Re: Do you want to educate some endocrinolgists?

[Guest guest]

In a message dated 1/5/07 7:55:51 PM Pacific Standard Time,

retrogrouch@... writes:

<< I'm wondering if I were to make such a contact if I could get some

folks who would want to sit on a " panel " for such a presentation.

>>

I'm all for it but where is it or would you do it online?

[Guest guest]

Hi there

This is a good idea and is happening frequently in the UK. For example the

Pituitary

Foundation [ cf http://www.pituitary.org.uk ] has at least one conference

annually, usually

their Annual conference where patients and medics get together for a week and

even share

same hotel accommodation if they wish. Also Nick has attended a UK conference

and

reported on it last year. Also in the UK we have a Patients Association which

has patients on

committees with medics and NHS managers. We also have buddy helplines for

various

illnesses including Thyroid, Stroke, Pituitary illnesses etc. where patients can

speak to

medics, nurses and/or " expert patients " . Finally some of the Royal Colleges such

as Royal

College of Surgeons have patients as lay-experts on committees.

Why these do not always bear the right fruit is that almost the whole world

legislates a

medic to practice as they see fit within certain guide-lines and so they can

practice as they

see fit as long as they comply with their codes.

As I reported last year I have contacted the UK's body NICE to ask that they

research the

diagnosis and treatment of Hypogonadism. This might take months or years as NICE

decide

what is priority of illness and so cancer and heart attacks etc will be a

priority over TRT on

most occasions. The Pituitary Foundation fought for guide-lines on HGH (Growth

Hormone)

and this was achieved a few years ago as reported on the Pituitary website.

Although

eventually all illnesses will be covered by NICE it is a slow progress. Each

European

country has its own process and then Canada and USA for North America -

International

Guide-lines as very slow to get.

Having said that: Bit by bit, step by step we need to aller things and an

excellent start is by a

few US patients attending the AACE - even getting onto committees as expert

patients or

asking your trusted medics who do TRT properly to join and then support them as

a team

effort.

Good luck

On 5 Jan 2007 at 17:01, retrogrouch@... wrote:

> The American Association of Clinical Endocrinologists is having their

> annual meeting and symposium in Seattle April 11-15.

>

> Their agenda is here:

> http://www.aace.com/meetings/ams/2007/index.php

>

> I live close by. I am contemplating contacting the event organizers to

> see if they would consider something along the lines of " what Endos

> can learn from hypogonadal patients " . It would be an opportunity to

> tell those who care to show up what living with this condition is

> really like, and more importantly how frustrating it is how little

> endos know about how to meaningfully treat the condition.

>

> I'm wondering if I were to make such a contact if I could get some

> folks who would want to sit on a " panel " for such a presentation.

>

> Anyone out there?

>

> I think this could be useful and good with real results for some guys

> down the line.

> -----

> " Anyone who has the power to make you believe absurdities has the

> power to make you commit atrocities. " - Voltaire

>

>

[Guest guest]

On Sat, 6 Jan 2007 03:16:00 EST, you wrote:

>In a message dated 1/5/07 7:55:51 PM Pacific Standard Time,

>retrogrouch@... writes:

>

><< I'm wondering if I were to make such a contact if I could get some

> folks who would want to sit on a " panel " for such a presentation.

> >>

>I'm all for it but where is it or would you do it online?

Seattle. April 11-15.

http://aace.com/

-----

" Anyone who has the power to make you believe absurdities has the

power to make you commit atrocities. " - Voltaire

[Guest guest]

Thanks for the note. I have approached the AACE by e-mail and asked

them to consider a patient panel, to learn the patient perspective on

hypo-g. I'll let folks know what I hear back (if anything.)

On Sat, 06 Jan 2007 18:18:29 -0000, you wrote:

>

>

>Hi there

>

>This is a good idea and is happening frequently in the UK. For example the

Pituitary

>Foundation [ cf http://www.pituitary.org.uk ] has at least one conference

annually, usually

>their Annual conference where patients and medics get together for a week and

even share

>same hotel accommodation if they wish. Also Nick has attended a UK conference

and

>reported on it last year. Also in the UK we have a Patients Association which

has patients on

>committees with medics and NHS managers. We also have buddy helplines for

various

>illnesses including Thyroid, Stroke, Pituitary illnesses etc. where patients

can speak to

>medics, nurses and/or " expert patients " . Finally some of the Royal Colleges

such as Royal

>College of Surgeons have patients as lay-experts on committees.

