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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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Search results

  1. A

    Two Free Tickets to The IACFSME Patient Day

    Deborah, I know of someone in the conference area who would really appreciate a ticket, and have sent you her contact email (she is in the process of joining the PR forum and can't respond to you directly yet). Very nice of you and your family!
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    air hunger/shortness of breath

    I'm not sure how to distinguish air hunger from a breathing issue from symptoms that could come on with lower levels of oxygen. Interestingly, after I read about symptoms of supraventricular tachycardia, called SVT, and using the Valsalva maneuver to stop it, I tried Valsalva when I had some...
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    Notice of Intent for NIH initiatives re data coordination and research collaboration centers

    Does this announcement help clear the path for some discussion by Vicky Whittemore next week at the IACFSME conference? I expect there has been an effort to get something out ahead of that to help foster further awareness there.
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    How can I rehabilitate my legs after being bedridden?

    When I noted my leg strength deteriorating, I got out some light weight bands, just a pound or two, and later three pounds, and slipped them over my feet while reclined. I'd do a few lifts, never pushing it too much. It took a while but it helped incrementally. As others noted dealing with...
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    NIH intramural research program update

    What's the protocol for data disclosure with this type of study? Does the high number of tests relative to the small number of subjects suggest they may not be able to share enough data without concern of identification? Perhaps this is common knowledge, but it hasn't reached me. I'd like...
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    NIH post-infectious CFS study

    I think they'll do some interesting tests on the group they select. I don't know how well that group will represent long term or more serious illness, but I do not assume bad intent. They may not have a good appreciation of the limits of this cohort, and be tempted to overgeneralize. The...
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    NIH post-infectious CFS study

    Well said, Valentijn. Really concerning control issues.
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    NIH post-infectious CFS study

    It looks to me like they picked treated asymptomatic Lyme and FMD so they could get a "three-fer". They get to count this study against 3 under-studied groups, and count the whole study cost against each. Fine, if it otherwise makes sense. But it looks to me like sub-optimal for ME /CFS...
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    New NIH article touting benefits of CBT and GET

    I believe the Health Day article appeared on the last day for appeal by PACE investigators of the decision requiring them to disclose certain data (I haven't heard of an appeal so far). "Coincidence"? Pique? The authors have an "uncanny" knack for having their papers appear at very...
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    Vitamin D ineffective for vascular health and fatigue in CFS

    Thanks, I know that there is some discussion about optimal levels and different viewpoints. I managed to get my Vit D up to 50 very slowly. Last time I discussed increasing my D with my doctor, she expressed concern about not getting them too high, which sort of surprised me. She seemed ok...
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    Vitamin D ineffective for vascular health and fatigue in CFS

    I'm confused about the group, too, reading only the abstract. It says the 50 randomised participants had mean baseline vitamin D of 46 nmol/L, which increased by 22 nmol/L at 6 months "relative to placebo," which seems an odd way of putting it. My understanding is 46 is within normal limits...
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    Should i force myself to exercise?

    The suggestions to start lower to figure out your limits are probably good. One thought, though, on type of exercise. Many of us have issues with orthostatic intolerance, where being upright causes issues. I think some doctors have suggested that exercises that don't "vertically challenge"...
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    Announcing a survey for meeting with CDC

    Some things I would NOT want the CDC CFS program to do - for now While the issues are all important (though I might phrase some of them differently), I would suggest a more limited agenda, given that this is the CDC and not the U.S. Department of Health or NIH we're talking about. The...
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    Week 12 of Valcyte

    undcvr, Thanks for sharing this info. I was not familiar with protocol for using Valcyte in CMV. It sounds like so far your doctor is comfortable trying this out within the CMV label limits - a good start, and I hope not a limit. I haven't had PCR tests for EBV, and as far as I can tell...
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    Week 12 of Valcyte

    Jasper, Thank you for sharing your experience. I'm very glad that Valcyte has been good for you, and that you've had a respite. But, I understand your concerns about dose / cost / toxicity / length of treatment. Can you clarify dosage and length of treatment as they relate to symptoms and...
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    Catch-22, by Mindy Kitei

    From Mindy's article: "You know the body-sniffing dogs that search for survivors in the rubble after buildings collapse? You know how the dogs handlers hide healthy people in the rubble to prevent the dogs from becoming too discouraged when the dead-body count starts piling up like so many...
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    Medco stopped my valcyte and valtrex: Anyone else??

