feedback
This page contains Feedback we've received from Feb 1997 through March 1997:


Date: Fri, 21 Mar 1997 12:45:02 +0000
From: Gill_P

     I've read about your internet site but unfortunatley don't have 
     internet access but have e-mail access . My sister has secondary 
     breast cancer and is currently undergoing chemo as part of a clincal 
     trial at St James Hospital in Leeds.
     She is aware of most of the national support/info groups i.e. BACUP , 
     Breakthrough but is looking for more support in terms of  :-
     
     1) support groups / counselling. She has 3 very young children and 
     copes on a practical level but is struggling very much to come to 
     terms with the emotional side.
     2) nutritional info . We are currently trying to wade through all the 
     detox diets available Gerson, Anne Frahm, Bristol diet etc.. and 
     are struggling to find any nutritionalists in our area (north east / 
     yorkshire)  who can help.   
     
     If there is any info you feel may help please contact me.
     
     thank you
     Gill P

To: Gill_P

Hello Gill,

>     I've read about your internet site but unfortunatley don't have 
>     internet access but have e-mail access .

Glad to hear from you. Where did you here about the site? 

>     My sister has secondary 
>     breast cancer and is currently undergoing chemo as part of a clincal 
>     trial at St James Hospital in Leeds.

I am sorry to hear this, it must be tough on both of you. 

Is your sister having high-dose chemo? Are all of the women in the trial at 
St. James' and do they all have secondary breast cancer? 

>     She is aware of most of the national support/info groups i.e. BACUP , 
>     Breakthrough but is looking for more support in terms of  :-
>     
>     1) support groups / counselling. She has 3 very young children and 
>     copes on a practical level but is struggling very much to come to 
>     terms with the emotional side.

I think I belong to the only support group specifically for women with secondary 
breast cancer in the country, and that is held once a month at St. Thomas' Hospital 
in London, though women do not have to be treated at St. Thomas' to come to the 
group. I have been in this group since Nov 95 and it has been helpful to me emotionally 
and also practically in terms of state benefit info, info on treatments and side-effects, 
etc. There are several women with children in the group.

There was an article about the group in the 26 Feb issue of the Nursing Times 
written by Rosemary Burch, one of the group's two facilitators. If you can't get 
hold of a copy, I could post you a xerox (I don't have a fax). You could also phone 
Rosemary Burch (no. below), she is the breast care nurse at St. Thomas and knows 
many other breast care nurses around the country and might be able to suggest 
sources of support. Is there a useful breast care nurse at St. James'? I know a 
group in London is not much help to your sister, but perhaps a group could 
get started in Leeds.

There was a Channel 4 programme about the woman who started the St. Thomas' 
group called Alison's Story in Oct 1995 and out of follow-up to that was formed 
C4ward, a group working to improve provision for the needs of women with secondary 
breast cancer. C4Ward is currently running a telephone support group for 10 weeks 
for women with secondary breast cancer around the country. It is probably not 
possible for your sister to join this group which is underway, but inital reports 
have been very positive and future groups might be run. You or your sister could ring 
Breast Cancer Care to register an interest and find out more. Breast Cancer Care 
(no. below) also run a helpline and some of the women who volunteer do have 
secondaries and there is also a Younger Women's Network. I think callers can talk 
to the same person regularly if they wish.


>     2) nutritional info . We are currently trying to wade through all the 
>     detox diets available Gerson , Anne Frahm  , Bristol diet etc.. and 
>     are struggling to find any nutritionalists in our area (north east / 
>     yorkshire)  who can help.   

I'm afraid I can't offer more than personal opinion in this area. I haven't even heard of Anne 
Frahm. 'Straight' medical professionals seem to have little interest or knowledge in this area. 
Alternative or complementary practitioners seem to be 'of a certain school.' There *is* a lot 
to wade through. I have found it useful to talk to other people with cancer, even if they have 
primary cancer or a different cancer. A local Cancerlink (info. below) support group or contact 
person might help.

There is a breast cancer e-mail discussion group. I joined briefly but do not belong now. As 
with all such groups, one can get deluged with e-mail, much of which is not relevant. Many 
particiapnts are American, where obviously other treatments are available and health care is 
run differently. You can also search the archives of this group by subject. If you are 
interested, you can join if you:

send an e-mailto: listserver@morgan.ucs.mun.ca
leave the subject line blank
send the message text: subscribe BREAST_CANCER

There is more information about cancer on the Internet than one could ever possibly wade 
through. Our site is a place to start and on our "Hotlist" we are linked to other breast cancer 
and UK cancer sites. I see from your fax number you are in the Manchester area. You probably 
know if there is a cyber cafe in the city, though I admit it might not be an easy place to sit 
and look up cancer info. Some public libraries also have Internet access. You are probably 
aware that if you know anyone who is studying or working at a university, they are likely to 
have access.

