Infections/Parainfluenza Virus-5 the Cause of CFS

[Guest guest]

Jill,

Go read all the documents....the evidence is there. The information

confirms Dr. Robbins' finding. Dr. Robbins and his company has the

test before the FDA as they were the first to find this in CFS and MS

patients. Knox and Carrigan's work, which was funded by the NCF,

supported this finding.

Beach

> >

> > I don't usually post here but have been reading all the infection

> > posts. I have had CFIDS for 19 years or more and was diagnosed at the

> > Cheney Clinic by Dr. Lapp. Over 30years ago I started with FM.

> > 18months ago I was diagnosed with Mycobacterium Avium Complex (MAC)

> > and also another mycobacterium called Mycobacterium Fortuitum. I have

> > been on multiple antibiotics for over a year. I have experienced no

> > change in my CFIDS/FM symptoms.

>

>

> ***I was diagnosed in similar fashion with a mycobateria also at one

point.

> I took multiple antibiotics for it as well for supposed chronic lyme

> infestation and NADA. No one bit of improvement.

>

>

> ***I later re-tested fro the mycobacteria infection and it was

apparent the

> antibiotic therapy had completely wiped it flat line. It was not

the cause

> of my CFS as been speculated.

>

>

> ***BTW, nondenatured whey will do the same thing as the antibiotics

do with

> mycobacteria. It will flat line them.

>

>

> > Why is it that there has been very little discussion about the

> > announcement coming out of NCF?

>

>

> ***It's not standing out as a strong hypothesis, as presented by they're

> announcement, that the virus they're noticing PWCs have been exposed

to is

> the cause of CFS. There have been various viruses that have been proven

> that we've been exposed to, but none ever seem to end up being shown as

> causal, so how is this one really any different I guess is the

question that

> is giving people pause.

>

>

> Postive and even negative views should

> be out there on these boards online and it has been strangely quiet. Is

> everyone doubting that this announcement will hold up like so many

> > disappointments in the past?

>

>

> ***I don't have a reason to doubt they're finding of exposure.

However, I

> don't see the announcement outlining a hypothesis of chronic

pathology that

> follows from exposure to this virus, but more making an assertion

that there

> is possibly one.

>

>

> ***Also and maybe what I'm getting at is it would be helpful to us

for the

> NCF to explain the mechanism of STAT-1 in more detail, particularly

how it

> gets produced in the cell and the mechanism of its depletion. The

nature of

> their suggested causal hypothesis regarding this virus in CFS

essentially

> relies on what is going on with STAT-1 in us.

>

>

> ***At first blush by my layman's reading of STAT-1 is it seems this

protein

> depends a lot on ATP to get made. If this is right, this potentially

> creates a problem with NCF's hypothesis because it's becoming fairly

evident

> that PWCs are ATP production challenged to start, given the glutathione

> status and methylation issues tying back to genetics.

>

>

> ***STAT-1 depletion then seems to be more of a downstream terrain

issue and

> this virus of note possibly just adding insult to injury by creating

further

> depletion, but not properly characterized as THE cause of it in

PWCs. I'd

> like to here the NCF say more about they're finding and aswage this

concern

> that the gene variant/metabolic predispostions may be the more relevant

> issue when it comes to STAT-1 status.

>

>

> I just find it very strange that the

> > cfids community is so quiet about this announcement.

>

> ***

>

[Guest guest]

What do you call Dr. Hokama, Dr. Carrigan, and Dr. Knox?

NCF PAID researchers and/or scientists!

> >

> > I don't usually post here but have been reading all the infection

> > posts. I have had CFIDS for 19 years or more and was diagnosed at the

> > Cheney Clinic by Dr. Lapp. Over 30years ago I started with FM.

> > 18months ago I was diagnosed with Mycobacterium Avium Complex (MAC)

> > and also another mycobacterium called Mycobacterium Fortuitum. I have

> > been on multiple antibiotics for over a year. I have experienced no

> > change in my CFIDS/FM symptoms.

>

>

> ***I was diagnosed in similar fashion with a mycobateria also at one

point.

> I took multiple antibiotics for it as well for supposed chronic lyme

> infestation and NADA. No one bit of improvement.

>

>

> ***I later re-tested fro the mycobacteria infection and it was

apparent the

> antibiotic therapy had completely wiped it flat line. It was not

the cause

> of my CFS as been speculated.

>

>

> ***BTW, nondenatured whey will do the same thing as the antibiotics

do with

> mycobacteria. It will flat line them.

>

>

> > Why is it that there has been very little discussion about the

> > announcement coming out of NCF?

>

>

> ***It's not standing out as a strong hypothesis, as presented by they're

> announcement, that the virus they're noticing PWCs have been exposed

to is

> the cause of CFS. There have been various viruses that have been proven

> that we've been exposed to, but none ever seem to end up being shown as

> causal, so how is this one really any different I guess is the

question that

> is giving people pause.

>

>

> Postive and even negative views should

> be out there on these boards online and it has been strangely quiet. Is

> everyone doubting that this announcement will hold up like so many

> > disappointments in the past?

>

>

> ***I don't have a reason to doubt they're finding of exposure.

However, I

> don't see the announcement outlining a hypothesis of chronic

pathology that

> follows from exposure to this virus, but more making an assertion

that there

> is possibly one.

>

>

> ***Also and maybe what I'm getting at is it would be helpful to us

for the

> NCF to explain the mechanism of STAT-1 in more detail, particularly

how it

> gets produced in the cell and the mechanism of its depletion. The

nature of

> their suggested causal hypothesis regarding this virus in CFS

essentially

> relies on what is going on with STAT-1 in us.

>

>

> ***At first blush by my layman's reading of STAT-1 is it seems this

protein

> depends a lot on ATP to get made. If this is right, this potentially

> creates a problem with NCF's hypothesis because it's becoming fairly

evident

> that PWCs are ATP production challenged to start, given the glutathione

> status and methylation issues tying back to genetics.