    Thanks for keeping us posted. This is important for us to know. Quite a lot of the business of pharmacies is for "off label" uses. It's a slippery slope when they start denying common drugs for some off label uses, but not others. One question or idea: have you tried filling the...
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    Medco stopped my valcyte and valtrex: Anyone else??

    I know of another CFS patient who ran into problems with Medco, getting her long term prescription filled (I think it was Valtrex, definitely was an antiviral) - I think it was last year or may have been the year before. I was concerned because I also had Medco as part of my insurance then and...
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    Burning sensations in eyes

    I would echo to try (if you haven't already) quality non-preserved artificial tears. There are several brands, for mild to very severe dry eyes, and some are more "emollient" than others. Visine and similar antihistamines may even be counteproductive, I think. Please, I hope you will...
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    BWG Phase Two Results - Webinar

    How "pedigreed" can a negative control person be? Working through the slides, I'm still a bit puzzled by the labelling of "false positives" occurring on the "pedigreed negative" in Phase 2b. , and by the whole concept of a "pedigreed negative" person. Does anyone know exactly how the...
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    BWG Phase Two Results - Webinar

    "Pedigreed Positives" - Persons vs Blood Samples - Virus in and out of blood One question I had from my (interrupted) listening to the webinar seems to be answered by earlier posts. That is, that the "pedigreed positives" were persons whose blood samples at one point were confirmed as...
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    The Non CFS 'CFS-ers'

    Low NK cell function Sick of CFS, I think low NK cell function is one of the most consistent results in CFS, and corroborates a diagnosis. I think one problem may be that while for many patients, the levels will be low enough to stand out as definitely abnormal, for other patients (or the...
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    Blood Products Advisory Committee Meeting Announcement (BPAC) December 14-15, 2010

    Note re Bell "recovered" patients - Maureen Hanson I don't know if someone already addressed this - but I think the "recovered" patients of Dr Bell that are being studied by Hanson may have been discussed in an article this summer by Bell and Bell. (viral results appear about the same in...
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    Public libraries and ME/CFS

    Another good book - for libraries, patients, even doctors This is a great idea, Hope. I doubt if I get around to anything for the next month or so, but maybe following up in February or March would give enough lead time for ME / CFS day. This list is also a great resource for gift ideas...
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    Diabetes' Civil War - Type 1 vs Type 2 - Interesting parallels to ME/CFS Perceptions

    Interesting article online from Chicago Tribune about tensions between those with Type 1 and Type 2 diabetes, how they're both tired of misunderstanding, and concerns that the greater prevalence and focus on Type 2 may detract from research into Type 1 / diabetes mellitus, the autoimmune...
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    From the 1st annual XMRV conference

    Not enough blood? I think that a number of researchers have issues with not having enough blood to share or to do all the testing they'd like. Alter's group, for example, said they didn't have enough blood to share with CDC for CDC to do their tests. (This was from samples stored by Lo...
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    Pacific Fatigue Lab disability testing

    This is a very interesting area of testing, and your report of what it's like to actually do it (and the associated travel and planning - which is something we all have to deal with more than we'd like) is really useful. I have also read that more research studies are incorporating an...
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    Valcyte (plus) Update

    Sickof, Maybe you'll have to change your moniker if this keeps going up - wouldn't that be great! ;-) That is great and encouraging news. Robotics class - sounds like fun! I didn't know you had a background in that kind of thing. I don't know if you've posted already elsewhere about...
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    where can you buy a comfy sleep mask?

    Pillowcases very handy I love the idea of pillowcases - though if you're rolling around in your sleep, I think a fastened sleep mask might work better. I'll have to remember that one. I keep old pillowcases near my hot and cold packs, and stick the hot or cold pack in one before I use...