I am going to be away from 28 March for about a month. If I can offer any more info before 
then, please e-mail me. 

best wishes to you and your sister,

Marie

Rosemary Burch, St. Thomas' group, (0171) 928 9292 x 3864
Breast Cancer Care freeline 0500 245 345
Cancerlink e-mail:canlink@canlink.demon.co.uk, freeline 0800 132905
------------------------------------------------------

Date: Thu, 20 Mar 1997 14:37:31 +0000
From: Phoebe W
Subject: local support groups

Dear Marie,

I have just found your web site and am gratefull for its presence!
My mother (Mary) has been diagnosed with secondary breast cancer....bone
metastases. We live in Cambridge, and I am trying to locate local
support groups for secondary breast cancer. I notice from your diary
that there is one in London (St. Thomas's...Rosemary Burch) and was
wondering whether there may be something similar in Cambridge, and if I
can get more information on the London group.

Thanks, 

Phoebe W

To: Phoebe W
Subject: Re: local support groups

Hi Phoebe,

>I have just found your web site and am gratefull for its presence!

Glad to hear from you.

>My mother (Mary) has been diagnosed with secondary breast cancer....bone
>metastases. We live in Cambridge, and I am trying to locate local
>support groups for secondary breast cancer.

As far as I know, the St. Thomas' group is unique. There will be cancer support groups in your 
area and probably breast cancer support groups, but not one for women with secondaries that I 
am aware of. Cancerlink (contact details on our 
site) is a good source of info on groups. Cancerlink's 1996 Directory lists

Cambridge Cancer Support Centre 
1A Stockwell St (off Mill Rd)
Anne Dungley (01223) 566151
Marilyn Barnes (01223) 840281

Offers self help, relaxation, visualisation, group discussion, nutritional and counselling 
advice, meditation, information, phone support.

Have you/your mother talked to the breast care nurse at the hospital where she is being 
treated? Some can be helpful. I am also visited by an excellent Macmillan nurse at home. He is 
based in a local authority health clinic.

>I notice from your diary
>that there is one in London (St. Thomas's...Rosemary Burch) and was
>wondering whether there may be something similar in Cambridge, and if I
>can get more information on the London group.

I have been in the St. Thomas' group since Nov 95. We meet the first Tues of the month from 
2.30 to 4 p.m. Women come from a number of different London areas/hospitals. The group has 
been useful to me for emotional support and for practical information about state benefits, 
treatments, etc. Rosemary Burch wrote an article in the 26 Feb issue of the Nursing Times 
about the group. If you can't get this from your library and want a copy, I can post you a xerox. 
Obviously, it would be a long journey for your mother. Rosemary Burch might be able to offer 
other suggestions or contacts in your area. 

The C4Ward group, which came out of a Channel 4 programme about the St Thomas group, is a 
working party on the needs of women with secondaries. C4Ward has set up a teleconferencing 
support group for women with secondaries which is to run for 10 weeks. The group has now 
'met' a couple of times and I don't think it is planned for additional women to join this group 
but other such groups may take place in future. If your mother would be interested, you/she 
should phone Breast Cancer Care for more info and to see if they are keeping a list of those 
interested.

Please let me know if you need more info. (I will be away from 28 March for a month and only 
accessing e-mail intermittently).

best wishes,

Marie
------------------------------------------------------

Date: Tue, 18 Mar 1997 10:29:22 -0500
From: Mental Health Net 
Subject: UK Breast Cancer Awareness Campaign


Congratulations!

I am happy to write you that your site has recently
been awarded a three-star rating on Mental Health Net,
the largest catalog of mental health, psychology, and
psychiatry resources online today. Mental Health Net is
an Ohio not-for-profit organization devoted to
information and education resources online.

Once again, congratulations and keep up the excellent
online work you do!

