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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. Lelvina

    Is it possible to date with moderately severe CFS/ME? Have a relationship?

    @Hutan Ah, I'm American! Too bad lol. I kept putting relationships on hold, hoping I'd get better. I'm past that stage, and I want to live my life now! Interesting about the eggs.... I assume kids are out of the question at this point. After over a decade with severe CFS, I've let go of that...
  2. Lelvina

    Is it possible to date with moderately severe CFS/ME? Have a relationship?

    I am a mostly-housebound CFS/ME patient. I have never dated - I started getting CFS symptoms when I was 14-17 years old (I became housebound/bedbound at 20/21). I'm now in my 30s, and I'd like to date, maybe have a serious relationship... My CFS/ME is fairly stable, and I'm fuctioning at...
  3. Lelvina

    Keeping insects away without unhealthy chemicals?

    I use essential oils to try & keep insects away. I use a blend from Butterfly Express -- the blend is "Away" -- but it has Citronella (real, not synthetic) in it :( I also like Lavender Essential oil -- I can spray it on, or dilute it & spray. Sometimes I put Lavender, Basil or Geranium...
  4. Lelvina

    This may sound hokey..Rife Machine for CFS

    I have found Rifing quite effective -- but I couldn't handle the dieoff/herx. Sometimes I can feel it doing something. I agree though, go slow. Sometimes, when it worked I got quite a die off. I am going to be trying Rife again, I used it a few years ago. It didn't make a huge difference...
  5. Lelvina

    Comment by 'Lelvina' in 'Stir Crazy'

    "IMO, go for the green hair or nails or whatever makes you feel connected." Yes! And I can relate. I can leave the house sometimes now -- but NOT being able to leave the house, ever, crawling around sometimes, not fun. I missed doing THINGS. I still miss even sitting through a movie. I'm...
  6. Lelvina

    Can we have a pep rally?

    Good stories... I spent a while completely housebound, crawling to the bathroom, etc. As of this past week, I am able to leave the house for 2-4 hours a week, EVERY week :) For me, that's a great story.
  7. Lelvina

    VIP Dx MAJOR ANNOUNCEMENT on Jun 1 !

    This could be very interesting! All I can find: "March 31, 2010 VIP Dx has received 581 specimens for XMRV testing. We continue to see 37% positivity." and "Dec 2009 – Mar 2010 VIP Dx tested a group of 30 patients from the UK for XMRV. Of this group, 33% were positive." I assume that's...
  8. Lelvina

    What's your blood type? // Does blood type matter in CFS/ME

    But does anyone else have family members with the same blood type, with CFS/ME? Could it play a roll family-to-family? Or is it a coincidence (in my family)... that the 2 of us with cfs are the same. The poll results seem to show that we're a fairly normal group of (by blood type...
  9. Lelvina

    What's your blood type? // Does blood type matter in CFS/ME

    I wasn't sure where to put this. The two members of my family with CFS/ME have the same blood type. No one else has our blood type, no one else has CFS/ME. I've wondered if there could be a connection. Has anyone else noticed this in their family? Does anyone else have a family member...
  10. Lelvina

    News this morning - future changes to the Disability Support Pension in AUSTRALIA

    Victoria, when you look at the "New Posts" - the AUSTRALIA part of the title is cut off. I hope Australians will find this thread! "tighten the medical test that determines a person's ability to work." Will this effect ME/CFS patients in Australia?
  11. Lelvina

    Money for CFS research via Pepsi Refresh project

    Ooooh. Those were just my personal idea for the Pepsi Grant, totally not what PR money would be used for I assume. Sorry if I didn't make that clear. Oh ya, totally agree with the last part :/ One of the ideas I looked at (on the Pepsi site) is a group that puts together food for...
  12. Lelvina

    Money for CFS research via Pepsi Refresh project

    Hm. Another question: How many votes does it take to win? Is it even doable? You have to submit (I think, if you win) exactly what you'll do with the money... or something like that. I don't know if 'general WPI' would work. "that's not something I'll be donating to." Eh, it's voting, not...
  13. Lelvina

