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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. N

    Enough XMRV

    Mods - was my post from 3 am removed? Moderator: Yes - and you received an immediate private message regarding the matter. Please check your inbox by clicking the word "notifications" in the upper right-hand corner of your screen. Further conversation will take place privately.
  2. N

    Enough XMRV

    It was surely worthy of a 2nd look, but now that the XMRV theory of CFS / CFIDS has been shown to be false, we might consider removing the XMRV forums here. I just want to add "I told you so" - my first reaction to the WPI announcement of XMRV in CFS patients was that it was concocted...
  3. N

    Your daily negative XMRV study: XMRV is PCR contamination

    I remain open-but-sceptical o the idea of XMRV being "a human pathogen", and possibly the cause of CFS. Do the authors of the study quoted above have any REASONING to back up the last two sentences? I.E. - "We propose that the patient-derived sites are the result of PCR contamination. This...
  4. N

    Comment by 'Noah_Scape' in 'Setting the record straight'

    My sympathies to Jewish people over this hate filled ranting. Racism can be as simple as labeling all of one type of people as "the same". Clearly, any group has individuals who have different qualities or opinions, and therefore it is wrong to assume they all have the same qualities or...
  5. N

    Jolted Awake

    That just might be it Wayne. I dropped the ball after the tooth extractions, even tho I was aware of cavitation issues. Actually, I just never found a dental surgeon who would even discuss cavitation treatments. {I am in the Kootenay region of BC, Canada in case anyone knows of such a dentist??}...
  6. N

    Jolted Awake

    Wow, this is terrific, thanks for the ideas. Just to clarify - I had all my teeth removed when I had these face pains in 2002, and the face pains stopped then. There is a pain now with these attacks that is right where a molar tooth would be. The face pains are actually small sites of pain...
  7. N

    Jolted Awake

    I don't have many questions, and no insights, but maybe someone has suggestions, or can relate?? I have hardly slept a wink in the past 6 weeks due to "Atypical Face Pains" [like Trigeminal Neuralgia]. Within 20 minutes of falling asleep I am jolted awake by these severe pains on...
  8. N

    Does Naproxen for pain cause fatigue in CFS?

    Excellent!! Thats great news. May you have many restfull nights now...
  9. N

    Nose, Sinuses, Eyes, Throat, Teeth... non-stop suffering, anyone?

    MNC - this is a pretty old thread, I found when doing a search, but it sure sounds like it could be "dental infections". Some camps are very sure about root canals harbouring chronic infections [blood flow does not reach there, so the immune system cannot cure it]. Antibiotics won't help...
  10. N

    Meditate that pain away

    Very interesting, Mr. Cat. It seems to be an intuitive thing to know when to "look right at the pain", and when do disassociate. I just realised that I have never really focused on my gut pains when meditating, maybe because they just stop soon after I get started? Thanks for tweeking me to...
  11. N

    asymmetrical headaches

    Athene - sorry I didn't get back sooner.... NO, I have not been tested for Lyme. I wish I could be.... there is still a "debate" about Lyme here and they don't recognise it or test for it regularly. And, I used to spend a lot of time in the bush... But these "Face Pains" were also there 10...
  12. N

    Does Naproxen for pain cause fatigue in CFS?

    Hi Sasha - I was doing some research for my friend who was prescribed Meloxicam, also an NSAID, and there were quite a few patient testimonies about side effects [often not recognised by the doctors, b t w]. Do you have any LIVER issues? Hepititis, for eg. NSAIDS are a no no for that... but...
  13. N

    Neurological link and Music

    Yes, it is amazing how music can come through all the muddle of neurological problems. I have a nephew who has severe neurological deficits due to the ravages of AIDS; he can barely walk or even feed himself, and yet he is once again playing his Cello, and playing it well, actually doing...
  14. N

    Meditate that pain away

    Thanks Wayne. I also find "slow Yoga" very helpfull for pain and anxiety [to get rid of them, I mean, lol]. Some Yoga styles move quickly but for Fibro pains it helps to stretch them out for at least 3 breath cycles [in + out], and that also relaxes me. Being "in the moment" is easy when...
  15. N

