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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. J.G

    NIMODIPINE use in M.E. / CFS : A comprehensive guide. S. Parker (MBA, BSc) January 2014

    Thanks, I appreciate that. Since - in my case at least - I'm after the strongest possible haemorrheologic effect, it makes sense to shoot for "normal" rather than microdoses. And either way, I'm not keen to disrupt the stability that Abilify has helped me achieve. It's worth noting that I...
  2. J.G

    NIMODIPINE use in M.E. / CFS : A comprehensive guide. S. Parker (MBA, BSc) January 2014

    I was able to trial nimodipine 30mg/day for some weeks. The purpose was to learn whether the drug's haemorrheologic effect (ie. improvement of red blood cell deformability) would help my ME symptoms. However, nimodipine at concentrations as low as ~10mg/day makes me feel noticeably more unwell...
  3. J.G

    NIMODIPINE use in M.E. / CFS : A comprehensive guide. S. Parker (MBA, BSc) January 2014

    Is nimodipine still helping you? I may have the option to try either nimodipine or pentoxyfilline. Thanks!
  4. J.G

    Pentoxifylline: shows amazing results but it's a potent immunesupresive agent: your opinion?

    Brilliant. This is the information I was looking for. I don't have access to the book; does Simpson by chance further elaborate on the pentoxyfilline dosing regimen, such as starting low(er) and gradually working up to 400mg 3x day? I'm also curious whether Simpson identified subsets in MECFS...
  5. J.G

    Is Apheresis an effective treatment for Long Covid and ME?

    Well! In 2018, Davis et al. published the study "Erythrocyte Deformability As a Potential Biomarker for Chronic Fatigue Syndrome". Link here. Then in 2019, the OMF-funded research paper "Red Blood Cell Deformability is Diminished in Patients with Chronic Fatigue" came out. Link here. The thought...
  6. J.G

    Is Apheresis an effective treatment for Long Covid and ME?

    This is very exciting. As others have said, "sticky" or "thick" blood is an old finding in MECFS. Wouldn't it be something if a combination of impaired red blood cell deformability and these microclots conspire to impede oxygen exchange in capillaries... For me personally, multiple...
  7. J.G

    Ciprofloxacin again - a never ending story

    That's an impressive list of effects and side effects, but I don't immediately see in that document whether there is one particular locus where cipro persists after one stops taking the drug.
  8. J.G

    Ciprofloxacin again - a never ending story

    Are these reservoirs localised to any particular organ?
  9. J.G

    Crashes - what does science tell us for practical use?

    Oh wow, first time I've seen anyone describe this specific PEM-reflux connection! Applies to me as well. When I was at my worst (ie. in a state of continuous PEM), I had to very consciously double-stack my pillows to elevate my head or deal with acid coming up the esophagus 24/7. Very...
  10. J.G

    Abilify- Stanford Clinic Patients

    Makes perfect sense. I'm on 0.2mg and hesitant to increase for the same reason - I'm looking to drag out Abilify's effectiveness for as long as possible. A gentle rolling curve rather than a sharp rise and fall, so to speak. I've been on Abilify now ~1 month, and already it's working wonders...
  11. J.G

    Abilify- Stanford Clinic Patients

    Well, that's a bummer. Aripiprazole tolerance seems inescapable for all but a very lucky few of us. If only we knew what the mechanism is - there may or may not be more to it than simple receptor desensitisation. What was / is your maximum dosage, @leokitten?
  12. J.G

    Is there anything that’s actually promising?

    Only a fellow pwME could follow up the words "objective evidence of brain damage" with a "Yippee!" :lol: A potent statement of how dire our diagnostic situation is, if there ever was one!
  13. J.G

    Oxaloacetate. I am joining a study. Maybe you want to try

    The compound in spinach is oxalate. The supplement being talked about is oxaloacetate. If Wikipedia is to be believed, there indeed exists a biochemical reaction that converts oxalate to oxaloacetate - but it's thought not to occur in humans. Only in plants...
  14. J.G

    Oxaloacetate. I am joining a study. Maybe you want to try

    I'm wondering whether the therapeutic benefit of oxaloacetate, if there truly is any, stems from its relationship with the urea cycle. If the metabolic studies by i.a. Norwegian researchers are accurate (which they look to be) and we indeed burn lots of amino acids in lieu of glucose for energy...
  15. J.G

    International ME/CFS Conference to Focus on New Frontiers, Long COVID, Exercise Studies, Immune Exhaustion & More