>

>

> ***STAT-1 depletion then seems to be more of a downstream terrain

issue and

> this virus of note possibly just adding insult to injury by creating

further

> depletion, but not properly characterized as THE cause of it in

PWCs. I'd

> like to here the NCF say more about they're finding and aswage this

concern

> that the gene variant/metabolic predispostions may be the more relevant

> issue when it comes to STAT-1 status.

>

>

> I just find it very strange that the

> > cfids community is so quiet about this announcement.

>

> ***

>

[Guest guest]

Right on, Jill. And don't forget that this press release once again

trashes DeMeirleir and doesn't even footnote his work which they draw

on extensively to justify their hunt for the offending virus.

Beach, we might as well go back and think that EBV is the " cause " of

cfs. Just because you find a virus or bacteria in patients does not

mean that is the CAUSE. You know that and so do I. So I want more

objective research, not just pet projects.

a

>

>

> In , " madijen " <madijen@>

> wrote:

>

> > I don't usually post here but have been reading all the infection

posts. I

> > have had CFIDS for 19 years or more and was diagnosed at the Why

is it that

> > there has been very little discussion about the announcement

coming out of

> > NCF? Postive and even negative views should be out there on these

boards

> > online and it has been strangely quiet. Is everyone doubting that

this

> > announcement will hold up like so many disappointments in the

past? I just

> > find it very strange that the cfids community is so quiet about

this

> > announcement.

>

>

> It is based on history and past observations.

>

> The point is that their position has been to bank everything on

research,

> their choice of research, not supporting any other efforts of any

kind. The

> pattern has been to have one new alleged breakthrough after another

that is

> in turn billed as THE breakthrough.

>

> Each has been presented as the one that will provide THE answers

and may be

> what delivers everyone from the grip of CFS. Each becomes the

primary focus

> until it may not pan out as expected and a new supposed

breakthrough to

> campaign for comes along. We know that patients are desperate, yet

many do

> eventually catch on and this approach may end up being

disappointing. Many

> have been concerned by this but they can't seem to break this

pattern.

>

> The press release was so poorly written it is difficult to figure

out what

> it was saying. Mostly it just piggybacked on the MS study. (Anyone

can

> write a press release and pay through these outlets - it does not

confer any

> legitimacy to the content.) Other than patting themselves on the

back, the

> NCF hasn't provided much information.

>

> It contained no quotes from experts - only Gail and Al. The " medical

> director " has no medical training or background. There are no such

thing as

> " NCF scientists " as stated in the press release, or even " NCF

researchers "

> as they talk about. The (?deliberately) implied " ownership " of all

this

> research is absurd. This typical misleading hype and hyperbole may

be for

> attention but is very disingenuous. Research is not faith based or

what

> people believe or hope. With lack of qualifications, most have

found it best

> to not bother with it or trying to figure these things out or get

straight

> answers because you can't.

>

> Jill

>

>

> __________________________________________________________

>

> Message: 1

> Date: Sat Jun 3, 2006 8:57 pm (PDT)

> From: " davidhall2020 " davidhall@...

> Subject: Re: Infections/NCF?/madijen

>

>

> Hi, Madijen.

>

>

> " madijen " <madijen@> wrote:

> >

> > I don't usually post here but have been reading all the infection

> > posts. I have had CFIDS for 19 years or more and was diagnosed at

the

> > Cheney Clinic by Dr. Lapp. Over 30years ago I started with FM.

> > 18months ago I was diagnosed with Mycobacterium Avium Complex

(MAC)

> > and also another mycobacterium called Mycobacterium Fortuitum. I

have

> > been on multiple antibiotics for over a year. I have experienced

no

> > change in my CFIDS/FM symptoms.

>

>

> ***I was diagnosed in similar fashion with a mycobateria also at

one point.

> I took multiple antibiotics for it as well for supposed chronic lyme

> infestation and NADA. No one bit of improvement.

>

>

> ***I later re-tested fro the mycobacteria infection and it was

apparent the

> antibiotic therapy had completely wiped it flat line. It was not

the cause

> of my CFS as been speculated.

>

>

> ***BTW, nondenatured whey will do the same thing as the antibiotics

do with

> mycobacteria. It will flat line them.

>

>

> > Why is it that there has been very little discussion about the

> > announcement coming out of NCF?

>

>

> ***It's not standing out as a strong hypothesis, as presented by

they're

> announcement, that the virus they're noticing PWCs have been

exposed to is

> the cause of CFS. There have been various viruses that have been

proven

> that we've been exposed to, but none ever seem to end up being

shown as

> causal, so how is this one really any different I guess is the

question that

> is giving people pause.

>

>

> Postive and even negative views should

> be out there on these boards online and it has been strangely

quiet. Is

> everyone doubting that this announcement will hold up like so many

> > disappointments in the past?

>

>

> ***I don't have a reason to doubt they're finding of exposure.

However, I

> don't see the announcement outlining a hypothesis of chronic

pathology that

> follows from exposure to this virus, but more making an assertion

that there

> is possibly one.

>

>

> ***Also and maybe what I'm getting at is it would be helpful to us

for the

> NCF to explain the mechanism of STAT-1 in more detail, particularly

how it

> gets produced in the cell and the mechanism of its depletion. The

nature of

> their suggested causal hypothesis regarding this virus in CFS

essentially

> relies on what is going on with STAT-1 in us.

>

>

> ***At first blush by my layman's reading of STAT-1 is it seems this

protein

> depends a lot on ATP to get made. If this is right, this

potentially

> creates a problem with NCF's hypothesis because it's becoming

fairly evident

> that PWCs are ATP production challenged to start, given the

glutathione

> status and methylation issues tying back to genetics.

>

>

> ***STAT-1 depletion then seems to be more of a downstream terrain

issue and

> this virus of note possibly just adding insult to injury by

creating further

> depletion, but not properly characterized as THE cause of it in

PWCs. I'd

> like to here the NCF say more about they're finding and aswage this

concern

> that the gene variant/metabolic predispostions may be the more

relevant

> issue when it comes to STAT-1 status.

>

>

> I just find it very strange that the

> > cfids community is so quiet about this announcement.

