Re: YASKO,-CAUTION

[Guest guest]

Jill

I agree. The name of this group is experimental after all! It'd be nice not to

have the strife over this.

Rich I so much appreciate your work and your patience withus. You are over the

top kind in my estimation. Thank you.

And God bless you

Diane in MI

Re: Re: YASKO,-CAUTION

jill1313,

I really think that you need to get off of your high horse. I think your

accusations about Rich are unfounded and unwarranted. Rich has always said that

he is not a medical doctor and his ideas are just hypotheses. Every 'treatment'

for CFS helps some but not all. Most treatments cause very negative detox and

die-off symptoms. I think Rich is very excited about the many positive outcomes

to his 'simplified approach'. Of course it's early, but who could blame him?

He's spent many years dedicating himself to understanding CFS and trying to

assuage our suffering. He's more caring and more knowledgeable than most of the

doctors that treat CFS patients.

The one issue that I think needs some consideration is the cardiac diastolic

dysfunction. If muscle fatigue is reversed before the heart muscle is restored,

that could obviously lead to more heart problems. It sounds like Rich has been

putting a lot of thought into this. As to the whys and wherefores of his

response, I'm going with Rich's thoughtfulness over your hectoring.

You know, of course, that to hector means to bully.

-Jan

jill1313 <jenbooks13@...> wrote:

Thank you for posting this Rich.

It is not good that you posted that long post about " cure " and all the

good things happening to people and left this out. It is possible then

that detox stimulated by the protocol has put her in the ER?

Don't you think others want to know that?

And now a few people are coming out and--on CFS Yasko I just see

another post--someone had sleep disturbance, unusual thirst, and " roid

rage " on the protocol.

I think you knew these things.

I think it's very unfortunate that people were not honest about this

reporting and you did not disclose these things previously.

I feel like it was my hectoring on both threads that lead to this.

In a perverse way, though I suffer mightily for salt-c, I have to

thank Kurt R for my hectoring.

I learned a valuable lesson about how, when someone wants to believe

in a protocol, they will ignore all negatives to the detriment of

themselves and others.

You are also offering what amounts to medical advice, occasionally, on

immunesupport.

You are a very smart man, you've devoted yourself to studying this,

BUT you must examine now why you kept these issues to yourself when

you posted about how well this was working.

Because you could do harm to people, Rich, if they didn't hear any of

the negatives.

And also, and again, I am interested in the simplified protocol and I

think very interested and have been for a year in Amy's personalized

approach, BUT, you should always tell people to work with their doctors.

ALWAYS.

This should be under a doctor's supervision.

Thanks.

And this is more reason to have a questionnaire.

>

> > There is also a woman in immunesupport.com who said she was " doing

> so well on the methylation protocol " and riding her bike who now is

> at the hospital for the 3rd time in 3 days, with severe breathing

> problems, dizziness, pain in chest, arm and neck, fever, and very

> afraid.

> >

> > Katrina

>

[Guest guest]

>>> Most treatments cause very negative detox and die-off symptoms. <<<<

What do you mean by " very negative " ? I'm not sure I agree with this as

inevitable or acceptable. Meaning that it is precisely the wall and the DANGER

that is precautioned against in the extremely serious disease of ME/CFS. Again,

all of us under the name " CFS " do not have the same condition, severity, or

stage. *When asked*, Rich said a year ago that he is addressing " Fukuda CFS " .

This, today is not a disease at all and is a rather vague category/syndrome of

" tired " / " unwell " feeling, even leaning toward the Psychiatric.

But most of us with the very distinct, and serious brain, immune, cardiac,

endocrine disease of Myalgic Encephalomyelitis, in addition to others, are

bundled under the unfortunate name of CFS. And Rich's pronouncement and others'

promotion has stated quite assuredly that this is THE CAUSE/THE CURE of CFS,

period...no distinguishing, except perhaps, at times for it is strong contention

or the " major subset " . Yes, Rich has said this is his hypothesis, but the

accompanying reports (since *before anyone even began the protocols*) has

indicated something far beyond that.

I was taught that the process of true Scientists is to actually set out to

DISPROVE their own hypothesis. I found that very interesting.

Dr. Cheney also told me that one can often learn the most in Science from

DEBATES between opposing sides. (He also emphacised repeatedly the danger that

the Impedance machine itself could even cause me, if not done carefully).

