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

    To become a member, simply click the Register button at the top right.

Search results

  1. energyoverload

    How many of you have medication resistant myalgia?

    How many of you viewing this thread have moderate -severe myalgia (muscle pain) that is resistant to the following types of medication? (Please state which categories it is resistant to): NSAIDs(Celecoxib, iburprofen, Aspirin, diclofenac, naproxen) Gabapentinoids (gabepntin, pregabalin...
  2. energyoverload

    Metabolic trap: what to do / avoid ??

    The idea Ron mentions in one of the videos about using hyperbaric oxygen therapy to increase enzymatic activity is interesting. I wonder if this could be used alongside a tryptophan deficient diet and 5-hydroxy tryptophan supplementation with an incremented re-introduction of tryptophan to a...
  3. energyoverload

    Metabolic trap: what to do / avoid ??

    Does anyone have any insight with regard to how IDO blockade could mediate cranio cervical stability which myself and others are increasingly often being co-diagnosed with? Symptoms profoundly improve (muscle weakness, sensory hypersensitivity) after applying manual traction. If IDO...
  4. energyoverload

    Niacin (Niaspan) for Microglial activation?

    I was wondering if anyone has taken niacin at relatively high doses (1500mg/day) in the form of either instant release Niacin or modified release (Niaspan)? I am not insterested in Niacinamide or Nicotinamide which is commonly taken as part of the methylation/mitochondrial augmentation...
  5. energyoverload

    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    Interesting. I actually have Liver Fibrosis and fullfill the Canadian criteria for ME/CFS. However, we think the fibrosis may have been instigated by a course of retinoids (roaccutane) a decade ago to treat acne. (Even though there was only mild LFT elevation).
  6. energyoverload

    Klimas/NOVA gene expression, treatment avenues

    Has mycophenolate mofetil been considered in the context of increased T cell clonal expansion (Stanford finding)? It will be interesting to see how Cyclophosphamide pans out with regard to reducing cytotoxic T cells.
  7. energyoverload

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

    Did someone mention (or the OMF conference) that Prof Jonas Berqueist (sp) was planning to run a small study using kynurenine? Interestingly oral kynurenine sulphate has been tested in humans before. If the majority of pathology is dependent on the absence of kynurenine and some of its...
  8. energyoverload

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

    Interesting, so by that method maybe a long term low tryptophan diet in parallel with a drug to redirect amount of intracelullar substrate available for IDO could be of use - e.g. something that activates tryptophan hydroxylase. Previously when I used BCAAs in conjuction with foods very low in...
  9. energyoverload

    Metabolic Trap: Transient tryptophan depletion

    Thanks @dreamydays, I have moved it to this thread: https://forums.phoenixrising.me/ind...s-at-stanford-discussion-thread.61590/page-22
  10. energyoverload

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

    Just to feed in an extra case here - peviously having tried dietary tryptophan depletion combined with high dose BCAAs to inhibit LNAA dependent transport, and having personally found this transient deprivation not to have any major detrimental effects, I decided to revisit this in light of...
  11. energyoverload

    Metabolic Trap: Transient tryptophan depletion

    Previously having tried dietary tryptophan depletion combined with high dose BCAAs to inhibit LNAA dependent transport (used in Acute Tryptophan depletion), and having personally found this transient deprivation not to have any major detrimental effects, I decided to revisit this in light of...
  12. energyoverload

    Has anyone been treated for a Trypanasome Infection?

    At the recent Invest in ME meeting it struck me as interesting tthat Ron Davis' preliminary findings of cell free DNA profile showed most similarity to trypanosomes. Does anyone happened to have been treated for this type of infection, especially at the later stages (CNS involvement), whilst...
  13. energyoverload

    Any improvement on Tamiflu? (oseltamivir)

    Hi, I have come across someone who is mostly housebound and at times bed bound who has seen profound improvement on tamiflu. I'm wondering has anyone else been prescribed this and experienced improvement in ME symptoms? EO.
  14. energyoverload

    How can we "stimulate" mTOR?

    @nandixon Did anyone contemplate the potential capacity of or Insulin or IGF-1 to augment mTORC1 activation in parallel to high dose L-leucine + L-arginine (I take >6 grams of leucine three times/D) via the PI3K/AKT pathway. Of course with this I am making the assumption that PI3K/AKT signalling...
  15. energyoverload

    Who Would Like to Participate in a Simple Study to Measure Blood Lactate Levels?