>

>Why these do not always bear the right fruit is that almost the whole world

legislates a

>medic to practice as they see fit within certain guide-lines and so they can

practice as they

>see fit as long as they comply with their codes.

>

>As I reported last year I have contacted the UK's body NICE to ask that they

research the

>diagnosis and treatment of Hypogonadism. This might take months or years as

NICE decide

>what is priority of illness and so cancer and heart attacks etc will be a

priority over TRT on

>most occasions. The Pituitary Foundation fought for guide-lines on HGH (Growth

Hormone)

>and this was achieved a few years ago as reported on the Pituitary website.

Although

>eventually all illnesses will be covered by NICE it is a slow progress. Each

European

>country has its own process and then Canada and USA for North America -

International

>Guide-lines as very slow to get.

>

>Having said that: Bit by bit, step by step we need to aller things and an

excellent start is by a

>few US patients attending the AACE - even getting onto committees as expert

patients or

>asking your trusted medics who do TRT properly to join and then support them as

a team

>effort.

>

>Good luck

>

>

>

>

>On 5 Jan 2007 at 17:01, retrogrouch@... wrote:

>

>> The American Association of Clinical Endocrinologists is having their

>> annual meeting and symposium in Seattle April 11-15.

>>

>> Their agenda is here:

>> http://www.aace.com/meetings/ams/2007/index.php

>>

>> I live close by. I am contemplating contacting the event organizers to

>> see if they would consider something along the lines of " what Endos

>> can learn from hypogonadal patients " . It would be an opportunity to

>> tell those who care to show up what living with this condition is

>> really like, and more importantly how frustrating it is how little

>> endos know about how to meaningfully treat the condition.

>>

>> I'm wondering if I were to make such a contact if I could get some

>> folks who would want to sit on a " panel " for such a presentation.

>>

>> Anyone out there?

>>

>> I think this could be useful and good with real results for some guys

>> down the line.

>> -----

>> " Anyone who has the power to make you believe absurdities has the

>> power to make you commit atrocities. " - Voltaire

>>

>>

>

>

>

[Guest guest]

Sorry Pete but the UK has absolutely nothing to crow about

whatsoever!!

We have no guidelines at all on hypogonadism as you rightly say, the

endocrinology society is horrendously backwards and conservative as

are most endocrinologists within the UK.

Most of the treatments available in the US are denied to UK patients

and diagnosis for hypogonadism is nothing short of a joke and a

complete postcode lottery.

As for NICE don't even get me started on what is one of the most

disgusting loathed " cost is everything, patients mean nothing "

organizations....I wouldn't vomit on anything those money minded

little shits have to say.

http://www.pmlive.com/pharm_market.cfm?showArticle=1 & ArticleID=4940

http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?

in_article_id=399510 & in_page_id=1774

http://www.alzheimers.org.uk/branchwebsites/westkent/lettertonice.htm

http://news.bbc.co.uk/1/hi/health/1059500.stm

http://www.lse.co.uk/ShowStory.asp?story=DB1331003V & catid=4

http://news.bbc.co.uk/1/hi/health/1426229.stm

http://www.nos.org.uk/ (5 news story osteoporosis treatment put

back 20 years by NICE)

http://www.telegraph.co.uk/health/main.jhtml?

xml=/health/2004/09/06/ndowns05.xml & sSheet=/health/2004/09/07/ixhmain.

html

The whole NHS is run according to a cost benefit analysis according

to NICE- patient health has nothing to do with it.

If they do get around to drawing up guidelines on hypogoandism you

can expect the UK to go swiftly backwards into the dark ages and for

more men to be denied treatment.

There have even been rumors of NICE pulling treatment for those few

adults receiving GH.

Take a look at the guidelines of Growth Hormone they are terrible,

and limit men with Growth Hormone deficiency to a life without the

correct medication based on judicious use of reference ranges and a

criteria that demands another pituitary hormone problem must exist.

As for the Pituitary org I see them doing absolutely nothing on the

disastrous treatment of hypogoandism in the UK, the same goes for

Growth hormone deficiency, thyroid disorders or for those with

pituitary based adrenal issues..

The very idea that we can offer anything to the USA and our retarded

endocrinologists is just utterly laughable in the blackest of

ways!!!!!