Sincerely,

John M. Grohol, Psy.D.
Director
Mental Health Net
< A HREF = "http://www.cmhc.com/">http://www.cmhc.com/

Awarded on: Tuesday, March 18, 1997 at 10:29:22 (EST)
------------------------------------------------------

Date: Fri, 14 Mar 97 17:14:13 0000
To: UKBCA@somewhere.org.uk
Subject: Jo Spence

I am a Medical anthropologist in California doing research on networks 
for cancer information.  I knew Jo when I was in UK so was quite 
suprised and touched to see these pages.  I will be trying to do a 
cross-cultural study using UK and US.  If you know of any contacts for 
me I will be in London...June 23-July 23 1997.  I am especially 
interested in alternative therapies...and am trying to get the CDC to 
include a lesbian demographic in their data base so am interested in 
any lesbian support groups as well.  I would be glad to share my 
information with anyone who is interested.  Many 
thanks...Darlene 

From: m.nally@dial.pipex.com (Marie Nally)
Subject: Re: Jo Spence

Hi Darlene,

>I am a Medical anthropologist in California doing research on networks 
>for cancer information.  I knew Jo when I was in UK so was quite 
>suprised and touched to see these pages.  I will be trying to do a 
>cross-cultural study using UK and US.

Sounds interesting.

>If you know of any contacts for me I will be in London...June 23-July 23 1997.

I will be in Edinburgh until c. 11 July but we could meet after then if you like. Do you know 
any of Jo's collaborators - Terry Dennett, Rosy Martin, Maggie Murray? We have met Terry 
Dennett and spoken to Rosie Martin and Maggie Murray. We will be meeting with Rosie and she 
may contribute some additional material to the Jo Spence section.

>I am especial;ly interested in alternative therapies...

Presumably you know of the Bristol Cancer Help Centre? There has been a move in Britian 
towards incorporating "complementary therapies" into mainstream care and support, or at 
least giving lip service to these. I do not know very much about "alternative therapies." Terry 
Dennett (who holds copyright for Jo Spence's material) seemed to know about/be interested in 
these. I have not searched the WWW extensively on this subject. I have had an e-mail from one 
person in Britain interested in alternative cancer therapies and his URL is

http://www.east-lothian.co.uk/aa/index.htm

>and am trying to get the CDC to include a lesbian demographic in their data base so am 
interested in any lesbian support groups as well. 

CancerLink have a lesbian network for cancer support (though I don't know how good/extensive
 it is). They are in our Contacts list and have an e-mail address.  

>I would be glad to share my information with anyone who is interested.  

Thanks. Keep us posted on your plans.

Marie
------------------------------------------------------

Date: Mon, 03 Mar 1997 10:08:48 -0800
From: Rod Ward
Organization: School of Nursing & Midwifery, Sheffield University
Subject: web site upgrade & move

Nursing & Health Care Resources on the Net

This web site has been extensively upgraded and moved to:

http://www.shef.ac.uk/~nhcon/

Your site is listed in the Condition Specific section.

The site provides lists of World Wide Web Sites, Mailing lists and Newsgroups relevant to 
Nursing & Health Care.

Sections include:

Nursing - UK ( 21 Web Sites)
Nursing - Worldwide (75)
Health - UK (43)
Health - Worldwide (48)
Universities - UK (Offering Nursing & health Care Related courses) (35)
Universities - Worldwide (Offering Nursing & health Care Related courses) (22)
Psychology & Social Sciences (23)
Health & Educational Informatics (41)
Midwifery & Child Health (17)
Mental Health & Learning Disabilities (13)
Alternative/Complementary Therapies (14)
Condition Specific (52)
Radiography (17)
Physiotherapy & O.T. (27)
Mailing Lists (with subscription info) (112)
Newsgroups (150)
A new section is  UK Nurses' Web Pages (32)

All links to web sites have been checked and updated & now include the site's Logo , where 
possible, and a short description.

The site is designed for web browsers with Frames capabilities, but a version has been 
included for those with older, non-frames browsers.

It is possible to subscribe to receive updates when the lists are changed, and another  new 
feature is the help section.

The site is the latest version of one which has been running since 1994 and incorporates the 
feedback and comments from hundreds of users.

There is a UK bias to the listings, but includes resources from all over the world. The previous
version received over 8000 hits in 1996 and development is on-going, with suggestions and 
comments welcome from all users.
------------------------------------------------------

Date: Thu, 27 Feb 1997 16:10:23 GMT
From: Peter and Ann 

Dear Marie,
        I read the article in the Times Interface for January 8th.

I see that you want to be involved in your own treatment.

My wife and I have recently learned how to treat ourselves and others for
various things - such as alleviating pain - making death easier to deal with
- and so on.

