To the Aussies

taniaaust1

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Last Tuesday, I attempted a long walk (with minimum rest breaks) & ended up in bed for most of a couple of days afterwards. And my feet were so inflamed, red & swollen, that I've had trouble walking for 3 days. This is the first time in about 5 months, I was this fatigued, so I've learned my lesson now - stay within my limits.
yep... you need to stay within your limits.

You & other Aussies are doing a great job putting the Australian info together - well done everyone.
thanks it is slowly getting there :) .... Melonie thou has been the one to cop the wiki headaches today (i hope not a literal one). That wiki is so so tricky .. as some may of noticed...when one tries to do something with a page it dulipicates them rather then deletes :p
(the wiki duplicate pages will be fixed as soon as we can)
 

taniaaust1

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When I was initially diagnosed with CFS, my doctor put me on twice weekly Vit C drips and B shots. He made a lot of money out of a lot of people with this treatment. After about 6 months of this, I reached a point where I could no longer work, and I asked him if he would support me in a Sickness Benefits claim. He refused, on the basis that it would harm his reputation. I got worse, went back to him and said if he wouldn't support me, could he refer me to a psychiatrist. He did. The psychiatrist ran intelligence tests etc. and said my IQ had dramaticall fallen, there was nothing wrong mentally with me, said it was physical.
:( .. i have a crappy doctor who wont support me either.. thou he implies he believes in CFS/ME.

It is good that you found a good psychriatrist.. i wish i could find one as i have ended up with mental health issues due to the CFS/ME (i suspect i have some PTSD due to government depts and doctors on top of other things).

I think i did have a nervous breakdown due to all the stress others put me throu... i lost the plot in the tax dept as i was too sick to be able to keep good records of a few hrs per week work i was forced by centrelink to do and tax dept then threatened to fine me etc (i couldnt produce info i didnt know and didnt have!! at the time i couldnt even add numbers etc) i ended up throwing my paperwork at them and left crying and never went back even since then (i had bad centrelink issues too).. my mental health has been terrible ever since but it was fine before with the CFS/ME.

It was only AFTER that incident did the tax dept send me a letter saying they'd give me a hand, before that a social worker spent 15hrs with me trying to sort the mess i'd made of everything (tax stuff) and trying to get tax dept to help me with it and they completely refused and then just kept telling me it wasnt good enough (while kept sending me letters that they would fine). i just wont go anywhere near that department now, the thought stirs me up too much. Now whenever i end up too stressed, i end up hospital.
 

taniaaust1

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I


There must be someone else in Victoria, surely?
There would be.. during my searches i found quite a lot of doctors all over Australia who say they specialise in CFS. i was stunned to see just how many doctors there were who do here. Im yet thou to put them all onto the good doctor list as im trying to get that advocay page done first, so without others adding to it.. it will have to stay how it is for the time being
 

taniaaust1

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im cut and pasting our aussie wiki pages here.. while we are trying to fix out the mess which has happened at wiki (in case we loose them while trying to fix it)

AREAS WHERE ADVOCACY IS NEEDED
* More research funding into ME/CFS in proportion to the severity and prevalence of the illness
* Urgent research funding into ME/CFS and it's link to XMRV/HGRV. And the epidemiology of HGRV.
* Access to XMRV/HGRV testing
* Doctor Education
* More Doctor medical training into ME/CFS and its coexisting illnesses
* Public Education
* More doctors and treatment centres
* For getting certain consessions into some states, not all are equal eg http://www.industry.nsw.gov.au/energ...Energy-Rebate?
* Importand to include in all letters or contacts information on seriousness of CFS, its symptoms and impact on peoples lives. eg include a news article on someone with the illness, or have a patient willing to talk about it. If this is not done then they won't appreciate the seriousness of CFS or the meaning of breakthroughs such as XMRV/HGRV.