The US is literally decades ahead of us and will continue to remain

so.

Just to illustrate that point here are comparable official positions

on hypogonadism.

The US

AACE

http://www.aace.com/pub/pdf/guidelines/hypogonadism.pdf

Full guidelines totaling 18 pages brought together by 20 specialists

The Endocrine Society

http://www.endo-society.org/quickcontent/clinicalpractice/clinical-

guidelines/upload/AndrogensMenGuideline053006.pdf

Full guidelines totaling 32 pages brought together by 7 specialists

and a dozen or so organizations.

And the UK drum roll pleases………..

No guidelines, one page from two ultra conservative endocrinologists

as vague as you possible with no detail whatsoever.

http://www.endocrinology.org/policy/docs/testosterone.html

That above says everything anyone needs to know about the position in

the UK.

You want HCG in the UK odds are no chance unless you are talking

fertility size dosages, you want GH odds are forget it even if you

have osteoporosis, you want testosterone ethanate at 100mg each week

odds are forget it, you want a diagnosis and your total T is above 10

odds are forget it. Want a free testosterone test in the UK odds are

forget it.

This year I will be going to the world conferences in London for The

Society For The Study Of Androgen Deficiency. Some of the very best

endocrinologists from across the world will be there discussing the

latest developments/practices etc in the treatment of our condition.

It will be completely be ignored by the NHS by NICE by the

pituitary.org, by the Society for Endocrinology that deems us not

even worth of more than a page of writing.

The UK is to hypogonadism what Cuba is to capitalism!!!

>

> > The American Association of Clinical Endocrinologists is having

their

> > annual meeting and symposium in Seattle April 11-15.

> >

> > Their agenda is here:

> > http://www.aace.com/meetings/ams/2007/index.php

> >

> > I live close by. I am contemplating contacting the event

organizers to

> > see if they would consider something along the lines of " what

Endos

> > can learn from hypogonadal patients " . It would be an opportunity

to

> > tell those who care to show up what living with this condition is

> > really like, and more importantly how frustrating it is how little

> > endos know about how to meaningfully treat the condition.

> >

> > I'm wondering if I were to make such a contact if I could get some

> > folks who would want to sit on a " panel " for such a presentation.

> >

> > Anyone out there?

> >

> > I think this could be useful and good with real results for some

guys

> > down the line.

> > -----

> > " Anyone who has the power to make you believe absurdities has the

> > power to make you commit atrocities. " - Voltaire

> >

> >

>

>

>

[Guest guest]

The guys with low T at Meso are trying the same thing maybe you can get some

support with them.

http://forum.mesomorphosis.com/mens-health-forum/less-talk-more-action-134248737\

..html

Phil

retrogrouch@... wrote:

Thanks for the note. I have approached the AACE by e-mail and asked

them to consider a patient panel, to learn the patient perspective on

hypo-g. I'll let folks know what I hear back (if anything.)

On Sat, 06 Jan 2007 18:18:29 -0000, you wrote:

>

>

>Hi there

>

>This is a good idea and is happening frequently in the UK. For example the

Pituitary

>Foundation [ cf http://www.pituitary.org.uk ] has at least one conference

annually, usually

>their Annual conference where patients and medics get together for a week and

even share

>same hotel accommodation if they wish. Also Nick has attended a UK conference

and

>reported on it last year. Also in the UK we have a Patients Association which

has patients on

>committees with medics and NHS managers. We also have buddy helplines for

various

>illnesses including Thyroid, Stroke, Pituitary illnesses etc. where patients

can speak to

>medics, nurses and/or " expert patients " . Finally some of the Royal Colleges

such as Royal

>College of Surgeons have patients as lay-experts on committees.

>

>Why these do not always bear the right fruit is that almost the whole world

legislates a

>medic to practice as they see fit within certain guide-lines and so they can

practice as they

>see fit as long as they comply with their codes.

>

>As I reported last year I have contacted the UK's body NICE to ask that they

research the

>diagnosis and treatment of Hypogonadism. This might take months or years as

NICE decide

>what is priority of illness and so cancer and heart attacks etc will be a

priority over TRT on

>most occasions. The Pituitary Foundation fought for guide-lines on HGH (Growth

Hormone)

>and this was achieved a few years ago as reported on the Pituitary website.

