• 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. Jenny TipsforME

    My Keto Experience

    What I can’t work out is d-ribose and keto. It’s not straightforward and I’ve read conflicting information. I think it was perhaps indirectly pushing me out of keto but I find it really helpful. :confused:
  2. Jenny TipsforME

    My Keto Experience

    In the autumn I felt like keto had quite a big positive impact. At the moment it’s not having such a good effect physically (which might mean it was coincidental before). BUT I do find it consistently improves my cognitive clarity/stamina which has greatly improved my quality of life. My brain...
  3. Jenny TipsforME

    Meet Grace the ME advocacy chatbot

    That isn’t Grace. This is Grace https://www.chatbase.co/chatbot-iframe/grace-wjsaxqkqu It should look like this and to start with you write to her under the message starting “I sometimes experience a form of bot brainfog”
  4. Jenny TipsforME

    Meet Grace the ME advocacy chatbot

    I’m creating an ME advocacy chatbot see https://tipsforme.wordpress.com/2023/03/20/grace-the-advocacy-chat-bot/ The idea is that she can help us be more prolific without using extra energy. She can help with things like writing social media posts, articles, press releases, generating new...
  5. Jenny TipsforME

    AI series of blog posts

    For the last few years I’ve not been up to blogging regularly but with recent tech advances I’ve started a blog series on the implications of AI for people living with ME and other energy limiting chronic illness. The series of posts can be found in this category...
  6. Jenny TipsforME

    Anyone used Lions Mane???

    NB people are anecdotally reporting side effects which don’t necessarily go away when you stop taking it. This mushroom is under researched in terms of human side effects
  7. Jenny TipsforME

    Anyone used Lions Mane???

    @Hoosierfans @xebex have you tried again? I wonder if this is something you need to pulse or just have on standby for temporary relief of PEM?
  8. Jenny TipsforME

    My Keto Experience

    I’ve just started keto this week. How have your experiences been around sleep? @nerd @livinglighter and co I find while I do sleep it’s deeper but I’m waking up really early and don’t get back to sleep. I’m wondering if this is the Dawn Effect? If it’s harder to stay in ketosis early in the...
  9. Jenny TipsforME

    Persisting fatigue & myalgia as the presenting features in a case of hypokalaemic periodic paralysis

    I have all these symptoms and have had raised creatine kinase on a bad myalgia day (returned to normal ie 10x reduced on non achy day but fobbed off due to fluctuation). My Period Paralysis testing was inconclusive though - borderline results but severe symptoms so they didn’t think the test...
  10. Jenny TipsforME

    Poll: Have you ever experienced complete paralysis of a part of your body?

    Yes I’ve observed this in periodic paralysis groups too. Obviously PP is rare so not many people with POTS have PP. But if you have PP the chances of having POTS seems quite high. So an interaction makes sense.
  11. Jenny TipsforME

    Poll: Have you ever experienced complete paralysis of a part of your body?

    Yes it was that team but not Hanna himself. It was a frustrating appointment. I’ve definitely heard other people with Periodic Paralysis say they can’t speak during an episode. Who would you see in the UK? The trouble is now I probably wouldn’t risk travelling to an appointment again. I had bad...
  12. Jenny TipsforME

    Poll: Have you ever experienced complete paralysis of a part of your body?

    I think what I’m describing as orthostatic triggered episodes are what you mean by complete paralysis though - I can’t even move my fingers and it’s like the neurotransmitter signal to move doesn’t get through. For the other type it feels like there’s something out of balance causing profound...
  13. Jenny TipsforME

    Poll: Have you ever experienced complete paralysis of a part of your body?

    BTW I’m not sure if the term ‘complete paralysis’ is helpful in differentiating Primary Periodic Paralysis from ME - it appears this can be experienced as variations of weakness severity (and as I described the UK periodic paralysis experts don’t expect you to lose speech). The main thing that...
  14. Jenny TipsforME

    Poll: Have you ever experienced complete paralysis of a part of your body?

    This is a weird experience for me - I saw this poll on Twitter but I’m the person who started the previous discussion linked in the first post here. I’ve not been up to keeping up with forum discussions. The poll doesn’t exactly fit for me, I ticked non genetic diagnosis but it was a bit unclear...
  15. Jenny TipsforME

    Instant relief with inosine + caffeine

    My brain is on holiday, I’ll have to come back another day
  16. Jenny TipsforME

    Biomarkers from Plasma Metabolomics of ME/CFS Implicate Redox Imbalance in Disease Symptomatology

    For all of us there’s a possibility that some symptoms are incorrectly labelled as ME when they’re something else on closer inspection. My muscle problems have felt quite different the last 10 years from the first 10 years of ME, so re this issue I’m more concerned with what’s specifically...
  17. Jenny TipsforME

    Biomarkers from Plasma Metabolomics of ME/CFS Implicate Redox Imbalance in Disease Symptomatology

    Does anyone have this come up from genetic results? I have a couple of missense in CPT2 but heterozygous and classified as likely benign but the lab had picked out as a possible cause of episodic weakness rs1799822 and rs1799821
  18. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    No it’s a hazy memory (probably 10 years ago). It wasn’t a dramatic remission I just generally improved.
  19. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    I’ve written a blog post about my attempt to understand IDO Metabolic Trap Hypothesis https://tipsforme.wordpress.com/2018/10/13/understanding-the-ido-metabolic-trap-hypothesis
  20. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Yes I came across this too. Suicidal people tended to have higher kynurenine. This is worth bearing in mind as a possible consequence of messing around with this pathway, especially if your mental health is relatively good given the circumstances.
  21. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Yes it wouldn’t need to be 8 weeks for them but the trigger is important I think- after a short stressor you to return to normal even if you have IDO2 variants. Lucky for you @wigglethemouse I tried to get it through our information sharing Russian friends but it didn’t open :( [edit got it now]
  22. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    But did they experience 8 weeks of a continuous stressor as a trigger? That is the key element with this hypothesis re the difference between healthies walking around with IDO2 variants and people stuck in a trap. In a sense it’s almost like the IDO2 variants don’t matter (so many people have...
  23. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    There might be methodology issues https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5119657/ (And we are thinking of a specific context rather than everyone who has IDO2 SNPs) Reference 17 from that quote is https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3905741/ confusing :thumbdown: my brain may...
  24. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    @nandixon it does sound like the IDO2 SNPs do impact tryptophan catabolic activity (somewhere quoted as 90% less effective). Have they also knocked out IDO1 function when they test this? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4238401/
  25. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Also https://link.springer.com/article/10.1007/s00726-014-1766-3
  26. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    @Murph @nandixon https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4432394/ Bold mine
  27. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    I’ve come across papers indicating a distinctive role for IDO2, not sure if I can find again
  28. Jenny TipsforME

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    That does sound like a problem. Is it perhaps more to do with how IDO1 responds to 8 weeks of a stressor? I think without this trigger we don’t expect the IDO2 variants to cause any noticeable problems. [/url] The computer model indicates a clear difference between a 10 day stressor and an 8...
  29. Jenny TipsforME

    ENLIS decoding mitochondria related genes...lost!

    I’m just going through these threads about mitochondrial stuff. Does your mum have mitochondria related symptoms? You would expect almost all your M variants to be the same as your mum, whether or not they’re causing problems. It is also possible to acquire mutations later in life or have de...
  30. Jenny TipsforME

    Mitochondrial disease confirmed!

    Oh I realise why I didn’t add my 23andme data to Enlis as well - you pay $40 per upload I’ll have a think about that!