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    UK: Physios for ME

    This is brilliant @PhysiosforME - what good news! Thank you!!
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    United Kingdom: Optimum Health Clinic (Alex Howard)

    I stumbled upon Alex Howard's new video series on youtube yesterday. I found it really concerning. For background: Alex Howard runs The Optimum Health clinic in London which claims to treat ME. I've don't their '90 day programme' (many years ago). They use various techniques such as the...
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    Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - 2020 - Rekeland, Mella, Fluge et al

    That's interesting, I've read that people with Sjogren's have an increased risk of developing non-hodgkin's lymphoma. I believe that they first noticed that cyclophosphamide was having an effect when they treated patients for non-hodgkin's who also had ME and found that the ME improved after the...
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    Anti-malaria drug used by armed forces and travelers "plausible cause of CNS toxicity syndrome"

    I took one tablet of mefloquine (larium) whilst in Asia several months before my gradual onset ME started (about 22 years ago). I started to feel really depressed so I stopped taking it after that one tablet and switched to doxycycline. I've heard really bad things about mefloquine and would...
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    Miranda Hart - British comedian

    I thought she spoke SO well about it. The way she talks about daily griefs was really powerful.
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    Covid-19 related treatment and other scams

    I'm glad you feel the same. (At the moment I'm feeling like the whole world is experiencing a lot of what we've been experiencing for a long time and now this seems to include being targeted by people like this!) I really dislike the way he talks about his techniques as equivalent to...
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    Covid-19 related treatment and other scams

    I've just seen on Facebook that Ashok Gupta (of the 'Gupta Process') has released a 'package' called the 10 day coronovirus challenge. He doesn't claim that his techniques (mediation, NLP, neural retraining etc. I think) can prevent you getting the virus in so many words but I think he very much...
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    The Cambridge Lectures: Demystifying ME/CFS, March 2020, deferred to January 2021 on Zoom

    They can't know for show that it will need to be cancelled at this point so surely they've still got to publicise and then if it gets cancelled they've still got a list of people signed up and they can either look into alternative ways of presenting or postpone? I guess it would be good to...
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    MEAction: INVITE YOUR DOCTOR TO LEARN ABOUT ME – MEDICAL EDUCATION EVENT IN LONDON, 1st April 2020

    I couldn't agree with this more. Also, couldn't attendees interested in unrest just watch it on netflix from the comfort of their own home? So perhaps you could just mention and/or play a clip without having to show the whole thing. Although I second Trish's opinion that Voices from the...
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    Left out (Norwegian documentary on ME)

    This is a brilliant film, so well made. I second everything that @Trish just said and would try to rephrase it in my own words but too exhausted to do so and Trish said it so well! Just wanted to add my voice to the praise for the film and the science, just in case anyone involved sees this...
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    Is sex worth the pain? Willingness to engage in sexual activity among partnered women with fibromyalgia, 2017, Gullickson et al

    The study seems to me to ignore the fact that severity varies between patients, as do the specific symptoms. So surely the women who said they were 'willing' to have sex despite having FM might have been less affected (or affected in different ways) than those who said they were 'unwilling'? I...
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    Examining Hope as a Transdiagnostic Mechanism of Change Across Anxiety Disorders and CBT Treatment Protocols (2019), Gallagher et al.

    These criteria do sound a bit strange but remember: they are designed for people with ANXIETY not ME. People with anxiety often see themselves as needing to reach impossibly high standards imposed on them by others. They develop very black and white thinking around this - ie 'either I achieve...
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    Examining Hope as a Transdiagnostic Mechanism of Change Across Anxiety Disorders and CBT Treatment Protocols (2019), Gallagher et al.

    If we're considering this as a way to monitor and assess ME/CFS patients it makes no sense at all, but the paper refers to anxiety disorders so... for me it makes sense.I think CBT can be really useful for anxiety. I've only ever experienced minor anxiety in the past (eg. around the time of...
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    Gary Burgess: How I've learnt to live with an invisible illness. (ITV reporter)

    Brilliant. Well done @Gary Burgess :emoji_clap::emoji_clap:
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    Gary Burgess - The ME show, and updates about Gary's health.

    Great! Thanks Gary, I look forward to listening :)
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    Trust Me, I'm a Scientist - Richard Dawkins

    @TiredSam Aha! Now I get it and am feeling suitably annoyed, thank you ;) I think first time round I was swayed, despite him sounding arrogant and smug, because I do think that there is a problem with class representation in the media and publishing. Virtually everyone in these industries seems...
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    Trust Me, I'm a Scientist - Richard Dawkins

    Totally agree. I think it makes sense to believe in the scientific method but at the same time be aware that it is probably not going to reveal the ultimate truth of the universe to us any time soon. Personally, I'm ok with not knowing the ultimate truth of the universe, I'm not sure our brains...
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    Trust Me, I'm a Scientist - Richard Dawkins

    Intrigued about why this conversation would irritate you? Personally, Claudia Hammond has me shouting at the radio regularly!
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    Trust Me, I'm a Scientist - Richard Dawkins

    The scientist on the panel argues that science is uncovering eternal truths. The science philosopher and the novelist point out that culture and beliefs will always influence what questions scientists asks and how they interpret the answers.
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