>

> ***

>

[Guest guest]

Jill commented that " The " medical director " has no medical training or

background. " I've checked the NCF's announcement for this position

and this is true.

However, this may be a good thing. Last time I checked, all kinds of

people with every kind of background are capable of contributing in

this world. I believe this is often referred to as " out of the box

thinking. "

Did you ever see the movie, Lorenzo's Oil. Based on a true story,

Augusto Odone and his wife a worked to find, scientifically

prove, and to subsequently fund the manufacturing of Lorenzo's Oil,

a treatment used to reduce the physical destruction caused by

Adrenoleukodystrophy. Today, this treatment is available for children

with this disease worldwide. Augusto and a were not

scientists. Augusto was a banker while his wife was a homemaker.

Neither had any medical training or background whatsoever. What they

both had however was motivation....motivation governed by

unconditional love! They saw a critical need because of their

son's deteriorating condition and they had the drive to make things

happen. Their perserverance paid off!

My grandmother used to say, " God can do anything He wants! "

I'd say that in the Adone's case, He did!

By the way, Augusto Adone was given an honorary medical degree because

of his discovery! Augusto and a started The Myelin Project

which funds research into adrenoleukodystrophy to this very day!

Enough said!

Beach

> >

> > I don't usually post here but have been reading all the infection

> > posts. I have had CFIDS for 19 years or more and was diagnosed at the

> > Cheney Clinic by Dr. Lapp. Over 30years ago I started with FM.

> > 18months ago I was diagnosed with Mycobacterium Avium Complex (MAC)

> > and also another mycobacterium called Mycobacterium Fortuitum. I have

> > been on multiple antibiotics for over a year. I have experienced no

> > change in my CFIDS/FM symptoms.

>

>

> ***I was diagnosed in similar fashion with a mycobateria also at one

point.

> I took multiple antibiotics for it as well for supposed chronic lyme

> infestation and NADA. No one bit of improvement.

>

>

> ***I later re-tested fro the mycobacteria infection and it was

apparent the

> antibiotic therapy had completely wiped it flat line. It was not

the cause

> of my CFS as been speculated.

>

>

> ***BTW, nondenatured whey will do the same thing as the antibiotics

do with

> mycobacteria. It will flat line them.

>

>

> > Why is it that there has been very little discussion about the

> > announcement coming out of NCF?

>

>

> ***It's not standing out as a strong hypothesis, as presented by they're

> announcement, that the virus they're noticing PWCs have been exposed

to is

> the cause of CFS. There have been various viruses that have been proven

> that we've been exposed to, but none ever seem to end up being shown as

> causal, so how is this one really any different I guess is the

question that

> is giving people pause.

>

>

> Postive and even negative views should

> be out there on these boards online and it has been strangely quiet. Is

> everyone doubting that this announcement will hold up like so many

> > disappointments in the past?

>

>

> ***I don't have a reason to doubt they're finding of exposure.

However, I

> don't see the announcement outlining a hypothesis of chronic

pathology that

> follows from exposure to this virus, but more making an assertion

that there

> is possibly one.

>

>

> ***Also and maybe what I'm getting at is it would be helpful to us

for the

> NCF to explain the mechanism of STAT-1 in more detail, particularly

how it

> gets produced in the cell and the mechanism of its depletion. The

nature of

> their suggested causal hypothesis regarding this virus in CFS

essentially

> relies on what is going on with STAT-1 in us.

>

>

> ***At first blush by my layman's reading of STAT-1 is it seems this

protein

> depends a lot on ATP to get made. If this is right, this potentially

> creates a problem with NCF's hypothesis because it's becoming fairly

evident

> that PWCs are ATP production challenged to start, given the glutathione

> status and methylation issues tying back to genetics.

>

>

> ***STAT-1 depletion then seems to be more of a downstream terrain

issue and

> this virus of note possibly just adding insult to injury by creating

further

> depletion, but not properly characterized as THE cause of it in

PWCs. I'd

> like to here the NCF say more about they're finding and aswage this

concern

> that the gene variant/metabolic predispostions may be the more relevant

> issue when it comes to STAT-1 status.

>

>

> I just find it very strange that the

> > cfids community is so quiet about this announcement.

>

> ***

>

[Guest guest]

a,

There's nothing in the NCF's press release about DeMeirleir!

Beach

> > >

> > > I don't usually post here but have been reading all the infection

> > > posts. I have had CFIDS for 19 years or more and was diagnosed at

> the

> > > Cheney Clinic by Dr. Lapp. Over 30years ago I started with FM.

> > > 18months ago I was diagnosed with Mycobacterium Avium Complex

> (MAC)

> > > and also another mycobacterium called Mycobacterium Fortuitum. I

> have

> > > been on multiple antibiotics for over a year. I have experienced

> no

> > > change in my CFIDS/FM symptoms.

> >

> >

> > ***I was diagnosed in similar fashion with a mycobateria also at

> one point.

> > I took multiple antibiotics for it as well for supposed chronic lyme

> > infestation and NADA. No one bit of improvement.

> >

> >

> > ***I later re-tested fro the mycobacteria infection and it was

> apparent the

> > antibiotic therapy had completely wiped it flat line. It was not

> the cause

> > of my CFS as been speculated.

> >

> >

> > ***BTW, nondenatured whey will do the same thing as the antibiotics

> do with

> > mycobacteria. It will flat line them.

> >

> >

> > > Why is it that there has been very little discussion about the

> > > announcement coming out of NCF?

> >

> >

> > ***It's not standing out as a strong hypothesis, as presented by

> they're

> > announcement, that the virus they're noticing PWCs have been

> exposed to is

> > the cause of CFS. There have been various viruses that have been

> proven

> > that we've been exposed to, but none ever seem to end up being

> shown as

> > causal, so how is this one really any different I guess is the

> question that

> > is giving people pause.

> >

> >

> > Postive and even negative views should

> > be out there on these boards online and it has been strangely

> quiet. Is

> > everyone doubting that this announcement will hold up like so many

> > > disappointments in the past?

> >

> >

> > ***I don't have a reason to doubt they're finding of exposure.

