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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19130 |
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Posted: Sun Oct 15th, 2006 18:19 |
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Australian Members news re
To order NoIR Glasses in Australia:
Benicar also available from the local chemist in tablets now..
Olmesartan medoxomil - Benicar for Aussies has the recent Rx Information
You may wish to make contact with others in your area by private message.
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Call for Membership Applications and Preliminary Notice of Special General Meeting of Members
see below re
DR MARSHALL'S FORTHCOMING AUSTRALIAN VISIT NOVEMBER 12 to 21
Background
There are now well over 100 Australians members of the Marshall Protocol forum. Several Australian members are now well advanced in the treatment of their particular inflammatory condition. A small group of four Australian MP Forum members considered that some of the particular needs of Australian members could be better advanced if a more formal support organisation was set up in Australia.
Formation of new organisation
To get this underway, these four, being RobertTownsend, RobynO, AussieBarb, and ChrisTownsend recently linked up on a telephone conference call and agreed to become founding members of a new organisation to be known as the Australian Autoimmunity Foundation, Inc. Incorporation was sought from the outset, in part because this limits a Member's liability to any action of the organisation to simply the amount of any unpaid membership subscriptions.
This organisation has now been formally registered with the Registrar of Associations in Victoria and designated on the Australian Business Register. Applications for Charitable status and Tax Deductible Gift status have been lodged with the Australian Taxation Office. We have asked Trevor Marshall to become Founding Patron of the organisation. He has accepted, and is excited by, and supportive of, our initiative.
Principal Purpose of the Autoimmunity Research Foundation, Inc
The principal purpose of this foundation will be to support the work of the US based Autoimmunity Research Foundation. It will NOT engage in patient support or advice, nor in doctor education and advice. These are now, and will continue to be, delivered by the US based Autoimmunity Research Foundation to doctors and to patients throughout the world. The Australian foundation's main purpose will be to carry out functions in support of the Marshall Protocol which can only be done in Australia.
We would expect that matters such as local registration of drugs, and timely and cost effective access to such drugs, will form a major part of the initial work of the Australian Autoimmunity Foundation, Inc. Clearly the priorities and means of operation of the organisation will need to be determined after it gets a wider membership base and formally elects office bearers and a management committee.
In forming this association, the founding members believed that one of the major benefits would be so that Australian MP members could now have a formal voice in any government lobbying, and a vehicle by which we could, perhaps, formally apply to the Therapeutic Goods Administration for the designation of the various prescription drugs for at least some of the inflammatory conditions for which the drugs are used in the Marshall Protocol.
The Application for membership and the formal objects of the organisation are available by email request to Robert Townsend. Robert is presently acting as interim Public Officer of the organisation, pending the election of a Secretary and other office bearers at a forthcoming meeting of members. Since the Association is in its early stages the sections of the application form showing the members supporting the application can be left blank.
Operation as an Australia Wide Organisation on a very limited budget
Membership fees have initially been set at $5 to join and $10 per annum. It is expected that the management of the organisation will function on a very low cost basis via e-mail, multi party instant messaging, and occasional telephone conference calls.
It is hoped that the management committee of six people (President, Vice President, Secretary, Treasurer, and two ordinary members) can draw at least one member from each of the larger Australian cities.
First Meeting of Members
As Sydney is the base for more Australian MPers than any other city, it is proposed that the initial meeting of members be held in Sydney, which is tentatively set down for Sunday 12 November.
The formal business of this meeting will be to
(a) Elect office bearers: President, Vice President, Secretary, and Treasurer
(b) Elect two ordinary members to the Management Committee
(c) Discuss members’ views on those matters, to which the Management Committee should direct their main attention in the first year of the new organisation's existence.
Those who cannot attend this meeting will be welcome to express their views by contacting any of the founding members prior to this meeting, and also to exercise a postal vote, if we were indeed fortunate in having more nominees for the Management Committee than there are positions!
Clearly, as a group comprising many seriously ill people and those supporting seriously ill people, we must structure our means of working, the timetables we set, and the activities we attempt, with the full regard for these limitations, and the due respect for each of our daily limitations.
PM or email
RobertTownsend
Vicki SA
for Application for membership and Formal Objects of the organisation:
Robyno and Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Moxie
Member in Phase 3
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Posted: Sun Oct 15th, 2006 19:15 |
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Best news I've heard for ages - am in total agreement with this. Will certainly give us a BIGGER VOICE!!
Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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Dr Trevor Marshall
Research Team
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Posted: Sun Oct 15th, 2006 20:13 |
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Excellent work! I expect to be able to join you, in Sydney, for that meeting. We are also planning a short lecture tour to explain our discoveries to Australian scientists, and to the press. Liz is checking her calendar to see if she is able to come too.
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oashman
Health Professional
| Joined: | Wed Aug 30th, 2006 |
| Location: | Australia |
| Posts: | 23 |
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Posted: Sun Oct 15th, 2006 20:44 |
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| Great news. As soon as you have details of time/place of meeting -- please post. I will definetly attend -- looking forward to meeting you all.
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Ulcerative Colitis, Crohn's, IBS, had gallbladder and appendix removed needlessly. Aug 06 1,25D=55; 25OH=25; Oct 07 1,25D=59; 25OH=13. Olmetec Q6-8h, Mino 25mg Q48h, Nilstat 1 per day.
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Ralph
Member in Phase 3
| Joined: | Wed Dec 8th, 2004 |
| Location: | Sydney, Australia |
| Posts: | 278 |
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Posted: Sun Oct 15th, 2006 21:21 |
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Barb,Robert,Robyn and Chris,
Thankyou for initiating this move. I'm sure the aussie contingent of members will support AAIF.This is a massive leap forward for gaining recognition and spreading the MP science and cure.
To top it off having Dr Marshall attend. Can it get any any better 
regards,
Ralph
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Lungsarc1/3/05fatigue,bod/ache,irr/heartbt/ no meds| Avoid D, Light/sun, Noirs, 24-7-06 25D=8/1 25D=39 4-9-06 25D=14 BeniCom 2/4/06 q6h Start Ph 3 12-2-07. going out more. Jan 07 25D 10.8,Oct-25D 8 1,25-23Dec07 25D-16.8 1,25-81 22 Jan08 D-12.4 1,25-
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Den
Member in Phase 2
| Joined: | Tue Sep 12th, 2006 |
| Location: | Sydney, Australia |
| Posts: | 61 |
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Posted: Mon Oct 16th, 2006 02:26 |
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This is the very best news of all.
Though I am still trying to get my thesis finished, I have been hoping and praying for this day. Count me in. I would love to become involved and I am glad to see I will be able to afford the cost of membership.
Denise Testa
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Sarcoidosis hypothyroid psoriasis psoriatic arthritis Ph1Jan08 Imigran Oroxine Endep NoIRs low lux home limited outings covered up 25D7.6. Recent 25D 6.
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Morris W. Milnes
Member
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Posted: Mon Oct 16th, 2006 03:45 |
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Makes me wish I was Australian.
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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LeAnne
Member in Phase 3
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Posted: Mon Oct 16th, 2006 13:20 |
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This is a wonderful idea. You Aussies probably have felt a little alienated from everyone else. It is harder for you to get your medications and attend conferences here in the U.S. I think this is great! Congratulations! This is just one more step foward to spreading the word about the MP. GO AUSSIES!!!
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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ShrnHml
Guest
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Posted: Mon Oct 16th, 2006 15:44 |
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| Congratulations to the Aussies for setting up a sister organization. We know this will be a sucessful endeavor and are with you all the way. .............Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Claudia
Member in Phase 3
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Posted: Tue Oct 17th, 2006 22:00 |
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Hoo-ray - I'm joining!
Anyone know how often Medicare will pay to test for Vitamin D? Doc says Australian medicare won't pay to test for Vitamin D too many times a year! So he didn't order a test when I asked recently.  No idea how I am doing on that account.
I have been doing a LOT of travel and had lots of sun exposure, but do my best to keep covered up.
I mean the basic, 25-D test. Not the metabolite test (1,25D) as I understand it is not necessary to test at this time anyway.
Thanks,
Claudia
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MP Phase1 23Mar_06; Phase2 July 10_06; Phase3 Nov 4_06. Dx Thyroiditis (Thyroxine); arthritis; glaucoma; CFS (1988-92);Kidney & bladder probs. Feb06 1,25D=43.3; Aug07 1,25D=27.5; Feb06 25D=44; Aug07 25D=28; Nov07 25D=36; Mar08 25D=16.4
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paperjunk
inactive member
| Joined: | Sat Aug 21st, 2004 |
| Location: | Gothenburg, Sweden |
| Posts: | 49 |
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Posted: Tue Oct 17th, 2006 23:43 |
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Claudia,
I don't believe there are any conditions on Medicare rebates for either 25D or 1,25D. The are both classed under item 66608 "Vitamin D or D fractions (1 or more tests)". I had both tested 4 times last year and by next week will have had both tested 5 times this year all of which have been bulk billed.
