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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. S

    Aggressive Rest Therapy: My Experience

    @Cheesus I know what you mean, playing on the internet on my phone is definitely my vice. I'm limiting myself to checking it 2/3 times a day, but it's been the hardest thing to stop doing haha. Good luck with your ART, let me know how it goes. @trishrhymes Thanks. Good luck to you too when you...
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    Aggressive Rest Therapy: My Experience

    Hi Yes, I've gotten myself into a routine of much more rest. Previously I would only rest lying on the sofa watching easy tv, but I'm doing big chunks of no-stimulation rest (in bed with no tv/music/etc, eyes closed - I never fall asleep but have felt close to it a couple of times) and also...
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    Aggressive Rest Therapy: My Experience

    Hi I've taken 4 weeks 'medical leave from life' to give this a proper go; currently at the end of week 1. I overdid it a bit the day before I started so I had some PEM the first couple of days, but I've been feeling so much more tired all week. I was worried I'd be bored doing no-stimulation...
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    The wonderful world of free on-line courses - aids to understanding research.

    Open Culture (think it's just openculture.com) have loads of free university courses in pretty much every subject, from one-off lectures to longer courses, as well as some free films.
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    Does Anyone Have Math-Only Brain Fog?

    Yeah I'd say it was a working memory problem rather than a maths-specific one. I have the same thing, my working memory is terrible now, and the first thing to get worse with brain fog. (In case you don't know, working memory is the bit before short-term memory. It's basically when you're...
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    ‘Matter over mind: The strange case of the ME study’ | WDDTY magazine | October 2016

    Urgh. That's disappointing. I respected Goldacre as a doctor campaigning for science before vested interests. I guess not.
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    ‘Matter over mind: The strange case of the ME study’ | WDDTY magazine | October 2016

    Given that a comment above shows the article is basically plagiarised from David Tuller's one, a reckon he's not a good 'journalist' to target. Out of interest, is Ben Goldacre & the All Trials campaign aware of the re-analysis? Given their aims are for all trials to be published & the data...
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    ‘Matter over mind: The strange case of the ME study’ | WDDTY magazine | October 2016

    This magazine is notorious for being full of scare-mongering & pseudoscience. It's terrible. If I knew nothing about me/PACE, and saw this published there, I'd assume the criticisms were unfounded. It's good the word is getting out there but it's a shame it's through this particular publication!
  9. S

    Flu vaccination and ME/CFS

    I get my flu jab every year. I'm lucky in that I don't get any serious side effects from it (occasionally a little more unwell than usual the next day if I was already having a bad day on jab day). It can take me a month to "recover" from cold symptoms (I had a cold/cough thing a couple of...
  10. S

    My Millions Missing video

    Thanks @AndyPR, I'll check it out.
  11. S

    Aggressive Rest Therapy: My Experience

    It's impossible to work out your anaerobic threshold properly without doing actual exercise, but from past experience I'm certain I'm well below it so it should be fine, but I'll keep an eye on it. (In terms of Fitbits, I think that's more cardio/peak zones which I'm never in, but it works out...
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    Aggressive Rest Therapy: My Experience

    Also, I got a Fitbit recently to monitor sleep, and I've noticed my heart rate goes into "fat burn" zone when I do anything physical. (I know they're not the most accurate things). Anyone else use monitoring devices? I'm going to try and incorporate it into working out how much rest & when, and...
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    Aggressive Rest Therapy: My Experience

    I think I'm going to try this too. I feel like I've plateaued the past couple of years & it's definitely not helping me mentally to feel stuck. Not sure how I'm going to do it yet, I don't think a set schedule will work for me, but will try to bear in mind that I should rest more than I...
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    My Millions Missing video

    @Silencio Thanks. I had lots of ideas for things but decided to stick with empty spaces (except my bed which I'm in) & what I could do without spending too much energy. The chair at the end is in a library, supposed to represent generally people missing from education and specifically me missing...
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    My Millions Missing video

    Thanks, haha of course it was intentional, of course ;) (part of me does like it too!) I'm waiting to share it properly until the actual day, but it's kinda nice its finding it's way to social media on its own. Thanks for your feedback, all. I'll leave it as is & just make sure there's info in...
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    My Millions Missing video

    Hi, thanks for your comments all! The links are in the video description, which is the drop-down bar below the video. I can't copy it on my phone, but it basically says "For more information on the #MillionsMissing campaign visit: [link] For more information on me/cfs visit: [link to ME...
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    My Millions Missing video

    As I can't physically go anywhere for the Millions Missing thing on the 27th, I made a video. I tried to keep it really simple and short, though obviously that takes out some of the nuance/complexity. But, because my brain is now very fogged up from finishing it, I'd appreciate it if someone...
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    Can You Work?

    Figuring out how to work, how to support myself, is something that's on my mind constantly. I live alone, and don't have a partner, so I don't have anyone else to rely on. I currently receive ESA, but as I can walk a little further & stand a little more, I don't think I'll qualify next time...
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    COLONOSCOPY SCHEDULED, WANT TO CANCEL

    I've had a sigmoidoscopy, and also had to do a full prep for a barium enema. 1. Prep really wasn't that bad. Have a low residue diet the day or two before to make it easier for you, use bepantham cream after each trip to the bathroom, have bottles you can fill up to track your water intake...
  20. S

    Which supplement might be helping me?

    Interesting, thanks. I'd seen that nearly all people with chronic illness test low for glutathione, but didn't realise whey might help with that.
  21. S

    Which supplement might be helping me?

    Hi, as I people here are much more informed about supplements than me I wondered if anyone would be able to help identify which supplement is helping me. In brief, I've been diagnosed with moderate m.e. for 6 years (though with hindsight was mildly ill with m.e. for another 10 years before a big...