• 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. funkyqueen

    May daily pressure therapy help with hypovolemia/ POTS / dysautonomias ?

    Anyone of you, guys, with severe hypovolemia/ POTS/ dysautonomias,with a good feedback using daily a kind of pressure therapy massage chair ? ( at the level of calves ) I read Drs Bell / Streeten writtings, about the utility in some cases, of wearing " anti-shock pants " ( anti-G suit ? )...
  2. funkyqueen

    Urgent, please ! Help needed

    Hi there ! To make it very short, I'm in a poor and pathetic state ATM. I do not know why, but my " " healt "" worsen a lot, recently. I called 12 times Emergencies , those 7 last weeks, for several states of severes brain hypo-perfusion/ with pré-syncope imminent feelings, state of imminent...
  3. funkyqueen

    Pulse pressure & cerebral perfusion

    @anciendaze : thanks a lot for yours thoughts and advices !
  4. funkyqueen

    Pulse pressure & cerebral perfusion

    Elevating my feet above my head is ( was )my final defense ( also ), but, how to do when your autonomic nervous system ( I guess it's in large part,his fault ), fails sooo much that even : - lying down 23h /24h, ( even legs raised several hours), - taking Desmopressin/ Antiplatelet agent daily...
  5. funkyqueen

    Pulse pressure & cerebral perfusion

    Dr. Bell reports that a pulse pressure of less than 40 does not allow a correct cerebral perfusion. (But ,I understood that is the standard, for standing, so QUID ?? about the minimum pulse pressure required for an adequate cerebral perfusion in a sitting and a lying position? Is it the same...
  6. funkyqueen

    Compass-31 ?

    Thanks a lot, @Mary !! :thumbsup::angel: You made my day ! What do you think about this test, guys ?
  7. funkyqueen

    Compass-31 ?

    Hi there ! I'm searching the " Compass-31 test ", ( Composite Autonomic Symptom Scale ), but , unable to find it :/ Does someone have it, please ?
  8. funkyqueen

    Anyone helped by Huperzine & Vinpocetine ?

    i tried piracetam but at low dosis, and few days only, because not sure about what am I doing... I mean, i do not know if it's a good thing to take brain vasodilatators, if i have( and i have ) ischemic problems and very poor blood flow ( without being able to correct in appropriate way this...
  9. funkyqueen

    Could you please .....? ( another one GET UK """study"" ", but on childs/pre-adolescents)

    Hi there ! Could some of you, guys, (with an English better than mine, and sufficient " energy"), can writte to this team, trying to learn them ( with links of studys, and particulary, the exciting last one - Naviaux &Al, about hypométabolisme ), how much it will be harmfull for those...
  10. funkyqueen

    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    Exiting news !! :) According to this article from the Daily Mail : "Lead researcher Robert Naviaux said something similar happens when animals dial down their metabolism to hibernate" Eloquent... Although it does absolutely not surprise me, ... the comparison speak for it-self...
  11. funkyqueen

    My Rituximab experience for ME

    Thanks a lot for yours supportives messages, they are much appreciated ! Unable to answer for the moment, as i have some computer keyboard's problems/ etc
  12. funkyqueen

    My Rituximab experience for ME

    Hi there ! Just to say that my B-cells returned, and with them ALL the symptoms of severe ME (Rituximab, had not totally healed me, but improved ALL symptoms, and even made some totally disappeared...) I was moved from a nameless state of agony, to an acceptable state of survival. I am now as...
  13. funkyqueen

    Rituximab for severe ME. Should i try?

    I'm sorry but i'm not agree with you on that, @Marky90 : 1- Yes, if you want to play with words, certainly, Rituximab is a B cells depletor, and it is customary to say that this is an immunosuppressant/immunomodulator, more than chemo, which is true . But from the moment Ritux rest (one of)...
  14. funkyqueen

    Rituximab for severe ME. Should i try?

    All is said ! Edit : yes, i have something to add,@NL93 :you wrote that you are afraid that you should get more ill as you are now, with Ritux... Let me tell you that , it was my worst fear... so much more afraid by that than death ...but...worst than i was , lol, it was death ;) So... yes...
  15. funkyqueen

    Question re: how Rituxan compares to other immunosuppressants?

    Ok, thanks @deleder2k Yes, @BurnA , you right, I'm sorry about that, it seems i made a mistake in my calculations ! :oops: ...reading that the estimated study completion date - part A- will be in Nov. 2016
  16. funkyqueen

    Question re: how Rituxan compares to other immunosuppressants?

