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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. I

    High impact exercise reverses damage to mitochondia?

    Hi all, Firstly, thanks for you thoughtful responses. Second, my apologies for what I now realize is a lack of clarity in my first post. In an effort to avoid being long and rambling, I think I might have unnecessarily raised some alarms. But I do very much appreciate the helpful and entirely...
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    High impact exercise reverses damage to mitochondia?

    I was recently informed that there is new research suggesting that high impact exercise supports repair to mitochondria. This was from a doctor who, though not a CFS specialist, definitely thinks PWCs are sick, and is especially interested in mitochondrial damage as an underlying factor. This is...
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    Zombie Apocalypse? The CDC Describes How To Be Prepared 05/19/11 The Huffington Post

    Excellent use of tax dollars. Good to see that the CDC is taking this widely misunderstood condition seriously. :victory:
  4. I

    Dating/relationship advice?

    Hi HTree, I sent you a PM in response.
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    Traveling with ME-Plane or Car Ride?

    Hi InvertedTree, I've also faced this dilemma, and am still not sure of the best answer (for me). While flying seems faster and easier, you might want to consider the time involved (flight + security/early arrival at the airport + getting to/from the airport). When it adds up, it's not always...
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    Interviewed by local paper for article on CFS/FM

    Thanks for this, Laurel. I thought your quotes were great - informative and relevant. Overall actually, I thought the article was quite good. I could see that Dr. Bateman's comments might have been taken out of context. I read her as saying that there's a big difference between a slight...
  7. I

    Ben Di Pasquale interviewed by local TV

    Great article! Best to Ben and his family, and many thanks to the reporter.
  8. I

    New survey for those with me, fm or mcs

    As far as I can tell, this survey has already been completed. You can read about it, and some of the preliminary results, in the current issue of the ME Association of Ontario (meao) newsletter. It starts on page 6. There's also an interesting article about the PACE trial. - invisible ME
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    fashion for women with M.E

    Did the survey. Love this idea, Serena!!
  10. I

    Chronic fatigue rare but serious in teens

    Thanks for posting this, ixchelkali. That is a highly unfortunate and inaccurate quote about XMRV :( Does anyone know if this study is in keeping with the literature? Or do we only have incidental physician reporting to rely on to date? I personally find this figure HIGHLY improbable...
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    What Are Your Most Amusing (Or Disconcerting) Brain Fog Experiences?

    Oh, some of these are just too awful to be funny! It is reassuring to know how common these experiences are. I don't think the term "brain fog" really does justice to these moments though. I can't imagine someone who hasn't experienced this reality thinking that something called brain fog could...
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    Have you ever had remission from CFS?

    I think Dr. Bell spoke about this in a talk he gave last year (scroll down the page about half-way for the videos). If I remember correctly, he said his previous research that indicated fairly high levels of recovery turned out to be inaccurate. When he revisited those patients he found that...
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    Celiac Disease?! Say it ain't so...

    Thanks, Gamboa. I feel the same way - I'll be very frustrated if I end up testing positive, as I've been ill for 15 years without much help. I'm also in Ontario. My GP told me the test IS covered by OHIP if it's ordered by a specialist (but then there might be a long waiting period). If you...
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    Will the real depression please stand up

    I am starting to really believe that all these chronic diseases, "physical" or "psychological," have some kind of viral/bacterial component or underpinning. In a few years maybe everyone will look back and laugh at the distinctions we make between mental and physical health. Whatever the cause...
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    Celiac Disease?! Say it ain't so...

    Thanks all for responding, and for that great info. You're right, xchocoholic, I have a GREAT doctor - easily the best I've seen. I've only been seeing her for less than a year and she's already been more thorough than most other docs combined, PLUS she got me on disability. So I am...
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    Celiac Disease?! Say it ain't so...