    That's great! I'm sure we can expect a paper sooner rather than later :) Increased AMPK activation and glucose uptake sounds like a big one, in light of the PDH complex inhibition that Fluge & Mella found. Reduced lactate production ties in with that. I've seen AMPK described as the "master...
  16. J.G

    International ME/CFS Conference to Focus on New Frontiers, Long COVID, Exercise Studies, Immune Exhaustion & More

    Did Dr. Kaufman elaborate in his presentation on what he believes is the mechanism behind oxaloacetate's efficacy in improving symptoms? Oxaloacetate is involved in a lot of biological processes - gluconeogenesis and the urea cycle to name just two.
  17. J.G

    UK Biobank Genetic Study - Commentary from Decode ME

    I initially misunderstood as well, and wondered how on earth does DecodeME have results already :rofl: The blog author writes the following about the BioBank study, which to me seems like a premature and overblown conclusion based on a dataset of ~1200 people with self-reported MECFS. "UK...
  18. J.G

    PEM = mental/vagus - help me guess my pathology!

    Hey Judy, I'm sorry to hear you've been struggling so much. Your case sounds a little like mine. I have post-viral ME from an unidentified infection that I, like yourself, contracted in Asia. I also developed the severe idiopathic pancreatic insufficiency that you describe (for which I take...
  19. J.G

    Is Emotional PEM a thing?

    Interesting poll. At the top of the PEM curve, I experience increased anxiety and find myself moody. That's about 48 hours post-exertion for me. It took me a little while to become aware of this PEM-emotions connection, but now that I know the pattern is there, I find that it holds up every...
  20. J.G

    What’s next?

    Cool. I was thinking more along the lines of - what tangible benefits are you seeing from supplementary benfotiamine that you're not getting from standard dietary thiamine? But thank you for the info :)
  21. J.G

    What’s next?

    What does benfotiamine do for you?
  22. J.G

    What’s next?

    It's worth noting that low dopamine in affected cells is in keeping with the metabolic trap theory. High concentrations of tryptophan inhibit the activity of tyrosine hydroxylase (TH), the enzyme responsible for the synthesis of L-DOPA, in turn the direct precursor to dopamine.
  23. J.G

    Could 23andMe Survey garner attention for greater ME research?: "Pain, Fatigue and Cognition Survey"

    Is there a questionnaire option for "never unless I'd been asked to perform said mental arithmetic for more than 60 seconds in which case my brain pooped out like a dying lightbulb and I wound up with 2 days of PEM"? :rofl: I haven't looked at the survey but from the title, are 23andme hoping...
  24. J.G

    treatment help

    Years before that, even! In December 2012, @erist wrote of their experiences with low-dose Abilify: "Recently, I decided to try a very low dose of Abilify (.5-1mg/day as opposed to "standard" a/d dose of 5mg/day or anti-psychotic dose of 30mg/day) as an augment to the (useless) SSRI I have been...
  25. J.G

    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome

    Does anyone have access to the full text that they could share? A certain open access website isn't working for me ;)
  26. J.G

    Pupil Hippus Anyone? (Pupils constricting/dilating)

    It's exactly like this for me as well, the eye dilation and the muscle twitching. I've googled "myoclonus" a million times by this point. I also suspect that the cause is dopaminergic.
  27. J.G

    UK: Low-dose naltrexone as a treatment for chronic fatigue syndrome (2020)

    I took LDN for ~15 months in doses gradually building up to 4.5mg/day. It sadly did absolutely nothing for me. N=1, obviously. I have textbook post-viral MECFS.
  28. J.G

    Abilify- Stanford Clinic Patients

    This is correct. Abilify was originally developed to treat illnesses characterised by dopaminergic excess, such as schizophrenia. Standard doses of Abilify (15-30mg) block "dopamine receptors strongly enough to bat away the excess dopamine that causes psychosis". (See here.) The situation in...
  29. J.G

    Abilify- Stanford Clinic Patients

    I appreciate the words of warning. Abilify has been on my radar for some time now; I'm aware of the mixed testimonials, and I will not be taking it without the supervision of a medical professional. I'm also not looking to encourage (nor discourage, for that matter) anyone from trialling...
  30. J.G

    Abilify- Stanford Clinic Patients

    I've been thinking about this. Abilify acts on various subclasses of serotonin and dopamin receptors with differential effects on a per-receptor basis (agonism, antagonism, or partial agonism). You can see Abilify's pharmacodynamic profile on Wikipedia here (as aripiprazole) under binding...