Although

>eventually all illnesses will be covered by NICE it is a slow progress. Each

European

>country has its own process and then Canada and USA for North America -

International

>Guide-lines as very slow to get.

>

>Having said that: Bit by bit, step by step we need to aller things and an

excellent start is by a

>few US patients attending the AACE - even getting onto committees as expert

patients or

>asking your trusted medics who do TRT properly to join and then support them as

a team

>effort.

>

>Good luck

>

>

>

>

>On 5 Jan 2007 at 17:01, retrogrouch@... wrote:

>

>> The American Association of Clinical Endocrinologists is having their

>> annual meeting and symposium in Seattle April 11-15.

>>

>> Their agenda is here:

>> http://www.aace.com/meetings/ams/2007/index.php

>>

>> I live close by. I am contemplating contacting the event organizers to

>> see if they would consider something along the lines of " what Endos

>> can learn from hypogonadal patients " . It would be an opportunity to

>> tell those who care to show up what living with this condition is

>> really like, and more importantly how frustrating it is how little

>> endos know about how to meaningfully treat the condition.

>>

>> I'm wondering if I were to make such a contact if I could get some

>> folks who would want to sit on a " panel " for such a presentation.

>>

>> Anyone out there?

>>

>> I think this could be useful and good with real results for some guys

>> down the line.

>> -----

>> " Anyone who has the power to make you believe absurdities has the

>> power to make you commit atrocities. " - Voltaire

>>

>>

>

>

>

[Guest guest]

Hi chris

Happy New Year!

> Sorry Pete but the UK has absolutely nothing to crow about

> whatsoever!!

>

Firstly you totally misread what I wrote and what my intentions were in

responding to the

very interesting posted message and one I whole-heartedly support. I did not

" crow " nor did

I wish to " crow " as my email was to support patient involvement something I feel

the 2

Hypogonadism groups fail to do proactively enough.

> We have no guidelines at all on hypogonadism as you rightly say, the

> endocrinology society is horrendously backwards and conservative as

> are most endocrinologists within the UK.

>

I did not write about the merits of UK, USA treatments but the merits of patient

involvement

plus even in a Nation where patient involvement is almost everywhere this does

not always

produce the results needed.

Secondly I pointed out a patient involvement in the UK which is fairly active

here but not so

active in some other countries. Why would someone in this Group from the USA

suggest

patient involvement in the USA and ACCE if it was already advanced and

flourishing?If

ACCE, who do have guide-lines on Hypogonadism, already have patient involvement

why

post a message saying this is a suggestion instead of suggesting we merely join

the existing

patient group at ACCE?

I pointed out that the effect of patient involvement was not as encouraging as

some might

think; Viz:

> > Randle stated: Why these do not always bear the right fruit is that

almost the

> whole world legislates a

> > medic to practice as they see fit within certain guide-lines and so

> they can practice as they

> > see fit as long as they comply with their codes.

> >

I have worked in US, Canada and Europe and feel able to comment on International

professional matters. I am aware of International practices and have them in

perspective as

I am qualified for North America and EU. If I thought that by flying to the USA

my endocrine

illness which causes me so many problems would be immediately reversed I would

fly

ASAP. In fact, I expect you would.. The very posted msg to which I replied was a

USA

based patient feeling more was needed.

I think there is no point in my responding point by point to your email as your

reply mistakes

my basic premise. However, as to Nice. It makes not a slightest difference in

the solving

any NHS problems what we think of NICE. this is the process and so we have to

deal with

the process if we wish to effect change. On the matter of the Pituitary

Foundation they are

founded for Pituitary matters and Hypogonadism is not entirely a Pituitary

matter neither is it

a major part of Pituitary clinical work and on their involvement with Pituitary

illness and

specifically Growth Hormone you are wrong, however, that does not mean I feel

the PF is

perfect, doing its best it just means I am making a balanced statement:

________

NICE: History 2001-03

Early in 2001 the department of Health gave the National Institute for Clinical

Excellence (NICE)

the task to appraise both the clinical effectiveness and cost effectiveness of

Human Growth

hormone (GH). That appraisal was divided into separate appraisals for children

and for adults.

The Foundation was invited to participate, and we embarked on this task with

some trepidation.

We sought a positive outcome from the NICE appraisal that would help to overcome

the post-

code lottery for funding of GH.

