Discussion in 'General ME/CFS Discussion' started by Elph68, Nov 30, 2013.
I think the Dubbo studies self select for a younger group. I think that in younger people HHV4 is a possible trigger, and possibly causal. Its the other herpes viruses that tend to be candidates in older groups, while the importance of HHV4 disappears as a trigger. So for most adults HHV4 is an unlikely trigger ... but there are plenty of other herpes viruses.
Its the rare herpes viruses that are more likely to be triggers in older groups. Does anyone recall the average age of the EBV patients in the Dubbo study? If it were an older group this would discredit my reasoning. If its a younger group, it supports my reasoning.
So far in this discussion we are ignoring mold toxins. They are coming from somewhere. An occult mold infection is also possible.
Why would that matter? It's normal to have strep in the gut.
It's not impossible for HHV-6 or EBV to be the initial triggers, sure, but if these are triggers, they are very rare ones.
If HHV-6 were a main triggering virus of ME/CFS, then we would see most cases of ME/CFS appearing in babies of the ago 0 to 3 years old, since that is the period were the vast majority of people pick up HHV-6.
Likewise, if EBV were a main triggering virus of ME/CFS, then we would see most cases of ME/CFS appearing in the teenage years, when most people pick up EBV (usually from kissing one of their teenage girlfriends or boyfriends).
Though EBV is a special case. It is known that some people develop chronic infections when they first catch EBV, and the symptoms of those chronic EBV infections can be pretty much identical to ME/CFS, even though these EBV infection do often clear up after a year or so. (In fact, I often suspect that people who say that they were cured of their ME/CFS after just a few years probably only had EBV-driven ME/CFS symptoms in the first place, which as stated, tend to clear up anyway).
Another issue is this: in spite of the fact that you often hear people say "ME/CFS is a condition of unknown etiology," this is not really correct, because we know that ME/CFS can be caused by parvovirus B19, Chlamydia pneumoniae, Coxiella burnetii, and Giardia lamblia. So in these cases, ME/CFS is in fact a condition of known etiology — and most of these cases of ME/CFS are pretty treatable too (except Giardia lamblia etiologies, I think).
My guess would be that most of the unknown cases of ME/CFS will in fact turn out to be caused by enterovirus, which being a "stealth virus" — enterovirus hides away inside cells in its non-cytopathic form — would explain why in these unknown cases of ME/CFS, it is hard to find any evidence of infection (apart from a few herpes family virus reactivations). Once we have better and easier ways of detecting this non-cytopathic stealth form of enterovirus through lab blood tests, then I think this may revolutionize the field of ME/CFS.
The very fact that in these unknown cases of ME/CFS, it is hard to find any evidence of infection, makes enterovirus a strong candidate for the cause of these unknown cases: because enterovirus is the only virus I am aware of that has this non-cytopathic "stealth virus" form that hides away from detection. It is often observed that ME/CFS is triggered by some respiratory virus, but then regular blood tests cannot find any evidence of an active infection with the virus. This fact really points the finger at enterovirus — a respiratory virus which in chronic infections cannot be easily detected by normal lab blood tests.
It would great in future if we would create some wearable digital device that would somehow record the appearance in our blood or saliva of every new antibody response, and log these antibody responses in a file. Then every human being would have a complete record of every new pathogen that hit them throughout their lives. It would then be much easier to work out the cause and effect relationship between catching a pathogen and the subsequent appearance of a disease.
With such a technology, each of us would know the identity of the respiratory pathogen that triggered our ME/CFS.
If only there were some way to use say visible or infrared light to detect antibodies. Then you could wear say a wristwatch that would shine a light into your skin say every hour, and detect any newly-appearing antibodies, and record these in a memory chip within the watch. That would be a great advance.
Dr Chia is doing the next best thing to this: he published a longitudinal study looking at people who were hospitalized for enterovirus infection, and observing how many of these enterovirus infectees went on to develop ME/CFS soon after. He found that 3 of these infectees went on to develop ME/CFS (out of how many infectees in total, I am not sure).
What evidence is there that these pathogens you are interested in can cause the symptom that are found in ME/CFS?
Dr De Meirleir found that Enterococcus and Streptococcus are more numerous in the guts of his ME/CFS patients, but that is about the only link to ME/CFS I can find.
I am glad you asked, and I will be getting to this as my story progresses .....
The whole direction I am heading here is to show the idea of pathogenic normal flora needs to be considered. It may be in fact a subgroup as has been previously suggested, BUT until our researchers come out and say this is definitely not the case, I will continue to collect scientific evidence and I will continuously present this to whom ever will listen.
So please challenge me, and tell me what you all know, so I can see if it fits in with what I have researched over the past 3 years ....
