Re: Seeking information on Dr Byron Hydes text book

[Guest guest]

Phil & all,

Dr. Hyde's book is pretty solid throughout, and the first few pages are a real

eye-opener in regard to clear pictures of the abnormal brain neuro SPECT & PET

scans

as well as QEEG scans (these abnormal scans are also on the first page of the

Canadian

Consensus Criteria Overview--http://www.mefmaction.net/documents/me_overview.pdf

)

Also, the Neurology section of the Research portion on this new web site as well

as

the section entitled ME/CFS Explained show a lot of Dr. Hyde's work here:

www.name-us.org

Finally, Rich did a very nice summary of Dr. Hyde's presentation at a recent

AACFS

Conference in Wisconsin (now called IACFS). Maybe Rich could supply a link for

his

excellent summary of Dr. Hyde's presentation.

Du Pre

Website: http://www.angelfire.com/poetry/soareagle/index.html

" By words the mind is winged. " Aristophanes

Phil wrote:

I am thinking about buying a copy of Dr Byron Hyde's text book on

ME. However, owing to the cost, I thought I'd try and get a few

opinions on what its like first. I am looking for material that I

can show my GP first and fore-most, but also for my own use, and

perhaps to lend to other ME sufferers local to me. Therefore I have

the following questions:

1) Does anyone know if there is an online summary / review that they

think is useful / accurate?

2) Has anyone else used it to " talk round " their GP?

3) Is there anything in it that may cause problems - ie

controversial discussion that may wind up your average GP, or indeed

anything that you out-right disagree with?

I'd appreciate any comments or information,

Phil

[Guest guest]

, Phil, and the group,

Here's the url of Cort's site for the review of Byron Hyde's talk in

Oct. of 2004:

http://www.phoenix-cfs.org/The%20SITE/AACFS04Hyde.htm

Rich

>

> I am thinking about buying a copy of Dr Byron Hyde's text book on

> ME. However, owing to the cost, I thought I'd try and get a few

> opinions on what its like first. I am looking for material that I

> can show my GP first and fore-most, but also for my own use, and

> perhaps to lend to other ME sufferers local to me. Therefore I have

> the following questions:

>

> 1) Does anyone know if there is an online summary / review that

they

> think is useful / accurate?

>

> 2) Has anyone else used it to " talk round " their GP?

>

> 3) Is there anything in it that may cause problems - ie

> controversial discussion that may wind up your average GP, or

indeed

> anything that you out-right disagree with?

>

> I'd appreciate any comments or information,

>

> Phil

>

>

>

[Guest guest]

Thanks guys.

I'll follow these links up.

Phil

> >

> > I am thinking about buying a copy of Dr Byron Hyde's text book on

> > ME. However, owing to the cost, I thought I'd try and get a few

> > opinions on what its like first. I am looking for material that I

> > can show my GP first and fore-most, but also for my own use, and

> > perhaps to lend to other ME sufferers local to me. Therefore I

have

> > the following questions:

> >

> > 1) Does anyone know if there is an online summary / review that

> they

> > think is useful / accurate?

> >

> > 2) Has anyone else used it to " talk round " their GP?

> >

> > 3) Is there anything in it that may cause problems - ie

> > controversial discussion that may wind up your average GP, or

> indeed

> > anything that you out-right disagree with?

> >

> > I'd appreciate any comments or information,

> >

> > Phil

> >

> >

> >

[Guest guest]

Oops. This is the wrong message to thank you Blake, but I deleted mine too

quickly.

Edy

Blake Graham <blanket@...> wrote:

Dr. Byron Hyde's book is great. It gives an excellent overview of the

history of CFS and the pathophysiology, although I wouldn't look to as a source

of the latest information on treatment.

Blake

Re: Seeking information on Dr Byron Hydes text book

Thanks guys.

I'll follow these links up.

Phil

> >

> > I am thinking about buying a copy of Dr Byron Hyde's text book on

> > ME. However, owing to the cost, I thought I'd try and get a few

> > opinions on what its like first. I am looking for material that I

> > can show my GP first and fore-most, but also for my own use, and

> > perhaps to lend to other ME sufferers local to me. Therefore I

have

> > the following questions:

> >

> > 1) Does anyone know if there is an online summary / review that

> they

> > think is useful / accurate?

> >

> > 2) Has anyone else used it to " talk round " their GP?

> >

> > 3) Is there anything in it that may cause problems - ie

> > controversial discussion that may wind up your average GP, or

> indeed

> > anything that you out-right disagree with?