We had no idea how much time and energy would be required.

Our Submission

In the June 2001 Patsy Perrin, a Trustee, devised and analysed a questionnaire

completed by 360

members which, at the time, represented 23% of all GH adult patients. The

Foundation´s

submission, promoting the clinical and cost effectiveness of GH for adults was

based on both

evidence from endocrinologists and the findings of this questionnaire.

The next stage was a meeting in November 2001 with the Appraisal committee at

which Patsy

was joined by Dr Janet Harbour and many eminent endocrinologists representing

the professional

bodies. The NICE committee considered the Assessment report commissioned by NICE

and the

input from the participants. The experience was not good. As a result of our

protests a second

Assessment report was commissioned and the Appraisal meeting reconvened.

The Initial Rocky Appraisal Process

In April 2002 NICE published its first provisional findings, saying that

" based on evidence of Random Control Trials the effectiveness of

Somatotrophin

treatment in adults with GH deficiency in terms of quality of life remains

unproven. "

Together with the clinicians we took due issue with many points. The Appraisal

Committee stuck

to their views and when the FAD (Final Appraisal Determination) was published

saying that no-

one could have GH we determined to Appeal.

One of the worse aspects of the appraisal was the blanket of confidentiality

NICE imposed which

limited our access to patients and their carers, to tell them what was happening

and to enable

them to take a wider role in the appraisal. It caused an indeterminate amount of

stress for many

people. (Appraisals that started after ours were not subject to this

restriction.)

The Appeal

We were allowed to appeal against the decision, under categories determined by

NICE, and

produced a very robust appeal against the FAD.

At the same time we...

* Encouraged our members to contact their MPs, and hundreds responded,

* Took advantage of the recent review of NICE carried out by the Parliamentary

Health

Select Committee. We quoted parts of the Health Select report in our appeal

document,

* Reported progress to members of the Health Select Committee,

* Were delighted that Mr Berry, MP for Kingswood, Bristol tabled an

Early Day

Motion No 1683 concerning the negative view of adult GH taken by NICE.

The Appeal hearing held in August 2002 and chaired by Sir Rawlings the

Chairman of

NICE, was an interesting meeting.

A healthy number of the appeal points raised by ourselves and our fellow

appellants were

successfully upheld.

The appraisal was referred back to the Appraisal Committee for reconsideration

of several points,

including the all-important selection criteria.

To our great delight the confidentiality restriction was lifted and information

could be published.

We realised that we were the first technology appraisal to have won their appeal

and to have a

`second round´.

Creating new ground - a second round.

So we embarked on another round of documents, arguments and meetings to

determine three key

points. These were:

* The identification of a group of GH deficient adults who would derive the

most benefit

from hormone replacement therapy (in terms of cost-effectiveness), and to

develop

selection criteria for this group if possible.

* Guidance relating to the continuation of treatment into adulthood for

children who have

been receiving GH therapy, and

* To ensure that any particular needs of survivors of childhood cancer with

`iatrogenic´

(caused by people) pituitary failure are adequately considered.

The confidentiality restrictions were lifted, so the appraisal was at last being

treated in the same

way as other appraisals.

Together with the Society for Endocrinology, we proposed to NICE that a

preparatory meeting

might be held with them to map out how the remainder of the appraisal might be

conducted. That

historic meeting was held in late November 2002 and involved ourselves, the

professionals and

the pharmaceutical companies.

So the process started again with an Appraisal meeting, a provisional and the

final decision

(FAD). Again we identified issues and prepared for a second appeal meeting in

July 2003.

The second Appeal

Despite the fact that the appeal panel members should " have no prior involvement

in the appraisal

in question " , this was chaired again by Sir Rawlins. We fought to win

the right for

existing adult patients to be able to stay on treatment, and not to have to

`pass the tests´ -

although this has not been acknowledged as an `upheld´ point in the appeal

documentation. In fact

we are deemed to have misinterpreted this point.

Situation at the end of August 2003

The guidelines were published on NICE ´s website on 27th August 2003.

Together with the endocrinologists we believed that we could live with the

proposals and urged

NICE to produce a swift outcome so that there could be clarity about the

provision of GH for

adults.

In turn we hoped that this will turn out to be a powerful tool in combating

post-code funding of

GH by Area Health Authorities, Primary Care Trusts and general hospitals.