When this first started with me I said to the infectious disease specialist, all my mucous membranes are under attack it seems like I am allergic to something in my normal flora .... He replied 'I know of no such syndrome'.
I shall call it a communicable transfer ...
Gene transfer is a part of what I have found and the antibiotic mechanism is a big part of it also.
The reduced pathogenicity as you describe over time supports where I am coming from and also supports the claim of spontaneous recovery or reduced symptoms over time in some cases.
Sjogrens syndrome Is a condition that affects mucous membranes. Have u had this or other autoimmune conditions ruled out??
Most normal gut bacteria, skin bacteria etc. are pathogenic in the right circumstances. Golden staph is normal for the skin, but very bad in the lungs, and so on. The issue though is demonstrating pathogenicity, or demonstrating in a double blind RCT that treatment works. Its a long way to go from here to there. The bar for evidence is getting higher, and will continue to rise. Despite this many bogus studies still get through, and this is part of the driving force for increasing the evidence requirements.
However this has the simultaneous effect of suppressing new research I suspect. This is because funding may become tighter early in the research, creating a bottleneck. I have a suspicion that new pilot projects are going to require crowd sourcing in the future, as most traditional sources of funding will probably diminish.
@Hip i wonder if we cfs/me people are all just a group of people with different infections or maybe a combo of different infections. I think just going by symptoms its very hard to diagnose a disease unless its very obvious like say chickenpox etc. But then when i think about how nk function is low in a very high majority of cfs/me people and not other groups of people, then the idea of us all just having individual infections with individual diseases sort of falls apart, as to me it then looks like its the immune dysfunction is the cause of these different infections.
Enteroviruses put a spanner in the works, its so dam hard to get accurate testing and it seems that a biopsy is the most accurate way to diagnose it. like u say this could be whats causing the immune dysfunction. Then we start adding in retroviruses to confuse that matter more. Just thinking about it is making my head hurt. Also makes me realise how much medicine doesnt really know and how poor testing really is.
At the end of the day we have to wait until all the research is out??
those symptoms don't fit ..... and anything labelled syndrome = We don't know what the hell it is but if we give it a fancy name .... people will be impressed!!!!
Hey heapsreal ..... the problem with waiting is we are just going to die .... Keep the buggers honest, challenge and keep pushing ..... This nk function has got my interest now .... is that always the case or does it show up after a certain period of time ?? The nk function could just be worn out because of fighting too big a battle for too long ....
I hear ya about waiting. Theres alot of people before me who have pushed and pushed for more research and advocacy. cfs/me is very political and tied up with psychiatrists. if u can read 'Oslers web' this will give you a run down on the history and explain what we are up against, although things are slowly shifting for us.
Im not sure if nk function is a burn out thing or not. most people dont get diagnosed with cfs until several years have passed, so i dont know if nk dysfunction is a progressive thing as people dont get tested in the early stages of cfs cause they dont know if they even have cfs?? Like i have mentioned its a horse or the cart or maybe the initial infection as 'broken' the immune system some how, which seems to happen in auto immune illnesses.
heres the study i was in http://www.translational-medicine.com/content/pdf/1479-5876-9-81.pdf
I think it was Hip that put this together, you might be interested in and maybe your gut theories could be added.
I think you will find the more your hear from others with cfs, you will see that sub grouping is probably needed at this stage??
Do you think that the low natural killer cell function might simply be a consequence of the low beta-endorphin levels found in ME/CFS patients? 1, 2
Endorphins activate NK cells 1 2, so since we know endorphin levels are low in ME/CFS, this might completely explain the low NK cell function in ME/CFS.
Note that D-phenylalanine, germanium sesquioxide and Garum Armoricum boost endorphins. Acupuncture also boosts endorphins.
I dont know? Not big Increases in nk function occurring with ldn which is suppose to increase endorphins. Nk function might be more a consequences of cfs as it hasnt been shown that increasing nk function reverse cfs. Not saying it does or doesnt but I think its still worth trying to increase nk function as nk defend us against viruses and cancer .
I did get some benefits from taking germanium sesquioxide 100 mg daily, so I'd recommend germanium. It is one of the supplements known to help ME/CFS.
I'd often take germanium sesquioxide transdermally (I would rub the power from the capsule into my skin), as germanium has low oral bioavailability (<10%), and the transdermal route I found seems to increase its effectiveness.
@Hip is germanium the main ingredient that was in a bodybuilding supp that was a popular stimulant that was band in a few country's. Cant remember the name. It seems like it was band for political reason not health reason. Maybe cause it was a supp that actually worked. I'll try and find the name?
Jack3d contains dmaa which Is in germanium. Interesting to try??
You can also try a Google Site Search
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