Rich himself has said several times that he finds challenge a good thing.

I think that usual Scientific challenge and methods have often been suspended on

this topic...that there is some sort of mass co-dependancy that occurs whenever

perfectly reaonable concerns are raised

or questions asked. Those who have had serious challenges or even minor ones,

have for over a year been immediately and regularly bullied, chastised, shamed,

intimidated, right into silence or off of the list. This has included very

abusive back channel emails, by the way. Not everyone ill with this disease,

even if quite intelligent and educated in it, or simply with the intellectual

curiosity to question, is strong enough, articulate enough, or has the stamina

to withstand that battery from more vocal members.

Back to the so-called inevitable die off, detox that one " must bear " , the

disease of " original " CFS, of ME, has a very very long studied history (20+

years, 40 years) of very very severe reactions to supplements, medications, and

activities... " exquisite sensitivity " , ranging from simple intolerance, or

allergy, to dangerous and permanent, even life threatening harm. Some patients

are on the edge of organ failure, and there have been many sudden deaths from

Cardiac failure and other things...including overdoing substances, or

procedures, intolerance of even eating and drinking ie; tube fed.

MOST of us have had some type of relapse, long term or permanent damage from

actions or treatments we have done that we thought we were well enough for or

would make us better. Most can name something that set us back that has *never

been reversed*. We/I certainly have witnessed this countless times over among

other patients. (20 years in this community, nationally and globally, 10 running

a support group and telephone line).

It is this very distinct phenomenon that makes living with or treating the

disease so maddening, and requiring such specialized care and precaution.

It is ridiculous to be so cavalier as I am hearing about what is *assumed, not

known*, to be " detox " , to reverse and inevitablly end up in better health/CURE.

We are adults with free choice, most very intelligent, but this is also a very

vulnerable population, not always fully informed,many with very severe cellular

energy deficit and cognitive disability, and lack of medical guidance... Meaning

, IMO, an *extra* responsibility to each other, and certainly from anyone not

afflicted or taking a position of power or authority...to be very forthright,

clear, sensitive, and disclosing of any risk or information gathered, from our

experts or anecdotedly?

from ourselves and others, regarding treatment and management of our disease(s).

Many of us have dysphasia? and cannot speak/write what we are

thinking/wondering. Jill is far more articulate than many, plus with significant

education in and exposure to... Scientific process. I don't know if we even see

this condition itself in the same ways at all, but I am very grateful to her for

bringing up extremely reasonable and commonly accepted ethical points...Full

disclosure, of patients' illnesses, protocols, specifying the symptoms, adverse

and positive, of the population you are raving about, and protocol you are

promoting.

It is not enough to say I do not have time for posting detailed data, as I am

too busy finding new recruits and hailing it's success (plus one's work and the

challenge of one's LIFE, I realize).

There has been a much *lower* standard of accountability afforded Rich, and for

longer, than any other I have ever seen on this list, whether amateurs or

professionals, with the best intentions or not. Why should that be? We all do

have fear of losing any whom we feel is going to help/save us.

I personally feel this every time one of our Top professionals, or new piece of

research is shot down or so heavily critiqued before we have even heard fully

about them/their patients/it. And often, with completely erroneous, or biased

information conveyed...overshdowing.

But this is not just about Rich, but about US, ourselves, our environment here.

>>>>He's more caring and more knowledgeable than most of the doctors that treat

CFS patients.<<<<

Well, I don't know who you mean? How many have you met, or fully heard from?

Becasue I do not find your statement true at all, from my own

experience...meeting, studying, corresponding with many of them, a patient for a

time of a few ( yes, Certainly true of many self-proclaimed " specialists " ).

But there are FORTY YEARS of dedicated and recognised expertise on ME, some

still living, and TWENTY years of dedication to " CFS " . With great personal and

professional risk. Most of us here do not even know who many of them are, much

less what their full thinking or treatment is. But, they certainly know of the

phenomenon of " exquisite sensitivity " , multi system fragility, and the dangers

and precautions that must be taken in prescribing for this/these population(s).

And they do have *some* set of principles and official guidelines to which they

must be accountable. They are not God, either, nor perfect.

They are quite systematically constrained in getting out their findings...it's

all pretty ruthless...often it is only through us, ourselves. Yet, they are

regulary battered " by us " for not being more forth coming and fully disclosing

of their findings and patient responses to their treatments....how ironic.