> However, I

> > don't see the announcement outlining a hypothesis of chronic

> pathology that

> > follows from exposure to this virus, but more making an assertion

> that there

> > is possibly one.

> >

> >

> > ***Also and maybe what I'm getting at is it would be helpful to us

> for the

> > NCF to explain the mechanism of STAT-1 in more detail, particularly

> how it

> > gets produced in the cell and the mechanism of its depletion. The

> nature of

> > their suggested causal hypothesis regarding this virus in CFS

> essentially

> > relies on what is going on with STAT-1 in us.

> >

> >

> > ***At first blush by my layman's reading of STAT-1 is it seems this

> protein

> > depends a lot on ATP to get made. If this is right, this

> potentially

> > creates a problem with NCF's hypothesis because it's becoming

> fairly evident

> > that PWCs are ATP production challenged to start, given the

> glutathione

> > status and methylation issues tying back to genetics.

> >

> >

> > ***STAT-1 depletion then seems to be more of a downstream terrain

> issue and

> > this virus of note possibly just adding insult to injury by

> creating further

> > depletion, but not properly characterized as THE cause of it in

> PWCs. I'd

> > like to here the NCF say more about they're finding and aswage this

> concern

> > that the gene variant/metabolic predispostions may be the more

> relevant

> > issue when it comes to STAT-1 status.

> >

> >

> > I just find it very strange that the

> > > cfids community is so quiet about this announcement.

> >

> > ***

> >

>

[Guest guest]

With all due respect, let's be honest - this has nothing to do with the

CFIDS Assoc now does it? Nor is it about how much they or anyone spent or

who spent more. No research comes with a guarantee. It is about the overt

spin, misrepresentation, dishonesty and lack of credibility that we've

encountered. Changing the subject or criticizing the CFIDS Assoc doesn't

change anything.

Jill

_________________________

From: " kdrbrill " <kdrbrill@...>

Date: Sun Jun 4, 2006  8:41 pm

Subject: Re: CFIDS Association research...?

Beach said: " As for the NCF, they have spent $ 350,000 thus far on their

research. The CFIDS Association has spent ten times that thus far. It's

economies of scale! "

With all due respect Beach, what benefits have come from the CFIDS

Association research, especially considering how much they've spent?

Dan

> > > > >

> > > > > ,

>>>>> Let me try to make my point again.

>>>>>

>>>>> 1. The NCF used DeMeirleir's research on Stat 1 and his patent information

>>>>> which is public domain knowledge, but did not give him any credit - no

>>>>> footnoted link to his studies.

>>>>>

>>>>> 2. The NCF funded research on a virus which may or may not have much to do

>>>>> with causing cfs.

>>>>>

>>>>> 3. DeMeirleir, who is arguably the foremost researcher along with

>>>>> Suhadolnik and Englebienne on this whole question, has not indicated that

>>>>> he feels a virus is the responsible infection for the downstream

>>>>> destruction of RNaseL or stat 1. Indeed, he gives at least equal

>>>>> responsibility to both viruses and bacteria. MY QUESTION ALL ALONG HAS

>>>>> BEEN WHY DOESN'T THE NCF LOCATED IN THE HEART OF LYME COUNTRY FUND

>>>>> RESEARCH INTO BACTERIAL INFECTIONS THAT COULD DAMAGE THE RNASEL PATHWAY?

>>>>> Please note that patients with borrelia often are also carrying mycoplasma

>>>>> mentioned by DeMeirleir as affecting RNaseL and stat 1.

>>>>>

>>>>> Cort doesn't go deeply into stat 1 since this was not covered in

>>>>> depth in DeMeirleir's book. DeMeirleir does mention repeatedly that the

>>>>> virus infections found in cfs may be opportunistic and that bacteria such

>>>>> as mycoplasma can alter the RNaseL pathway. Also, in DeMeirleir's

>>>>> treatment protocol he used both Ampligen and antibiotics alternating each

>>>>> 4 months at a time. I don't think he uses Ampligen at all anymore,

>>>>> probably because it causes further degradation of stat 1 - again this

>>>>> LOOKS LIKE a virus is not the cause according to DeMeirleir as Ampligen is

>>>>> used to treat viral infections. Hemespherix has started researching the

>>>>> use of Ampligen for AIDS after all.

>>>>>

>>>>> Here is another quote from Cort's summary just to make the point again.

>>>>>

>>>>> http://www.phoenix-cfs.org/The%20SITE/CFSABAVI.htm

>>>>>

>>>>> " Another possible factor in the apoptotic disregulation seen is the high

>>>>> number of opportunistic infections CFS patients have. Viruses, chlamydia

>>>>> and mycoplasma are all able to inhibit apoptosis. (We will see later that

>>>>> mycoplasmas also appear to be able to fragment RNase L. Opportunistic

>>>>> infections can also aggravate the pathogenic process in CFS by disrupting

>>>>> metabolic pathways and cytokine production. G-actin cleavage undoubtedly

>>>>> negatively effects antigen presentation and phagocytosis. "

>>>>>

>>>>> a Carnes

>>>>>

>>>>>> ***This link has no mention or reference to STAT-1 so does nothing to

>>>>>> answer the question. In fact, Cort's entire summary of DeMeirleir's

>>>>>> book at the phoenix-cfs.org site is fairly thin on STAT-1 commentary.

>>>>>>

>>>>>>

>>>>>>

>>>>>> ***It is a summary, so perhaps that explains it. Nevertheless, the STAT-1

>>>>>> question I ask regarding its plausible depletion as a result of upstream

>>>>>> ATP production problems in PWCs, before and more than what PIV-5 virus

>>>>>> exposure might do, remains.

>>>>>>

>>>>>>

>>>>>>

>>>>>>

>>>>>>

> > > > >

> > > >

> > >

> >

>

 

   Reply    Forward

[Guest guest]

The FDA? Aren't they just a branch of the pharmaceutical industry

and the cell phone industry? I believe the former head of the FDA

now works for the cell phone industry. Doesn't work for me big time.

Get a clue!

