> Carol, Ken, Dave, and all,
> John Martin at USC found a retrovirus in thousands of samples of CFS
> patients' blood ( mine included), it was called a spuma or foamy virus.
Isnt that the one that later got decided to be the chopped up
cytomegalovirus and his stealth virus? He's still working on that. He
submitted a poster to the International Herpesvirus Workshop last year on
the thing....unfortunately for whatever reason he didnt get down to
Australia to bring the poster so I didnt get the chance to talk to him but
Ive got the abstract for it that was prepublished somewhere.
> Now, they are testing for HHV 6 strain A by PCR testing and also HHV 7
> also by PCR testing in two Universities here, and also at a couple of
Hmm hopefully by reverse transcriptase PCR not normal PCR.
> So, I think there is a TON of research showing we have viral infections
> and that's why such anti-virals such as Kutapressin (pig's liver
Yes, there is the whole Borna virus research line. The problem with so
much of this work (well the stumbling block) is they are often chronic
infections so you cannot tell if its causative or reactive. Borna steps
outside of this, but all the herpesvirus work lands square in it. It would
be great to be able to spot CFS early and go into those populations and
see the changes - they tried this using an animal model with the Borna
work (cats get Borna and get a weird condition that seems to have some
parallels to CFS). THe other issue is that as yet noone has idenfitied the
downstream bit where the effects the viruses have converge into a common
pathway....if that cant happen then it needs subgroups to be defined - if
it does happen then 'Wahay' - big sea change in the field.
(Side note - looking for these viruses or indeed ANY other pathogen that
is higher prevalence in CFS patients is going to be useful even if it
doesnt turn out to be part ofthe cause - often its the opportunists that
can make you feel crappy and treating them may be able to relieve the
symptoms in individuals even if not the root cause).
> OK, more than enough on that subject. But if anyone doesn't think we
> have viruses...I'd like to point out the work done and my own results.
> Also, if it's not a virus (or viruses), why are there outbreak areas
> like the one I got my lovely disease in? Mine was in the Yerington,
Clusters dont necessarily mean infectious transmission unfortunately.
Common exposure to something, possible genetics in area with relatively
stable gene pools (would help the RNase-L idea a lot), toxic issues rather
than infectious all fit the bill as well as infection. The area gets very
very murky - thats why its SO difficult to get a handle on it and remains
at the 'this is possible' levl rather than 'this is it'
When playing rugby, its not the winning that counts, but the taking apart
The problem is that no single virus has been identified in all CFS
patients. The herpes virus family are known to reactivate when the
immune system is weakened, as it is in the case of CFS. It is possible
that the viruses seen in CFS patients are simply a symptom of the
immune system abnormalities seen in CFS rather than the cause.
Many other, more likely causes of CFS have been identified, such as
a suppressed HPA axis, which could cause the weakened immune system
as well as all of the other symptoms of CFS. Trying desperately to
find a viral cause of CFS could be a waste of time. I'm not saying that
research into this are should stop, only that there should be a balanced
> Clusters dont necessarily mean infectious transmission unfortunately.
> Common exposure to something, possible genetics in area with relatively
> stable gene pools (would help the RNase-L idea a lot), toxic issues rather
> than infectious all fit the bill as well as infection. The area gets very
> very murky - thats why its SO difficult to get a handle on it and remains
> at the 'this is possible' levl rather than 'this is it'
Also, statistically there will be clusters of any type of disease
in certain areas simply by chance. There are many scare stories about
cancer clusters among people living near power lines, mobile phone masts,
> Tim Fitzmaurice wrote:
> > (Side note - looking for these viruses or indeed ANY other pathogen that
> > is higher prevalence in CFS patients is going to be useful even if it
> > doesnt turn out to be part ofthe cause - often its the opportunists that
> > can make you feel crappy and treating them may be able to relieve the
> > symptoms in individuals even if not the root cause).
> The problem is that no single virus has been identified in all CFS
Or rather, active in enough.....yes. Thats where I was going by saying
they had not been able to run the viruses down to a common pathway of
> immune system is weakened, as it is in the case of CFS. It is possible
> that the viruses seen in CFS patients are simply a symptom of the
> immune system abnormalities seen in CFS rather than the cause.
