Re: De MeirLeir communication

[Guest guest]

This is why sometimes treatments like gamma globulin work.

Many chronic infections involve defective immunity and then

overactivity of another arm, because the pathogen is still present,

and even in low #'s, can generate this response.

Sometimes its just a " harmless " cohabitant, and molecular mimicry

causes the immune system to go into overdrive.

SOmetimes the pathogen itself can adapt and evade

surveillance/destruction.

Ozone is another good approach because it destroys biofilms.

Apparently the Marshall protocol works for some because it counters

inflammation and lets the body get to the pathogens. Pathogens often

create inflammation in cycles (h. pylori for instance is known to do

this) as it protects them and helps them invade, but they do it in

cycles, as too much inflammation screws it up for them.

Is this news? It seems intuitive to me, but thanx for reporting it.

[Guest guest]

<jenbooks13@h...> wrote:

Pathogens often create inflammation in cycles (h. pylori for

instance is known to do this) as it protects them and helps them

invade, but they do it in cycles, as too much inflammation screws it

up for them.

So Jill,

So I think you're saying that these cycles we go through, where we

might feel better (relatively) for a day or two and then revert to

feeling awful, is a matter of the amount of inflammation we're

experiencing which is a direct response to the activity level of the

bugs? Too much inflammatory response and the bugs become suppressed,

which in turn quiets down the inflammation. But as soon as the

inflammation is reduced, the bugs can come back out, the

inflammatory response kicks back in and the cycle starts all over

again???

So if Benicar, or other anti-inflammatories are significantly

reducing inflammation, this means the bugs are out and about a lot

more? This is basically the definition of immunosuppression, no? The

bugs come out because they're unhindered by the normal

inflammatory/immune response (which is missing).

We wouldn't be as aware of the bugs in this scenario, because we're

not experiencing the symptoms of inflammation. We feel better but

are actually getting sicker all the while.

So this is why it's very necessary to combine the anti-

inflammatories with the right antibacterials, to get the bugs while

they're exposed.

So doing any anti-inflammatory (or even immunosuppressents like

steroids) without the right drug to kill the bugs is probably a bad

idea in the long run. Unless the other immune pathways can handle

the bugs on their own, which I think they can to some extent now

that they can " see " the organisms better due to the reduced

inflammation, but total eradication by the immune system alone, I

think, is doubtful (especially in the case of steroids where the

entire immune system is being suppressed).

Interesting too, that the anti-inflammatory, aspirin, has some bug

killing properties. But again, is this a trait of the aspirin being

antibacterial, or the immune system being able to better " see " bugs

now that inflammation is reduced?

penny

[Guest guest]

> De MeirLeir communication,

Am I the only one who finds it interesting that Dr DeMeirleir would

write an email to cortt to let us know what he has found out and to

give us hope and end it with something which happened last year? I

can understand his hurt but why bring it up again and cause people

to overlook what he has to say about our illness? Sounds like what

congress does when they have some good legislation and they add

a " rider " to the end of it. He used an opportunity to get his own jab

in.

I remember reading one person's post where they said what the NCF

said publicly about Dr DeMeirleir makes all of us look silly. I agree

with that statement. As a member of the NCF, I called and complained

about them doing that. However, people making statements publicly

here about the NCF is doing the same thing they are condemning? You

cannot have it both ways. Someone said that there are few researchers

working on CFS and I agree. It is not however because the NCF made

those statements. It is simple. If they submit an request for

research money for CFS, they will be turned down. I remember the lady

doctor in Florida reporting that she turned in a request for funds to

research something about CFS and got a rating of something like 10%

and was turned down. She said that she turned in the exact same

request but titled it differently, not saying the research was for

CFS. She got a rating of 90% and got her research funds. Cortt says

he is glad Dr DeMeirleir is researching CFS, so am I. I am also very

glad that the NCF funded Knox & Carrigan recently to study STAT1, the

results will be presented at the AACFS conference soon. I am also

glad that the NCF is funding researchers presently, they won't even

say who and what about, to research other important things about CFS.

I just want my life back! Let the NCF and Dr DeMeirleir have their

differences. I want them both on my side.

I don't post much but I would just like to see consistency. Why

criticize someone publicly for criticzing someone else publicly?

Doesn't this also make us look silly. Are we not discouraging other

people who are on our side and funding research? I can understand why

people do not like some of the actions of the NCF, but remember they

and their children are ill with CFS. If you are a member why not call

them and complain about that action, but why would we (PWC's) not

want them to continue to fund research? We have to take the good with

the bad. You think the CDC is going to help us? Remember, our illness

is our enemy, not the NCF.

Sincerely,

Alisha

[Guest guest]

Alisha,

Excellent points!

Katrina

> > De MeirLeir communication,

>

> Am I the only one who finds it interesting that Dr DeMeirleir would

> write an email to cortt to let us know what he has found out and to

> give us hope and end it with something which happened last year? I

> can understand his hurt but why bring it up again and cause people

> to overlook what he has to say about our illness? Sounds like what

> congress does when they have some good legislation and they add

> a " rider " to the end of it. He used an opportunity to get his own jab

> in.

>

> I remember reading one person's post where they said what the NCF

> said publicly about Dr DeMeirleir makes all of us look silly. I agree

> with that statement. As a member of the NCF, I called and complained

> about them doing that. However, people making statements publicly

> here about the NCF is doing the same thing they are condemning? You

> cannot have it both ways. Someone said that there are few researchers

> working on CFS and I agree. It is not however because the NCF made

> those statements. It is simple. If they submit an request for

> research money for CFS, they will be turned down. I remember the lady

> doctor in Florida reporting that she turned in a request for funds to

> research something about CFS and got a rating of something like 10%

> and was turned down. She said that she turned in the exact same

> request but titled it differently, not saying the research was for

> CFS. She got a rating of 90% and got her research funds. Cortt says

> he is glad Dr DeMeirleir is researching CFS, so am I. I am also very

> glad that the NCF funded Knox & Carrigan recently to study STAT1, the

> results will be presented at the AACFS conference soon. I am also

> glad that the NCF is funding researchers presently, they won't even

> say who and what about, to research other important things about CFS.

> I just want my life back! Let the NCF and Dr DeMeirleir have their

> differences. I want them both on my side.

>

> I don't post much but I would just like to see consistency. Why

> criticize someone publicly for criticzing someone else publicly?

> Doesn't this also make us look silly. Are we not discouraging other

> people who are on our side and funding research? I can understand why

> people do not like some of the actions of the NCF, but remember they

> and their children are ill with CFS. If you are a member why not call

> them and complain about that action, but why would we (PWC's) not

> want them to continue to fund research? We have to take the good with

> the bad. You think the CDC is going to help us? Remember, our illness

> is our enemy, not the NCF.

>

> Sincerely,

>

> Alisha