> > > >

> > > > I don't usually post here but have been reading all the

infection

> > > > posts. I have had CFIDS for 19 years or more and was

diagnosed at

> > the

> > > > Cheney Clinic by Dr. Lapp. Over 30years ago I started with

FM.

> > > > 18months ago I was diagnosed with Mycobacterium Avium

Complex

> > (MAC)

> > > > and also another mycobacterium called Mycobacterium

Fortuitum. I

> > have

> > > > been on multiple antibiotics for over a year. I have

experienced

> > no

> > > > change in my CFIDS/FM symptoms.

> > >

> > >

> > > ***I was diagnosed in similar fashion with a mycobateria also

at

> > one point.

> > > I took multiple antibiotics for it as well for supposed

chronic lyme

> > > infestation and NADA. No one bit of improvement.

> > >

> > >

> > > ***I later re-tested fro the mycobacteria infection and it was

> > apparent the

> > > antibiotic therapy had completely wiped it flat line. It was

not

> > the cause

> > > of my CFS as been speculated.

> > >

> > >

> > > ***BTW, nondenatured whey will do the same thing as the

antibiotics

> > do with

> > > mycobacteria. It will flat line them.

> > >

> > >

> > > > Why is it that there has been very little discussion about

the

> > > > announcement coming out of NCF?

> > >

> > >

> > > ***It's not standing out as a strong hypothesis, as presented

by

> > they're

> > > announcement, that the virus they're noticing PWCs have been

> > exposed to is

> > > the cause of CFS. There have been various viruses that have

been

> > proven

> > > that we've been exposed to, but none ever seem to end up being

> > shown as

> > > causal, so how is this one really any different I guess is the

> > question that

> > > is giving people pause.

> > >

> > >

> > > Postive and even negative views should

> > > be out there on these boards online and it has been strangely

> > quiet. Is

> > > everyone doubting that this announcement will hold up like so

many

> > > > disappointments in the past?

> > >

> > >

> > > ***I don't have a reason to doubt they're finding of

exposure.

> > However, I

> > > don't see the announcement outlining a hypothesis of chronic

> > pathology that

> > > follows from exposure to this virus, but more making an

assertion

> > that there

> > > is possibly one.

> > >

> > >

> > > ***Also and maybe what I'm getting at is it would be helpful

to us

> > for the

> > > NCF to explain the mechanism of STAT-1 in more detail,

particularly

> > how it

> > > gets produced in the cell and the mechanism of its depletion.

The

> > nature of

> > > their suggested causal hypothesis regarding this virus in CFS

> > essentially

> > > relies on what is going on with STAT-1 in us.

> > >

> > >

> > > ***At first blush by my layman's reading of STAT-1 is it seems

this

> > protein

> > > depends a lot on ATP to get made. If this is right, this

> > potentially

> > > creates a problem with NCF's hypothesis because it's becoming

> > fairly evident

> > > that PWCs are ATP production challenged to start, given the

> > glutathione

> > > status and methylation issues tying back to genetics.

> > >

> > >

> > > ***STAT-1 depletion then seems to be more of a downstream

terrain

> > issue and

> > > this virus of note possibly just adding insult to injury by

> > creating further

> > > depletion, but not properly characterized as THE cause of it

in

> > PWCs. I'd

> > > like to here the NCF say more about they're finding and aswage

this

> > concern

> > > that the gene variant/metabolic predispostions may be the more

> > relevant

> > > issue when it comes to STAT-1 status.

> > >

> > >

> > > I just find it very strange that the

> > > > cfids community is so quiet about this announcement.

> > >

> > > ***

> > >

> >

>

[Guest guest]

Hello ,

>>>> Could

it be rather that there are a number of factors working together to

weaken the iMMune system (Microwaves and other EMFs, Metals, Chemicals) which

allow any and all of these pathogens to take hold? <<<<<

There have always been, and still are, many in the ME/CFS world who do think

this is what has happened/is happening to us.

There are also ways that toxic exposures that break the blood/brain barrier

activate viruses. Jannarone has discussed this with several researchers

over the years...I've always found her posts and reports interesting.

I think that heat can do this too, and blood thickening/hypercoagulation has to

do with that?

One of our earliest CFS activists, Tom Hennessey, made an elaborate chart, of a

load on a railway trestle, illustrating the system reaching a breaking point

resulting from multiple and diverse load on the system.

I'll never forget meeting Tom at an International CFS Research Conference,

carrying his big long, home-made chart.

Maybe it is on the website he ran of " R.E.S.C.I.N.D " .

Tom also appeared on Larry King Live in 1989 calling for an immediate change

from the name CFS, getting rid of the F word, and of the stereotypes of

patients.

Katrina

> > >

> > > I don't usually post here but have been reading all the infection

> > > posts. I have had CFIDS for 19 years or more and was diagnosed

> at the

> > > Cheney Clinic by Dr. Lapp. Over 30years ago I started with FM.

> > > 18months ago I was diagnosed with Mycobacterium Avium Complex

> (MAC)

> > > and also another mycobacterium called Mycobacterium Fortuitum. I

> have

> > > been on multiple antibiotics for over a year. I have experienced

> no

> > > change in my CFIDS/FM symptoms.

> >

> >

> > ***I was diagnosed in similar fashion with a mycobateria also at

> one point.

> > I took multiple antibiotics for it as well for supposed chronic

> lyme

> > infestation and NADA. No one bit of improvement.

> >

> >

> > ***I later re-tested fro the mycobacteria infection and it was

> apparent the

> > antibiotic therapy had completely wiped it flat line. It was not

> the cause

> > of my CFS as been speculated.

> >

> >

> > ***BTW, nondenatured whey will do the same thing as the

> antibiotics do with

> > mycobacteria. It will flat line them.

> >

> >

> > > Why is it that there has been very little discussion about the

> > > announcement coming out of NCF?

> >

> >

> > ***It's not standing out as a strong hypothesis, as presented by

> they're

> > announcement, that the virus they're noticing PWCs have been

> exposed to is

> > the cause of CFS. There have been various viruses that have been

> proven

> > that we've been exposed to, but none ever seem to end up being

> shown as

> > causal, so how is this one really any different I guess is the

> question that

> > is giving people pause.