Last Updated ( Friday, 15 September 2006

> The US is literally decades ahead of us and will continue to remain

> so.

Thirdly, your premise will always be true if no one sets-out to solve problems.

The

history books are full of examples of others outside the USA making advances

including current examples. However, I feel that is the wrong way to look at

these

problems. With global markets and global outlooks the main problem is to get

someone on this planet to try and work on the problem and for that to be

accessible

everywhere. All treatments as I fair as I can tell in the USa are available to

anyone

travelling to the USA and with sufficient money which is the American way and

American dream. Not everyone will be President but anyone can try. Treatments

are

available in the so-called capatalist market place. When I worked in USA I

bought a

full copy of Spy-catcher which I brought back to England. I was no denied

because

the UK banned the book.

Anyhow, I wish to reiterate my original email. I strongly support the use of

patient

involvement and involvement within the National and International Organisations

such

as ACCE. Based on the strong patient involvement here in the UK, I do not feel

this

will immediately or rapidly solve the problem but " bit by bit and step by step "

we need

to do at least something!.

On 6 Jan 2007 at 23:00, chis_az wrote:

> Sorry Pete but the UK has absolutely nothing to crow about

> whatsoever!!

>

> We have no guidelines at all on hypogonadism as you rightly say, the

> endocrinology society is horrendously backwards and conservative as

> are most endocrinologists within the UK.

>

> Most of the treatments available in the US are denied to UK patients

> and diagnosis for hypogonadism is nothing short of a joke and a

> complete postcode lottery.

>

> As for NICE don't even get me started on what is one of the most

> disgusting loathed " cost is everything, patients mean nothing "

> organizations....I wouldn't vomit on anything those money minded

> little shits have to say.

>

> http://www.pmlive.com/pharm_market.cfm?showArticle=1 & ArticleID=4940

>

> http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?

> in_article_id=399510 & in_page_id=1774

>

> http://www.alzheimers.org.uk/branchwebsites/westkent/lettertonice.htm

>

> http://news.bbc.co.uk/1/hi/health/1059500.stm

>

> http://www.lse.co.uk/ShowStory.asp?story=DB1331003V & catid=4

>

> http://news.bbc.co.uk/1/hi/health/1426229.stm

>

> http://www.nos.org.uk/ (5 news story osteoporosis treatment put

> back 20 years by NICE)

>

> http://www.telegraph.co.uk/health/main.jhtml?

> xml=/health/2004/09/06/ndowns05.xml & sSheet=/health/2004/09/07/ixhmain.

> html

>

> The whole NHS is run according to a cost benefit analysis according

> to NICE- patient health has nothing to do with it.

>

> If they do get around to drawing up guidelines on hypogoandism you

> can expect the UK to go swiftly backwards into the dark ages and for

> more men to be denied treatment.

>

> There have even been rumors of NICE pulling treatment for those few

> adults receiving GH.

>

> Take a look at the guidelines of Growth Hormone they are terrible,

> and limit men with Growth Hormone deficiency to a life without the

> correct medication based on judicious use of reference ranges and a

> criteria that demands another pituitary hormone problem must exist.

>

> As for the Pituitary org I see them doing absolutely nothing on the

> disastrous treatment of hypogoandism in the UK, the same goes for

> Growth hormone deficiency, thyroid disorders or for those with

> pituitary based adrenal issues..

>

> The very idea that we can offer anything to the USA and our retarded

> endocrinologists is just utterly laughable in the blackest of

> ways!!!!!

>

> The US is literally decades ahead of us and will continue to remain

> so.

>

> Just to illustrate that point here are comparable official positions

> on hypogonadism.

>

> The US

>

> AACE

>

> http://www.aace.com/pub/pdf/guidelines/hypogonadism.pdf

>

> Full guidelines totaling 18 pages brought together by 20 specialists

>

> The Endocrine Society

>

> http://www.endo-society.org/quickcontent/clinicalpractice/clinical-

> guidelines/upload/AndrogensMenGuideline053006.pdf

>

> Full guidelines totaling 32 pages brought together by 7 specialists

> and a dozen or so organizations.

>

>

> And the UK drum roll pleases...........

>

> No guidelines, one page from two ultra conservative endocrinologists

> as vague as you possible with no detail whatsoever.

>

> http://www.endocrinology.org/policy/docs/testosterone.html

>

> That above says everything anyone needs to know about the position in

> the UK.

