• 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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  1. Keela Too

    Mirena coil

    No problems with mine.
  2. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    I have heard of some people taking bad reactions to Tenofovir/Viread. Not everybody seems to be able to tolerate the drug.
  3. Keela Too

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    I left a comment there.
  4. Keela Too

    25 Oct E Crawley speaking at Better Science Better Data event......

    I asked the following question on their site (https://app.sli.do/event/o0krjapv/ask) on 16th October. If numerical data (including cohort descriptors) are not disclosed, how can other scientists properly check for statistical errors or data misrepresentation? I wonder why my question...
  5. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    Yes - although it was only after taking it that I became aware of it's alternative possible mode of action.
  6. Keela Too

    25 Oct E Crawley speaking at Better Science Better Data event......

    You can also go there to "like" other people's questions. I've put one in, but it's still "awaiting review".
  7. Keela Too

    25 Oct E Crawley speaking at Better Science Better Data event......

    Apparently you can submit questions for the speakers here: https://app.sli.do/event/o0krjapv/ask
  8. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    @Binkie4 This was suggested to me by a friend, and the concept of a retro-viral background to ME made sense to me - so I went with my gut feeling and took it. I went in with my eyes wide open. I was obviously one of the lucky ones.
  9. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    I didn't try antivirals first. Perhaps I should have, but this was suggested to me, and so it's what I took. I'm not sure that knowledge is far enough on yet with any of these treatments to work out what works for whom... I feel a lot of it is largely down to luck. I feel like I was very...
  10. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    Sorry probably being dumb here but "CD counts"? I'm assuming when you say ART you mean Anti Retroviral Therapy (and not Agressive Rest Therapy, which is what I have also seen ART refer to. ;) ) I had a significant up tick at 16 weeks. Hoping you also will experience that. :)
  11. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    No.. I disagree - it is not a personal choice. See my above post #145. Sometimes it is the illness that dictates how very little we must do. xx
  12. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    This is totally opposite to how I was. I think you were lucky to be able to do this. Edit to add - Or perhaps as illness duration increases the sensitivity to exertion - and the long term damage it might do - decreases? I only became ill in early 2012, so was still in comparatively early days...
  13. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    Not sure what you mean? I was on Tenofovir, which is also called Viread. - or are you referring to my tentative remission? :p When I was most ill, I always said I was moderate - but looking back, I think I was severe, or at very least, at the severest end of moderate. Denial plays a part in...
  14. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    I think I'd call my improvement a "long-lasting" one rather than "permanent". I am realistic about the fact that this could just be a window of partial remission. I have had boths ups and downs during the time since I stopped Viread/Tenofovir. My ability now is substantially higher than it was...
  15. Keela Too

    Blood Sugar Frustration - Ideas?

    Apparently this can be down to a lack of salt. I make a hot drink with salt, white pepper, and fresh thyme to help this.
  16. Keela Too

    Blood Sugar Frustration - Ideas?

    This may not be for everyone - but this has helped me, and also my type 2 diabetic friend (who has come off ALL her insulin & other diabetic medication using this fasting technique alone). I have also found that fasting has helped to ease my ME symptoms! I've been told fasting can help reset...
  17. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    Yes like you I don't tolerate sugar well now. To be honest I don't eat that much sugary stuff anyway. Fruit is okay I find. Not sure why my morning sugars were high, but I don't think that in itself was the problem. I think I was just lucky that through the sugar thing, I found something that...
  18. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    Yes - but I find it easier to fast than to go that low on carbs. Also there is apparently something about fasting that helps revitalise the immune system. Also it seems to lessen my PEM effects. I'm not sure if it would be as much help if I hadn't already had the ARV treatment?? Who knows.
  19. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    It is interesting to think about, and I agree @Hip it really can't be known how things will go for me looking forwards. For now I'm taking one day at a time. However there's a bit more to my story you might find interesting. 1. I've found that fasting helps me! I was sliding down around...
  20. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    Okay so I'm the one who ticked much improved. I know up-thread I deleted my commentary (this forum upheaval business is disorientating) .. however my commentary is also in another thread which I can't actually delete now, so here's my full comment, originally posted in this thread...
  21. Keela Too

    Tenofovir (Viread) / Raltegravir (Isentress) Cures ME/CFS Patient Sick for 20 Yrs + Tenofovir Poll

    (Sorry with ongoing forum upheaval I have now deleted most of my post here. I will say however that Tenofovir helped me.) Earlier this year I wrote a blogpost about my improvements - It was in the context of NOT needing any form of graded exercise therapy in order to take up my new found energy...
  22. Keela Too

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Apologies. I see where I went wrong now. So - this isn't a part of a document submitted by a stakeholder then? If I understand it right now, the patient expert asked you for input and you gave in in a written piece that carried your first name?
  23. Keela Too

    Tuller Blog on Comments from NICE's expert reviewers (via FOI request)

    Hi Amanda - I appreciate you volunteering yourself as a patient expert, and that you have identified yourself now as the patient expert. Thank you. Are you able to comment on how/when you were selected? And whether NICE are likely to consult more than one patient expert as the re-drafting...
  24. Keela Too

    Worth reading: Thinking Critically about ME research

    @Valentijn Maybe you could copy your comment here too? And I agree @trishrhymes blogs have limits, but it's always worth pointing out a good one I think.
  25. Keela Too

    Worth reading: Thinking Critically about ME research

    Short read. Well said that man! https://evanodell.com/blog/2017/10/03/thinking-critically-about-me-research/ " The laziest kind of statistical research is that which relies solely on presenting the results of statistical tests, without making any meaningfull effort to critically interpret the...
  26. Keela Too

    More from Science Medica Centre on SMILE

    Hmmmmm... I'm no fan of homeopathy, and XMRV was before my time. Perhaps I retweeted some-one he dislikes? Ah well - such is life. Too short to worry about this sort of thing. :P
  27. Keela Too

    More from Science Medica Centre on SMILE

    This is interesting. I don't think I've ever had any interaction with David Colquhoun yet apparently he has blocked from seeing his tweets!! ??
  28. Keela Too

    "You and yours" BBC phone in on "chronic fatigue" -26 sept

    So why does anyone interview her? An interview given under those conditions delivers only unchallenged bias. And why, are interviewers cowed by these threats? Surely the threats themselves should become part of the story! Time for the media to leave her out in the cold I think.
  29. Keela Too

    QMUL spent £250,000 in legal fees to prevent the release of the PACE trial data

    @Cheshire I wonder does this need its own thread? :)
  30. Keela Too

    QMUL spent £250,000 in legal fees to prevent the release of the PACE trial data

    WOW Cheshire! I'm away to like that comment on Twitter and FB. :)