Re: Hyde Stress Amygdala

[Guest guest]

Cort,

Dr.Hyde is very well respected and has his own distinctive diagnosis

for ME. I can tell you that he certainly isn't recommending tons of

supplements or " brain retraining " to treat his patients.

Years ago I bought into the idea that my illness was triggered by

stress (moving, going back to college, working for a bully boss)

which made me more suspectible to contracting a virus, but I know

now that's completely TOTALLY hooey.

You are entitled to your opinion, of course

Nat

> ly I trust Dr. Hyde about as far as I can throw him. Either

he's talking about a rather rare phenomenom - within the CFS

community - or he's just hooey - thats my opinion. The patients love

him but I imagine the researchers think he's a bit of a mess. My

reading of his definition suggests he's a bit of a mess -

disorganized and willing to twist the evidence to make whatever point

he wishes. You can drive trucks through some of the holes in his

thinking. I know I'm attacking another one the 'heroes' but after

reading him - thats my opinion!

[Guest guest]

Cort, it isn't clear what your point is here. Are you saying that

most patients are not rapid onset as Dr. Hyde suggests?

I tend to think it's tough to determine rapid onset in hindsight. I

do think most of us had a time, say a week, where we crashed. What we

realize looking back is that we may have been struggling for a few

months to years prior to that.

I think it is also important to note that Dr. Hyde wrote this in 1998

and may have not worded it quite so strongly by 2008. I tend to agree

with Hyde most of the time, but then he and I both believe that a few

intracellular infections are the CAUSES of cfs - infections that the

immune system cannot control.

a Carnes

>

> ly I trust Dr. Hyde about as far as I can throw him. Either

he's talking about a rather rare phenomenom - within the CFS

community - or he's just hooey - thats my opinion. The patients love

him but I imagine the researchers think he's a bit of a mess. My

reading of his definition suggests he's a bit of a mess -

disorganized and willing to twist the evidence to make whatever point

he wishes. You can drive trucks through some of the holes in his

thinking. I know I'm attacking another one the 'heroes' but after

reading him - thats my opinion!

>

>

>

>

> What can trigger or cause the onset of Myalgic Encephalomyelitis?

>

> M.E. expert Dr Byron Hyde explains that: `[The] prodromal phase is

>

> associated with a usually short onset or triggering illness. This

>

> onset illness usually takes the form of either, or any combination,

>

> of the following, (a) an upper respiratory illness, ( a

>

> gastrointestinal upset, © vertigo and (d) a moderate to severe

>

> meningitic type headache. The usual incubation period of the

>

> triggering illness is 4-6 days. (1998 [Online])

[Guest guest]

Hoi,

About the definitions of our disease :

1) CFS should be in the trash can

so, 6 months tired ;no cancer or MS... and you can have a CFS

status!!!

What kind of bulshit is this?

We do live in 2008, you know.

2)ME = already much better but lacks some things. For me it is

a " transition-definitin "

2) Aids or Acquired Immune Deficiency syndrome!!!

Read it over and think 'cause that's what we have!

Yes,I know we have no HIV but apart from that everything is the same.

The cascade of abnormalities;the same co-infections;treatments.....

Am I the only one to look at it this way or do some people agree?

Let me now,please (if the moderator allows it;if not I

apologise,hereby, for not posting correctly to the moderator.

Greetings,

Dirk

>

> No. My understanding is that Hyde even allows for gradual onset CFS

patients - as does in his rather highly select 'neuro-

immune' patient subset.

>

> I was ranting and raving about Dr. Hyde. I looked very closely into

his definition and some of his papers at one time and found them very

disappointing. He has changed his opinion over time - as anyone

should. Oddly enough he does it to incorporate the latests CFS

research findings into his ME paradigm and then says they don't have

CFS and slams CFS. That has been my experience.

>

> Watch the next big finding done on a group of patients selected

using the CDC's definition of CFS. It will show up in his next

definition of ME - which he will end with the statement that CFS is a

made up disease, blah, blah. Look at the latest definition - most of

it is taken from CFS studies  done on CFS patients.

[Guest guest]

> 2)ME = already much better but lacks some things. For me it is

> a " transition-definitin "

> 2) Aids or Acquired Immune Deficiency syndrome!!!

> Read it over and think 'cause that's what we have!

>

> Yes,I know we have no HIV but apart from that everything is the same.

> The cascade of abnormalities;the same co-infections;treatments.....

Hi Dirk,

Well, I agree with you, even if no one else does. I don't care for

CFS, ME is better. But AIDS certainly fits doesn't it.

I saw Dr. Salvato in the late 90's and she was and still is a

big AIDS doctor. I felt I was in the right place. She did help me

but not enough - I think I must have been one of her research

subjects, as I only had a very narrow protocol and it wasn't tailored

to my issues.

It did help (gluathione injections) but I needed more (correcting the

underlying methylation, perhaps).

I have been a little bitter in the discrepancy between the funding

AIDS has gotten vs our illnesses or many others. I comforted myself

by considering that any gains gotten for that illness could possibly

be transferred to our illnesses. I think that may have happened but

not as much as I had hoped.

Thanks,

Marti

[Guest guest]

that is interesting about aids

a question though, aids patients tend to lose weight, why is it that a

fair amount of cfids people complain of weight gain?

>

> > 2)ME = already much better but lacks some things. For me it is

> > a " transition-definitin "

> > 2) Aids or Acquired Immune Deficiency syndrome!!!

> > Read it over and think 'cause that's what we have!