There is also a need for Advocacy to be directed towards America in which there is a coverup of ME and confusion with CFS. This affects us over here in Australia as many of our doctors turn to the American CDC site, to look things up including on the subject of CFS. This confusion also affects most of the sciencific studies too which come out, so confuses any doctors here who take a look at CFS research.
It makes no sense for an illness to be completely different things, due to different definations etc, all over the world or for ME to be hidden. For more on the American Centre of Disease Control (CDC), ME coverup http://c4jrme.110mb.com/CurrentTopics3.htm

REEARCH FUNDING: AUSTRALIAN FEDERAL GOVERNMENT
National Health and Medical Research Council http://www.nhmrc.gov.au/about/index.htm
The National Health and Medical Research Council (NHMRC) is Australia's peak body for supporting health and medical research; for developing health advice for the Australian community, health professionals and governments; and for providing advice on ethical behaviour in health care and in the conduct of health and medical research. National Institute of Clinical Studies (NICS) has been incorporated into the NHMRC.

* CFS funding http://www.nhmrc.gov.au/grants/datas...es/chronic.php Funding for CFS research is woeful at an average of $250,000 per annum. Most of this, seems to be going to the work of Janet Taylor from the University of NSW and also to of Andrew Lloyd. (Andrew Lloyd is well known in the ME/CFS field and has done some good studies but also has taken a view against XMRV from early on and seems to have shifted and is taking on some psychological view).

NHMRC research funding for other illnesses can be found on this link http://www.nhmrc.gov.au/grants/dataset/issues/index.htm. Interesting comparisons can be made if you download the, 'Nervous Systems Neuroscience Disorders by Type' spreadsheet, or any others. For example, allocations for 2009-10 show MS has been allocated $7.8million dollars, migraine research has $1.9m. CFS has $208,000, though it appears actual expenditure was 325,000.
.....................

AUSTRALIAN GOVERNMENT CONTACT LISTS:

FEDERAL GOVERNMENT:
Health Minister: http://www.aph.gov.au/house/members/member.asp?id=83K
Shadow Minister: http://www.aph.gov.au/house/members/member.asp?id=AKI
Ministry: http://www.aph.gov.au/library/parl/4...y/ministry.htm
Shadow Ministry: http://www.aph.gov.au/library/parl/42/shadow/index.htm
Federal Parliamentary Directory: http://australia.gov.au/directories/...ralia-contacts


STATE GOVERNMENT:

NSW:
Health Minister: http://www.parliament.nsw.gov.au/pro...d?OpenDocument
Shadow Minister: http://www.parliament.nsw.gov.au/pro...8?OpenDocument
Ministry: http://www.parliament.nsw.gov.au/pro...rrentMinisters
Shadow Ministry: http://www.parliament.nsw.gov.au/pro...tCurrentShadow
All Members: http://www.parliament.nsw.gov.au/pro...CurrentMembers

VIC:
Health Minister: http://www.parliament.vic.gov.au/members/id/1583
Shadow Minister: http://www.parliament.vic.gov.au/members/id/155
Ministry: http://www.parliament.vic.gov.au/members/ministers
Shadow Ministry: http://www.parliament.vic.gov.au/members/shadow
Greens: http://www.parliament.vic.gov.au/mem...&up=YYYY-MM-DD
All Members: http://www.parliament.vic.gov.au/members/

QLD:
Ministry: http://www.parliament.qld.gov.au/vie..._ministers.asp
Shadow Ministry: http://www.parliament.qld.gov.au/vie...ers_shadow.asp
All Members: http://www.parliament.qld.gov.au/vie...rs_current.asp

SA:
Health Minister: click on the Ministry link below, then click on the Health Minister's name to get details.
Ministry: http://www.parliament.sa.gov.au/Memb...Ministers.aspx
Shadow Minister: click on the link below to ascertain the Shadow Ministers name, then click on the 'All Members' link and find Ministers name to get details.
Shadow Ministry: http://www.parliament.sa.gov.au/Memb...s/gateway.aspx
All Members: http://www.parliament.sa.gov.au/Memb...20Members.aspx

WA:
Health Minister: click on the Ministry link below, then click on the Health Minister's name to get details.
Ministry: http://www.parliament.wa.gov.au/web/...ry+Secretaries
Shadow Minister: click on the Shadow Ministry link below, then click on the Shadow Health Minister's name to get details.
Shadow Ministry: http://www.parliament.wa.gov.au/web/...adow+Ministers
All Members: http://www.parliament.wa.gov.au/web/...bpages/Members

