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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. Hufsamor

    Comment by 'Hufsamor' in 'Not Exactly an Emergency / The Beat Heat Manifesto'

    No need to apologise I love to hear your thoughts as well as your adventures
    • Hufsamor
    • Blog entry comment
  2. Hufsamor

    Arm swing indicator for dementia and potentially other neurological disease

    Difficult :nerd: Perfect !
  3. Hufsamor

    Arm swing indicator for dementia and potentially other neurological disease

    Thanks :) :)
  4. Hufsamor

    Comment by 'Hufsamor' in 'Not Exactly an Emergency / The Beat Heat Manifesto'

    I might have mentioned it before, but I’ll do it again. You must feel you have a very, very restricted life. (You have) But somehow you have a more dramatic life, then most people I know of 😂 I’m sure you could do without all the drama, but it certainly keeps us entertained, if that’s any...
    • Hufsamor
    • Blog entry comment
  5. Hufsamor

    Arm swing indicator for dementia and potentially other neurological disease

    I believe it’s very good for you. As I’ve had an older mother and now an older mother in law with their lack in cognitive functioning, I’ve read a lot of research lately, on how to keep the mental health as good as possible. I must admit I’ve been a tiny bit worried, as I (and we all) are living...
  6. Hufsamor

    Arm swing indicator for dementia and potentially other neurological disease

    Oh, I figured it out! I loved it! I’m already trying to walk some steps backwards and some steps sideways on my way to the bathroom or the kitchen. I’ll now add arm swings for sure!
  7. Hufsamor

    Arm swing indicator for dementia and potentially other neurological disease

    Sounds interesting, but I can’t see it..?
  8. Hufsamor

    Pacing: Very interesting HealthRising article re HR and HRV monitoring and pacing - I may finally spring for an HR/HRV monitor!

    I believe it’s like this: If the body battery was rising at the time you took of you watch, it will calculate a further, similar rising while your away. If the body battery was falling, it will calculate it to continue to fall. It will most likely take a day or two before your back at a...
  9. Hufsamor

    Vagus nerve stimulation - Nurosym device

    Correct
  10. Hufsamor

    Vagus nerve stimulation - Nurosym device

    Oops The link has changed some how I’ll ask a moderator to help me delete it. The two of us have this one I know of one person in the group who had good help from this, but then we where more people buying and trying and not getting much of results
  11. Hufsamor

    BC-007: Successful drug against Autoantibodies helps with long COVID

    I’m sorry :oops:
  12. Hufsamor

    Vagus nerve stimulation - Nurosym device

    @Artemisia I’ve got responses from 3 different people. One had used the exact same as I have, and didn’t feel any difference. Two had something similar, and the two of them was very pleased with it. For one of them, her POTS was much better, reducing her heart beats (rate?) from 120-130 to...
  13. Hufsamor

    Vagus nerve stimulation - Nurosym device

    No i haven’t. It went quiet. But I can ask in the group, and see if I get any updates, my impression is that none of us got much out of it in the long run. I have read in some other thread, that even if one device doesn’t suit you, another one might. That person had tried three different...
  14. Hufsamor

    Abilify- Stanford Clinic Patients

    This is what I’ve heard before as well…
  15. Hufsamor

    Abilify- Stanford Clinic Patients

    I don’t have any experience with Abilify (my doctor wouldn’t let me) but I’m currently on vortioxetine (antidepressant, not the same, I know. But it’s the closest experience I’ve got.) In the first weeks I suffered quite a lot of side effects. It took some weeks for the side effects to subside...
  16. Hufsamor

    Brain functional connectivity in people with ME/CFS

    @Wayne @perchance dreamer Do you alternate what hand to hold and what hand to use to tap?
  17. Hufsamor

    How to deal with low folate?

