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Are You A CFIDS faker and poseur?

floydguy

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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.
+1

Well said
 

Dainty

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I have told someone once that they did not have CFS.

Now before everyone jumps on me, allow me to explain that my opinion was expressly solicited, and the sole symptom I was informed of was swollen lymph nodes without explanation.

I confirmed that there were no other symptoms, expressed my sincere condolances and empathized with the hunt for an explanation, but kindly informed her that her symptoms do not match the criteria for CFS.

I believe it would have been unkind for me to do otherwise. The answer was understandably disappointing for her because she was looking for hte explanation to her condition, but I would have done her a disservice to "lead her on" so to speak by pretending it could still be CFS.

My approach is to generally assume that those who say they have CFS have CFS. I can't imagine anyone wanting a disease of this name so in my mind that rules out any attention-getters, and while I'm certain there are some who are misdiagnosed, frankly that just isn't my job to discern.

On the other hand, there's no issue iwth recommending people get tested for other things. You aren't necessarily suggesting they have that issue instead of CFS, as many have found it is common to find other issues piling on so to speak. BUt if htat person gets something checked out, finds that it's a problem, and then discovers the solution fixes all their symptoms then YAY for them! Seriously, in my book CFS is something you want to wake up one morning and discover it was a misdiagnosis, and if someone has that experience then I want to congratulate them. We should be the last to fault one of our own if it turns out they had something else. Get in the chatroom and throw them a party! :D

For those who have achieved remarkable recovery, personally I don't really care of you do or don't have CFS, I'm just plain happy for you. But recognize that for those fighting to get well with limited external and internal resources, if you present a treatment then your symptoms and possibly even your diagnosis will be scrutinized, and unfortunately that has to come with the territory IMO. See, we're forced to partially or in some cases completely fill the role of physician for ourselves. And as such when we're evaluating a treatment based on anecdotal evidence it is imperative that we study the patient history in order to make a proper decision on whether or not it's worth attempting, instead of the dozen+ other things we were going to try next.

I understand that on this site you are not allowed to question anyone's diagnosis, and I believe that's a good rule. I also believe that it's great that it's okay to ask people about their symptoms and history without their automatic defense switching on. Lets keep things that way, shall we?
 

mojoey

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Hey Jen,

I'm particularly curious how PWCs that have PEM did with hyperbaric. Ozone didn't help me at all. As I recall discussing with you, I picked ozone mainly because of the cost differential and the extra singlet oxygen which seemed to have more anti-pathogenic activity. It probably also increased my oxidative stress, as Ross mentioned, even more than HBOT would have.

It has been discussed ad nauseum that many CFS patients do not do well with treatments that healthy people or people with other chronic illnesses do well with. The combination of high oxidative stress, liver enzyme decoupling, and methylation blocks may be part of the reason why. I agree with Carrigon on different strokes for different folks, but there are CFS patients that have done HBOT and can comment on their experiences right? It's not like the treatments that you've done are really out there. Many CFS patients have tried direct glutathione..some have benefited, many have gotten worse--even ones that benefited initially.

I for one have always appreciated you sharing your experiences and still do, regardless of your official diagnosis. As Cheney and LLMDs are findings: there may be the most overlap between mold illness, lyme disease, and XMRV. You apparently have two of those, so it would not surprise me if you end up being positive for some gammaretrovirus. At the same time, I don't believe it's due to your official diagnosis that people are not taking to those treatments but rather because of the quality of PWCs' experiences with those treatments and their cost that deter further exploration.
 

dannybex

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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
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.
 
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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.
hi, does this kill off good bacteria as well as bad? I'm using supplemental oxygen at home and am trying not to have candida come back. Thanks for your info.
 

lancelot

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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.
 

dannybex

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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.

And there are 10-20 times as many 'healthy' XMRV+ people out there than XMRV+ who are sick with CFS/ME. As Judy said in this latest interview, it's a retrovirus of 'unknown pathenogenic potential, which means you don't have to get sick, but you might'.
 
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Hi Joey. That's a good question and I don't know the answer. Maybe Jamie would? She treated many folks in her big chamber. However I would wager that portable chambers, which only go to 4.0 psi, would be unlikely to be trouble. Don't know, though.

Ozone really shares little with hbot as a therapy, and little with 02 breathed at ambient room pressure. Pressure has it's own salutary effects on the CNS (why were babies swaddled? Why do people feel better below sea level in the dead sea?). Oxygen under pressure is forced into the plasma and tissues.

I would not think regular 02 would raise Candida. It's mostly in the gut and high pressure chambers can do so by eliminating lots of gut anaerobes so the fungi have less competition.
 

lancelot

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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.
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Yes that is possible but highly unlikely for someone to suffer from both celiac disease and CFS. How about CFS and AIDS, CFS and Cancer, CFS and diabetes? That would be such a rarity so don't make it even more complicated then it already is. treat each diseases separately not together as one super CFS-Celiac disease. Like i said, the celiacs i met at prohealth did not have CFS but were misdiagnosed and dumped into the empirical CFS wastbasket. They could have easily figured out that they didn't have CFS/ME if they just bothered to read the CCC or listen to PWC complaining of PEM/DPEM, mental exhaustion, or unrefreshing sleep that they didn't have but had 24/7 stomach cramps!

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.
 

dannybex

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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. Sorry...we should stay on topic.

That's very interesting regarding polio -- I didn't know that. I guess that reinforces the need to look at or try to address other potential pieces of the puzzle, like the so-called "terrain", possible environmental toxins/exposures, as mentioned earlier throughout this thread. Still, only 2%. That's an eye-opener.

Anyway, IHMO, JenBooks is in no way a faker or poseur. The persons or people who attacked her as such need to find a new hobby.
 

lancelot

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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.

.
I believe Elaine did not find XMRV, but she found a variant of the MLV-related retrovirus similar to the Lo/Alter ones.

I don't even know who JenBooks is or that she was attacked in this thread.