TAS:
Health Minister: http://www.parliament.tas.gov.au/ha/obyrne/obyrne.htm
Shadow Minister: http://www.jeremyrockliff.com.au/
Ministry: http://www.parliament.tas.gov.au/HA/Cabinet.htm
Shadow Ministry: http://www.parliament.tas.gov.au/ha/LiberalCab.htm
Greens shadow Ministry: http://www.parliament.tas.gov.au/HA/GreensCab.htm
All Members: http://www.parliament.tas.gov.au/HA/HAMembersBio.htm

NT:
Ministry: http://notes.nt.gov.au/lant/members/...63ba2?OpenView
Shadow Ministry: http://notes.nt.gov.au/lant/members/...0Name?OpenView
All members: http://notes.nt.gov.au/lant/members/...1e38a?OpenView

ACT:
Health Minister: http://www.parliament.act.gov.au/members/162.asp
Shadow Health Minister: http://www.parliament.act.gov.au/members/165.asp
Ministry: http://www.parliament.act.gov.au/mem...sibilities.asp
All Members: http://www.parliament.act.gov.au/mem...asp?assembly=7
.......................


LET'S TALK TO THE MEDIA

News Reporters
Ring with Big news .. eg major study just been released
note.. When you ring a reporter, they may or may not have email access at the time, so be prepared to give all details over the phone rather then just telling them you will email details of a hot news story happening or about to occur. eg Government overseas just about to give a reporters telebriefing on CFS/XMRV.

ABC news (Sydney and national) tvnews@news.abc.net.au
Channel 7 news News Tips 03 9697 7877, Adelaide Newroom (08) 8342 7700
Channel 9 news Newsroom Direct Line (08) 8267 1234
Channel 10 news news@networkten.com.au 24 hr hotline 1800 100 010

Today Tonight (channel 7)
Today Show (channel 9) today@nws9.com.au
Catalyst catalyst@your.abc.net.au

Radio
ABC Health Report: http://www.abc.net.au/rn/healthreport/contact/
ABC All In The Mind: http://www.abc.net.au/rn/allinthemind/contact/
ABC Okhams Razor: http://www.abc.net.au/rn/ockhamsrazor/contact/
ABC Radio Life Matters: http://www.abc.net.au/rn/lifematters/contact/

Major Newspapers
Melbourne Age: Email: newsdesk@theage.com.au Tel: (03) 8667 2250 Switch: +61 3 8667 2000
Adelaide Advertiser
Sunday Mail

........................

CFS/ME ORGANISATIONS:

There are many Organisations in Australia which can be contacted or joined which advocate for those with ME/CFS.

ME/CFS Association of Australia Ltd www.mecfs.org.au
Alison Hunter Memorial Foundation http://www.ahmf.org/
ME/CFS Australia (SA) http://sacfs.asn.au
ACT ME/CFS Society Inc www.mecfscanberra.org.au
ME/CFS Society of NSW www.me-cfs.org.au
ME/CFS Australia (Victoria) www.mecfs-nt.org.au
ME/CFS Australia (Northern Territory) http://www.mecfs-vic.org.au/welcome-...hern-territory
ME/CFS/FM Support Association QLD Inc www.mecfsfmq.org.au
ME/CFS Society of WA (Inc) www.mecfswa.org.au
ME/CFS/FM/MCS Support for Tropical North Qld. http://tnq-support-group.net/index.html


EXAMPLES OF ADVOCACY


Things you may want to include in your Advocacy

http://au.lifestyle.yahoo.com/who/la...tired-to-live/
http://www.watoday.com.au/wa-news/th...0301-pcvv.html
 

taniaaust1

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Australian ME/CFS Good Doctor page
please add any CFS specialists you see or doctors who are good with CFS patients. To add to page go to edit at top.

Australia

South Australia
Dr John Graham (Physician, Therapist, CFS specialist) http://artemisandco.com/johnweb/CHAPTER8.htm
Dr Allan Gale (Allergist, Immunologist) http://www.agale.com.au/CFS.htm
Dr Richard Burnet (Endocrinologist, CFS specialist) Royal Adelaide Hospital http://www.rah.sa.gov.au/news/media/...ueSyndrome.pdf
Dr Kerry Callagham (GP, CFS specialist) (ex CFS sufferer)
Dr Ian Buttfield (Specialist in chronic illness and M.E/CFS treatment) www.nor.com.au/~nrmecfs/conference_96.htm
Dr Kathleen Maros (GP, CFS specialist) Adelaide (her son had ME) http://webspace.webring.com/people/fc/cfsdays/maros.htm
Julie Peacock (Physiotherapist) Marion (she's given talks at the SA ME/CFS society) 858 Marion Rd, Marion SA 5043 (08) 8296 7594