>

> You want HCG in the UK odds are no chance unless you are talking

> fertility size dosages, you want GH odds are forget it even if you

> have osteoporosis, you want testosterone ethanate at 100mg each week

> odds are forget it, you want a diagnosis and your total T is above 10

> odds are forget it. Want a free testosterone test in the UK odds are

> forget it.

>

> This year I will be going to the world conferences in London for The

> Society For The Study Of Androgen Deficiency. Some of the very best

> endocrinologists from across the world will be there discussing the

> latest developments/practices etc in the treatment of our condition.

> It will be completely be ignored by the NHS by NICE by the

> pituitary.org, by the Society for Endocrinology that deems us not

> even worth of more than a page of writing.

>

> The UK is to hypogonadism what Cuba is to capitalism!!!

>

>

>

>

>

>

>

>

>

>

> >

> > > The American Association of Clinical Endocrinologists is having

> their

> > > annual meeting and symposium in Seattle April 11-15.

> > >

> > > Their agenda is here:

> > > http://www.aace.com/meetings/ams/2007/index.php

> > >

> > > I live close by. I am contemplating contacting the event

> organizers to

> > > see if they would consider something along the lines of " what

> Endos

> > > can learn from hypogonadal patients " . It would be an opportunity

> to

> > > tell those who care to show up what living with this condition is

> > > really like, and more importantly how frustrating it is how little

> > > endos know about how to meaningfully treat the condition.

> > >

> > > I'm wondering if I were to make such a contact if I could get some

> > > folks who would want to sit on a " panel " for such a presentation.

> > >

> > > Anyone out there?

> > >

> > > I think this could be useful and good with real results for some

> guys

> > > down the line.

> > > -----

> > > " Anyone who has the power to make you believe absurdities has the

> > > power to make you commit atrocities. " - Voltaire

> > >

> > >

> >

> >

> >

[Guest guest]

Pete,

If I misinterpreted what you were initially saying then I apologise,

I also apologise for the use of the term crowing, as it wasn't

helpful. What I will not apologise for is ripping to pieces the NHS,

NICE, the Pituitary.org, the guidelines on the treatment of GH etc

etc etc.

Your post rebuffing what I have had to say amounts to a work of epic

tolstoyan proportions and not something that one can comment on.

I tell you what though, If you put your salient points in bullets, I

will with evidence pull them to pieces. I am perfectly aware just how

appalling the state of play is in the UK, and with all due respect I

am propably equally if not more aware of the international position

than yourself. I wish I were wrong regarding the UK situation and but

I am unfortunately correct.

Oh and I would jump on a plain quite frankly, however I cannot afford

to do that given my financial situation and ill health, catch 22.

P.S

I regularly speak to people in the UK who are fighting our most

appaling system. When problems are less straightforward, it can

sometimes be much worse for the patient getting a diagnosis and

treatment and I have lots of experience of this both personal and

from that of speaking to other men- with all due respect I am not

sure you have experienced the ugly side of this quite so much.

> > >

> > > > The American Association of Clinical Endocrinologists is

having

> > their

> > > > annual meeting and symposium in Seattle April 11-15.

> > > >

> > > > Their agenda is here:

> > > > http://www.aace.com/meetings/ams/2007/index.php

> > > >

> > > > I live close by. I am contemplating contacting the event

> > organizers to

> > > > see if they would consider something along the lines of " what

> > Endos

> > > > can learn from hypogonadal patients " . It would be an

opportunity

> > to

> > > > tell those who care to show up what living with this

condition is

> > > > really like, and more importantly how frustrating it is how

little

> > > > endos know about how to meaningfully treat the condition.

> > > >

> > > > I'm wondering if I were to make such a contact if I could get

some

> > > > folks who would want to sit on a " panel " for such a

presentation.

> > > >

> > > > Anyone out there?

> > > >

> > > > I think this could be useful and good with real results for

some

> > guys

> > > > down the line.

> > > > -----

> > > > " Anyone who has the power to make you believe absurdities has

the

> > > > power to make you commit atrocities. " - Voltaire

> > > >

> > > >

> > >

> > >

> > >

[Guest guest]

RESPONDED TO PRIVATELY

_________________

On 7 Jan 2007 at 21:49, chis_az wrote:

> Pete,

>