That really was my first point - that they are an effect not a cause. Its
the SINGLE biggest problem in linking a herpesvirus to ANY disease that
isnt the primary infection (and sometimes its a problem there).
Lets drop this into perspective using the herpesviruses as an example
There are 8 human herpesviruses
Herpes Simplex 1 - causes skin and mucous membrane lesions called (and
classically associated with) cold sores if they are near the mouth or
genital herpes if they are - that infects between 50 and 70% of the
population of most countries (variance depend on the demographic you
Herpes Simplex 2 - causes skin lesions as well, the cause of most genital
herpes and rarely seen outside of that site. Infects about 21% of the
USA's population, around 16-18% of European countries.
For both these viruses people who get any form of disease runs around
10-20% of those infected. These two or one or other of them have been
linked at various times and to varying degrees to fatal encephalitis,
Mollaret's meningitis, Bells Palsy and neuralgia. ITs a nightmare to get a
solid link to such rare follow ons in the background of limited
percentages who get disease anyway compared to those infected. Like any
herpesvirus - once infected the virus is there for good.
Lets hop a bit further along...also in the family are
Varicella Zoster Virus - chickenpox when you first get it, shingles when
it reactivates later in life. Historically there are weak links with
tirgeminal neuralgia and a nasty follow on condition has been identified
called post herpetic neuralgia...infection rate by adulthood runs near 90%
Epstein Barr Virus, causes a bunch of fevers - classically its the cause
of Glandular Fever aka Infectious Mononucleosis - often detected in
those kids who didnt get it in a baby when they start swapping saliva.
Infectino rate is 90%+ by adulthood - identifiable disease rate much
lower. Linked to a nasal carcinoma in the Far East and also linked to
varying degrees to Hodgkins disease and Burkitts lymhoma (though if I
remember correctly those links hav weakened). I dont really need to rehash
the CFS linked story of EBV here....
Cytomegalovirus - Generally does nothing, a few people get something like
mononucleosis, it infects around 50% of the world. Turned up in transplant
patients on immunosuppressive regimes. A variant of this is the base for
John Martin's stealth virus.
HHV6 - infects 95-100% of the global population by age 2. Commonly causes
fevers in kids, nasty ones. People are looking at this in Multiple
Sclerosis, and CFS as well. Two variants
HHV7 - difficult to find an infectin figure for this, indeed any data. It
is one of the least studied of the Herpesviruses. In HIV+ve patients
HHV8 - Rare in the herpesviruses - the infection rate is very low - Ive
seen figures of around 2% for the UK. It clusters in families where close
relatives can be seen to have higher rates of infection. It is the cause
of Kaposi's Sarcoma. Again the number of people who get that compared toth
number infected is low in the classic disease...in HIV +ve people the
SO as soon as you find herpesvirus activity in ANY disease, you could be
staring at the things reacting (especially if there is immune
disturbance) or you could be seeing a population where they are causative.
Working out which is the bugbear of the field, since in many many many
areas you endup merely seeing herpeviruses doing their biology of seeing
an opportunity and breaking out. Its horribly nasty to
construct the experiments. It difficult to do the exclusion assays and as
soon as you accept the idea or consider the idea that CFS may be
multifactorial doing the statistics becomes a nightmare the likes of which
the average Nobel winner runs screaming like a baby from....
I was even 60% better but, I kept my grandson for a
few days out of the summer vacation time for several
weeks & I went back down. I had some sort of viral
onset because it was like a flu but, it was the worst i
every had & i thought i was going to die. I haven't had
the indepth tests for different viruses like you & many
others. I couldn't afford them nor could i keep going
to the only doctor who believe i had systemic yeast
& CFS. He used to be a MD but, went into the nutrition-
ist field. I have a rheumy that barely treats my for FMS
and a primary MD. neither believes in CFS/ME or CMP
which i also have.
I have been getting worse in the last 2 years & fear I
may go back to being wheelchair bound. I can only
do range of motion exercise and very little walking
because i crash so easily. Do you or any others here
know if it is too late to have the type of virus testing
that you & others are discussing? Will anything show
up now or do i have to get totally so sick again that
I can't even sit up for a few minutes at a time. And
lastly what type of doctor do i see? An Endochronologist?
I have limited funds SSD & SSI only I need to see
someone who will accept Medicare & Medicaid.
I will appreciate replies from you & others please.