Western Australia
Blake Graham (Nutritionist) http://nutritional-healing.com.au/co...tion=CFS/FMS

Queensland
Dr Garry Deed GP Specialises CFS, autism, Gives IV/IM Supplements, Brisbane, Cooparoo Ph 07 3421 7488 http://www.mecfscanberra.org.au/aus_...n/biotests.htm
Dr Neville Blomely (Mt Gravatt and Indooropilly) who is a cfs sympathiser!!!
Dr Ruth Cilento GP (Bracken Ridge) Interest in CFS Ph: 07 3269 4131
Dr Scott Phipps GP (Buddina) Interest in CFS Ph: 07 5444 1522
Veronica Griffin, Nutritionist, Interest in CFS/MCS, gives IV/IM Supplements, heavy metal detox Ph: 07 4095 2722 http://www.nutri-concepts.com.au/veronica.htm
Dr Catherine Bartholomew GP, Interest in CFS/FMS, gives IV/IM Supplements Ph: 07 3262 5227 Clayfield
Dr Pat Brady GP, Interest in CFS/FMS/IBS food intollerances, heavy metal problems Gives IV/IM vitamins/minerals Does Chelation Therapy Ph: 07 3421 7488 Coorparoo
Dr Valerie Cole GP, Interest in CFS/FMS, IV/IM Supplements, Chelation Ph: 07 5562 5333 Robina http://www.naturalvibranthealth.com/testimonails.php

http://www.acnem.org/modules/mastop_publish/?tac=32 List of GPs who are members of the Australian College of Nutritional and Environmental Medicine

New South Wales
Dr Mark Donohoe Nutritional and Environmental Expert, CFS/MCS specialist, Sydney http://web.me.com/doctormark/DoctorMark/Welcome.html. His CFS page is
http://homepage.mac.com/doctormark/Medical/CFS.html
Dr Ludka Berkowski GP, Holistic/complementary/alternative Suite 6A/77 Albert Ave. Chatswood, 02 9410 0764, 02 9410 1590, ludkaberkowski@yahoo.com.au.


Victoria
Dr Nicole Phillips Psychiatrist in private practice, Melbourne. Women's mental health issues, and also CFS http://www.treatcfs.com/drphillipsbio.html.
Dr Donald Lewis GP CFS specialist in Melbourne http://www.mecfswa.org.au/News_and_M..._/Default.aspx
 

taniaaust1

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Australian ME/CFS History and Events
ME/CFS Diagnostic Criteria in Australia

"Chronic fatigue syndrome - Clinical practice guidlines 1997" produced by a Working Group convened under the auspices of The Royal Australasian College of Clinicians http://www.tnq-support-group.net/cfs...-overview.html(html) http://www.myalgic-encephalomyelitis...-overview.html(html) pdf links on either site.

"Chronic fatigue syndrome - Clinical practice guidlines 2002" produced by a Working Group convened under the auspices of The Royal Australasian College of Clinicians http://www.mja.com.au/public/guides/cfs/cfs2.html(html) http://www.mja.com.au/public/guides/cfs/cfs2.pdf(pdf)

The ME/CFS guidelines, Management Guidelines for General Practioners (sponsored by the Sth Aust government and others) 2004 http://www.oiresource.com/pdf/mecfs.pdf These guidelines recommend the 2003 Canadian Clinical Criteria.

