Re: The nitty-gritty of TPA-UK!

[Guest guest]

Thank you Sheila. This forum has been my lifeline...its members my

friends. That's what I need.

xx

> We have members who are desperate to know why their normal health has

not been returned through the NHS, and need members who will be

prepared to do whatever they can to help their fellow sufferers find

the reason why, and give them information they will understand.

>

>

> I would suggest to those members who want the black and

white 'science - the whole 'science' and nothing but the 'science' -

that they find a forum elsewhere.

>

> Sheila

>

[Guest guest]

Well said, Sheila. Perhaps once we are all well we shall have the

time and energy to research these issues!

Miriam

>

There is a lot of energy being expended answering and debating things

that are not of any great importance to our members, or to the work we

are involved in.

[Guest guest]

Great stuff Sheila,

Thanks. From one very relieved member, whose normal health is

returning thanks only to the good folk and good practice of tpa.

x

> Thank you Sheila. This forum has been my lifeline...its members my

> friends. That's what I need.

>

>

> > We have members who are desperate to know why their normal health

has

> not been returned through the NHS, and need members who will be

> prepared to do whatever they can to help their fellow sufferers

find

> the reason why, and give them information they will understand.

> >

> >

> > I would suggest to those members who want the black and

> white 'science - the whole 'science' and nothing but the 'science' -

> that they find a forum elsewhere.

> >

> > Sheila

> >

>

[Guest guest]

Well said Sheila

B

[Guest guest]

>

> On this forum Home Page, it states categorically that -

>

> " TPA-UK is a campaigning/support group set up to increase awareness

of the prevalence of thyroid problems and the difficulties facing

patients in getting a diagnosis and appropriate treatment.

>

>> dear sheila; thank you for your stance. i wouldn't feel as well

as i do without the support and information i found on this site,

don't change a thing, it works beautifully as it is !! jane

>

> Thank you Sheila, for your reply.

>

> And thank you , although my answer was specifically directed

to

> Sheila. I don't want to come across as unfriendly, but who are

you? I

> know Sheila and trust her knowledge and experience implicitly,

indeed,

> with my life, as that's what it comes down to, but I don't know

you

> and your enthusiastic contributions on this forum over the last

few

> days have left me feeling uneasy, to say the least.

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[Guest guest]

I disagree for the following reasons:

1. Our numbers of members or even of all those stricken with

continuing symptoms in spite of diagnosis and treatment are not

large enough to be a political force.

2. Consequently, we must convince folks that something must be done

somewhere besides the polls.

3. Supposedly, medicine is a scientific endeavor.

4. Consequently, it is the science that is going to make the

argument, whether it is between patient and physician or

barrister/attorney and the judge and jury. We can not go in either

realm with arm waving arguments, tears, or pleas.

5. One thing that can be done is to destroy Weetman's " functional

somatoform disorder " diagnosis so that physicians can not take the

easy way out and blame you the patient for imagining your problems.

We can destroy the " nonspecific symptom " diagnosis similarly because

there is something wrong and until all potential physical reasons

have been tested and eliminated, the " functional somatoform

disorder " and " nonspecific symptom " diagnoses are simply

malpractice. And we should say so in no uncertain terms right to

the authorities -- but that requires science to point up the

alternative physical potentials.

About the only thing that one might suggest is an easier tone in the

debates. But that is not nearly as important as the reality, which

is that hearing an objection to a statement here is far, far more

advantageous that hearing it in court or any other place that

influences people. The fact, that I need to check, is Chuck's

objection to the 8-hour half life of T3 because his view makes my

case better -- perhaps even much better: T3 is not so dangerous as

the American Thyroid Association and the hypothyroidism paradigm

claim. And that is important to us all.

This will be important because if T3 is not dangerous as claimed,

then the government has no reason to support the medical

association's ban or discouragement of T3 prescriptions. If there

is no reason for the government to do so, then there is no action

possible against physicians who do prescribe T3. And then we all

get better because the physicians will be more willing to help.

Although this is a long term issue, some physicians, who place

medical ethics and the care of patients foremost will listen to well

made arguments. And these arguments have to better than the arm

waving done by the endocrinology establishment because the

estabishment has the power.

If the members pick up on the science and their physician sweeps

their arguments away with something we know to be vacuous, then the

members will know positively that they should find another physician.