We have also learned how to teach others to do it for themselves, and we
have classes at our home in Ireland and in Glasgow.

The principle thing that attracted us to this was that no money is involved.
One neither pays to be treated nor to be taught.
Another thing is that anyone can learn the procedures.
If this sounds to far-fetched then I apologise for bothering you.

If you want to talk about it then you can phone or fax us at 00 353 68 34505
Our address here is Fort Shannon House, Glin, Co. Limerick
In Glasgow we stay with my father at 16 Birkhall Drive, Glasgow, G61 1DB
The 'phone number there is 0141 942 2991
     
           Our love to you - Peter & Ann

To: Peter and Ann 
Subject: Re: treatment

Hello Peter and Ann,

Thanks for the info.  I am having a number of complementary treatments at present and do not 
want to embark on anything new just now.

Regards, Marie
------------------------------------------------------

Date: Tue, 25 Feb 1997 15:59:49 -0500 (EST)
From: BobG
Subject: Directory of Cancer Specialists.

Please could you tell us where we might find a copy of The Directory of
Cancer Specialists? either for loan or purchase (price.. I.S.B.N .number?)
Thankyou, Bob and Mary G

Hello Bob abd Mary,

You can order The Directory of Cancer Specialists from

National Cancer Alliance
PO Box 579
Oxford
OX4 1LB

The book costs 5 pounds sterling plus 70 pence per copy. Sorry, I don't know the ISBN.

best wishes,

Marie
------------------------------------------------------

Date: Thu, 20 Feb 1997 19:07:21 +0000

Hi..

My name is David and I'm 16 years old.. I live near Brighton in the
town of Burgess Hill. Ever since I heard of Breast Cancer and the facts
about it, I have really been thinking of setting up some events at
school in order to raise some money for research into Breast cancer.

I know that I wouldn't realy be able to raise much money for the cause
in comparison to other donators, but I would like to get other people to
realise the facts and figures of breast cancer and symptoms for the
ladies.

Is there are registered charity for Research into Breast cancer and what
is it called if it does exist?? Would it be possible for you to send me
some further facts and figures that are likely to shock others? I heard
from the Arctic explorer (who's name i cant remember) that there are
currently no research facilities in Britain! Is this right?

Any ideas or help would really be appreciated.

Thanks Alot..

David 

Subject: Re: Fund Raising..

Hi David,

Thanks for your e-mail.

>Is there are registered charity for Research into Breast cancer and what
>is it called if it does exist?? 

There are several registered charities which raise funds for research. On our Cancer Contact 
pages (http://www.easynet.co.uk/aware/contacts/index.html) you will find links to info on:

Action against Breast Cancer

BREAKTHROUGH

Breast Cancer Campaign

There are also a number of other registered charities (e.g. Breast Cancer Care) on our Contacts 
list who raise money to provide support and information for those affected by breast cancer.

>Would it be possible for you to send me
>some further facts and figures that are likely to shock others? 

There are figures on our Home Page. More stats are available from 

Cancer Research Campaign
6 - 10 Cambridge Terrace
London NW1

(0171) 224-1333

>I heard
>from the Arctic explorer (who's name i cant remember) 

Fienes?

>that there are
>currently no research facilities in Britain! Is this right?

There is research going on in Britain, though I don't think there is centralised funding or 
planning of this research. I believe Fienes was walking for BREAKTHROUGH.

>Any ideas or help would really be appreciated.

Several of the charities on ours Contacts pages will send you info on fundraising and 
awareness-raising. Few have e-mail addresses but those that do include Action against 
Breast Cancer (abc_uk@dial.pipex.com) and Breast Cancer Care 
(106226.167@compuserve.com).

Good luck and please get back in touch if you need more info.

Marie
------------------------------------------------------

Date: Fri, 14 Feb 1997 06:35:53 -0500
To: Bill Kneece 

Hi Bill,

>It is http://www.cancerhelp.com/ed/
>Try this and let me know. 

I finally looked at this site yesterday. The books and site look useful on a basic level. I am 
able to devote only a limited amount of (completely voluntary) time to book reviews at 
present and there are a number of useful basic books which have more info specific to medical 
care in Britain. But I like the fact that you use info from these books to answer FAQs on the 
site and that you don't charge a subscription fee. So how about if you send me an e-mail with 
your URL, naming the books and giving any other info about what your site offers, and we'll put 
this on our Feedback page?

regards,

Marie 

Marie,
Our URL is http://www.cancerhelp.com/ed/

Books for patients who have been diagnosed with breast cancer:
"Your Breast Cancer Treatment Handbook" 
"Helping Your Face Breast Cancer"

Books for women who are monitoring their breast health:
"Finding a Lump, What to do ... Where to go"
"Solving the Mystery of Breast Pain"
"Solving the Mystery of Breast Discharge"

Also, we will be training in Italy and Germany March and April for 
the Department of Defense. 