    Money for CFS research via Pepsi Refresh project

    I am very interested in this Frank! Great find. I want to submit something for the forums! -- We do CFS/ME patient education, patient support/networking, we could easily give small grants for CFS/ME related stuff. As far as I know, there really aren't any organizations that do what we do -...
  14. Lelvina

    Comment by 'Lelvina' in 'Stiff as a Board'

    That sounds awful Carrigon... and the old family friend doesn't help :/ Here's a hug -- you deserve one. I'm sorry you're having to go through this. Shame on the Lawyer!
  15. Lelvina

    Parliamentary group slams NHS and Deptment for Work & Pensions re people with ME/CFS

    Thanks Islandfinn! Those are all the questions I hoped someone would answer! Does this group have power? I don't know. Thanks for posting them all!
  16. Lelvina

    "Central Figure in CDC Vaccine Cover-Up Absconds With $2M"

    "Madsen in cahoots with CDC officials intent on fraudulently cherry picking facts to prove vaccine safety." - -- Wow. Thanks for posting this.
  17. Lelvina

    Parliamentary group slams NHS and Deptment for Work & Pensions re people with ME/CFS

    Thanks Island, very informative. I especially like recommendation #8.
  18. Lelvina

    Dr Enlander: Mar 2010 Summary of XMRV research to date and good-science suggestions

    Is he suggesting that if XMRV fails (or is proven a passanger virus/ only responsible for a small subset) -- that CFS/ME will somehow become a non-physical disease? EDIT: Oh, I didn't see -- he's the one who's patients mostly tested negative. K, I give him a bit of a pass. Good for him for...
  19. Lelvina

    Drill a hole in head?

    Oh man.... This is the one subject I REALLY wish I had not just googled.
  20. Lelvina

    Your voice quality-- do you often get hoarse or are you unable to speak?

    Yes, this happens to me. I notice it more when I try to sing -- some days it's impossible, and my voice will just stop.
  21. Lelvina

    101 Good Reasons : Why it is wrong to provide CBT and GET to ME Patients. Part 1

    Wow. Thank you for (re?)posting this. Just - wow.
  22. Lelvina

    Comment by 'Lelvina' in 'The Life I've Missed'

    Wow Carrigon. I can relate to this. The title reminds me of a song from Kiss Me Kate: Where Is The Life Of Late I Lead? But this is much more moving - and real - than that song. This is quite a moving blog, thank you for posting it.
  23. Lelvina

    Comment by 'Lelvina' in 'I surrender'

    "So I posted this blog (rest your mind) and I have received no comments. " Honestly Gen, personally I usually don't respond to anyone's blog because I often don't feel up to it. I LOVE reading the blogs when (due to brain fog) the rest of the forum doesn't make sense. The blogs are...
  24. Lelvina

    XMRV Study No. 4

    Thank you Cort -- I misread that part and I was _very_ confused by it. Now with your comments it makes more sense.
  25. Lelvina

    Flying and vacation

    I had to fly when I was about a 10-15 (out of 100), right after a very 'depleting' week. I didn't have any specific symptoms flair, at all. I couldn't eat much but I think I was using adrenalin. Other than that, nothing was really too bad. Before that I had left the house maybe... 5 times in...
  26. Lelvina

    Kind of a miracle

    *sputters* If that's true (and I believe it is), the 'Wessely School' is _really_ nuts. Oh, wait. That is what I've learned from lurking here >.> *sigh* This reminds me of someone who had a fever for a week (the heat) and recovered from CFS.... I can't find the link/story right now...
  27. Lelvina

    Meals when cooking is out of the question

    Do you live near any colleges/ Universities? You (or someone on this thread) mentioned Craigslist - college students might be interested in a job cooking once a week. And some of them have online messageboards or noticeboards you could post on. Someone might be interested in cooking in...
  28. Lelvina

    Postexertional Malaise in Women with Chronic Fatigue Syndrome

    Oh, sorry, I totally forgot about that aspect of the disease -- the politics on the other side of the pond :/ I actually get that, too. Not a lot, but it's there.
  29. Lelvina

    Postexertional Malaise in Women with Chronic Fatigue Syndrome

    Thanks for formatting & posting that Kim. The layout made it easier to read than the original! I didn't realize there was any debate about that.