Re: , and all: CFSPolitics

[Guest guest]

If anyone is interested, there is a group set up specifically to talk

about the political

" debates " and other aspects of CFS or whatever you want to call it.

The group is called " CFSPolitics " .

It's my understanding that political threads are not allowed on this board, but

over there,

they're more than welcome!

d.

> >

> >

> > Yet another debate about the same old issues. Arent you ever getting

> > tired of it?

> >

> > Stress or not stress, biological vs psychological.

> >

> > Which researchers think what and have what bias.

> >

> > Be happy there are a pretty broad agreement that CFS/ME is a

> serious

> > biological disorder. Its getting wide media coverage and there are

> > many researchers and doctors working on it.

> >

> > As long as CFS are different from person to person, and there is not

> > one stress, toxin, mold, viral factor that has yet to be proven

> > stronger than another we STILL are a bunch of different diseases

> > lumped together and we are in better need of subgrouping and

> diagnosis

> > and ofcourse treatment. In the meantime all we can do is learn by

> > trying things, not fighting over stupid matters.

> >

> > Some of you have a hard time accepting the possible involvement of

> > stress system in CFS. Do you also deny that people with addisons

> > experience stress intolerance or that people with parkinson

> frequently

> > experience depression? Please understand that there are biological

> > factors governing mood, stress and emotion rather than psychology

> and

> > thinking alone.

> >

> > I dont see the point in fighting over the same issues again and

> again.

> > If anything political discussions are better suited on a research

> list.

> >

> > Why cant we keep on topic?

> >

>

>

> If the topic is " Original CFS " then I AM on topic.

> People who are discussing some kind of " stress induced CFS " are not

> talking about the same disease at all!

> There ARE immune abnormalities which set " Original CFS " apart from

> everything else that was " lumped in " after the fact.

> -

>

> Osler's Web.

> Antecedent Epidemics.

>

> *The following year, Komaroff and his associate Dedra

> Buchwald told an audience of doctors and researc hers at the

> University of Washington in Seattle that approximately 40% of

> patienst with the disease had abnormally low sed rates. " With the

> exception of sickle-cell disease, " Buchwald said, " we've never seen

> sedimentation rates that are consistently zero, one, or two, with any

> other illnesses. We've speculated these patients may have difficulty

> forming red cell membranes, as is the case with sickle cell disease,

> because of a distorted red cell pathology. " Two years later,

> Canadian clinician Byron Hyde reported in the fall 1989 issue of his

> newsletter to sufferers, " To my knowledge, there are only five

> diseases that have a pathological low sedimentation level: myalgic

> encephalomyelitis (the British, Australian, and Canadian term for the

> chronic illness) sickle-cell anemia, hereditary sperocytosis, hyper-

> gammaglobulinemia, hyper-fibrogenemia. "

>

[Guest guest]

" kdrbrill " <kdrbrill@...> wrote:

>

> If anyone is interested, there is a group set up specifically

to talk about the political " debates " and other aspects of CFS or

whatever you want to call it.

>

I am interested, but the points I have raised here are so

fundamental to the purpose and functioning of this group that they

cannot arbitrarilly be set aside.

With so many illnesses being " lumped in " to CFS, with more new ones

every day, unless one knows " what type of CFS " is being described,

any proposed treatment PROBABLY arises from a different conceptual

view - unless the type of CFS is stated as clearly as possible.

I have a type of CFS, the " original " type, as Dr puts it,

that is NOT and CANNOT result from any level of emotional stress.

No more so that intense stress can lead to almost ANY known

infection without the presence of the actual infection.

And IF THAT INFECTION does not care about one's emotional state,

hitting stressed or unstressed in a manner that defies this stress

causality concept, it is only reasonable to say so.

What is unreasonable, is to reject it and refuse to admit that this

type of CFS exists.

-

[Guest guest]

Thanks for saying this, . I saw a new doctor Wednesday and she just kept

harping on " but you haven't said what stress brought this on, " as though stress

were the only possible cause. It is so disheartening to still be fighting this

battle twenty years later.

Re: , and all: Group CFSPolitics

" kdrbrill " <kdrbrill@...> wrote:

>

> If anyone is interested, there is a group set up specifically

to talk about the political " debates " and other aspects of CFS or

whatever you want to call it.

>

I am interested, but the points I have raised here are so

fundamental to the purpose and functioning of this group that they

cannot arbitrarilly be set aside.

With so many illnesses being " lumped in " to CFS, with more new ones

every day, unless one knows " what type of CFS " is being described,

any proposed treatment PROBABLY arises from a different conceptual

view - unless the type of CFS is stated as clearly as possible.

I have a type of CFS, the " original " type, as Dr puts it,

that is NOT and CANNOT result from any level of emotional stress.