Our products are being purchased in large quantities by the Federal
Government and HMO's. 

Journal Of The National Cancer Institute reviewed our books in their 
September, 1996 issue and in their November, 1996 issue. 

Marie, thank you for your interest. We have a passion for educating
women about breast cancer.

Bill
------------------------------------------------------

Date: Tue, 11 Feb 1997 09:17:31 -0400 (AST)
Subject: bone marrow transplant

Marie/Nina:

Wonderful info and I congrat you on your hard work.  I am a 40 yr old 
breast cancer survivor.  I had a bone marrow transplant in June 1996 
(stem cell) and I am interested in corresponding with other survivors who 
have undergone the transplant procedure.  Would it be possible to post my 
request?  Are the transplant procedures available in the UK?  Keep up the 
good work.

Best Regards,

Peggy
Nova Scotia
Canada


Hi Peggy,

>Wonderful info and I congrat you on your hard work. 

Thanks.

> I am interested in corresponding with other survivors who 
>have undergone the transplant procedure.  Would it be possible to post my 
>request?  

Sure. Next time we update the pages (end Feb/early March), we'll put your e-mail on Feedback. 
But you might get more response through the breast cancer e-mail discussion group - details 
on our Feedback page or via link from our Hotlist to J Bonine's site.

>Are the transplant procedures available in the UK?  

There have been/are some clinical trials but BMT is not generally available for breast cancer. 

Keep well. Best wishes,

Marie
------------------------------------------------------

Date: Tue, 04 Feb 1997 15:15:16 -0800
Organization: elvis & bonaparte advertising
Subject: SHN Breast Cancer Link

Greetings!

My name is Lori Clark and I work with a company that provides
subscription-based, condition-specific health care information on-line.
Sapient Health Network compiles the best information from the internet,
original content from their own experts and doctors as well as licensed
information from medical journals and books.  SHN has also developed a
community network including chat rooms and message boards so members can
discuss important issues with medical professionals as well as other
patients. SHN currently offers service for fibromyalgia, prostate cancer
and breast cancer patients and plans for other services in the coming
months.

Our goal is to let people living with breast cancer know about SHN's
valuable collection of services. SHN would like to offer a
one-month-free trial subscription to interested parties. We would like
to extend the offer to patrons of your site by requesting that you add a
link from your site to SHN.

When you have a moment, take a look at SHN and I'm sure you'll find it
is worthy of linking to your site. You can find them at www.shn.net

If you have any questions or are interested in establishing a link to
your site from SHN, please give me a call.

Thank you for your time and attention!


Lori Clark
------------------------------------------------------
Date: Mon, 3 Feb 97 18:05:46 UT
Subject: Breast Cancer

Marie,

May I complement you and Nina for your excellent Internet page.

For some months now I have been reading the msn. and aol bulleting boards, 
however in the US it appears they are much more aware of their cancer and its 
progress then we are here in the UK. My situation is that I had breast cancer 
twelve years ago and after six years it re-appeared in my sacrum and since 
then it has progressed to my hips. I have had various Radiotherapy treatments 
and I now take Arimidex tablets. I have really done well. I receive my 
treatment at the Royal Marsden Hospital in Fulham Road, London and I also 
attend the Royal London Homeopathic Hospital in Queens Square. The average 
time which Arimidex is effective is eighteen months. I am now very interested 
in a treatment called Jomol which has been on trial in Germany for about 
eleven years, you can read all about Jomol by doing a search under this name 
on the Internet. It is made by a small pharmaceutical company, which because 
of 'dirty tricks' by the large companies have taken a long time to get it 
approved by the powers that be. It is therefore still on trial.

I have written to the Royal Marsden asking if they would support me in my 
quest to go on a trial for this treatment, but am still awaiting a reply. I am 
also in correspondence with Dr Udo Ehrenfeld of Jomol.

I know we all contribute large sums to Cancer Research, do you know of 
anyplace in the UK where I could apply for support to undergo a trial of this 
treatment?

I realise you may not be well enough to reply to me or feel rather tired at 
present so will understand if I do not receive a reply from you.