We do not have to give such a total, maybe even dangerous " pass " to someone

becasue we respect or " need " him.

This involves our own taking responsibility, to ourselves, our actual LIVES.

We used to, as patients, here on this list, share the pros and cons of treatment

in detail, without it being an attack or seen as so threatening. But just

because we wanted to know and cared about ourselves and each other. It was

perhaps new, but very natural....kind of innocent. Yes, I have " euphoric

recall " , but relevant I think.

Katrina

> >

> > > There is also a woman in immunesupport.com who said she was " doing

> > so well on the methylation protocol " and riding her bike who now is

> > at the hospital for the 3rd time in 3 days, with severe breathing

> > problems, dizziness, pain in chest, arm and neck, fever, and very

> > afraid.

> > >

> > > Katrina

> >

>

>

>

>

>

>

>

[Guest guest]

Hi, all.

For those who are concerned about the woman who had to go to the ER,

as I have been, here's the latest word from her from the

ImmuneSupport CFS board:

" Anyway, I do not want to discourage anyone with what has happened to

me - but I do want to say it is possible that the protocol is so

strong that maybe someone like me would have to introduce items very

low (dose) and very slowly.

On the other hand, I just may be taking a turn for the worse. I am

graetful I got to do things for a few weeks - especially ride my

bike - which brought me great joy and hope. I may not have ever

gotten that glimpse of life had I not explored this protocol...

I know I am in the minority in terms of sesitivity and disability and

length of illness. So I don't want anyone to draw conclusions based

on my background - as Rich showed in documenting my background - I am

not the CFS norm.

No matter what and especially cause of what's heppened with me - I

hope even more that this is the 'cure.' "

Rich

>

> > There is also a woman in immunesupport.com who said she

was " doing

> so well on the methylation protocol " and riding her bike who now is

> at the hospital for the 3rd time in 3 days, with severe breathing

> problems, dizziness, pain in chest, arm and neck, fever, and very

> afraid.

> >

> > Katrina

>

[Guest guest]

Hi Rich,

Am I asking the obvious? I assume the hospital gave this woman IV

antibiotics, right? Fever and lung congestion?

a Carnes

>

> Hi, all.

>

> For those who are concerned about the woman who had to go to the

ER,

> as I have been, here's the latest word from her from the

> ImmuneSupport CFS board:

>

> " Anyway, I do not want to discourage anyone with what has happened

to

> me - but I do want to say it is possible that the protocol is so

> strong that maybe someone like me would have to introduce items

very

> low (dose) and very slowly.

>

> On the other hand, I just may be taking a turn for the worse. I am

> graetful I got to do things for a few weeks - especially ride my

> bike - which brought me great joy and hope. I may not have ever

> gotten that glimpse of life had I not explored this protocol...

>

> I know I am in the minority in terms of sesitivity and disability

and

> length of illness. So I don't want anyone to draw conclusions based

> on my background - as Rich showed in documenting my background - I

am

> not the CFS norm.

>

> No matter what and especially cause of what's heppened with me - I

> hope even more that this is the 'cure.' "

>

> Rich

>

>

>

> >

> > > There is also a woman in immunesupport.com who said she

> was " doing

> > so well on the methylation protocol " and riding her bike who now

is

> > at the hospital for the 3rd time in 3 days, with severe breathing

> > problems, dizziness, pain in chest, arm and neck, fever, and very

> > afraid.

> > >

> > > Katrina

> >

>

[Guest guest]

Hi, a.

I don't know. She hasn't said.

Rich

> > >

> > > > There is also a woman in immunesupport.com who said she

> > was " doing

> > > so well on the methylation protocol " and riding her bike who

now

> is

> > > at the hospital for the 3rd time in 3 days, with severe

breathing

> > > problems, dizziness, pain in chest, arm and neck, fever, and

very

> > > afraid.

> > > >

> > > > Katrina

> > >

> >

>

[Guest guest]

a,

Her last post was yesterday (Thurs) afternoon. She said she now had 100 degree

temp, was so dizzy, she couldn't see well, was home, tho they wanted to admit

her, and she was returning to hosp. today. She was glad she'd had some bike

riding, during the protocol, even if it was short-lived.

