• Welcome to Phoenix Rising!

    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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. A

    Getting out of bedridden crash/ Leeds inpatient ?

    Hey, i'm an ME/CFS sufferer from Leeds, have had the illness since 2016, been bed/house ridden a few times in those years. This illness is different for everyone and I consider myself a mild case now but here are a few tips I could give you: - Check your daughter's heart rate when standing, if...
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    Increased risk of chronic fatigue syndrome following burn injuries.

    Interesting, thanks for posting @Murph
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    CT contrast dye idea freaking me out

    Hopefully this will put your mind at rest a bit. I’ve both a CT with contrast and MRI with contrast. Both were a little uncomfortable but nothing more, the contrast I had during the CT scan made me feel like I needed to pee a bit and that was the only side effect thankfully. Obviously everyone’s...
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    CD24 expression and B cell maturation shows a novel link with energy metabolism, 2018, Mensah et al

    https://www.frontiersin.org/articles/10.3389/fimmu.2018.02421/abstract
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    From Bedridden to riding my bike for 20 km-My Story

    Thanks for the reply @goldberg and for the info! Midodrine definitely helped my endurance in the past but I came off it in the end. Maybe I expected too much too soon. I haven’t exercised properly in a few years because it causes me to crash and socialising is usually enough exercise for me...
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    From Bedridden to riding my bike for 20 km-My Story

    This appears to be a great recovery story, many thanks for posting, i'm very happy that you've made such a great improvement. If you don't mind, I think it would benefit a lot more people if you answered questions directly on this thread if you have the time. I have a few below: Do you still...
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    Thought I had POTS: turns out it was SA node dysfunction!

    Amazing news! Really hope you manage to get some functioning back, make sure you keep us updated on your progress!
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    Brain Misfiring

    Yes a lot of this sounds familiar. When I was quite bad about 18 months ago I went to a game at Old Trafford, I was okay for most of the first half but the second half was horrendous, I could barely follow the game because of sensory overload from the fans cheering. I’ve found that when this...
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    Identification of ME/CFS-associated DNA methylation patterns.

    Either way, many thanks for exploring it further, I don’t have the brain power at the minute but I do remember p38 MAPK being referenced in relation to NK cell dysfunction in ME/CFS a while back and given its prominence in this study it certainly seems important.
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    Identification of ME/CFS-associated DNA methylation patterns.

    Thanks for posting @Murph IL17 showing up quite a lot huh! Seems to be broadly associated with quite a number of autoimmune diseases, could be a good theraputic target!
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    A few observations about my experience with ME/POTS

    Hi @Murph thanks for the comment, very interesting to read your thoughts and own observations! Cool insight about messaging the muscles/mitos. What i’ve found since my first ever crash is that using my arms to lift or push something above my heart seems to cause me very severe problems, very...
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    A few observations about my experience with ME/POTS

    No problem, thanks for your comment. I’m confident that you will gain more insight about your own situation in time. It has taken me around 18 months of trial and error but i’m slowly getting more in tune with my body/symptoms. Sometimes with this illness though, things can take you completely...
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    A few observations about my experience with ME/POTS

    After an interesting year of ups and downs i've made a short list of observations about my experience with ME/POTS: These are the things i’ve noticed: While I haven't had PEM from overexertion in a long time. The dreaded bed-bound, brain fogged episodes seem to be related to the gut in my...
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    Dr. Ron Davis gets NIH grant!

    Bloody amazing news!!!
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    Am I getting better? Thoughts appreciated.

    This is great news! Our of interest is it summer where you are? I often notice a signicant uptick in health during the summer months.
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    POTS Treatment / Salt Tabs & Electrolyte Powder

    I’ve found Nuun tablets to be the best for my needs, they dissolve in water and were reccommended by my POTS consultant who said some of his other patients rated them. Hope this helps!
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    (Video) OMF Scientific Advisory Board Member Mark Davis, PhD, Presents An Update on ME/CFS Research

    Love this guy! So glad/grateful that we have him helping us!
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    Why do I do better without much sleep and yet exhausted after sleep?

    I can’t say exactly why this is, but my educated guess is that for some ME/CFS patients, an overactive immune system is responsible for the majority of our symptoms. Lack of sleep and alcohol for example are two things that can impair the immune system, with alcohol specifically reducing the...
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    What NOT to do if you have POTS!

    Can completely relate, i’ve had some awful POTS flare ups from trying to wash/clean my car, glad it’s not just me! I hope you haven’t set yourself back too much and are feeling a bit better soon...stay horizontal for as long as possible now!!
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    OMF-Dr Davis research update (video!)

    Amazing news, thanks Ashley!!
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    H. Pylori Attacks Energy Generation via mTORC1 Inhibition

    @RWP (Rest without Peace) Yeah I posted it because I know that quite a few people showed an interest in the mTOR pathway after Ron Davis mentioned it in one of his videos last year. I’m not really sure if it links to ME/CFS though or what to make of it, I wonder if it’s of any use to Ron...
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    H. Pylori Attacks Energy Generation via mTORC1 Inhibition

    Research: https://www.cell.com/cell-host-microbe/fulltext/S1931-3128(18)30203-8 Article: https://m.phys.org/news/2018-05-disease-causing-stomach-bug-energy-host.html
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    SMCI's May 2018 webinar with Dr. Komaroff - now online

    Fantastic video and overview. Deserves way more views!
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    Association of T and NK Cell Phenotype With the Diagnosis of ME/CFS (Rivas et al., 2018)

    This looks like a pretty good study, thanks for posting. CCC...good start! Interesting. I’m currently in a bit of a crash so can’t do much analysis, interested to hear what people think though!
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    OMF-Dr Davis research update (video!)

    These video updates are fantastic and always give me a lot of hope, please keep doing them!
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    New $1 million donation for OMF's ME/CFS research!

    Incredible! Ron is an absolute rockstar, his ability to get people on-board is amazing! Thanks so much to the donor and to all who donate.
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    #OMFScienceWednesday-Severely ill Big Data Study

    Thanks for the update Ben as always. Good news re the bioinformatician too.