> >

> >

> > Postive and even negative views should

> > be out there on these boards online and it has been strangely

> quiet. Is

> > everyone doubting that this announcement will hold up like so many

> > > disappointments in the past?

> >

> >

> > ***I don't have a reason to doubt they're finding of exposure.

> However, I

> > don't see the announcement outlining a hypothesis of chronic

> pathology that

> > follows from exposure to this virus, but more making an assertion

> that there

> > is possibly one.

> >

> >

> > ***Also and maybe what I'm getting at is it would be helpful to us

> for the

> > NCF to explain the mechanism of STAT-1 in more detail,

> particularly how it

> > gets produced in the cell and the mechanism of its depletion. The

> nature of

> > their suggested causal hypothesis regarding this virus in CFS

> essentially

> > relies on what is going on with STAT-1 in us.

> >

> >

> > ***At first blush by my layman's reading of STAT-1 is it seems

> this protein

> > depends a lot on ATP to get made. If this is right, this

> potentially

> > creates a problem with NCF's hypothesis because it's becoming

> fairly evident

> > that PWCs are ATP production challenged to start, given the

> glutathione

> > status and methylation issues tying back to genetics.

> >

> >

> > ***STAT-1 depletion then seems to be more of a downstream terrain

> issue and

> > this virus of note possibly just adding insult to injury by

> creating further

> > depletion, but not properly characterized as THE cause of it in

> PWCs. I'd

> > like to here the NCF say more about they're finding and aswage

> this concern

> > that the gene variant/metabolic predispostions may be the more

> relevant

> > issue when it comes to STAT-1 status.

> >

> >

> > I just find it very strange that the

> > > cfids community is so quiet about this announcement.

> >

> > ***

> >

>

[Guest guest]

I live in Japan. I think the FDA is full of crap. My doctor tested

me immediately when I was sick for a number of other viruses present

in people with cfs like EBV, CMV, HH6V, coxsackie, shingles, herpes

simplex one and two, and mycoplasma. I came up positive for all of

these. I later also tested positive for candida and toxoplasmosis.

what more do I need to know? there are probably a host of other

viruses in my body that were also being reactivated due to the

microwave radiation being emitted by the four 3rd generation cell

phone towers within a kilometer of my apartment. Since the fda (or

whatever gov. organization is responsible for this in each

respective country) is a branch of the cell phone industry and the

pharmaceutical industry do you think they are going to do anything

about the cell phone towers near my apartment? NOT.

> > > > > >

> > > > > > I don't usually post here but have been reading all the

> > infection

> > > > > > posts. I have had CFIDS for 19 years or more and was

> > diagnosed at

> > > > the

> > > > > > Cheney Clinic by Dr. Lapp. Over 30years ago I started

with

> > FM.

> > > > > > 18months ago I was diagnosed with Mycobacterium Avium

> > Complex

> > > > (MAC)

> > > > > > and also another mycobacterium called Mycobacterium

> > Fortuitum. I

> > > > have

> > > > > > been on multiple antibiotics for over a year. I have

> > experienced

> > > > no

> > > > > > change in my CFIDS/FM symptoms.

> > > > >

> > > > >

> > > > > ***I was diagnosed in similar fashion with a mycobateria

also

> > at

> > > > one point.

> > > > > I took multiple antibiotics for it as well for supposed

> > chronic lyme

> > > > > infestation and NADA. No one bit of improvement.

> > > > >

> > > > >

> > > > > ***I later re-tested fro the mycobacteria infection and it

was

> > > > apparent the

> > > > > antibiotic therapy had completely wiped it flat line. It

was

> > not

> > > > the cause

> > > > > of my CFS as been speculated.

> > > > >

> > > > >

> > > > > ***BTW, nondenatured whey will do the same thing as the

> > antibiotics

> > > > do with

> > > > > mycobacteria. It will flat line them.

> > > > >

> > > > >

> > > > > > Why is it that there has been very little discussion

about

> > the

> > > > > > announcement coming out of NCF?

> > > > >

> > > > >

> > > > > ***It's not standing out as a strong hypothesis, as

presented

> > by

> > > > they're

> > > > > announcement, that the virus they're noticing PWCs have

been

> > > > exposed to is

> > > > > the cause of CFS. There have been various viruses that

have

> > been

> > > > proven

> > > > > that we've been exposed to, but none ever seem to end up

being

> > > > shown as

> > > > > causal, so how is this one really any different I guess is

the

> > > > question that

> > > > > is giving people pause.

> > > > >

> > > > >

> > > > > Postive and even negative views should

> > > > > be out there on these boards online and it has been

strangely

> > > > quiet. Is

> > > > > everyone doubting that this announcement will hold up like

so

> > many

> > > > > > disappointments in the past?

> > > > >

> > > > >

> > > > > ***I don't have a reason to doubt they're finding of

> > exposure.

> > > > However, I

> > > > > don't see the announcement outlining a hypothesis of

chronic

> > > > pathology that

> > > > > follows from exposure to this virus, but more making an

> > assertion

> > > > that there

> > > > > is possibly one.

> > > > >

> > > > >

> > > > > ***Also and maybe what I'm getting at is it would be

helpful

> > to us

> > > > for the

> > > > > NCF to explain the mechanism of STAT-1 in more detail,

> > particularly

> > > > how it

> > > > > gets produced in the cell and the mechanism of its

depletion.

> > The

> > > > nature of

> > > > > their suggested causal hypothesis regarding this virus in

CFS

> > > > essentially

> > > > > relies on what is going on with STAT-1 in us.

> > > > >

> > > > >

> > > > > ***At first blush by my layman's reading of STAT-1 is it

seems

> > this

> > > > protein

> > > > > depends a lot on ATP to get made. If this is right, this

> > > > potentially

> > > > > creates a problem with NCF's hypothesis because it's

becoming

> > > > fairly evident

> > > > > that PWCs are ATP production challenged to start, given

the

> > > > glutathione

> > > > > status and methylation issues tying back to genetics.