> >

> > I'd appreciate any comments or information,

> >

> > Phil

> >

> >

> >

[Guest guest]

Dr. Byron Hyde's book is great. It gives an excellent overview of the history of

CFS and the pathophysiology, although I wouldn't look to as a source of the

latest information on treatment.

Blake

Re: Seeking information on Dr Byron Hydes text

book

Thanks guys.

I'll follow these links up.

Phil

> >

> > I am thinking about buying a copy of Dr Byron Hyde's text book on

> > ME. However, owing to the cost, I thought I'd try and get a few

> > opinions on what its like first. I am looking for material that I

> > can show my GP first and fore-most, but also for my own use, and

> > perhaps to lend to other ME sufferers local to me. Therefore I

have

> > the following questions:

> >

> > 1) Does anyone know if there is an online summary / review that

> they

> > think is useful / accurate?

> >

> > 2) Has anyone else used it to " talk round " their GP?

> >

> > 3) Is there anything in it that may cause problems - ie

> > controversial discussion that may wind up your average GP, or

> indeed

> > anything that you out-right disagree with?

> >

> > I'd appreciate any comments or information,

> >

> > Phil

> >

> >

> >

[Guest guest]

Phil,

I purchased two copies of said book by the Nightengale foundation back when they

offered a buy one get the other for half price deal. or something of that sort.

I think it is an excellent textbook for use in tactical deployments contra M.D.

typical value system. in the clinical and scientific basis... we have an entry

by virtually EVERY player in the field (up till then): Cheney, Goldstein, Les

Simpson, ummm- an excellent section on the perspective from France, where they

have used the term Spasmophilie instead of cfs; the doctor whose name I forget

speaks of the condition more in terms of electrolyte distrubances and the role

of nutrient supplementation.

Sorry, but my memory lapses when it comes to being capable of rattling off 3

dozen more players from that time due to acquired brain injury and resulting

amnesia. I gave my second copy to the central library in my city and it was

graciously accepted.

In sum, the book is a large hardcover textbook that although dated, would appear

to have the requisite formal qualities needed to potentially recruit the

attention of an average MD. AFter all, it ISN'T taken from the internet and

besides they have never seen that text! How could this be?! [alas, I am

disingenuous: MDs in my experience q) never read anything voluntarily unless

they are academic types, they stopped learning about medicine when they

graduated from med school 35 years ago, c) have no time to read what they might

considerately accept from you in order to get to their next patient.

This book is as good a candidate as any but the question is; does your doc have

an open minded interest in medicine still or are they dogmatic and closed? if

the latter, then strategize well before tactical deployments...

H

Seeking information on Dr Byron Hydes text book

Hi All,

I am thinking about buying a copy of Dr Byron Hyde's text book on

ME. However, owing to the cost, I thought I'd try and get a few

opinions on what its like first. I am looking for material that I

can show my GP first and fore-most, but also for my own use, and

perhaps to lend to other ME sufferers local to me. Therefore I have

the following questions:

1) Does anyone know if there is an online summary / review that they

think is useful / accurate?

2) Has anyone else used it to " talk round " their GP?

3) Is there anything in it that may cause problems - ie

controversial discussion that may wind up your average GP, or indeed

anything that you out-right disagree with?

I'd appreciate any comments or information,

Phil

[Guest guest]

Hi H

About considering CFS as spasmophilie in France,what you read in the book is

completely inaccurate. My sister is spasmophile without CFS, I have CFS and

I am not spasmophile. Spasmophilie is a chronic lack of magnesium which

makes muscles spasm. I am sorry to disappoint you, but in France the doctors

as far as I could notice have merely no perspective about CFS. BTW, I would

be curious to know the name of the one mentioned in the book, I'm going to

pay him a courtesy visit Can you tell me his name, please? Thanks!

Will let you know!

Sylvie,

in France

> Re: Seeking information on Dr Byron Hydes text book

> Posted by: " HJR " hudr@... hudjr

> Date: Sun Jul 30, 2006 10:53 am (PDT)

>

> Phil,

>

> I purchased two copies of said book by the Nightengale foundation back when

> they offered a buy one get the other for half price deal. or something of

> that sort.

>

> I think it is an excellent textbook for use in tactical deployments contra

> M.D. typical value system. in the clinical and scientific basis... we have an

> entry by virtually EVERY player in the field (up till then): Cheney,

> Goldstein, Les Simpson, ummm- an excellent section on the perspective from

> France, where they have used the term Spasmophilie instead of cfs; the doctor

> whose name I forget speaks of the condition more in terms of electrolyte

> distrubances and the role of nutrient supplementation.