Certainly, that has been my wife's and my experience. We have seen

three endocrinolists. We kept moving from one to another because

the first two just did not practice as the science suggests. The

first one that I saw suggested that my symptoms were " nonspecific "

and proceeded to do nothing. Subsequently, I have learned two

important things. First, I am truly hormone deficient, albeit of a

different hormone. Second, hormone effects are not seperate and

distinct. They do overlap. The first endocrinologiest that I saw

quit. He did not continue the search beyond deficient secretion by

the thyroid. He failed. And we have made this point abundently

clear to our primary physician so that other will not have to suffer

as we have.

My work has helped about ten folks that I know of. However, there

is a million more. It would be nice to see these folks cared for

properly, but doing that one on one will see virtually all of those

people dead before they can get their lives back. We must always

remember that while it is nice to have individual successes, there

is a virtual sea of similarly situated folks who need help too.

We really need to do both, somehow.

Have a great day,

> It seems certain new members appear to be challenging everything

this forum writes, demanding 'credible evidence' for everything, and

to back what we say with 'peer reviewed' research papers. I am not a

scientists, I am not medically qualified and I will not be

challenged to produce these, nor will I have the

information 'challenged' regarding what Dr Peatfield (our Patron and

Medical Adviser) writes.There is a lot of energy being expended

answering and debating things that are not of any great importance

to our members, or to the work we are involved in.

[Guest guest]

Thanks Sheila

I find that despite being thought of as an intelligent person the

science bits that have been posted recently just go way over my head.

I joined this group as a support group as I have only been diagnosed a

month. I can't afford private tests and treament so I am reliant on the

NHS. I am happy to take synthetic thyroxine as there is no way I would

take porcine thyroxine due to animal issues. I don't need or want the

science bit as I prefer to deal with what is happening now, how I feel

now and what I can do to change it or how I can live with it.

What has helped is having people here who tell me " yes, that's part of

hypothyroidism " , or advocate seeing an endo if I can get a referral.

Just knowing I'm not alone is a big help.

JenM

[Guest guest]

,

Thanks for your defense of accurate information.

You wrote:

> ...The fact, that I need to check, is Chuck's

> objection to the 8-hour half life of T3 because his view makes my

> case better -- perhaps even much better: T3 is not so dangerous as

> the American Thyroid Association and the hypothyroidism paradigm

> claim. And that is important to us all....

I think this is a real vulnerability for both ATA and BTA. In both

cases, the " experts " were quoting a half life for rats, when they should

have known the value for humans has been measured many times to be much

larger. The fact that this mistake also invalidates their safety

argument makes it a double whammy.

I am still confused as to why my pointing this out to Sheila made me

such an arrogant villain.

Chuck

[Guest guest]

People are on this forum because they are believers...believers in the

fact that the NHS is failing us. Believers in their own symptoms and

the symptoms of all those others denied a proper diagnosis. We do need

to argue the case for better diagnosis and treatment and we are. But

we don't need to argue with each other. Its preaching to the

converted....we need to be a united front, AND a caring community.

>

[Guest guest]

I dont see any of this as arguing or critisism, I see it all as

constructive debate which is vitally important for both scientists and

patients. Scientific papers have been cried out for many times on

this forum. No-one will ever get themselves well without true facts.

Chris

[Guest guest]

-Hi every one. I agree we do need good solid information and debate.

But also remember potential new members can be vulnerable and nervous

and can be easily put off if they see to much technical post when

they first look in.We need a wide base to work from.

Best wishes

keith

-- In thyroid treatment , chrischids

<no_reply@...> wrote:

>

> I dont see any of this as arguing or critisism, I see it all as

> constructive debate which is vitally important for both scientists

and

> patients. Scientific papers have been cried out for many times on

> this forum. No-one will ever get themselves well without true

facts.

>

> Chris

>

[Guest guest]

Absolutely , even speaking as an existing member,

All the recent science has been a little off putting! A particular

strength of tpa is members' ability to share useful information,

based on the science of experience, in everyday speak.

Too much technical language alters the tone, in my own opinion, that

is.

Night all, sleep well.

x

> and can be easily put off if they see to much technical post when

> they first look in.We need a wide base to work from.

