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  1. JemPD

    Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour

    Am very fuzzy not able to keep up with things so I dont understand - what does Jeremy Hunt have to do with AfME?
  2. JemPD

    Advice on mask-wearing to protect against Covid-19

    One thing to be aware of is how many cheap knock offs there are. So buying from a reputable supplier - rather than eBay Amazon etc is important. Watch for a genuine CE mark. I did post here on S4 about how to tell a fake but not sure I could find it now During the early days I used to get...
  3. JemPD

    Advice on mask-wearing to protect against Covid-19

    Fwiw I reuse mine. They say they last for 12 hrs so I wear it for that long whether that’s in 12x 1hr long stints or whatever. After wearing I put them in a cardboard box with a lid inside a cupboard so they can dry out from my breath (ie not plastic bag). & don’t wear them again for at least a...
  4. JemPD

    Advice on mask-wearing to protect against Covid-19

    You can buy them from loads of places online. Covaflu sell them direct they are great but not good if you have a small or narrow face -mine is like a pumpkin. lol my carer who has a tiny face uses 3M Aura ones. They are way more comfy than surgical masks imho as they keep the mask away from nose...
  5. JemPD

    What empirical evidence is there that heart-rate monitoring helps avoid PEM?

    What would be considered ‘short’ peaks? How long are we talking about? 1 minute? vs ‘very long’ - 5minutes? 10? 30? And by ‘high’ heart rates you mean above 150 for middle aged person?
  6. JemPD

    Treatment - morphine for severe pain

    so sorry you’re in so much pain I hope you’re able to get help. A small word of caution re pain clinic to Perhaps consider trying to connect with a local me/cfs group either on Facebook or the MEA have a list - just before you rush into asking for a referral to see what others with MECFS have...
  7. JemPD

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    That very helpful @DHagen than you so much. Actually even a small improvement in sound reduction would make a big difference to my life. Especially when I have to go to appointments.
  8. JemPD

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    Yes that’s exactly how I think feel about them @DHagen !! A voice in the dark in the early morning is the worst! But if I use the headphone rather than buds I put ear plugs in under them so the voice is lower volume then! Im curious to know whether you had the NC700 ones before you got the QC...
  9. JemPD

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    I been thinking about this for ages kept forgetting to come here to comment. Wanted to warn you, as yr issue is worse with short blips… I’d avoid Bose because although they amazing they do make a sound when they turn on. And it’s for me quite loud. I know it’s coming so I hold it away from me...
  10. JemPD

    Closed UK: DecodeME updates, was recruitment thread.

    lol Sadly I too ill for tv. Time goes slowly lying alone in the silent darkness
  11. JemPD

    Closed UK: DecodeME updates, was recruitment thread.

    Absolutely, I do get that all results are useful. I was just reacting to people talking of excitement and wondering if I dared allow myself Whatever the result it’s been a privilege to be part of something so well run. I feel proud to have participated
  12. JemPD

    Closed UK: DecodeME updates, was recruitment thread.

    Yes huge thanks to @Andy and the whole team!
  13. JemPD

    Closed UK: DecodeME updates, was recruitment thread.

    Nobody seems in any way to be preparing for a result which says something along the lines of 'We found no genetic links or associations', or 'we found only a tiny association which could easily be noise/down to another confounding factor' Essentially a negative result. Do we somehow have...
  14. JemPD

    Patient led measure of outcomes

    Sorry too ill to read whole thread but just wanted to say that these types of things are problematic because many of us don’t have lives that allow for doing the same every wk month etc. I always find funcap so etc almost impossible to fill in, because the answer to whether I can bathe or not...
  15. JemPD

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    I trust you understand Arnie that what I said isn’t *my opinion, and may not be a good description of the theory or indeed be correct about the theory Im trying to understand in order to describe. I don’t disagree with you, Im just trying to get my head around what is actually being said...
  16. JemPD

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    @Friendswithme Sorry I not well enough to go back through & gather the quotes, but I'm trying to understand what's being said by Brt advocates versus CBT/GET advocates.... So I'm going to write here what I think I've gleaned from what you & others have said about brain RT process ideas, to...
  17. JemPD

    Using Heart rate monitoring to help with pacing.

    Thanks so much @Chandelier thats all really helpful I’ll try out that other app. Yes the Tachymon you have to pay for it I running on the months free trial at moment
  18. JemPD

    Using Heart rate monitoring to help with pacing.

    I have an Apple Watch and using an app called Tachymon that works with it. Which reads from it. You set your min & max hr for alerts & it gives a haptic on the watch whenever it spikes over your min max. It’s good but it needs charging every 5 hrs or so if I have it running Tachymon...
  19. JemPD

    Using Heart rate monitoring to help with pacing.

    @Trish how often does your Fitbit need to be charged?
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