    Hi all, Just had an appointment with my GP, who recommends I get tested for CD. To my knowledge, I haven't been tested, at least not in the last 15 years. Or maybe I have been tested, and I don't even know because the tests came back negative (who knows what these MDs are testing for half the...
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    Amy Marcus and Lenny Jason as guests at White House Chronicles with Llewellyn King

    Thanks, Bob. I will try to watch it again. Maybe I was having browser issues. I would agree that XMRV has been a galvanizing force, for sure. I personally think that has more to do with the science than the patients/advocates. Which isn't to say we haven't stepped things up in response to this...
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    Amy Marcus and Lenny Jason as guests at White House Chronicles with Llewellyn King

    I can't seem to get past the halfway point of this program. Anyone else have this problem?? It just freezes up while ADM is speaking about it being "early days" of ME/CFS patient advocacy/organizing. I was hoping to hear the rest of what she said on that note. While I have the greatest...
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    Will the real depression please stand up

    Absolutely. I couldn't agree more, and your post really resonated with me. I think at heart this problem lies with the ignorance and prejudice of the doctors (ok, some doctors). And truthfully, while they may be happy to write an anti-depressant Rx, many are not that good around depression...
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    Will the real depression please stand up

    Nielk, I also see this as a pressing issue. It's important to me that people dealing with depression feel they can speak openly about those experiences with other PWCs. After all, for many of us, ME/CFS communities are where we feel most understood, and can express our experiences freely. I...
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    Will the real depression please stand up

    Well said, pebble!! :) Actually, great post overall, and thanks for reminding me to read Kubler-Ross.
  22. I

    Will the real depression please stand up

    Hi Neilk, Thank you for starting this thread. I think this is a vitally important topic for many of us with ME/CFS. I have sometimes witnessed comments within our community that border on being dismissive of depression (and other "psychological" illnesses); and in our fervor to insist that...
  23. I

    energy-saving hygiene habits (or lack thereof)

    I absolutely love my loungewear. While I am not always able, I find that it helps me psychologically to "get dressed" each day. So I have my PJs (flannel bottoms, nightshirts, etc) and my loungewear. I am slowly building a collection of lounge-y stuff that is comfy, stretchy and good for...
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    April 7/8 NIH State of Knowledge Conference - watch online to show our support!

    Wonko, I'm using VLC as well, and having the same problem. Not sure how to change the buffer size. Could you help me out with that? Thanks!
  25. I

    Solutions to loneliness and isolation.

    Hi all, I watched the film (Us Now) that pebble recommended. In the interests of furthering this important discussion, I thought I'd take a stab at providing some cliff notes. Obviously, as pebble notes we won't all be able to watch it, but may be interested in the general topic. The film...
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    Article: 2010 ME/CFS Research Overview Pt II: The Exercise Studies...Validation and Progress

    Thanks for this summary, Cort! I know there is still a long way to go, but for me, reading this took some of the sting out of the terrible, horrible, no good, very bad PACE results. These new studies are absolutely critical for (eventual) doctor education.
  27. I

    Requested Assistance from ACTUP

    thank you for doing that, muffin et al. for so many reasons, we desperately need the expertise and experience of activists like those in ACT UP. they've been doing their thing for a long time now, and with great success... not that it came easily. although i think there are significant...
  28. I

    new empowher article: Chronic Fatigue Syndrome: 10 Ways We Use the Internet

    Jody, It is curious the direction that was taken in that article. And you're right that the actual story about the court case - which got a bit lost - is potentially very important in terms of precedent. Hopefully, not just for people in Canada. You never know when you agree to participate in...
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    new empowher article: Chronic Fatigue Syndrome: 10 Ways We Use the Internet

    Thanks, Jody. I loved it! p.s. A friend dropped by yesterday with a copy of your G&M article that she'd seen (thinking I might not have known about it). Thanks for all you're doing.
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    neurological syndroms

    Just wanted to echo IVI's advice, though I know it can be very difficult to get to doctor's appointments, etc when dealing with such poor health. Are there any family/friends that you could rally to help with this? It's fairly common to chalk all new and worsening symptoms up to ME, but there's...