>

> Best wishes

> keith

>

>

>

>

>

>

> -- In thyroid treatment , chrischids

> <no_reply@> wrote:

> >

> > I dont see any of this as arguing or critisism, I see it all as

> > constructive debate which is vitally important for both

scientists

> and

> > patients. Scientific papers have been cried out for many times

on

> > this forum. No-one will ever get themselves well without true

> facts.

> >

> > Chris

> >

>

[Guest guest]

Thank God somebody gets it. If you're going to buck the establishment

scientists [who are getting away with the crock you're suffering from]

with any hope of success you're going to have to use science. Period.

Otherwise nothing you present will be accepted as [dare I say it???]

credible.

..

..

>

> Posted by: " ekp290340 " ekpritchard@...

>

<mailto:ekpritchard@...?Subject=%20Re%3A%20The%20nitty-gritty%20of%20TP\

A-UK%21>

> ekp290340 <ekp290340>

>

>

> Mon Sep 1, 2008 9:41 am (PDT)

>

> I disagree for the following reasons:

>

> 1. Our numbers of members or even of all those stricken with

> continuing symptoms in spite of diagnosis and treatment are not

> large enough to be a political force.

[Guest guest]

HI and everybody

Every cloud has a silver lining, and we think we have found ours. We have now decided that we will open a new forum for scientists. Membership will be by invitation only to those who want to help us in our campaigning, a place where they can be left to do their work unhindered by we unscientific mortals.

There is a lot of work to do and from previous campaigns conducted on this forum, I personally know how difficult it can be to do the necessary research, especially when one has no experience of this, so it is great that we now have at least 3 scientists prepared to help us - and bless us all, who do know what they are doing. As soon as the new forum has been set up and in place, we will let you all know. The scientists will still be members of the main forum of course, and you can ask questions when you need the science behind a particular theory, but this forum will continue to run as it always has, with the recommendations we have always used still coming from our four medication advisers - but, we will not be asking for those recommendations to be backed up with 'credible evidence' each time we give them out.

I hope this move will now help us get back to some normality and keep this place safe and friendly for our members who need help and support.

Luv - Sheila

-Hi every one. I agree we do need good solid information and debate. But also remember potential new members can be vulnerable and nervousand can be easily put off if they see to much technical post when they first look in.We need a wide base to work from.Best wisheskeith

..

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[Guest guest]

> 5. One thing that can be done is to destroy Weetman's " functional

> somatoform disorder " diagnosis so that physicians can not take the

> easy way out and blame you the patient for imagining your problems.

We have the same situation with ME/CFS. I am currently ploughing my

way (with the aid of a dictionary!) through " The Clinical and

Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue

Syndrome " , a Nightingale Research Foundation publication. There is a

section on psychiatry including a couple of papers criticising the

research giving the somatization explanations for CFS.

One interesting point, (page 498) is that " the case for depression

consistently producing immunosuppression is weak, even when the

immunosuppression is measured during the depression " . In other words,

there isn't much evidence for the view that depression leads to

immunosuppression and consequently to the many and varied symptoms of

ME/CFS.

Miriam

[Guest guest]

>

> HI and everybody

>

> Every cloud has a silver lining, and we think we have found ours. We

>have now decided that we will open a new forum for scientists.

>Membership will be by invitation only to those who want to help us in

>our campaigning

Brilliant idea Sheila. Can those of us who are not scientists but are

really interested in that side of things join the forum? If not,

that's understandable and fine. It's a huge step in the right

direction. Well done for thinking of it!

x

[Guest guest]

Hi Sheila,

A development that underlines tpa's strengths and ability to develop.

Great that tpa will remain the safe and friendly place for help and

support that I have always found it to be.

Thank you. Don't work TOO HARD will you.

Enjoy Tuesday,

Love,

x

> Every cloud has a silver lining, and we think we have found ours. We

have now decided that we will open a new forum for scientists.

I hope this move will now help us get back to some normality and keep

this place safe and friendly for our members who need help and support.

>

> Luv - Sheila

>

[Guest guest]

Anybody will be welcome to join, so long as they realise that forum will be totally scientific and will not be expecting support there. That will remain on the main forum. However, everybody will have to ask for an invitation - it will be open for anybody to joion.

And this was a joint idea - I had decided this is what we needed last night, and I saw that Gill had thought of the same idea too - so - great minds think alike.

