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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. George

    NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    I particularly found this paragraph from the NIH press release to be a huge change; what most impressed me was 1- that this entire paragraph seems to be attributed to the CDC but even if it's just a mistake in drafting the definition for CFS just changed a lot. "According to the Centers for...
  2. George

    NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    From the The Atlantic “The effort aims to take advantage of the NIH Clinical Center, <- big we've never had access to that before the largest research hospital in the world, to try to carry out EVERY KIND (emphasis mine) of imaginable analysis of the immune system, neurological system …...
  3. George

    Poll: Which name is better: Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?

    Hello Beautiful! (big grins) I come by and lurk in the undergrowth from time to time. Looking fer bones. (grins) You got some mighty smart folks barkin' round here so I mostly just chew on what's been said. But thank you so much for your wonderful hello! Hello Beautiful! (big grins) I come by...
  4. George

    Poll: Which name is better: Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?

    Hey Folks I'm an oldster from way back but I mostly just lurk these days. (big grins) But of course the IOM thingy has got everybody paws up so I thought I'd swing my tail and offer a thought or two into the mix. First CFS is coded in the US only (780.71) while ME has no code in the US at all...
  5. George

    A neuro-immune model of ME/CFS.

    I wonder what the percentage of "Relapsing/Remitting" patients are in the overall ME/CFS population? Do we have a thread on that somewhere? Or a poll? Because I think it's a very good question. I'm with you other than the odd day that I can manage to do my laundry AND take a bath my illness is...
  6. George

    Alcohol Tolerance Poll

    Cool, another weirdo like me. (big grins) True here as well, less likely to have my daily headache. Very interesting info Sherlock! Nice sleuthing. (big grins) Thank you and yeah, I'ma gonna do a bit of Googling too!
  7. George

    Alcohol Tolerance Poll

    I'm weird but hey whats new! Prior to Viral onset, I had no problems with alcohol. I wasn't a big drinker pre-illness, the occasional margarita night with the girls a couple of times a year. (big grins) Red wine if I was making something Mediterranean but only on a weekend. Baily's and coffee...
  8. George

    A neuro-immune model of ME/CFS.

    Very good points on the subgrouping. Based on the talk at June CFSAC the CDC is, for the first time, going outside of the CDC to define what is CFS. It was reported that the CDC was working with all 5 major ME/CFS groups to see if each doctor maybe working with a different subgroups and if CFS...
  9. George

    A neuro-immune model of ME/CFS.

    Hey ya JT how you doin', you hot doggie you? (big grins) Hiya JeffRez It's good to see that brain of yours here and fired up. (big grins) I think you bring up a very good point here: This is my fault for not being clear earlier and I apologize. So let me clarify and hopefully this helps...
  10. George

    A neuro-immune model of ME/CFS.

    I think the main difference between this hypothesis paper and many of the ones that have come before it is a lack of "bias". I know that Gerwyn has researched every corner of this illness thoroughly. While his bias is or was towards the retroviral model because it fit every symptom beautifully...
  11. George

    A neuro-immune model of ME/CFS.

    (tail wags) I like the fact that those who know Ger, know Ger and those who don't, that's even better.(big grins) The paper is good from a couple of points of view. One it gets out some very new terms such as "Neuroimmune' and PENE (not directly) which are new words that will need to enter...
  12. George

    A neuro-immune model of ME/CFS.

    The paper was Authored by Gerwyn Morris and M. Maes. (grins)
  13. George

    Comment by 'George' in 'Four types of Fatigue May 12th CFS/ME Awareness PENE'

    Hi, Bluestem Very good question. Sorting out and teasing out the type of fatigues that individuals experience is really tricky. There are a lot of fatigue states, way more than what I've written so far. For instance there is the fatigue of not reaching REM sleep. Often the body only reaches REM...
  14. George

    Cleaning up after XMRV

    Great correlation here! I think the research into X/P MLV's is likely to heat up rather than cool down over time. Proving the existence of a new human retrovirus is just to cool to pass up. (big grins) It will be interesting to watch the science. Even if it doesn't help those of us who are ill now.
  15. George

    Comment by 'George' in 'Trust'

    There is going to have to be a gradual socialization of all institutions in order to deal with population and inclusion of population that means science as well as corporations, medical as well banking. That's my theory and I'll probably be dead before it happens. (grins) Nice article Daze.
  16. George

