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

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  1. E

    To Give Or Not To Give...and How Much?

    Some nice ideas there. It's good to show people an entire range of ways how they could organize their giving.
  2. E

    Mitochondrial Function Profile (Acumen Laboratories, Biolab) via Dr. Myhill

    Thanks for your inputs. Don't worry, Justy, i will have to travel tomorrow anyway, so i can't be around a lot, but it's interesting to see the results of other people. It would be very intersting to see the results of healthy persons as well, but probably not a lot of them have taken the test.
  3. E

    Lipkin comments on XMRV study

    Wow, he got SARS himself? Quite a story, with the 10'000 kits and everything...
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    DIY Poor man's Tilt table test (PMTTT) for OI, POTS and NMH

    Thanks, Xchocoholic. If i have some time and patience, i will try it with a one hour period too. But i think in the end only a real tilt table test will give a result i can trust, because it's more controlled and standardized and they can compare it to other tests they have done in the same lab...
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    DIY Poor man's Tilt table test (PMTTT) for OI, POTS and NMH

    I have now bought a blood pressure monitor as well, a Beurer BM 58 (it's for the arm), because i wanted to see if i can produce some data to bring to my doctor, before i ask for a tilt table test. I tried to do this twice: Lay down for 10 minutes, then take your bp and hr, then stand up and...
  6. E

    Mitochondrial Function Profile (Acumen Laboratories, Biolab) via Dr. Myhill

    Hi I've recently had this test (http://www.drmyhill.co.uk/wiki/Mitochondrial_Function_Profile) and will post my results here. It would be interesting to compare with others, just to see what the picture is... I would also like to know what other specialists for mitochondrial disease think...
  7. E

    What CFS cause(s) should I donate to?

    The one with 3 letters is the Chronic Fatigue Initiative, but as far as i know, they're not really an institute themselves. They fund studies done at other places. And there was no way to donate mentioned on their website when i last checked. But they might be open to it, if you ask them...
  8. E

    Lipkin comments on XMRV study

    I don't know if you are referring to what i said, but i don't think that was superficial. Doesn't it make sense that you need to prove you can tell cases from controls in an independently blinded set of samples? I think it's absolutely necessary. As far as humility goes, where was that when the...
  9. E

    Lipkin comments on XMRV study

    I totally agree with you. After the Blood Working Group anything XMRV/MRV that's not the result of an independently blinded study is more or less worthless, as far as i'm concerned. I think they now need to prove they are right, if they want people to believe them.
  10. E

    Lipkin comments on XMRV study

    I also think the "other" Lipkin study will be interesting. But in my opinion (as a non-scientist too...) nothing in science is every 100% settled for ever. There should always be the chance to come back, look at it again and find out it was wrong.
  11. E

    Lipkin comments on XMRV study

    I'm not into conspiracies much either, but i don't think she has much of a choice here. If she were not to participate that would be held against her for ever, i guess. I think she has to participate and if the result is negative and she still believes in XMRV/MRV, she will have to find another...
  12. E

    Lipkin comments on XMRV study

    Why do you want this to happen (regarding your first question)? Why do you hope for this outcome? I know others want the opposite to happen and one could ask the same question there, of course. I agree that the evidence is against the involvement of XMRV/MRV, but shouldn't we try to be unbiased...
  13. E

    Complex Chronic Disease Clinic (Update), opening at BC Women's Hospital

    I think especially for something government planned it sounds pretty good. Also they mention treatment a couple of times, so i don't think there won't be treatment there. But of course in the end one will have to wait until they open and see patients, before one can make a judgement. I do...
  14. E

    Voluntary Muscle Activation and Exercise Recovery in CFS - Taub (Master's thesis)

    I googled a bit and found this: http://aboutmecfs.org.violet.arvixe.com/Conf/IACFS09Exercise.aspx In this article about the 2009 IACFS/ME conference Cort mentions the studies that couldn't confirm the Pacific Fatigue Lab's findings. And i also found this...
  15. E