No more so that intense stress can lead to almost ANY known

infection without the presence of the actual infection.

And IF THAT INFECTION does not care about one's emotional state,

hitting stressed or unstressed in a manner that defies this stress

causality concept, it is only reasonable to say so.

What is unreasonable, is to reject it and refuse to admit that this

type of CFS exists.

-

[Guest guest]

I agree that it's important to stress (pardon the pun) that the cohort you were

a part of

apparently did not have stress (any form) involved. But we know that .

You've been

posting the same message for at least 5 years over and over and over.

As for your 'original CFS' claim, just days ago you mentioned a doctor who

reported seeing

patients with similar complaints from 1975, and many of us have read about

earlier

'clusters'. We also know people who have been sick for over 30 years.

Your cohort may have had different symptoms or causes, but that's the point --

those

who came before you, and those of us who came after, also have different causes,

and

different symptoms, but in many cases, the SAME debilitating and disabling

results. We

should not be " set aside " or negated either.

d.

> >

> > If anyone is interested, there is a group set up specifically

> to talk about the political " debates " and other aspects of CFS or

> whatever you want to call it.

> >

>

> I am interested, but the points I have raised here are so

> fundamental to the purpose and functioning of this group that they

> cannot arbitrarilly be set aside.

>

> With so many illnesses being " lumped in " to CFS, with more new ones

> every day, unless one knows " what type of CFS " is being described,

> any proposed treatment PROBABLY arises from a different conceptual

> view - unless the type of CFS is stated as clearly as possible.

>

> I have a type of CFS, the " original " type, as Dr puts it,

> that is NOT and CANNOT result from any level of emotional stress.

> No more so that intense stress can lead to almost ANY known

> infection without the presence of the actual infection.

> And IF THAT INFECTION does not care about one's emotional state,

> hitting stressed or unstressed in a manner that defies this stress

> causality concept, it is only reasonable to say so.

>

> What is unreasonable, is to reject it and refuse to admit that this

> type of CFS exists.

> -

>

[Guest guest]

Yes, I've been saying it pretty much continuously since CFS was

created, and people still keep saying that stress CAN result in the

same thing.

That's like saying that doting 'refrigerator mothers' who instill

antisocial behaviors in their mentally disturbed children really do

have the same illness as all other children with autism.

Gee, ya really think so?

And if you look back at my " CFS claims " , you might notice that I

refer to Dr Rylls cohort as being exactly the same thing as ours.

Not only that, you may recall that virtually everyone who was

present at the moment CFS was created had been ill for no less than

three years. So we we ALL " had the illness before CFS came along " .

When CFS was being created as a syndromic entity, they weren't

looking at people from thirty years ago, as they are a bit more

difficult to examine. They were looking at us.

If you want to know what " Infectious Venulitis is really like, you

ask someone who was present when Dr Ryll conferred that name upon

their illness.

If you want to know what Tapanui Flu is really like, you ask Annette.

She was there and can tell you EXACTLY what " Tapanui Flu " is.

But if you want to know, beyond a shadow of doubt, what it was like

to have the illness that recieved the term " Chronic Fatigue

Syndrome " , you would ask the people in the specific cohort for whom

that particular term was created and applied.

Yes, I know it sounds unfair that people who were sick prior to the

invention of that term would have to compare their illness against

someone who became ill later, but the same holds true for ANY term

that is adopted for an illness.

People obviously had the same illness before Ramsay and Royal Free,

but when Myalgic Encephalomyelitis was coined, the people who were

already ill took a good hard look at their illness, whatever it was

called, and decided it was the same thing as the people in Ramsays

cohort - and started calling it ME.

You'll note that Dr Ryll changed the name of what he was calling HIS

patients from " Infectious Venulitis " to CFS because CFS became the

better known term.

Yes, they had been sick for much longer, but he did so by comparing

the signs and symptoms of his, and deciding they were the same as our

cohort which had been given that screwy name of CFS.

So, like I say, if you want to know what " original CFS " is - you

would ask the people who originally got that name slammed onto their

specific illness, because THEY can tell you what that illness is

really like.

-

" kdrbrill " <kdrbrill@...> wrote:

>

> I agree that it's important to stress (pardon the pun) that the

cohort you were a part of

> apparently did not have stress (any form) involved. But we know

that . You've been

> posting the same message for at least 5 years over and over and

over.

>

> As for your 'original CFS' claim, just days ago you mentioned a

doctor who reported seeing

> patients with similar complaints from 1975, and many of us have

read about earlier

> 'clusters'. We also know people who have been sick for over 30

years.

>

> Your cohort may have had different symptoms or causes, but that's

the point -- those

> who came before you, and those of us who came after, also have

different causes, and

> different symptoms, but in many cases, the SAME debilitating and

disabling results. We

> should not be " set aside " or negated either.

>

> d.