From 2005 the "Overview of a Clinical Case Definition and Guidelines for Medical Practioners, An Overview of the Canadian Consensus Document"
Authored by Bruce M. Carruthers and Marjorie I. van de Sande, came into use (Sth Australia). The inside of the front cover page of the booklet (capitals and all) states:

The Adelaide Forum agreed to UNANIMOUSLY EMBRACE THE CANADIAN CASE DEFINITION
with a strong recommendation that it also be taken up by ME/CFS societies.
(Excerpt from the review of the Adelaide Forum, Australia, 2005)
Micheal Barratt, MBBS, FRCPA
Medical Adviser, Alison Hunter Memorial Foundation, Australia

ME/CFS in Parliament

On XMRV testing and medicare http://parlinfo.aph.gov.au/parlInfo/...sCount=Default


ME/CFS Funding and Government ME/CFS funding

Important Australian Research Relevant to ME/CFS

Lactic acid (1995) The Adelaide CFS Research Group, Adelaide University, http://sacfs.asn.au/medical/adelaide_uni_research_1.htm
Lactate research, University of Adelaide http://sacfs.asn.au/medical/adelaide_uni_research_2.htm
Potassium (total body), Royal Adelaide Hospital and University of Adelaide http://sacfs.asn.au/medical/adelaide_uni_research_3.htm
Rickettsiae, John Graham, Flinders University, Sth Australia http://sacfs.asn.au/medical/adelaide_research.htm
Hematologic and urinary Excretion Anomalies (2007) University of Newcastle http://www.ncbi.nlm.nih.gov/pubmed/17720950
Icreased d-lactic Acid Intestinal Bacteria (2009) Institute of Biotechnology and Molecular Science http://www.ncbi.nlm.nih.gov/pubmed/19567398
Long term persistance of Q fever (2010) *for the Q fever ME/CFS subgroup, Australian Rickettsial Reference Laboratory http://www.ncbi.nlm.nih.gov/pubmed/20639288


Australian ME/CFS Reported Deaths

19 yr old Alison Hunter of Sydney died 1996. "In the end, heart damage, massive ulceration to her throat, failure of her gut and bowel and horrendous neurological symptoms, conspired to defeat her." [1] www.ahmf.org/smh040502.html
* Alison gave a speech in Ireland at the International Meeting on CFS when she was 17. www.ahmf.org/speech.html.

Tracey Lee Ash, 26 from Adelaide, died on March 7, 2002 from CFIDS/ME related causes. "Tracey battled with CFIDS/ME/FMS and multiple chemical sensitivities for many years. Tracey constantly searched for new possibilities of getting well, but in the end wellness became a faded and unreachable distant light." [2] http://sacfs.asn.au/publications/tal...tracey_ash.htm


ME/CFS and the Law

Queensland mother fights to get daughter back (1999) www.abc.net.au/7.30/stories/s21850.htm


Current Australian ME/CFS Events

Australia - National radio interview on the topic 'Exploring ME/CFS' - Podcast (23 August 2010)
Featuring Dr Donald Lewis (CFS Discovery) and Mr Leigh Hatcher (Sky News reporter and has ME/CFS). Radio ABC Tony Delroy Nightlife Podcast now available. http://www.abc.net.au/nightlife/podcast.htm 19MB

Coming Australian ME/CFS Events

Dr Byron Hyde - Saturday September 18th 2010, 12.30pm - 3.30pm - 'Doctor, do I have ME/CFS?'
Melbourne Town Hall, Supper Room (level 3), Swanston Street Melbourne.
International visiting medical expert Dr Byron Hyde will discuss the latest research and clinical practice concerning ME/CFS. The session is open to patients, medical practitioners, allied health professionals, policy advisors, academics and community members.
Cost: $12.50 for members of ME/CFS Victoria; $25 for non-members. Download the registration form here.

Planned visits also to:
Australian Capital Territory: 1st week in September (http://www.mecfscanberra.org.au/)
New South Wales: 7th & 8th September (http://www.me-cfs.org.au/)
Western Australia: 9th - 12th September (http://www.mecfswa.org.au/)
Tasmania: 15th & 16th September (http://www.mecfs-vic.org.au/)
Victoria: 17th & 18th September (http://www.mecfs-vic.org.au/)
Times and venues will be posted as soon as they are confirmed. Please contact the ME/CFS organisation in your Australian state or territory for updates and more information.

