Chronic Fatique Syndrom - MED: medical society and CFS diagnosis (Rika)

Author

MED: medical society and CFS diagnosis (Rika)

Rika Kageyama

2005-10-27, 6:05 pm

Dear All,

I am the living example but, doctors who give their patients
"CFS (CFIDS/ME) diagnosis" must be very careful.
My RP (relapsing polychondritis) onset was 10 years ago
and, I met with the CFS doctors regularly for the 10 years.
(As I mentioned before I must have left the CFS doctors to
understand what has been going on to me. Needless to
say I kept being told by the CFS doctors "All in your CFS")

CFS (or CFIDS/ME) must NOT be used for the alternate
words doctors, "All in you mind" (All in your CFS).
- This happened not only me, I presume....-
I want to require medical society to think about CFS (CFIDS/ME)
with more serious manner.

CFS (CFIDS/ME) really exists.
So, "warning to medical society" is another heavy responsibility
of the doctors who have related with CFS (CFIDS/ME).
-Not only showing off their discoveries. The best way could be
that their showing off can be the alert to the medical society.-

Hugs,
Rika (furious to doctors as usual)
CFS since 1979.
RP for since 1995.

Rika Kageyama

2005-10-29, 11:07 am

Sorry, this is repost to correct topic.
(Hitting reply button deleted MED topic AGAIN) - Rika

--------------------------------------------

Dear All,

This is a bit persistent, but please bare me.
(Because this could happen to "you").

Looking at the CFS world from out side,
CFS (neither CFIDS nor ME yet by now) is becoming
"All in your CFS", while Dangerous diseases could be
hidden in THE condition.
This is simply my experience but even CFS related doctors
have tendency to think "All in your CFS" before checking
the other possibilities. (Naturally, "too late" could happen).

In order to stop increasing the numbers of victims of the
ignorance in medical field (All in your CFS), I deadly hope
that your community will establish firm status of CFS in the
medical society.

I don't think I can express what I want to say enough,
but, hope you understand it.

Hugs,
Rika

I wrote:

>
> I am the living example but, doctors who give their patients
> "CFS (CFIDS/ME) diagnosis" must be very careful.
> My RP (relapsing polychondritis) onset was 10 years ago
> and, I met with the CFS doctors regularly for the 10 years.
> (As I mentioned before I must have left the CFS doctors to
> understand what has been going on to me. Needless to
> say I kept being told by the CFS doctors "All in your CFS")

> CFS (or CFIDS/ME) must NOT be used for the alternate
> words doctors, "All in you mind" (All in your CFS).
> - This happened not only me, I presume....-
> I want to require medical society to think about CFS (CFIDS/ME)
> with more serious manner.

> CFS (CFIDS/ME) really exists.
> So, "warning to medical society" is another heavy responsibility
> of the doctors who have related with CFS (CFIDS/ME).
> -Not only showing off their discoveries. The best way could be
> that their showing off can be the alert to the medical society.-

> Hugs,
> Rika (furious to doctors as usual)
> CFS since 1979.
> RP for since 1995.

e_j_anderson@juno.com

2005-10-29, 11:07 am

Rika:
Looking at the CFS world from out side,
CFS (neither CFIDS nor ME yet by now) is becoming
"All in your CFS", while Dangerous diseases could be
hidden in THE condition.
This is simply my experience but even CFS related doctors
have tendency to think "All in your CFS" before checking
the other possibilities. (Naturally, "too late" could happen).

Eric:
The underlying condition of CFIDS can predispose to other conditions. My personal belief is that most autoimmune disorders are infectious in nature, with an undetermined pathogen at the heart of it. But whether or not this is true, people should understan
d that in CFIDS, the general rule is an imbalance of the TH1/TH2 immune system. That would automatically predispose one to more allergic-type reactions, and at the same time increase the likelihood of developing a cancer, virus (even long term virus infec
tions), and intracellular bacteria infections. Rika, your tuberculosis could be an example of this -- the type of germ that causes it is in a class with L-forms of staphylococcus and mycoplasma.