    So, @deleder2k , you know 3 diferents patients involved in CycloME, (Correct me if I'm wrong?) - 1 who had not responded to Rtx, and has had a rapid response with Cyclo, - One of which had previously Rtx in Phase II, which had not responded to Ritux, and then had Cyclo,and seems to not respond...
  17. funkyqueen

    Cyclophosphamide in ME/CFS Part A:an Open Label Phase-II Study With Six Intravenous Cyclophosphamide

    BurnA wrote : (impossible ATM for me to quote correctly, do not know why) " I read this is one of their letter in plosone : (From Fluge) :" We admit the strong and repeated responses to new Rituximab infusion seen in our three pilot patients may have influenced us. We have later treated...
  18. funkyqueen

    Australian scientists make breakthrough in Chronic Fatigue Syndrome testing

    Published yesterday : MicroRNAs hsa-miR-99b, hsa-miR-330, hsa-miR-126 and hsa-miR-30c: Potential Diagnostic Biomarkers in Natural Killer (NK) Cells of Patients with Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalomyelitis (ME) Robert D. Petty , Neil E. McCarthy , Rifca Le Dieu , Jonathan R...
  19. funkyqueen

    First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS

    Nobody know if this study will be replicated ??
  20. funkyqueen

    Question re: how Rituxan compares to other immunosuppressants?

    Lord ... :( I am so disgusted (and at the same time, as I'm no more a child, not at all surprised) to see that everything is about money ... Did you know that Genentech, only for the year 2008 (or 2009, not sure about the year), just for Rituximab, just in USA, and just only for one...
  21. funkyqueen

    Question re: how Rituxan compares to other immunosuppressants?

    Hi @Gingergrrl & all ! I can not answered your question because i " never" had other immunosuppressive's drug others than Ritux... BUT... I tried corticosteroids (prednisolone) before Rtx's protocole, and, as i " answered" to it ( i mean that corticosteroids improved me "a lot" but... for...
  22. funkyqueen

    A biomarker in low NK cell activity...

    My NK function was tested too at OMI, and was very low too ( 6 ) +1 !
  23. funkyqueen

    My Rituximab experience for ME

    I had not written anywhere which symptoms are improved or not to me, for the reason that I mentioned in my first comment in this thread, but ... I can not say that the conclusion you're doing is totaly wrong ;) I must also say that I was very very very severe in terms of POTS / OI /...
  24. funkyqueen

    About our body temperature drop ?

    Hi @Butydoc :) And thanks for yours thoughts It's very interesting, and for me, it make sense...
  25. funkyqueen

    My experience of IV saline in the uk

    @vikkilouise , i begun to read your blog, and Gosh, you have a picline ! I would " like" to have one too, (ideally), because, it's something very painfull, having 2 infusions in harms per week... In addition, I have little piquables veins (only 3), so I have to think every time to change...
  26. funkyqueen

    About our body temperature drop ?

    I would have liked to hear your opinion about the reason(s) why ,we have a body temperature drop? And I like to have the opinion of Professor @Jonathan Edwards on this? (thanks in advance ) I think, I have no certainties, but I think that our temperature drop is related to PENE ... but I...
  27. funkyqueen

    My experience of IV saline in the uk

    Oui, @Cheshire , mais tu n'imagines pas à quel point j'ai du batailler pour les avoir ! Bien évidemment, je n'ai trouvé aucun spécialistes en dysautonomies en France, ( et toi ? ) ,mais mon Généraliste / mon Interniste me les prescrivent Yes, Cheshire, but you can not imagine how hard it was...
  28. funkyqueen

    appointment with Dr. Bela Chheda from the Open Medicine Institute

    Happy for you that you'll go to OMI, @andreasvq ! I think it's a really good thing ! :) I came back from my last trip at OMI one month ago... I never heard / never seen about Dr Bela Chheda, but I'm happy that Dr Kogelnik and Dr Kaufman find some help ;) For the sibo test , if you are a...
  29. funkyqueen

    My experience of IV saline in the uk

    Welcome @vikkilouise ! Great to read that you can have some saline's IV !!! :) My dysautonomias are very severe too, and, i used to have since several months, in average 2 infusions of 1 liter of saline per week... And it just save my life ( i done 6 T.I.A., before those precious infusions)...
  30. funkyqueen

    My Rituximab experience for ME

    Hi there ! (copy/paste from my answer to Rebecca's thread, " Rituxan's update" ) : I am very happy, very very happy, Rebecca, that you have been able to qualify you for another round of Rtx ! I discovered this evening your posts, that one where you said that you had a relapses, and this one...