindicated for ME/CFS), and do on. Their study has been torn to shreds by other real scientists but they refused to accept it and they call this response activism. Sadly as we see here lay people even in tech are all too eager to lap up their claims. Prof. Bruce Levin at Columbia even started using Sharpes and co’s PACE trial as a teaching example of all the bad things you can do to make a wrong study. (His slides were online but I’m having trouble find them right now.) Another accessible article on the subject: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome... Edit: here is Sharpes colleague Wesseley comparing people who refuse their PACE trial to climate change deniers and antivaxxers. Its entirely them who are refusing the science though because it shows they got it very wrong. https://www.forbes.com/sites/julianvigo/2018/06/27/resistance-to-science-and-technology/ https://www.forbes.com/sites/julianvigo/2018/06/27/resistanc...

elefanten 8y ago
As someone who is new to this subject as of this thread, let me share some honest feedback. The way you describe and defend your position leaves me deeply skeptical about your claims. "Real science", "abortion of a study", "real scientists", "entirely them who are refusing the science" Even if your claims and descriptions happen to be right, the certainty, starkness and immature/sweeping language have led me to assume I would disagree with you if I dug in. Just sharing a piece of outsider anecdata.
deleted 8y ago
[deleted]