[Guest guest]

Don't worry about disappointing me! I don't have time to give major argument

but let me say this: it is my contention that CFS may be heterogeneous disorder

with the various subpopuulations...one of which I want to suggest is a

population of sufferers from Gittelman's Syndrome which is a rare[?] mostly

genetic disease of the kidneys, considered relatively benign or even

asymptomatic at times. To be short GS is this: a condition which is

characterized by a mutation of the sodium-chloride transporter. Until recently,

it was thought to be just one type of mutation there. but now it is considered

to be any number of related syndromes all of which share a mutation of some kind

in the genes which encode for the sodium chloride transporter. There can be

many (codon substitutions or deletions...). This does indeed tend to lead to

muscle spasm via inadequate sodium and chloride retention/kinetics... which

leads to inadquate water retention, ...not enough chloride would lead to

alkalosis or alkalemia... without the sodium transporter working properly we

cannot retain other electrolytes namely potassium and magnesium. without

magnesium, the parathyroids do not do their job of turning storage form calcium

(in bone usully) into the ionized and active form. This lack of ionized calcium

leads to 'tetany' or muscle spasm/neuromuscular hyperexcitability which can be

very serious I'd imagine (imagine all your muscles in spasm) or it can be

asymptomatic. Or it could resemble say, Myofascial Pain Syndrome, which is a

common component of cfs...sort of a twin sister to fibromyalgia syndrome.

And since MPS and FMS are arguably actually CFS (whose diagnostic criteria from

ages ago...CDC?) always involved pain as a necessary criterion for a positive dx

or cfs. In FMS it takes the form of tenderness muscle pain. In MPS it has the

quality of trigger points / localized knots and spasms which refer pain

elsewhere besides the actual trigger point.

So, unwiling to get any furthe into my hypothesis right now, let me just say

that it is best to keep an open mind. I try to use the phenomenological

technique which involves taking your beliefs about something and bracketing them

(holding them aside for a sec) and consulting your experience directly. This

method has led me to Gittelman's = Spasmophilie both of which are probably

poorly understood and defined and whose treatments overlap considerably with

those for CFS.

that's all I can muster for now. sorry for the incompleteness.

Always,

--

Hud J Oetoyo

Re: Re: Seeking information on Dr Byron Hydes

text book

[Guest guest]

--- So if its a problem with the sodium chloride transporter

treatment implications are what exactly?- Salt/C protocol, saltpipe

or abx???

Wallace

In , " HJR " <hudr@...> wrote:

>

> Don't worry about disappointing me! I don't have time to give

major argument but let me say this: it is my contention that CFS may

be heterogeneous disorder with the various subpopuulations...one of

which I want to suggest is a population of sufferers from Gittelman's

Syndrome which is a rare[?] mostly genetic disease of the kidneys,

considered relatively benign or even asymptomatic at times. To be

short GS is this: a condition which is characterized by a mutation

of the sodium-chloride transporter. Until recently, it was thought

to be just one type of mutation there. but now it is considered to

be any number of related syndromes all of which share a mutation of

some kind in the genes which encode for the sodium chloride

transporter. There can be many (codon substitutions or

deletions...). This does indeed tend to lead to muscle spasm via

inadequate sodium and chloride retention/kinetics... which leads to

inadquate water retention, ...not enough chloride would lead to

alkalosis or alkalemia... without the sodium transporter working

properly we cannot retain other electrolytes namely potassium and

magnesium. without magnesium, the parathyroids do not do their job

of turning storage form calcium (in bone usully) into the ionized and

active form. This lack of ionized calcium leads to 'tetany' or

muscle spasm/neuromuscular hyperexcitability which can be very

serious I'd imagine (imagine all your muscles in spasm) or it can be

asymptomatic. Or it could resemble say, Myofascial Pain Syndrome,

which is a common component of cfs...sort of a twin sister to

fibromyalgia syndrome.

>

> And since MPS and FMS are arguably actually CFS (whose diagnostic

criteria from ages ago...CDC?) always involved pain as a necessary

criterion for a positive dx or cfs. In FMS it takes the form of

tenderness muscle pain. In MPS it has the quality of trigger

points / localized knots and spasms which refer pain elsewhere

besides the actual trigger point.

>

> So, unwiling to get any furthe into my hypothesis right now, let me

just say that it is best to keep an open mind. I try to use the

phenomenological technique which involves taking your beliefs about

something and bracketing them (holding them aside for a sec) and

consulting your experience directly. This method has led me to

Gittelman's = Spasmophilie both of which are probably poorly

understood and defined and whose treatments overlap considerably with

those for CFS.

>

> that's all I can muster for now. sorry for the incompleteness.

>

>

> Always,

>

> --

> Hud J Oetoyo

> Re: Re: Seeking information on Dr

Byron Hydes text book

>

>

>

>