I don't know about lung congestion. Difficulty breathing, yes. I have that

symptom that is different from lung congestion, as in infection, but I guess it

can go into/ push on lungs. Also, my DD breathing symptoms do escalate with

infection. Having both is extremely scary...I also got pneumonia, not responding

to the few antibiotics I can tolerate. Makes you comtemplate quite a bit.

She did not say what they wanted to do..she was asking on the list if anyone had

the Cardiac diagnosis and what they do for it.

Isn't the Cleveland Clinic a pretty good place? It's good to know they would

diagnose for DD, at least some form of it.

The kind found in high percent of us so far, is a malfunction of

energy,mitochondria, not structure

But most Cardiologists who even " believe " in DD either:

A) Do not think it is serious---

Think it is serious, but nothing can be done about it (so why bother studying

it).

Guess we will start to collect info on how the Dr.s do treat it.

Would you think they would give IV abx for 100 degree fever and DD heart

failure? Me, I have no idea...that never came up.

Would that seem like a good idea to you? Targeting what infection...with, or w/o

a test? etc.

Thanks,

Katrina

..In , " pjeanneus " <pj7@...> wrote:

>

> Hi Rich,

> Am I asking the obvious? I assume the hospital gave this woman IV

> antibiotics, right? Fever and lung congestion?

>

> a Carnes

>

>

> >

> > Hi, all.

> >

> > For those who are concerned about the woman who had to go to the

> ER,

> > as I have been, here's the latest word from her from the

> > ImmuneSupport CFS board:

> >

> > " Anyway, I do not want to discourage anyone with what has happened

> to

> > me - but I do want to say it is possible that the protocol is so

> > strong that maybe someone like me would have to introduce items

> very

> > low (dose) and very slowly.

> >

> > On the other hand, I just may be taking a turn for the worse. I am

> > graetful I got to do things for a few weeks - especially ride my

> > bike - which brought me great joy and hope. I may not have ever

> > gotten that glimpse of life had I not explored this protocol...

> >

> > I know I am in the minority in terms of sesitivity and disability

> and

> > length of illness. So I don't want anyone to draw conclusions based

> > on my background - as Rich showed in documenting my background - I

> am

> > not the CFS norm.

> >

> > No matter what and especially cause of what's heppened with me - I

> > hope even more that this is the 'cure.' "

> >

> > Rich

> >

> >

> >

> > >

> > > > There is also a woman in immunesupport.com who said she

> > was " doing

> > > so well on the methylation protocol " and riding her bike who now

> is

> > > at the hospital for the 3rd time in 3 days, with severe breathing

> > > problems, dizziness, pain in chest, arm and neck, fever, and very

> > > afraid.

> > > >

> > > > Katrina

> > >

> >

>

[Guest guest]

It is NO service to people with cognitive issues when posts are NOT trimmed

to only include the last message instead of the whole thread.

mjh

************************************** See what's free at http://www.aol.com.

[Guest guest]

Thank you Kat.

Yes, everything you say is true.

I can take the heat. I think I did a service for us all the last few days.

> > >

> > > > There is also a woman in immunesupport.com who said she was

" doing

> > > so well on the methylation protocol " and riding her bike who now is

> > > at the hospital for the 3rd time in 3 days, with severe breathing

> > > problems, dizziness, pain in chest, arm and neck, fever, and very

> > > afraid.

> > > >

> > > > Katrina

> > >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

I'm glad to hear she communicated.

As Carol was posting--she was always told she was sensitive, and in

the minority.

I was told that with salt/c until I uncovered so many who'd reacted

adversely.

Kat points out the fragility of the ME/CFS system.

This gal is probably not in the minority.

Someone else backchanneled me that the simplified protocol is " brutal. "

Let's not have people take the onus on themselves. It is some sad form

of shame at being ill, and somehow incorporating into their definition

of their being, that they are unusually sensitive.

No, the illness is globally affecting all the systems.

Thus the negatives must never reflexively be interpreted as detox, and

the risks must be emphasized, and caution must be emphasized.

Especially if you can't monitor with urine tests to see if it IS detox.

And as a doc of mine once said, " When is detox tox? " In other words,

detox can stress the system.

> >

> > > There is also a woman in immunesupport.com who said she

> was " doing

> > so well on the methylation protocol " and riding her bike who now is

> > at the hospital for the 3rd time in 3 days, with severe breathing

> > problems, dizziness, pain in chest, arm and neck, fever, and very

> > afraid.

> > >

> > > Katrina

> >

>