Luv - Sheila

Brilliant idea Sheila. Can those of us who are not scientists but are really interested in that side of things join the forum? If not, that's understandable and fine. It's a huge step in the right direction. Well done for thinking of it! x

No virus found in this incoming message.Checked by AVG - http://www.avg.com Version: 8.0.169 / Virus Database: 270.6.14/1646 - Release Date: 01/09/2008 18:03

[Guest guest]

My guess is that it is high cortisol from stressed adrenals which

leads to immune suppression as would high doses of supplementary

cortisol.

I am awaiting an appt with the local CFS clinic in October. I wonder

if they check the adrenals?

Anyone know?

Mo

>

> > 5. One thing that can be done is to destroy Weetman's " functional

> > somatoform disorder " diagnosis so that physicians can not take the

> > easy way out and blame you the patient for imagining your

problems.

>

> We have the same situation with ME/CFS. I am currently ploughing my

> way (with the aid of a dictionary!) through " The Clinical and

> Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue

> Syndrome " , a Nightingale Research Foundation publication. There is

a

> section on psychiatry including a couple of papers criticising the

> research giving the somatization explanations for CFS.

>

> One interesting point, (page 498) is that " the case for depression

> consistently producing immunosuppression is weak, even when the

> immunosuppression is measured during the depression " . In other

words,

> there isn't much evidence for the view that depression leads to

> immunosuppression and consequently to the many and varied symptoms

of

> ME/CFS.

>

> Miriam

>

[Guest guest]

Well done Sheila for thinking of a seperate scientific group, I'd just

been thinking of such a thing and then I read your post. I do realise

that we may need the science bit to change things for those who are not

adequately treated by the NHS and a scientific group would fulfill this

leaving this forum for day to day support.

JenM

[Guest guest]

dear sheila

excellent idea, whose a clever girl then ?

jane

[Guest guest]

Hi Sheila,

So if we are asking a technical question of the scientists - do we ask it here or there?

Val

Anybody will be welcome to join, so long as they realise that forum will be totally scientific and will not be expecting support there. That will remain on the main forum. However, everybody will have to ask for an invitation - it will be open for anybody to joion.Luv - Sheila

[Guest guest]

Hi Chuck

10:00 a.m. and 10:00 p.m. are where the FT3 crossed the center line.In a 24 hour cycle, you have two zero crossings, and they are right where the arrythmia stabilized

This looks like a clue to me, that the half-life for Free T3 must be less than 12 hours else how would it vary rapidly enough to follow this track, causing two 'active' zero crossings in a 24hr period.

Logically, a mechanism of degradation/inactivation has to have evolved to keep track of a 24 hr day, and it would be correspondingly illogical for it to have evolved a half-life of more than 24hrs when the daily requirement is ~ that it (T3) should be 'responsive' well within that period !

A 'periodic' model with a half-life built-in ought to show the limits of the 'possible'.

The et al 2008 'model' should 'fit'....

Bob

-- In thyroid treatment , <gumboyaya@...> wrote:> Bob, , and Sheila,> This paper is one that gives the T3 serum half life other than 8 hours.

[Guest guest]

Bob,

You wrote:

>

> 10:00 a.m. and 10:00 p.m. are where the FT3 crossed the center line.

> In a 24 hour cycle, you have two zero crossings, and they are right

> where the arrythmia stabilized

>

> This looks like a clue to me, that the half-life for Free T3 must be

> less than 12 hours else how would it vary rapidly enough to follow this

> track, causing two 'active' zero crossings in a 24hr period.

They are not connected. The half life applies to an exponential decay

curve that can becomes apparent (dominates) if there is no T3 input,

either from conversion or ingestion. Therefore the oscillation is

entirely on the input side. T4 and TSH both have much longer half lives,

yet they also follow the 24 circadian period.

When you have a combination of daily sinusoidal function riding on an

exponential decay, the period of the oscillation is not connected to the

decay curve. The half life could be infinite, and you would still have

one high peak and two zero crossings.

Chuck

[Guest guest]

Hiya

I will be joining GabLab.

I quite like the science papers, sometimes I can even understand them

hehe.

Is it possible that if a topic is open and someone has posted science

about it they could post a link in the thread to it on Gablab? Bob

used to point me to some cool stuff.

thanks

God bless

Dawnx