So it would be good for all of us to be aware of the things that can be laid on top of the underlying CFIDS, if indeed that diagnosis was correct in the first place. My observation is that the quality of the fatigue in CFIDS is unlike the fatigue of other
illnesses, and represents a defining feature. At this point, CFS is still a bit difficult to define, but "we know it when we see it."

I'm not familiar enough with your case, Rika, to know if you fell easily into that CFIDS symptom pattern in earlier years. But the complications you have developed are not inconsistent with one of the hallmarks of CFIDS, the imbalance of TH1/TH2. The egg
hatched a chicken, which contains within it another egg. So now you have both. :-) At least, that is my guess, based on what you've written.

Since I don't have a real CFIDS doc, I don't know how dilligent they are to keep looking for and ferreting out other illnesses. They should be doing so, as you say. But if our doctors are not diligent, then we must be ourselves.

Cheney is in favor of immunomodulators that have adaptogenic qualities, because they tend to normalize the immune system whether it is overweighted to the TH1 side or the TH2 side. He thinks induction of IL-10 is a key, because he felt it acted as a brake
on the immune system -- whichever side of it was acting too vigorously for its own good. On the other hand, he readily admits that he doesn't have a really good protocol for treatment. He is always in search of something better because he isn't really sa
tisfied with his current strategies. Currently he said he's using a lot of isoprinosine -- which he thinks is an aid in rebalancing immune function. At least that is what I understood from his lecture.

See, this is what happens when you wake up too early. You start thinking, and that leads to typing, etc. :-)

Big bear hugs,
Eric

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Rika Kageyama

2005-10-30, 6:02 pm

Hi Eric,

>Since I don't have a real CFIDS doc, I don't know how
>dilligent they are to keep looking for and ferreting out
>other illnesses. They should be doing so, as you say.
>But if our doctors are not diligent, then we must be ourselves.

Thank you for your encouragement :-)
I was shocked when I was realized that I had already developed
different disease (RP) when I joined this list....
(I don't remember excatly when I joined here, but it must have
been around in 1995).

CFS is (I call it as it currently is) so confusing for medical society. But
only CFS (related researchers/doctors/patients) can solve the confusion.
And, that will open the new world for entire medical society. From patients
point of view, CFS is so huge and healthy - from mental point of view-
community. I expect all of you to move this community up from this hell,
along with your researchers/doctors. In the mean time, I'll continuously
input something when I will notice something, as an outsider, as usual.
(This is really serious problem for entire medical society, I believe.)

Regarding my tuberculosis, I also expected TB as my cause.
But, I succeeded to subside the symptoms under the control, the flare of RP
(relapsing polychondritis) got worse until I started up the prednisolone (My
RP it is not controlled yet but I can not the dosage of predonisolone).
So, I can not think TB as my cause. (I started to believe that my cause is
overdosage of prednisolone in my childhood - as a result, the cause of my
CFS/RP can be the work of my immune system "itself").

As you pointed out, most of the causes of auto immune disease is, virus
infection is included. But, after all, its cause is not identified and it
is "unknown" as CFS.

Well, I also doubted my first diagnosis (CFS) in the US. It was done at
University of Washington but my physician was GP (reliable one) at their
Hall Health. I had a chance to see Buchwald and I eventually called up her
office for my appointment. But, my schedule to go back to Japan was so
tight that I gave it up. Even if I saw Buchwald, I believe the result must
have been the same. I met ALL diagnostic criteria of CFS.
The above condition (meeting all of the CFS diagnostic criteria) continued
till three years ago (when I developed symptoms of Lymph-TB). With this
condition, I might not be able to blame three of the Japanese CFS specia-
lists.
But, I believe they should have considered other possibilities more "agg-
ressively". BECAUSE I suffered from CFS. (Instead of "All in your CFS").

From this point of view (predispose ), CFS itself is quite dangerous
condition. So, as Rita shouted (as usual :-), "Rest as much as
possible". (Rita, don't try to write now. We'll hear from you later.)