MBS online:
www9.health.gov.au/mbs
Kudos for those who have setup the Australian Autoimmunity Foundation.
CalebLast edited on Tue Oct 17th, 2006 23:49 by paperjunk
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CFS 8 years| Zo-lpidem/piclone :Clonazepam: Melatonin, Avanza, Zyprexa| Mar 05: 1,25D=40 25D=6: Nov 07 1,25D=41 25D=8| Comm Ben: Oct 04| Mar 07: 40mgQ8H Mod Ph2| http://www.papercuts.me.uk
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Ralph
Member in Phase 3
| Joined: | Wed Dec 8th, 2004 |
| Location: | Sydney, Australia |
| Posts: | 278 |
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Posted: Wed Oct 18th, 2006 02:42 |
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Claudia,
I to would like to comfirm what Paperjunk has stated about 25OHD testing and 1,25 or any other tests for that matter.I get mine done from Concord Hospital who pioneered the 1,25 test for Australia, so I'm told. I'm currently been getting my tests done monthly with no problem. My specialist wants to see the data as I progress. Recently my potassium was picked up as going north and with fantastic advice from Barb & Meg my potassium came back down after implementing dietary measures. Its things like this that can avoid a potential problem. I have posted many times that we are fortunate in Australia with the availability of services free to the population.
Claudia it should be obvious to your Doc that your condition warrants constant monitoring whilst on the MP. Perhaps you should show him some of the MP literature. I know I have read that Dr M always likes to see as much data as possible.
regards,
Ralph
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Lungsarc1/3/05fatigue,bod/ache,irr/heartbt/ no meds| Avoid D, Light/sun, Noirs, 24-7-06 25D=8/1 25D=39 4-9-06 25D=14 BeniCom 2/4/06 q6h Start Ph 3 12-2-07. going out more. Jan 07 25D 10.8,Oct-25D 8 1,25-23Dec07 25D-16.8 1,25-81 22 Jan08 D-12.4 1,25-
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RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
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| Posts: | 101 |
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Posted: Wed Oct 18th, 2006 03:23 |
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RE TREVOR'S FORTHCOMING AUSTRALIAN VISIT NOVEMBER 12 to 21
We will be having a number of small group presentations by Trevor to participating MP doctors, separate from the meetings which we will be arranging for patients.
We expect to have Doctor meetings in each of Brisbane, Sydney, Canberra, Melbourne, and Adelaide, though some of this is dependent on scheduling other meetings with various medical research groups.
If you would like to make sure your own GP or supervising clinician receives an invite to the doctor sessions,
-could you please send me a PM with his or her contact details. I will ensure that these details remain confidential.
Thanks
RobertTownsend
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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Moxie
Member in Phase 3
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Posted: Wed Oct 18th, 2006 08:56 |
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I believe that Aussie GP's may be a little hesitant to step outside the 'normal' range for Vitamin D testing e.g. if you appear to do too little or too much of any testing, you will come under the radar of Health Insurance Commission.
So maybe that is reason for knocking you back on more Vit D testing.
I personally have had 10 Vit D tests done in the past 19 months with no problems.....
Moxie
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CFS 25 years - FMS. Benicar 3 daily - Ph 2 16/5/05 - Ph 3 10/5/06 Metformin 500mg 1/2 bd. Vit D 45nmol/L (18ng/ml) 1,25 D 92pmol/L (38.3pg/ml)
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RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
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| Posts: | 101 |
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Posted: Fri Oct 20th, 2006 22:55 |
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reposting: for those who have not seen the latest:
TREVOR'S AUSTRALIAN VISIT NOVEMBER 12 to 21
Meeting times for the various patient sessions are now being finalised
The Sydney Patient Session is now on the morning of
Saturday 11 November.
The Sydney patient meeting will be preceeded by a short inaugural meeting of the Australian Autoimmunity Foundation.
The timetable will be a 10.30am meeting of the Foundation
- followed by an 11.00 am presentation and Q&As by Dr Marshall.
Place
The Ku-ring-gai Library Meeting Room, which is located adjacent to Ku-ring-gai Library, at 799 Pacific Highway, Gordon.
Access and parking details
I hope that not too many are inconvenienced by this unavoidable change of arrangement
RobertTownsend
Canberra Members who are able to - are travelling to this Sydney meeting.
REPORT: see Trevor Down-Under
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The Brisbane Patient Session is
2.30pm Monday November 13
at the New Farm Library Community Hall.