    Are you all thinking of going ahead and purchasing this device? I think we need to devise a physical stressor that we can standardize e.g: i) take lactate pre-exercise ii) repetitive hand grip, with: ii) maximal muscle contraction every 2 seconds (timing using a metronome soundtrack) with 1kg...
  16. energyoverload

    Targeting Pyruvate Dehydrogenase

    Has anyone had any improvements in myalgia from enhancing pyruvate dehydrogenase activity through the high dose supplementation of specific co-factors: Benfotiamine 500mgs every 8 hours Alpha Lipoic Acid 600mgs every 8hrs Acetyl Carnitine (+) fatty acid oxidation, 1500mgs every 8 hours. (also...
  17. energyoverload

    Curcumin for muscoskeletal / lactate pain

    @u&iraok Does it seem to help any symptoms other than pain such as increase stamina ever so slightly? Or tone down any sensory overload?
  18. energyoverload

    Curcumin for muscoskeletal / lactate pain

    Has anyone tried the isolated Pterostilbene component of Resveratrol that is believed to have greater bio availability on its own, that may be less susceptible to undergo glucoronidation perhaps - I need to check this! Hence that may determine in part the degree to which bioperine enhances bio...
  19. energyoverload

    Curcumin for muscoskeletal / lactate pain

    Which symptoms has transresveratrol helped improve? It's not clear in literature but possibly as a SIRUTIN1 agonist, I think the AMPK activation is found secondary to the former. Frustratingly I did a short trial of Metformin (2 weeks) 500mg twice daily for AMPK activation, but had to stop as...
  20. energyoverload

    Curcumin for muscoskeletal / lactate pain

    Thought it would be best to document my experience here. Because my pain became so bad (predominantly muscoskeletal but also some minor lingering nerve pain) curcumin Longvida brand administered at 1.5 grams every 6 hours (6 grams daily) profoundly began to improve my pain by around 2 weeks...
  21. energyoverload

    Peter White writes to Wall Street Journal

    The lack of consent would appear to be by design - so the PACE investigators could only win whether the trial was a load of nonsense or a complete success. We can only see their opinion of the data. A lot is riding on this - I know many therapists would find reduced employment if PACE was found...
  22. energyoverload

    Peter White writes to Wall Street Journal

    Seems they are playing multiple contradictory cards. Data Protection act doesn't apply as anonymous. Moreover data was shared with Cochrane. Why could data not be shared with another researcher requesting it? Or would they have to be bum chums?
  23. energyoverload

    Trans cutaneous Vagal Nerve Stimulation?

    Interesting. I actually had an alpha stim device but it doesn't help much with POTS or sleep as too stimulating. In theory stimulating VN can increase GABA and acetylcholine release. When you say improvement in concious awareness what do you mean exactly? Cognitive enhancement. Odd how most...
  24. energyoverload

    Transcutaneous Vagus Nerve Stimulation, a treatment option for ME/CFS?

    Hey has anyone tried t-VNS? I'm very interested to hear from anyone.
  25. energyoverload

    Trans cutaneous Vagal Nerve Stimulation?

    Has anyone considered using t-VNS as a treatment to increase parasympathetic tone, affect POTS, sleep etc? This German company makes them for use in treatment resistance epilepsy. All one would need is off label prescription. My tolerance to all useful symptom drugs builds up too rapidly even...
  26. energyoverload

    Plant Extract Honokiol - For Inflammatory Brain Damage ?

    Also activates LKB1-AMPK axis in various cell types. In line with Julia Newton's findings of AMPK response failure (no phosphorylated AMPK (in skeletal muscle culture post stimulation, would be interesting if anyone has tried high dose Honokiol to see if this deficit is rectifiable provided...
  27. energyoverload

    Tell our charities: QMUL must release PACE data

    This document addresses expectations for open sharing of anonymized data sets of MRC funded trials, thereby through the act of patients consenting to take part in such a trial surely they would be subject to these rules...
  28. energyoverload

    Tell our charities: QMUL must release PACE data

    Can anyone propose methods by which anonymous data such as that from pedometers could be personally identifiable? I'm having difficulty thinking how someone could identify an individual by their step count. We need to clarify this point? Fb: https://www.facebook.com/actionforme/?fref=ts
  29. energyoverload

    Tell our charities: QMUL must release PACE data

    Thanks I feel I've communicated most points as clearly as I'm able at present. Feel free to re-post this.
  30. energyoverload

    Tell our charities: QMUL must release PACE data

    I wanted to sum up much of what is said on this thread but also added some other stuff. Sorry I sound a bit mumbling at times. Thanks @charles shepherd & MEA for representing patients. [/USER]