> >

> > Yes,I know we have no HIV but apart from that everything is the same.

> > The cascade of abnormalities;the same co-infections;treatments.....

>

>

> Hi Dirk,

> Well, I agree with you, even if no one else does. I don't care for

> CFS, ME is better. But AIDS certainly fits doesn't it.

>

> I saw Dr. Salvato in the late 90's and she was and still is a

> big AIDS doctor. I felt I was in the right place. She did help me

> but not enough - I think I must have been one of her research

> subjects, as I only had a very narrow protocol and it wasn't tailored

> to my issues.

>

> It did help (gluathione injections) but I needed more (correcting the

> underlying methylation, perhaps).

>

> I have been a little bitter in the discrepancy between the funding

> AIDS has gotten vs our illnesses or many others. I comforted myself

> by considering that any gains gotten for that illness could possibly

> be transferred to our illnesses. I think that may have happened but

> not as much as I had hoped.

>

> Thanks,

> Marti

>

[Guest guest]

Dirk,

There are both differences and similarities to AIDS, and yes, the comparisons

have been made. This came up alot more in earlier days of the 80s epidemic...and

into the 90s. Some treatment sites also addressed both.

Neenyah Ostrum? was investigating " CFIDS " in a series of (Gay) magazine

articles, and wrote a little book called something like " 50 similarities between

AIDS and CFIDS " .

The public health nurse in my county heard of " CFS " ,CFIDS at an International

AIDS Conference, where they said " there's something else out there, too " .

Some even called it non-HIV AIDS.

One area that's different was that AIDS patients were actually losing T-cells,

wheras ours were " sluggish in the test tube " . Plus some of our immune system

was/is in overdrive. THis is why we can not just count on stimulating

the-immune-system treatments, but rather, look to " immune modulaters "

Those are just a few notes.

You can probably find some of this on the internet, and other places.

You know, that great ether where all our research ended up, when our specific

patient population was actually being looked at.

TC,

Katrina

> >

> > No. My understanding is that Hyde even allows for gradual onset CFS

> patients - as does in his rather highly select 'neuro-

> immune' patient subset.

> >

> > I was ranting and raving about Dr. Hyde. I looked very closely into

> his definition and some of his papers at one time and found them very

> disappointing. He has changed his opinion over time - as anyone

> should. Oddly enough he does it to incorporate the latests CFS

> research findings into his ME paradigm and then says they don't have

> CFS and slams CFS. That has been my experience.

> >

> > Watch the next big finding done on a group of patients selected

> using the CDC's definition of CFS. It will show up in his next

> definition of ME - which he will end with the statement that CFS is a

> made up disease, blah, blah. Look at the latest definition - most of

> it is taken from CFS studies  done on CFS patients.

>

[Guest guest]

Cort,

You are entitled to your opinion just as much as any person on this

list but it is your opinion only. You have not been appointed as a

supreme expert.

In your attack on Hyde, you tried to dismiss his writings on onset

as " a mess, disorganised and willing to twist the evidence " .

However, what Hyde wrote is taken from the works of Ramsay,

and all the old ME doctors who have written for decades on

ME.

If you are going to use " ME " as part of the description for your own

diease (and you do use it in your website), then please have the

courtesy to find out what ME is about.

In your website you claim to have CFS/FM and then up the top its now

ME/CFS.

I guess that you find the post from Nat difficult and launched your

attack on Hyde because it doesn't match your story. Your onset is not

as per a person with ME and that's why this discussion is hard for

you.

Maybe the description you gave Hyde's work could best be applied to

you.

[Guest guest]

Hi,Marti,

The term " non-HIV AIDS " seems indeed correct to me.

The research funding is a digrace!

All the funding goes to CBT and nothing to the doctors.

Strange to read this happens everywhere!

This raises the thought of importance for ME/CFIDS to stick together

and work together.

Action groups should work together internationally!

@kim.doll : losing/gaining weight :

I think this has to do with mitochondrial problems where your body

does not absorb the " food " it needs (losing weight) and thyroid

problems (gaining weight). Just my idea.

Greetings,

Dirk

> Hi Dirk,

> Well, I agree with you, even if no one else does. I don't care for

> CFS, ME is better. But AIDS certainly fits doesn't it.

>

> I saw Dr. Salvato in the late 90's and she was and still

is a

> big AIDS doctor. I felt I was in the right place. She did help me

> but not enough - I think I must have been one of her research

> subjects, as I only had a very narrow protocol and it wasn't

tailored

> to my issues.

>

> It did help (gluathione injections) but I needed more (correcting

the

> underlying methylation, perhaps).

>

> I have been a little bitter in the discrepancy between the funding

> AIDS has gotten vs our illnesses or many others. I comforted

myself

> by considering that any gains gotten for that illness could

possibly

> be transferred to our illnesses. I think that may have happened

but

> not as much as I had hoped.

>

> Thanks,

> Marti

>

[Guest guest]

HI,Cort,

In Belgium,tne Netherlands and Germany there is almost no funding for

medical research!!!

Even stronger, you do need to do the CBT in order to get an income

from healthcare. So, in some way, the government is forcing people to

do CBT; ignoring those who spend a fortune on proving

Rnase;reactivating EBV......

So, I think you are not correct in presenting this idea about funding!

Greetings,

Dirk

> From: dirk.goffin <fb980619@...>

> Subject: Re: Hyde Stress Amygdala

>

> Date: Sunday, July 6, 2008, 7:41 AM