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2:30pm Wednesday:
Please note that the presentation at John Curtin School of Medical Research, ANU, has been rescheduled to 2:30pm Wednesday, so that the 4pm Fire Drill does not come in the middle of my presentation
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The Melbourne Patient Session is now confirmed as being :
Time 3.30 pm to 5.00 pm on Thursday November 16
Place Phylis Hore Room, Rear of Kew Library, Cotham Road (Cnr Civic Drive) Kew 109 Tram Stop No 35
Facilities : Wheelchair access and adjacent disabled parking
Lighting : The room is used as a daytime film theatrette and so can be darkened to our needs
...............................
A patient session in Adelaide is now scheduled
for 3.30 pm on the afternoon of Friday 17 November.
The venue is the ground floor foyer of the HOLIDAY INN 65 Hindley Street Adelaide.
NOTE:
Holiday Inn is set back from the road, and has only a 20ft wide fascia, and so is easy to walk straight past. It is roughly opposite the underground arcade from Hindley through to the Railway station.
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For the Western Australian members -
Dr Marshall will be visiting Perth
on the evening of Sunday 19th, the 20th and morning of 21st November.
Is there any interest in organizing a get-together?
Let's see how things work out for Perth. At this point nothing has been finalized except that I will be there please see Dr Marshall post
An Interview with Perth ABC radio is being organised ..
any meetings will have to organised around this interview time once the details are finalised.
Belinda is the contact for final details. see the press release online at this link.
The flyers for the JCSMR and Bio21 presentations are now online at URLs
http://autoimmunityresearch.org/Marshall_JCSMR_flyer.pdf
http://autoimmunityresearch.org/Marshall_Bio21_flyer.pdf
Please share them with your physicians and friends.Last edited on Sat Nov 11th, 2006 01:21 by
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
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Posted: Mon Oct 23rd, 2006 05:01 |
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RE TREVORS FORTHCOMING AUSTRALIAN VISIT
Change of Sydney Patient Meeting Date to Saturday 11 November
We have had to lengthen Trevor's trip by a further day to comfortably fit in the various arrangements.
Unfortunately this means the Sydney patient meeting and the initial meeting of the Australian Autoimmunity Foundation have to be brought forward by a day to the Saturday 11 November.
The timetable will be a 10.30 meeting of the Foundation followed by an 11.00 am presentation and Q&As by Dr Marshall.
Sydney Chris will post the exact details of the Gordon venue which we are using once the details have been confirmed with the local Council.
I hope that not too many are inconvenienced by this unavoidable change of arrangement
RobertTownsend
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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mcalister
Health Professional
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Posted: Tue Oct 24th, 2006 11:08 |
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Well done
It is great to hear the news of the umcoming Aussie Conference. Trevor it is probably about 2 years or so since I met you in Adelaide, did you ever think the MP would spread so quickly? I can't attend the Sydney conference but I hope it all goes well.
Mary
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Pulmonary sarc with skin involvement and renal calculi. On MP for 4 years. Phase 3.
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Dr Trevor Marshall
Research Team
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Posted: Tue Oct 24th, 2006 13:05 |
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Mary,
If TPTB in Adelaide can get their act together and agree on a time and place for a meeting, then Adelaide, too, will be on our schedule. I hear that Robert is having trouble getting agreement as to a suitable venue in Adelaide. Formal presentations at John Curtin School of Medical Resarch (ANU) and Melbourne University have been confirmed, but less interest from Adelaide academics, apparently Nevertheless it would be nice to meet you all
Last edited on Tue Oct 24th, 2006 18:35 by Dr Trevor Marshall
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Linden
Member
| Joined: | Mon Oct 16th, 2006 |
| Location: | NSW, Australia |
| Posts: | 4 |
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Posted: Tue Oct 24th, 2006 20:56 |
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| I have a friend who has just been told that he has sarcoidosis (lymph biopsy +ve, Blood test -ve), would he/we be welcome to attend the Sydney meeting?
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CFS in family
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RobertTownsend
Health Professional
| Joined: | Wed Oct 19th, 2005 |
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| Posts: | 101 |
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Posted: Wed Oct 25th, 2006 02:36 |
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Linden
We would be delighted. This is not a closed meeting.
Robert Townsend
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CFS 4yrs,crippled knees;Oct05 Phase 1;Feb 06 Phase 2 ; Mar06 1,25D-61pMol/L 25D-23nMol/K;Jul06 Ph3 start ;July 08 dose tapering some abx,daytime fatigue much lower, skin still very light sensitive ;knee mobility very constrained with limited walking
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