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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. Dr Who

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

    NAD (Nicotinamide Adenine Dinucleotide) is not really a fuel, although it can be metabolised when around in excess quantitities. The significance of NAD is in its faciliative role as a substrate and coenzyme in many of the enzyme reactions of extracting the energy from fuels such as glucose...
  2. Dr Who

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

    One would hope so, but I could never confess to doing such a thing. I have prescribed chlophenamine (Piriton) for itchy sleeplessness, itchy anxiety, itchy agitation and even itchy psychosis (when the antipsychotics can't be increased) all with the remarkable side-effect of helping the non-itch...
  3. Dr Who

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

    In short, no. In the UK drugs are approved in terms of safety/danger versus effectiveness for a given condition. For example, some of the older chemotherapy agents are fantastic at getting rid of psoriasis, but if a doctor prescribed them for the treatment of psoriasis the doctor would be...
  4. Dr Who

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

    Before getting too excited about the raised Tryptophan, I would like to see a full analysis of the full Kynurenine pathway in ME/CFS patients versus healthy controls. The Kynurenine pathway is what Tryptophan is metabolised through on its way to be being turned into niacin and ultimately NAD...
  5. Dr Who

    No change in UK government funding decisions for CFS/ME research funding?

    (Hansard Link below) Caroline Dinenage, Department of Health and Social Care, sidesteps the question around the lack of cfs/me research in uk. Funding for research is allocated according to assessment by peer review. For "peer" read doctors in the highest levels of academic research and...
  6. Dr Who

    Hear Ron Davis' IIMEC 13 Presentation (video)

    Well, have a response from marilyn@omf. It is OK for me to link the youtube video on doctors.org from the OMF perspective. I think I should ask IIME also though. Who was it that posted it on YouTube originally? What do you guys think?
  7. Dr Who

    Posted this in a usually ME hostile "Doctors" only forum

    Hi Anniekim, I think the examples of yourself and your mother illustrate the limitations of the ICC as a diagnostic tool perfectly. I have no doubt that both you and your mother suffer from ME/CFS. However, if a doctor were to use them, and only them, to diagnose your mother after a, say 3...
  8. Dr Who

    Hear Ron Davis' IIMEC 13 Presentation (video)

    Would I be treading on any toes or disrupting any IIME strategy if I tried to prime and interest any sympathetic doctors and health journalists into this and the upcoming IIME conference/update later this month?
  9. Dr Who

    Hear Ron Davis' IIMEC 13 Presentation (video)

    Wow! Thank you for posting this. This is the first time I have seen this. I had only heard about it second hand. There is so much more in this than I expected. I would so love to post a link in doctors.org.uk but better not. The usual psycho-cultists would just practice and prepare...
  10. Dr Who

    Posted this in a usually ME hostile "Doctors" only forum

    I think the point is that, although someone meeting the criteria for an ICC 'diagnosis' of ME/CFS almost, absolutely has ME/CFS, the spectrum of symptoms produced by this illness is so heterogenous, with one persons symptomatology compared to another's being so variable and with so many...
  11. Dr Who

    Posted this in a usually ME hostile "Doctors" only forum

    Thanks for that Scott. Have Emailed her, but I now need to address some domestic work/responsibilities for a few days which, as you all know, means it might take weeks. My silence does not mean I have given up, or gone!
  12. Dr Who

    Posted this in a usually ME hostile "Doctors" only forum

    Just one anonymous "like" and "thank you for posting". Anybody from here perhaps? The rest (x 3 or 4) as expected so far, sadly. Maybe I'll plant it in Chat General or the Air Your Views to the Press forums there? What do you think?
  13. Dr Who

    Posted this in a usually ME hostile "Doctors" only forum

    .... been a while since I gave them a poke. Have always regretted it. Just wanted to see if things are changing in my profession. Posted in the...... Nutrition Forum A Philosophical Observation on the ICC Criteria for diagnosing ME A Philosophical Observation on the ICC Criteria for...
  14. Dr Who

    The Nottingham Tool Kit: how the UK is selling ME patients down the river with £200 million for MUS

    .... could you give me a link to 'FINE'?