> > > > >

> > > > >

> > > > > ***STAT-1 depletion then seems to be more of a downstream

> > terrain

> > > > issue and

> > > > > this virus of note possibly just adding insult to injury

by

> > > > creating further

> > > > > depletion, but not properly characterized as THE cause of

it

> > in

> > > > PWCs. I'd

> > > > > like to here the NCF say more about they're finding and

aswage

> > this

> > > > concern

> > > > > that the gene variant/metabolic predispostions may be the

more

> > > > relevant

> > > > > issue when it comes to STAT-1 status.

> > > > >

> > > > >

> > > > > I just find it very strange that the

> > > > > > cfids community is so quiet about this announcement.

> > > > >

> > > > > ***

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I agree with . What's the point of testing for the virus if there's no

treatment?

Plus, I'm still curious if this virus has been found in healthy controls? And

if so, what was

the percentage?

With so many of us overloaded with a wide variety of bacteria, fungi, viruses,

and hidden

parasite infections which are almost never addressed, I think we need to ask, as

is

doing, what other things may be weakening our immune systems (such as

overexposure to

EMF fields, toxic chemicals and contaminants in our air, water, and especially

food)?

And then how can we strengthen our immunity -- w/glutathione, coQ10,

nondenatured

whey, etc.???

just my two cents,

d.

> > > > > > >

> > > > > > > I don't usually post here but have been reading all the

> > > infection

> > > > > > > posts. I have had CFIDS for 19 years or more and was

> > > diagnosed at

> > > > > the

> > > > > > > Cheney Clinic by Dr. Lapp. Over 30years ago I started

> with

> > > FM.

> > > > > > > 18months ago I was diagnosed with Mycobacterium Avium

> > > Complex

> > > > > (MAC)

> > > > > > > and also another mycobacterium called Mycobacterium

> > > Fortuitum. I

> > > > > have

> > > > > > > been on multiple antibiotics for over a year. I have

> > > experienced

> > > > > no

> > > > > > > change in my CFIDS/FM symptoms.

> > > > > >

> > > > > >

> > > > > > ***I was diagnosed in similar fashion with a mycobateria

> also

> > > at

> > > > > one point.

> > > > > > I took multiple antibiotics for it as well for supposed

> > > chronic lyme

> > > > > > infestation and NADA. No one bit of improvement.

> > > > > >

> > > > > >

> > > > > > ***I later re-tested fro the mycobacteria infection and it

> was

> > > > > apparent the

> > > > > > antibiotic therapy had completely wiped it flat line. It

> was

> > > not

> > > > > the cause

> > > > > > of my CFS as been speculated.

> > > > > >

> > > > > >

> > > > > > ***BTW, nondenatured whey will do the same thing as the

> > > antibiotics

> > > > > do with

> > > > > > mycobacteria. It will flat line them.

> > > > > >

> > > > > >

> > > > > > > Why is it that there has been very little discussion

> about

> > > the

> > > > > > > announcement coming out of NCF?

> > > > > >

> > > > > >

> > > > > > ***It's not standing out as a strong hypothesis, as

> presented

> > > by

> > > > > they're

> > > > > > announcement, that the virus they're noticing PWCs have

> been

> > > > > exposed to is

> > > > > > the cause of CFS. There have been various viruses that

> have

> > > been

> > > > > proven

> > > > > > that we've been exposed to, but none ever seem to end up

> being

> > > > > shown as

> > > > > > causal, so how is this one really any different I guess is

> the

> > > > > question that

> > > > > > is giving people pause.

> > > > > >

> > > > > >

> > > > > > Postive and even negative views should

> > > > > > be out there on these boards online and it has been

> strangely

> > > > > quiet. Is

> > > > > > everyone doubting that this announcement will hold up like

> so

> > > many

> > > > > > > disappointments in the past?

> > > > > >

> > > > > >

> > > > > > ***I don't have a reason to doubt they're finding of

> > > exposure.

> > > > > However, I

> > > > > > don't see the announcement outlining a hypothesis of

> chronic

> > > > > pathology that

> > > > > > follows from exposure to this virus, but more making an

> > > assertion

> > > > > that there

> > > > > > is possibly one.

> > > > > >

> > > > > >

> > > > > > ***Also and maybe what I'm getting at is it would be

> helpful

> > > to us

> > > > > for the

> > > > > > NCF to explain the mechanism of STAT-1 in more detail,

> > > particularly

> > > > > how it

> > > > > > gets produced in the cell and the mechanism of its

> depletion.

> > > The

> > > > > nature of

> > > > > > their suggested causal hypothesis regarding this virus in

> CFS

> > > > > essentially

> > > > > > relies on what is going on with STAT-1 in us.

> > > > > >

> > > > > >

> > > > > > ***At first blush by my layman's reading of STAT-1 is it

> seems

> > > this

> > > > > protein

> > > > > > depends a lot on ATP to get made. If this is right, this

> > > > > potentially

> > > > > > creates a problem with NCF's hypothesis because it's

> becoming

> > > > > fairly evident

> > > > > > that PWCs are ATP production challenged to start, given

> the

> > > > > glutathione

> > > > > > status and methylation issues tying back to genetics.

> > > > > >

> > > > > >

> > > > > > ***STAT-1 depletion then seems to be more of a downstream

> > > terrain

> > > > > issue and

> > > > > > this virus of note possibly just adding insult to injury

> by

> > > > > creating further

> > > > > > depletion, but not properly characterized as THE cause of

> it

> > > in

> > > > > PWCs. I'd

> > > > > > like to here the NCF say more about they're finding and

> aswage

> > > this

> > > > > concern

> > > > > > that the gene variant/metabolic predispostions may be the

> more

> > > > > relevant

> > > > > > issue when it comes to STAT-1 status.

> > > > > >

> > > > > >

> > > > > > I just find it very strange that the

> > > > > > > cfids community is so quiet about this announcement.

> > > > > >

> > > > > > ***

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

,

>>>>>in people with cfs like EBV, CMV, HH6V, coxsackie, shingles, herpes

> simplex one and two, and mycoplasma. I came up positive for all of

> these. I later also tested positive for candida and toxoplasmosis.