    Electromagnetic pulser to cure CFS - Bob Beck Protocol

    Yes Yes I have been using the Zapper and Pulsar [from SOTA] for several years now, off an on. I use them for a few weeks and then stop for awhile. So far, I am still not "well", as in my Fibro is still active. But that doesn't mean they won't work for someone else.
  16. N

    Meditate that pain away

    Breath Jody is onto something with praying to the pain. Cort mentioned toning down the neural pathways, which is, in my humble opinion, totally related to what Jody is doing. At risk of sounding like a know-it-all, I would add that some meditation practices "anchor the meditation with...
  17. N

    Ozone Therapy

    Speaking of Oxygen, I am contemplating doing at home injections of H2O2 but I am not sure how to proceed. Can it really be injected? It seems like the H2O2 would bubble up in the blood stream, but maybe not if there is no air in there? And what strength? Is the standard 3.5% okay to use...
  18. N

    Meditate that pain away

    I was going to start another thread on Meditation for pain, but here it is! Thanks Cort. I recently developed "Atypical Trigeminal Neuralgia", and the pain is off the charts. The first few attacks I just squirmed and waited for it to end, which took about 3 hours [normal Trigeminal Neuralgia...
  19. N

    asymmetrical headaches

    Very interesting!! I used to get left temple headaches, with a spot on the left side of my neck involved too. Recently, I began to have extreme pains on the left side of my face, from the eye to the ear and down to the upper jaw, and that same spot at the left side of my neck. They called it...
  20. N

    waking up at 1 am with continous adrenalin like surges

    I recently had a whole week of staying awake, and I was alert and active too. Just no sleep. That came after I had a severe reaction to an anti epiliptic drug called Carbamazapine [Tegradol]. Have you started taking something like that? Gabapentin maybe? Does anyone know if this is a...
  21. N

    Article: Proteins on the Brain': A Breakthrough for ME/CFS?

    MS treatment I was wondering about this too, since there was recent media coverage of two Canadians who went to Poland to get the "neck vein treatment" for their MS. They claim to have been helped greatly [too soon to pronounce a cure though]. And it all just make so much sense, from...
  22. N

    XMRV Vip Inconclusive

    Testing I have been suspicious of the XMRV as a cause of CFS/Fibro from the start, and now that 3 or 4 months have passed since the announcement, without confirmation of those results, and with the German findings [not finding XMRV], I am even more convinced that there is nothing to it...
  23. N

    There's no such thing as a virus that causes chronic fatigue syndrome-Natural News

    Vaccine excuse? Thanks for posting that, gg. I had a bad feeling when I first saw how much excitement there was in the Fibro forums - not just this one - about MXRV. Then, when I read the research, that feeling increased: - the small numbers should not have even led to an...
  24. N

    Dr.Light - Sensory Neurons - article

    related I hope so too, because even if XMRV is the CAUSE, what Dr. Light describes could still be true - it could be the RESULT of the damage the virus does. AND, knowing why the muscles become painfull could be even more helpfull in finding treatments.
  25. N

    Dr.Light - Sensory Neurons - article

    I stumbled upon another article/interview about Dr. Light's theory of the "sensory neurons gone wild". It seems that this news has gone cold - any reasons why? Just overshadowed by the excitement about XMRV perhaps? Link...
  26. N

    Details of XMRV Study Available

    Tidbit Trivial: Sadly, at the bottom of the Tyrone Times story about the Study Details, it says "Related: Mental Health". Perhaps that is their attitude at Tyrone Times; makes me wonder if they get CFS yet.
  27. N

    Study: Probiotic breaks down gliadin...

    yup Ya, I am a big believer in the gut and the bacteria there doing good things. That is where all the digestion and absorption happens, and the microflora is allways the key to that... and how we feel, immune stuff, energy, food intolerances. So sure, it looks like you can eat bread...
  28. N

    Major relief - but temporary

    I have had Fibro for 30 of my 50 years, and it just never lets up for long. However, this past spring, at the end of May 2009, I noticed that I was not getting the calf cramps that are usually the first indication of a bad spell. I ride a bicycle "as much as possible", and I use that riding...
  29. N

    Surprise of the IACFS/ME Conference: the Light Study

    The Dr. Light theory makes things a bit clearer - it fits with the idea of "sensory processing PAIN disorder", and now includes the FATIGUE as well. I hope that this theory will provide some kind of easy way to explain this disordered protective system to normal people, or even my doctor. It...