Well, the point is that you can not rest enough with the current CFS-
status in the medical society (all in your mind). So, establishing the
"firm status of CFS" in the medical society is primary matter, considering
the situation of yours (CFS patients) and patients with other diseases
(like me or others with cancer). In a word, CFS is VERY important disease
for entire medical society for various aspect... Without settling the firm
status of CFS (to have the patients rest enough), the numbers of patients
of autoimmune diseases, cancers or other immune- related diseases
would be increasing. (Just like diabetes, "first stage" is very important)

>But the complications you have developed are not inconsistent
>with one of the hallmarks of CFIDS, the imbalance of TH1/TH2.
>The egg hatched a chicken, which contains within it another egg.
> So now you have both. :-)

Yes. This is what I exactly felt when I did learn about RP....
(I expressed in one of my mails "minority version of CFS".)

My current troublesome problem is "distinguishing which is which" (CFS,
RP or TB). Particularly, the missing of TB-sign could be fatal.
But, for example, the pattern of my body temperature of CFS is so similar
to TB. (Slightly elevated). Of course, when my TB got worse as doctors
noticed, I recognized some change of the pattern of my body temperature
(lower when I wake up (slightly over 37.0 centi degree = 98.6F) and higher
in mid night to at 2-3 am (around 38.0 C = 100.4F).
But, everything was so confusing.
(I anyway keep a close eye on the "pattern" of my body temperature).

-Hope this sharing could be some help of you as a "coping strategy" with
CFS. When you develop something, "some change" could be detected
by you. Such as the pattern of Blood Pressure or Body Temperature
and so on. Change of "Pattern" is very important clue, anyway.-

>Cheney is in favor of immunomodulators that have adaptogenic qualities,

When I read a book about immune system and virus (old) again,
it mentioned Cheney is the one who suspected immune system in CFS.

> Currently he said he's using a lot of isoprinosine

According to the manual of therapeutic agents (in Japanese)
"Isoprinosine" is anti-virus (inosine pranobex) with quite large
spectrum and it is said it works for T-cell. It is also thought to
be good for the virus/flu infected mise under the immuno suppressing
condition, so it might be good for me when I get flu :-)
(my immune system is slightly suppressed with prednisolone)

>See, this is what happens when you wake up too early.
>You start thinking, and that leads to typing, etc. :-)

Your prediction was right ! :-)
-- The pattern of me has not changed yet and I am all right <g>

Thanks for the input, indeed.

Take a great care for all of you (flu)
Big bear hugs back to you, Eric.

Rika, always full of curiousity

Rika Kageyama

2005-10-30, 6:02 pm

Regarding the pattern of the Body Temperature....

>
> My current troublesome problem is "distinguishing which is which" (CFS,
> RP or TB). Particularly, the missing of TB-sign could be fatal.
> But, for example, the pattern of my body temperature of CFS is so similar
> to TB. (Slightly elevated). Of course, when my TB got worse as doctors
> noticed, I recognized some change of the pattern of my body temperature
> (lower when I wake up (slightly over 37.0 centi degree = 98.6F) and higher
> in mid night to at 2-3 am (around 38.0 C = 100.4F).

I can easily distinguish RP from TB (tuberculosis) because of the difference
of the pattern of my body temperature. When I am under the RP condition
only, the pattern shows "higher when I wake up (between 36.6 - 37.3 C
(96.8 F - 99.3F)) and lower in my bed time (around 36.6 (96.8F)).
- RP has completely "opposite pattern" from TB -

Problem is "distinguishing TB from CFS".
So, CFS could be closer to "persistent virus/bacterial infectious
condition" than autoimmune disease.
But, no one can say if it is really virus/bacteria is directly and
persistently related. (Not identified. Unknown. Could be the
condition that is the work of the immune system "itself"
had become uncontroled.)

Simply "Warning CFS for public and medical society as a
predispose of autoimmune diseases and cancers" are
enough to me though... (Layman's idea).

Hugs,
Rika