With all good wishes and encouragement, never give up

Mary L

From: m.nally@dial.pipex.com (Marie Nally)

Hi Mary

>May I compliment you and Nina for your excellent Internet page.

Thank you.
 
>and I now take Arimidex tablets.

So do I. After I was diagnosed with secondaries, I had my ovaries out, then was on Tamoxifen,
then Lenteron (?sp), now Arimidex. Megase is another drug which has been prescribed for
women with secondaries I've talked to.

>I am now very interested in a treatment called Jomol

I haven't heard of this.

>I am also in correspondence with Dr Udo Ehrenfeld of Jomol.

Wouldn't he know if there were clinical trials underway/planned in the UK? Or is it money 
that you need to fund the cost of the drug? For yourself or to support a full clinical trial? The 
research/funding organisations I am aware of are on our Cancer Contacts page. 


>I know we all contribute large sums to Cancer Research, do you know of 
>anyplace in the UK where I could apply for support to undergo a trial of this 
>treatment?

I do not know think there is an Interet listing of clinical trials specifically for the UK. There 
is info about clinical trials on

http://www.cancernews.com

>I realise you may not be well enough to reply to me or feel rather tired at 
>present so will understand if I do not receive a reply from you.

I'm feeling fairly ok at the moment. I only have e-mail access from here though, so can't net 
search for clinical trial info. I hope to have a web session elsewhere soon and will put this on 
my list.

I am in a support group for women with secondary breast cancer which meets the first Tues 
of every month at St. Thomas' Hospital in London at 2.30 p.m. I know groups are not for 
everybody, and I have never joined one before, but this has been useful for support and lots of 
practical info about treatments, benefits, etc. There are 2 facilitators. If you are interested, 
ring Rosemary Burch on (0171) 928 9292 x 3864.

best wishes,

Marie

Date: Tue, 4 Feb 97 18:19:05 UT
From: "Mary L" 

Marie,

Many thanks for your quick reply and glad to hear things are not bad at the 
moment.

Believe it or not I and others are struggling to keep a Support Group going at 
the Marsden. We have a volunteer who comes a long to teach us relaxation, 
stress management among other things. She can only come on Tuesdays and after 
using the room for sometime they now tell us it is not available on Tuesdays. 
I have written to the medical director and am awaiting a reply.

Just to fill you in on Jomol, I am in e-mail correspondence with Dr Udo 
Ehrenfeld, he told me to contact Praxis Dr. Udo Ehrenfeld, Weissenburgstr.25 
D-93055 Regensburg re the treatment tel 49+941+79 14 42
fax 49+941+79 32 40.  The were quite surprised I was in contact with Dr 
Ehrenfeld  as he was in Brazil, on holiday they told me, in actual fact he has 
now told me he is avoiding the German winter having had five heart attacks in 
recent years and last week he had two embolisms.

I have written to my doctor at the Marsden saying I would like to go on Jomol 
and asking for their support, I have not as yet received a reply.

Jomol treatment is started in Germany and continued by medical services in the 
patients home country.
He told me the treatment will be paid (soon by local insurances in the EC) 
They expect to win at court this year that this will be so. Some countries 
insurances pay already according to constitutional right for life, but up to 
now , only a few are respecting the constitutional human rights in the EC. 
Admission/Registration of Jomol in the EC is expected to need 1-2 years more. 
The treatment  with Jomol has been legally performed for more than 11 years, 
big pharmaceutical producers abused their relationship with the government  
and tried to get rid of Jomol- but a decision of the highest administration 
court of Bavaria  the BayVGH declared the Jomol treatment to be legally 
performed

Seemingly according to our constitutional rights in the EC our physicians 
cannot deny to treat us with Jomol if we wish. However of course the big 
bugbear is money. I think the large research charities should be supporting 
research in this area. It will be interesting to know what my reply from the 
Marsden says.

Much of what I have said  about the law etc.above is quoted from e-mails from 
Dr Ehrenfeld. However, because he is ill I am refraining from asking any more 
questions at the moment, and in anycase my hands are tied until I hear from 
the Marsden.

Thank you for your interest, I live in West Acton (near Hanger Lane if you 
know it) because of my bones problem I travel everywhere by car, thank you for 
your invitation to St. Thomas's support group, it is a bit far away for me and 
there are parking problems.

Again with good wishes, hope all above is not too boring, I think we need an 
expert in European law.

Mary
------------------------------------------------------


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