References

[1] www.ahmf.org/smh040502.html
[2] http://www.blueribboncampaignforme.o..._Memorial.html
 

taniaaust1

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ME/CFS Researchers
CFS RESEARCHERS AUSTRALIA

Australia
Assoc Prof Janet Taylor (2010, she has currently Aust. government funding and is carrying out a CFS study) [1]
Andrew Lloyd (2010, currently is carrying out a Aust. government funded study) [2]
Dr Hugh Dunstan, Senior lecturer and researcher into chemicals and' M'E/CFS, microbiology and biochemistry, Newcastle University. [3]
Dr Robert Weatherby, Senior lecturer, biochemistry/microbiology, sports science and human body movement, Southern Cross University Lismore [4]

Adelaide
Dr Tapin Mukherjee Scientist and researcher. Research into red blood cell abnormalities in ME/CFS, Adelaide. [5]

REFERENCES
[1] http://www.neura.edu.au/research/themes/taylor-group
[2]
[3] http://www.nor.com.au/~nrmecfs/conference_96.htm
[4] http://www.nor.com.au/~nrmecfs/conference_96.htm
[5] http://www.nor.com.au/~nrmecfs/conference_96.htm
 

taniaaust1

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http://www.vipdx.com/order/ now that a "licenced" test for XMRV and MLV's is out in America... we are needing to really push for this to be happening too in Australia.

I want to get our advocacy page completely finished fast (it needs info we can use to link to our emails) ... so it can be being used to help people push for our government for this. i WANT that test ASAP!!

Is it possible we can get our blood to the vipdx within 24 hrs or not??? it would be pushing it wouldnt it??? in case of delayed planes or whatever???

I guess if we start pushing our government for a test and they dont quickly start to arrange something.. this situation would be good to go to the newspapers with!! eg Australians are being denied virus test via our government
 

taniaaust1

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could give you some more qld names of dr's etc if you want them still...
thanks moonchild.. you can post the info on this thread if you want.. as right now wiki is kind of messed up and we are trying to fix it.
........

for anyone who wants to learn more about the wiki http://www.vaultwiki.org/demo/
.................

http://www.fm-cfs.ca/support.html just ditching that here for safe keeping as it has organisations listed on it which arent on the world organisation page yet.
 

taniaaust1

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Melodie.. i cant reach you, my PR Account is being weird tonight. Half an hr ago it told me i had 33 too many messages over my limit (so i just deleted them so it is now under... is it my account or has suddenly everyone got 100 less storage space??? ..
Now its coming up with a message when i went to pm you

"The following errors occurred with your submission
Melodie has chosen not to receive private messages or may not be allowed to receive private messages. Therefore you may not send your message to him/her

If you are trying to send this message to multiple recipients, remove Melodie from the recipient list and send the message again."

Anyway.. i wanted to tell you that i dont think you need to get the info together if you havent already, which the ABC asked you for (i think it was you????). As they have now done an article on XMRV http://www.abc.net.au/science/articles/2010/08/24/2991897.htm
 

susan

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Why must one health recovery model suit all of us. I have been reading CFS stuff and research since 1990. In all that time I have never found very many people do well on drugs or recover. However many do well on supplements as our bodies dont absorb key nutrients. ....drugs make us ill as we are chemically sensitive..

Why cant our Govts give vouchers to people like us for vitamins as they help our basic body chemistry. It seems they can give heart and lung transplants to people costing hundreds of thousands of dollars yet a few vitamins for people on disability pensions would help lots. A friend in Canada with a different illness is allowed to apply to the Govt...Tax section I think .... to help fund his costs from tax he has paid in the pas to buy extra stuff he needs.

To me this is a Human Rights issue.....you can be cured only if you take OUR kind of therapy....too bad if that therapy nearly kills you. Only when the drug companies own the vitamin companies which they are fast doing, will they grant us vitamins on prescriptions......then the dosage is likely to be so weak.
 

Sing

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Dr. Byron Hyde's talks start 9/14

Quote
Dr Byron Hyde, an eminent Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (M.E.) researcher and founder of the Nightingale Research Foundation will hold two seminars open to all at the UQCCR Auditorium Herston (http://www.uqccr.uq.edu.au/about-uqccr/how-to-find-us.aspx) on Tuesday the 14th of September, 12:30pm to 2:30pm and 5:30pm to 8:00pm respectively. Dr Hydes talk will cover the latest research in CFS and M.E. and will touch on the newly discovered human retrovirus XMRV, and its possible role in M.E./CFS. He will also be discussing diagnosis and treatment, and effects on children. A $5 donation (patients) and $10 (non-patients) is requested to cover venue costs for the evening session. Please RSVP Geoffrey Hallman at geoffhallmann@yahoo.com by 5pm Monday the 13th of September.