> what more do I need to know? <<<<<

I can see why you would not be impressed with yet anther pathogen possibly found

in CFS blood!

Did you do any antibiotics, or others, and get re-tested? You remind me of

another question I've had, which is, given that many test positive for all of

these, when people take mega-antibiotics, and feel better, how the heck do they

know it what exactly they are " clearing " .

Another point, too, is that many ME/CFS patients cannot take mega antibiotics,

or hardly any. It was pretty scary for me this year, to get a virulent

pneumonia, with diastolic heart dysfunction, and be told by my doctor that we

are running out of ABX that I can tolerate...and none were touching it...plus,

one landed me in the Emergency room.

I was under the care of Dr. Cheney for a year. He said he spent the 1st years of

his career " chasing bugs " , others giving pharmaceuticals. That an age old debate

in Science is " bugs vs terrain " and he is now mainly focusing on terrain. But

still thinks CFS may have begun with a virus.

You will also be happy to know that when I brought up my EMS, tho he has not

studied it extensively, he notes that he slept better in a Power outage.

Do you know that some with EMS are also treating the terrain? They feel that the

EMS will also clear from doing so.

Having said all of this, many patients have not been tested for bugs and would

still like to know what the H is in their blood, what certain symptoms and

destruction might correlate,and what have been/could be found to get rid of

them.

Katrina

> > > > > > >

> > > > > > > I don't usually post here but have been reading all the

> > > infection

> > > > > > > posts. I have had CFIDS for 19 years or more and was

> > > diagnosed at

> > > > > the

> > > > > > > Cheney Clinic by Dr. Lapp. Over 30years ago I started

> with

> > > FM.

> > > > > > > 18months ago I was diagnosed with Mycobacterium Avium

> > > Complex

> > > > > (MAC)

> > > > > > > and also another mycobacterium called Mycobacterium

> > > Fortuitum. I

> > > > > have

> > > > > > > been on multiple antibiotics for over a year. I have

> > > experienced

> > > > > no

> > > > > > > change in my CFIDS/FM symptoms.

> > > > > >

> > > > > >

> > > > > > ***I was diagnosed in similar fashion with a mycobateria

> also

> > > at

> > > > > one point.

> > > > > > I took multiple antibiotics for it as well for supposed

> > > chronic lyme

> > > > > > infestation and NADA. No one bit of improvement.

> > > > > >

> > > > > >

> > > > > > ***I later re-tested fro the mycobacteria infection and it

> was

> > > > > apparent the

> > > > > > antibiotic therapy had completely wiped it flat line. It

> was

> > > not

> > > > > the cause

> > > > > > of my CFS as been speculated.

> > > > > >

> > > > > >

> > > > > > ***BTW, nondenatured whey will do the same thing as the

> > > antibiotics

> > > > > do with

> > > > > > mycobacteria. It will flat line them.

> > > > > >

> > > > > >

> > > > > > > Why is it that there has been very little discussion

> about

> > > the

> > > > > > > announcement coming out of NCF?

> > > > > >

> > > > > >

> > > > > > ***It's not standing out as a strong hypothesis, as

> presented

> > > by

> > > > > they're

> > > > > > announcement, that the virus they're noticing PWCs have

> been

> > > > > exposed to is

> > > > > > the cause of CFS. There have been various viruses that

> have

> > > been

> > > > > proven

> > > > > > that we've been exposed to, but none ever seem to end up

> being

> > > > > shown as

> > > > > > causal, so how is this one really any different I guess is

> the

> > > > > question that

> > > > > > is giving people pause.

> > > > > >

> > > > > >

> > > > > > Postive and even negative views should

> > > > > > be out there on these boards online and it has been

> strangely

> > > > > quiet. Is

> > > > > > everyone doubting that this announcement will hold up like

> so

> > > many

> > > > > > > disappointments in the past?

> > > > > >

> > > > > >

> > > > > > ***I don't have a reason to doubt they're finding of

> > > exposure.

> > > > > However, I

> > > > > > don't see the announcement outlining a hypothesis of

> chronic

> > > > > pathology that

> > > > > > follows from exposure to this virus, but more making an

> > > assertion

> > > > > that there

> > > > > > is possibly one.

> > > > > >

> > > > > >

> > > > > > ***Also and maybe what I'm getting at is it would be

> helpful

> > > to us

> > > > > for the

> > > > > > NCF to explain the mechanism of STAT-1 in more detail,

> > > particularly

> > > > > how it

> > > > > > gets produced in the cell and the mechanism of its

> depletion.

> > > The

> > > > > nature of

> > > > > > their suggested causal hypothesis regarding this virus in

> CFS

> > > > > essentially

> > > > > > relies on what is going on with STAT-1 in us.

> > > > > >

> > > > > >

> > > > > > ***At first blush by my layman's reading of STAT-1 is it

> seems

> > > this

> > > > > protein

> > > > > > depends a lot on ATP to get made. If this is right, this

> > > > > potentially

> > > > > > creates a problem with NCF's hypothesis because it's

> becoming

> > > > > fairly evident

> > > > > > that PWCs are ATP production challenged to start, given

> the

> > > > > glutathione

> > > > > > status and methylation issues tying back to genetics.

> > > > > >

> > > > > >

> > > > > > ***STAT-1 depletion then seems to be more of a downstream

> > > terrain

> > > > > issue and

> > > > > > this virus of note possibly just adding insult to injury

> by

> > > > > creating further

> > > > > > depletion, but not properly characterized as THE cause of

> it

> > > in

> > > > > PWCs. I'd

> > > > > > like to here the NCF say more about they're finding and

> aswage

> > > this

> > > > > concern

> > > > > > that the gene variant/metabolic predispostions may be the

> more

> > > > > relevant

> > > > > > issue when it comes to STAT-1 status.

> > > > > >

> > > > > >

> > > > > > I just find it very strange that the

> > > > > > > cfids community is so quiet about this announcement.

> > > > > >

> > > > > > ***

> > > > > >

> > > > >

> > > >

> > >

> >

>