    Voluntary Muscle Activation and Exercise Recovery in CFS - Taub (Master's thesis)

    Hm, wait... Doesn't this contradict what the Pacific Fatigue Lab people have reported ? I didn't realize this, when i read the text 10 minutes ago, because i just woke up...
  16. E

    Voluntary Muscle Activation and Exercise Recovery in CFS - Taub (Master's thesis)

    I remeber Tessie Tess said some time ago she wanted to make that kind of testing available in Quebec. Maybe she could find some people to help with that where that paper came from...
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    Voluntary Muscle Activation and Exercise Recovery in CFS - Taub (Master's thesis)

    Thanks. I don't really understand this part When i first read the title, i was scared that it's another paper that said "you're alright, don't worry". Interesting that at baseline the values were similar, so it seems you really need to do the repeat challenge, to see something with that kind of...
  18. E

    VO2max - Where did you do it and what were your results? Useful or not?

    Hi I'm bumping this thread again, so it doesn't get lost. Maybe some people could share their results and experiences re VO2max testing here. Thanks
  19. E

    Cumulative life stress in chronic fatigue syndrome - Nater et al ('11) (CDC research)

    Here's a 1998 White et al. paper that came to the conclusion that: And another one from 2005, where he was an author, that concluded: I don't know a lot about White's work, but it seems to be contradicting at least some of his "friends"' theories.
  20. E

    Cumulative life stress in chronic fatigue syndrome - Nater et al ('11) (CDC research)

    I mean, just as a small example, not that it's very scientific. Yesterday at night, i was feeling quite alright. Because i'm leaving here tomorrow, i went to play billard with some friends. I like to play billard and i also like to hang out with my friends. Today, after waking up, i feel ill and...
  21. E

    Cumulative life stress in chronic fatigue syndrome - Nater et al ('11) (CDC research)

    I think such an association has been reported for other diseases (don't remember if what i read was about cancer) as well. It might exist, but the problem is that some people draw the wrong conclusions about the nature of the disease and about what treatment approaches are appropriate. I usually...
  22. E

    Cumulative life stress in chronic fatigue syndrome - Nater et al ('11) (CDC research)

    They study a group of people of which many probably don't have CFS (the "CFS" that actually means something). Then they find these unwell people are more stressed than others. Then they jump to the conclusion that stress leads to CFS. And if that was not enough yet... they even get paid...
  23. E

    Jonas found guilty

    I have only read a couple of posts on this thread and haven't followed the case as it developped, but i think this is a very good outcome. It's nice to see such an institution do it's work properly and rule in "our" favour. That's the way it should be, we would deserve a lot more from the...
  24. E

    Voices From the Shadows

    I knew the 800'000 came from the Mason Foundation, but maybe i said it in a way that was not really clear. Yes, it can also be dangerous if governments intervene, especially in places that are less open-minded and where there is a strong lobby for the bad approaches. So probably there it would...
  25. E

    Voices From the Shadows

    In Autsralia you seem to be doing quite a good job, though. The group at Bond just got 800'000$ and now Heapsreal wrote that they've applied for another grant of 1.9M$. That's not bad... I think one other thing that could help is to try to make testing that provides objective evidence for our...
  26. E

    Voices From the Shadows

    I would not say the people affected don't matter. I can't believe that. There might be some people who don't care much, but there must be others as well and i would even think that they are the majority. But maybe they don't know enough or are have a wrong impression because they have heard too...
  27. E

    Voices From the Shadows

    Dr. Montoya: "...if this disease receive the attention, the amount of money, that is given to other disease, we will have the solution within a five-year period." This sentence says it all, there's no more we need to know. This is what we have to demand in every country. And if we do it well...
  28. E

    Article: Dr. Nancy Klimas Forms Neuro-Immune Institute on ME/CFS at Nova Southeastern University

    Yes, now that you mention this, i remember that i have heard or read it before. Luckily i can do quite a bit more than only doing the things necessary to live, but that is because i organise everything in such a way that i'm using only the minimal possible energy on these things. I try to use...