Viruses in CFS (pretty long)

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Susan Jones

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Sep 9, 2003, 10:08:28 PM9/9/03
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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. I think he named it SumOne. He didn't get any funding except privately for most of his work, so you know where that study ended up.
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 private labs, one here and one in Brussels with Kenny Meileur (not perfectly sure of the spelling of his name, but it's close), who has worked for years with Dr. Peterson in Incline Village. They aren't finding it in every single sample, but in a majority of CDC criteria CFS cases. Belgium is funding Dr.Meileur's work, but you know who's funding the Universities' studies??? Private funds is all that I know of. However, the CDC just paid back the CFS research that they had "stolen" or misdirected (gov.language for stolen) from CFS research during the past several years, so they are now funding many studies. Whether or not it is for PCR testing for HHV6 and 7 I don't know. My own blood was tested, and it was found that I have HHV6 and 7.
Ampligen, which was given under NIH studies as an IV treatment, was given as an anti-viral and had to be given over a year's time in total. Some were on it for two years before they were "well".
Also, many patients with CFS turned up with Hepatitis B and or C in tests. I was so sick, I had Hep B and it still shows up on my blood tests, only they say I somehow cleared it. This was after I had taken the Kutapressin. I had no idea and neither did any of the many docs I was going to at the time.
NIH is now being investigated for possible misuse of CFS funds too. But they did fund the Ampligen studies, which, for some strange reasons are being given in many countries( including Mexico and Canada among others), but not the U.S. They aren't studies anymore, they are a prescribed treatment program. I asked them why and at the time, there was no answer. Hmmm.......
At the last AACFS conference, where CFS specialists from all over the world come, they spoke of a possible HHV8.. as a new strain of herpes virus seen.
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 derivative) do so well on many CFS patients if given in larger doses for a longer time.The early Kutapressin wasn't doing the trick for CFS specialists, because just like the Ampligen, they gave it in too small a dose and for too short a time. I became 60% better over just a 3 1/2 month time period giving it to myself daily in 2 cc shots IM. I had to stop only because of the cost. I don't have family to fund it or I'd still be on it and who knows?
One more. A Dr. Martin Lerner in Michigan I think, thinks we all have a viral infection of the heart. He has a web site as do others I've mentioned.
There is a molecular predisposition that R. Suhaldonik at Temple Univ. found that probably makes us susceptible to these viruses because he found a low molecular weight in one pathway, (the R-nase L), but still there are viruses. The fact that they are most likely multiple and different in sub sets of patients is why they are hard to pin down.
This is why, although some docs (like Suhaldonik at first) suggested a whopper IV dose of Doxycycline over many months, and others like Goldstein, proposed antibiotics at one time... doctors aren't pressing the insurance co's nor medicare or medicaid to give us these. But I do wonder why they are giving Ampligen in Canada and Mexico but not here????
Well, enough science talk. How can I remember all that and not what street to drive to????? Well, I think it's because we're all looking for a cure and I've read and re-read this stuff so much, even spoken on the phone to a couple of researchers...that I remember this science stuff.
Now I saw on a local news program that the U of Miami with Nancy Klimas is doing a study and having great success with Procrit, the red cell booster and maker used with chemo patients w/ cancer. The first time I saw that commercial, I thought" hmm....if it makes extra red blood cells, why shouldn't they try it on us? So they are, but you have to stay in Miami during the study.
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, Nevada outbreak which is in the exceptionally good book of the history and horribleness of CFS called "Inside the Labyrinth of Chronic Fatigue Syndrome" (I think that's the name??) by Hillary Johnson. It's been out for 2 or 3 years. I was one person of several hundred she interviewed for that book.
EEGADS! enough Susan. Ok, goodbye, adios, arrive derci, and so long. SUZQ in Nevada : )

Tim Fitzmaurice

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Sep 10, 2003, 3:06:51 AM9/10/03
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On Tue, 9 Sep 2003, Susan Jones wrote:

> 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'

Tim
--
When playing rugby, its not the winning that counts, but the taking apart
ICQ: 5178568

Dave

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Sep 10, 2003, 4:35:55 AM9/10/03
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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
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
view.

> 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,
etc.

Dave

RIlady

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Sep 10, 2003, 6:03:11 AM9/10/03
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Please get me off this list

RIlady

Tim Fitzmaurice

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Sep 10, 2003, 8:34:11 AM9/10/03
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On Wed, 10 Sep 2003, Dave wrote:

> 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
> patients.

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
CFS....

> 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
chose.
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
causes lymphomas

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
figures skew.

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....

Cheryl .

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Sep 11, 2003, 5:57:29 AM9/11/03
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SUZQ,
I have had CFS for 7 years now. I have improved with
an anti-Candida diet and a powdered nutritional subtance,
which some people hate to be mentioned, I don't understand that) because it
helped me & could help
many others. I don't nor never have sold it. I was severe-
ly ill & bedridden & feel I'm at least 50 % better.

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.

Cheryl

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