Dr Byron Hyde and the Nightingale Research Foundation

Dr Hyde is one of the few physicians worldwide whose practice has consisted solely of the investigation of Myalgic Encephalomyelitis (M.E.) and Chronic Fatigue Syndrome (CFS)patients since 1984. Dr. Hyde collaborated with over 100 experts to edit and publish in 1992 the first comprehensive and authoritative medical reference book on M.E. and CFS.
In order to widen resources to investigate M.E., CFS and related illnesses,

Dr Hyde founded the Nightingale Research Foundation in 1988 (http://www.nightingale.ca/index.php?target=home). Nightingale is dedicated to explore, understand and treat patients disabled with M.E. and CFS, fibromyalgia-type illnesses and post-immunization injuries.
Any male, female, child or adult can have M.E. or CFS. Those who have M.E. or CFS usually get the illness between the ages of 12-55 and many children are included in the population of those with M.E. and CFS-like disease. Up to 70 per cent of people with M.E. or CFS are female. A disproportionate number of people with the condition are professionals and semiprofessionals in the teaching, medical and associated disciplines.

The Foundation chose the Tiger for its logo since the animal is a natural killer and one of the first scientific benchmarks of M.E. and CFS was the fact that patients lacked active natural killer cells. (NRF website) Natural killer (or NK) cells are an essential part of the immune system.

Today, Nightingales priorities are individual patient-based research with total body/brain investigation of M.E. and CFS patients as well as the development of a sophisticated database to consolidate these findings for analysis and publication.

The uniqueness of Dr Hydes work is in its emphasis on total body mapping of all systems and organs so that he can understand the nature and complexity of the M.E. and CFS patients illnesses. Dr Hyde also manages a detailed data base of information based on his investigations into acute onset and gradual onset central nervous system dysfunction associated with fatigue and pain syndrome. This is from individual M.E. and CFS case research of over 3,000 patients and is more detailed than any other such research in North America.

The Foundation also has a separate, longitudinal database with some records spanning over twenty years. Such resources have led to new findings about the illnesses and Dr Hyde believes the vast majority of gradual onset type CFS patients were misdiagnosed with many subsequently found to have other conditions.


http://westside-news.whereilive.com...tional-me-cfs-researcher-to-speak-at-herston/
 

taniaaust1

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http://news.ninemsn.com.au/national/7961563/disabilities-forgotten-opposition

Disabilities are a forgotten area of social policy, the new opposition spokesman says.

Liberal senator Mitch Fifield was appointed shadow disabilities, carers and voluntary sector minister on Tuesday.

Senator Fifield criticised Labor for ditching its parliamentary secretary for disabilities role - formerly occupied by Bill Shorten - following the party's portfolio reshuffle last week.

"We thought that it was very important that disabilities have a voice at a ministerial level," he told ABC TV on Wednesday.

Prime Minister Julia Gillard did not appoint a specific replacement for Mr Shorten, incorporating his responsibilities into the portfolio of families and community services parliamentary secretary Jan McLucas instead.

Senator Fifield said more needed to be done to help people with disabilities because neither Labor nor the coalition had "covered themselves in glory" on the issue.

"If you are an Australian with a disability, you basically have a ... patchwork of support," he said.

"The support that you get when you have a disability is determined not by your need, it's determined largely by how you acquired your disability.

"It's a bit of a lottery and in most cases you face a Soviet-style system of rationing."
 

Ash

aka @smashman42 'SortaDerpy' on Twitter
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During the election campaign I sent Bill Shorten (and others, but he was the only one who sent a meaningful reply) an email template that has been passed around a few disability advocacy groups (QLD Spinal injuries something or other & Queenslanders with Disabilities Network) & he had replied that he was pushing for more recognition of disability issues at a ministerial level rather than just have it as a minor part of that larger ministry & disability services reform. Alas with this hung parliament scenario everything went out the window & we don't even have a parliamentary secretary any more.
 

susan

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I dont think there is a death knell for people with disabilities. Shorten has put too much work into this field to let it go....he has a passion for it.. It will take few yrs but the plan is out there to have people pay more on the medicare system to fund disabilities. Many carers now with adult intellectual and physical disabilities are so old that the govt is going to have to face doing something after the parents die.