    Cleaning up after XMRV

    It's a good question about the sequences and where they come from. The most definitive answers I've found so far come from the researcher Christine Kozac and her team. One of the first papers Common Inbred Strains of the Laboratory Mouse That Are Susceptible to Infection by Mouse Xenotropic...
  17. George

    need to verify 50% = mild ME before I post this on FB

    Dr. Lerner's scale is here it's not great makes to big a leap between next to dead and able to work. (grins) Anybody know any other ones?
  18. George

    need to verify 50% = mild ME before I post this on FB

    IACFSME primer http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf page 37 This is From Dr. Bell on Pro Health I'll see if I can dig up Lerner's scale it's pretty good as I recall.
  19. George

    need to verify 50% = mild ME before I post this on FB

    It depends on who's scale get's used. I think there are three major ones, Lerner, Lapp ?? and Bell's. Bells stuff is the best and easiest to use when talking to doctors and stuff. I'll see if I can dig up the links.
  20. George

    CBT/GET vs massage therapy

    I would definitely go for the massage. For one thing helping the circulatory system with massage also helps to get things moving in the lymph. With the lack of energy for movement along with O/I problems this would help to bridge the gap of keeping the circulatory system moving important...
  21. George

    Comment by 'George' in 'Four types of Fatigue May 12th CFS/ME Awareness PENE'

    Exactly IX! Most think Chronic Fatigue Syndrome = having fatigue all the time. But that's not it at all. It's having layers of Biological illnesses that each have fatigue as a component. If every biological illness represents 20# of fatigue it adds up really fast! On the other hand if you can...
  22. George

    Comment by 'George' in 'Four types of Fatigue May 12th CFS/ME Awareness POTS'

    Hey guys, between the POTS, the PEM, the occasional PENE (earned, big grins) and a bad flare, I just keep reactivating the EBV, I really needed a long down time. I missed you guys too but just couldn't hang. Separating out the 4 distinct fatigue types really helped me get back on my feet so I...
  23. George

    Four types of Fatigue May 12th CFS/ME Awareness POTS

    POTS The current definition of POTS is as follows. Postural orthostatic tachycardia syndrome (POTS, also postural tachycardia syndrome) is a condition of dysautonomia (Your autonomic nervous system becomes messed up and no longer sends the right signals to the rest of your body) - to...
  24. George

    Four types of Fatigue May 12th CFS/ME Awareness The Flare

    The Flare The Flare is a word borrowed from MS symptomology and really hasn’t been used by ME/CFS doctors so much as GP’s who are confused about an illness that looks so much like MS but isn’t MS. A flare is usually defined as a returning set of symptoms that crops up periodically and...
  25. George

    Four types of Fatigue May 12th CFS/ME Awareness PENE

    PENE What it is: The term PENE didn’t exit prior to it’s début in the ICC ME publication. It is an attempt to create a very unique type of fatigue category and is being put forward as the defining symptom for ME. There are rumors that the IACFSME group is negotiation with the CDC for the...
  26. George

    Four types of Fatigue - May 12th CFS/ME Awareness

    Four types of Fatigue May 12th CFS/ME Awareness With a name like Chronic Fatigue Syndrome you would think that there would be a deep understanding of the different biological underpinnings leading to fatigue in the illness. However, there is very little discussion of the different types of...
  27. George

    Any news on Lipkin study?

    (snicker, snort, grins) Price to high or product too well used? Oh, wait is that a 'made in china' lable across your forehead? (big grins) better send ya back I think you may be painted with lead and cadmium. You still one of my favorite folks, even with a bad paint job. (grins)
  28. George

    Any news on Lipkin study?

    Tail wags back at ya! Seriously loving' that signature! (paws up)
  29. George

    Any news on Lipkin study?

    (Boing, boing) so do I get a biscuit? Do I, huh, huh, do I? (grins) ya just keep the humble 'tude my friend. Hey Sam that may be correct, but the Ursman wasn't bonafide human, but rather tissue? Wasn't it? I e-mailed to ask for the date. Probably right and it's nothin', just old' dead bunny...
  30. George

    Heinrich-Pette Institute Hamburg: XMRV

    Hey daze,(tail wags and paw waves) Do we know when this was published or even worked on? Cause it appears to be new or newish. Also Fisher is the one who found XMRV in respiratory tracks. So the question here is when was this done? Who is the bonafide human who is infected? How did they...