    I hurt more all over 😬
  18. Hufsamor

    Comment by 'Hufsamor' in 'Calculating Infinity / Solving Scenarios / Bedding Down in the Desert'

    That sounds like a well thought through decision. I had no idea you’d have to share room if you decided to go for the assisted living option. I’m happy you’re the one helping your former wife out now, with the finances, in different ways! Yay you! I do hope she’ll find herself a new job soon...
    • Hufsamor
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  19. Hufsamor

    New wearable that tracks blood flow to the brain

    @godlovesatrier A stable HRV is a sign of a stable period, indicating the body isn’t struggling. It seems every person have their own “natural “ HRV, so the HRV numbers are less important. If your natural HRV turns out be 40, 50 or 60 is less important. We are mostly looking for stability. If...
  20. Hufsamor

    How to deal with low folate?

    I get pain in my body, like pem pain, (like flue pain). I can’t do any b vitamins, I think I’ve tried them all..
  21. Hufsamor

    Comment by 'Hufsamor' in 'Shelter Skelter / 5 and 1/2 Weeks / Please Vote'

    @Cloudyskies After years and years and a lot of struggle, Howard has finally got a tiny bit of disability income
    • Hufsamor
    • Blog entry comment
  22. Hufsamor

    Comment by 'Hufsamor' in 'Shelter Skelter / 5 and 1/2 Weeks / Please Vote'

    A little thought? If you decide to move upstairs, I really think you should share the costs with her? Paying rent, electricity etc. It might make life a bit easier for her. And you would be more like partners than caretaker and receiver
    • Hufsamor
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  23. Hufsamor

    Comment by 'Hufsamor' in 'Shelter Skelter / 5 and 1/2 Weeks / Please Vote'

    Ok. You are the one living your life, so my thoughts are only based on my thoughts and may not be relevant to how you feel about it at all. I just throw in some questions and some thoughts. As far as I understand, it’s not like you’ve been terribly happy living in the garage? (Most of it has to...
    • Hufsamor
    • Blog entry comment
  24. Hufsamor

    For those of you who are moderate

    Several people in the me community are looking into this atm. It’s very easy to overdo, and if you are too sick, you might not be able to exercise at all. But it seems a lot of us are able to build up some strength. Biggest problem is, it’s terrible easy to overdo, I’ve done it myself, over and...
  25. Hufsamor

    Any reason to believe childhood vaccines or other vaccines could contribute ME/CFS developing?

    Interesting
  26. Hufsamor

    Any reason to believe childhood vaccines or other vaccines could contribute ME/CFS developing?

    My mother had polio as a child, and suffered post polio all of her adult life. It reminded a lot of me/cfs. Knowing what I know, with the adult people in my youth who suffered from post polio - with the terrible exhaustion and maybe a stiff back or a limp in addition- I would have chosen the...
  27. Hufsamor

    Getting back into shape.... gently!

    @lenora Im struggling more end more with sitting as well. Im sorry for your osteoporosis. I really want to avoid that. ❤️ Taking my supplements with d vit and magnesium and hoping it will help. I read a suggestion,( I don’t know if it’s true or not or helpful or not. It was just a suggestion...
  28. Hufsamor

    Getting back into shape.... gently!

    Im in a place now where I can do a little bit of exercise every day. 10-15 min included rest between each exercise. I now have a subscription with this guy, and I love it. He has a set of exercises for each week, one different for each day. And every month he changes the exercises, so it doesn’t...
  29. Hufsamor

    Tingling hand and feet; worsening by folic acid and B12 supplements

    @Joopiter76 It’s this man. I had appointments through mail back then. I believe it’s possible to get online sessions? He was very clever. And all the things he pointed out then, have turned out to be absolutely correct. Even if I didn’t get rid of my me/cfs, it helped with other problems, and...
  30. Hufsamor

    What Are Your Most Amusing (Or Disconcerting) Brain Fog Experiences?

    I love that photo 😄 I can just visualise her, sitting somewhere in my head, randomly pulling and plugging back in😆