Welcome to Phoenix Rising!
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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for research purposes and for physicians, it's super important to differentiate ME/CFS from other similar problems. For now, CCC is the best tool we have for this purpose. NK cells and such are coming soon...
for the purposes of a forum like this, we should realize that there are a lot of people with similar problems who are also not getting medical attention and treatment. Whether or not we all have the same disease, we all deserve to be here.
Not all treatments will work for everyone, and we all should understand that. On the other hand, overlapping conditions may possibly have overlapping pathologies and there's always a chance that something useful for one overlapping condition will also be useful for another. With the advice of one's own physician, of course.
I disagree. No other disease(s) can fullfill the symptoms checklist 1-6 in COMBINATION as outlined by the CCC except for one disease, ME/CFS. throw in some specific labs like Rnase-L, multiple infections, AND low NK activity OR XMRV/MLV+ and your diagnoses for ME/CFS is ~99% correct.
As an example of the celiacs i've met at prohealth, celiacs don't have PEM or DPEM, unrefreshing sleep nor the mental fatigue equivalent to their physical fatigue. Celiacs will never come close to fullfilling the CCC of ME/CFS but could easily fullfull the CDC's 2005 empirical reeves CFS definition.
CCC describes ONE specific disease called ME/CFS
CDC's 2005 empirical definition describes hundreds of non specific diseases both physical and mental
Hi Cloud. Re: fatigue, it's not fatigue. It's more like the cell is poisoned and the mitochondria dialed down and not operating very well.
Re: hbot, yes it does increase oxidative stress, but so does hypoxia, and in a much more dangerous way. Generally in these conditions (lyme/ME/CFS call it what you will) there is tissue hypoxia, too much inflammation, too much free radical damage, too much tissue hypoxia. So hbot can be very healing. However there is always too much of a good thing. For instance, it can mightily suppress anaerobic bacteria for the time being--and you can get a flareup of candida without competiton to keep it in check (candida is suppressed at something like 4 ata and above--way too high for a session).
I would suggest trying it, but there's no reason to start aggressively. The 2.4 ata twice a day for 60 minutes is very aggressive. I would never do twice a day, as you also raise the partial pressure twice a day.
You could start with one hour three times a week for instance, at 1.5 ata and see how you do.
Or try a mild chamber--they're very helpful and very tolerable.
Perhaps we're misunderstanding each other (my brain isn't working well lately). My point I guess was that if someone who was just diagnosed with celiac for example (most docs won't run the other tests we should all have), and was treated -- or removed all forms of gluten -- yet still had ME/CFS symptoms (that fit the CCC), then that patient would still have ME/CFS.
But, if they went completely gluten-free and got well, then yeah, they were misdiagnosed.
A celiac could never qualify the CCC for ME/CFS. other diseases should not use a CFS diagnosis as a dumpster like reeves has done with the 2005 empirical CFS definition. This can only hurt those who truly have CFS because there is no way to research true PWC as seen with the CDC's empirical patient selection for XMRV- study and WPI-NIH CCC/fukuda patient selections for their XMRV+ studies. You've got a soup of hundreds of different patients and different diagnosis so how do you study each disease when all the patients are categorized into one giant group? NO! the US definition of CFS must be changed and those that are misdiagnosed should be encouraged to find alternate diagnosis instead of holding onto CFS and lounging in these CFS patient forums.
The faulty and unspecific 2005 emperical CFS definition welcomes all diseases but which helps no one.
Well, you're still not hearing what I said. Someone can have CCC-CFS and also have gluten intolerance/celiac, and thus remain sick after going gluten free.
Did you know the polio virus which infected milliions only caused disease or death in about 2% of the infected? What about the other 98% asymptomatic polio infections. And mononucleosis infects over 90% of adults yet only shows temporary disease in less than 10%. So yeah, i can believe not all XMRV+ will show disease depending on one's unique immune system. even some rare and very lucky people with unique immune systems can escape AIDS although being HIV+ without meds.
It will certainly be interesting to see how XMRV plays out over the next year or so, I don't mean to downplay the discovery at all. It is frustrating however that no one, including the WPI, has bothered to re-investigate Elaine Defrietas' retroviral work, which apparently is a different retrovirus.