Australia: Boost for people with ME and chronic fatigue syndrome thanks to Parliament

[Indigophoton]

The Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patient and research communities are delighted the Australian parliament officially recognise the urgent need for biomedical research in the field.

Senator Anne Urquhart, a Tasmanian Labor senator, (on behalf of her colleague Senator Helen Polley) and Senator Stirling Griff, a Centre Alliance senator from South Australia, moved the motion in the Senate today, in time for International ME and CFS Awareness Day on May 12. Across Australia and the rest of the world, events will be held to mark the day, including in Melbourne’s Federation Square.

The Senate motion recognises that the lack of a current diagnostic test for ME and CFS is a barrier to people receiving timely and accurate diagnosis, and that there is no current cure or effective treatment.

Between 94,000 and 242,000 Australians have ME or CFS, 25 per cent are so severely affected they cannot leave home or bed. There is a five per cent remission rate. Australian GPs struggle to recognise the illness without useful clinical guidelines and in Australia it is misdiagnosed in nearly 40 per cent of cases.

https://meaustralia.net/2018/05/09/...nic-fatigue-syndrome-thanks-to-parliament/amp

 

[pteropus]

i'm confused ... which parts of this blog were spoken in the Senate ... and which relate to other locations / occasions / interviews ?

many of the people quoted, live or work a long way from Canberra - was there a video link of their comments, that was aired in the senate ?

 

[pteropus]

i found a link - this is what was spoken in the Australian Senate:

http://parlinfo.aph.gov.au/parlInfo...b/toc_pdf/sen-jn.pdf;fileType=application/pdf - pages 3074-3075



Journals of the Senate / No. 96 / Wednesday 9 May 2018

33 International Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Awareness Day

Senator Urquhart, at the request of Senators Polley and Griff and pursuant to notice of motion not objected to as a formal motion, moved general business notice of motion no. 802

—That the Senate—
(a) notes that:

(i) 12 May 2018 is International Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Awareness Day,

(ii) ME and CFS is a debilitating neurological illness that affects the brain, endocrine system and muscles in adults and children,

(iii) ME and CFS affects between 94,000 and 242,000 Australians, with around 25% of people with ME and CFS unable to leave their house or bed,

(iv) the lack of a current diagnostic test for ME and CFS is a barrier to people receiving timely and accurate diagnosis,

(v) there is no current cure or effective treatment for ME and CFS and more biomedical research needs to be done to better understand this medical condition, and

(vi) there are actions and activities across Australia this week to mark Awareness Day, including Millions Missing events;

(b) acknowledges:

(i) the positive development of the National Health and Medical Research Council (NHMRC) establishing a ME/CFS advisory committee to advise if new guidelines are needed in Australia, and

(ii) the important role of families and carers of people living with ME/CFS; and

(c) urges:

(i) the NHMRC to ensure the ME/CFS advisory committee runs an open and transparent process that includes advice from leading scientists and clinicians, and

(ii) federal, state, territory and local governments to take leadership, and work with people who have ME/CFS to help them get the support they need.

Question put and passed.

- - - - -

so the other quotes aren't part of the Senate events.

 

[Simone]

This is the second year here in Australia that we have had a motion pass in the Senate to acknowledge ME/CFS Awareness Day. The article is misleading, as such motions are largely symbolic, and don’t reflect anything about government policy or intentions. The wording isn’t as significant as the article implies, because the words are generally written by the advocate who requested the Senator move a motion. What such motions do reflect is that these Senators are allies, (2 last year and 3 different Senators this year), which has come from lobbying efforts by many people throughout the last couple of years. It’s good to have such allies. Things are shifting, though not quickly enough!

 

[Sean]

I'll wait until I see the money, and where it goes, including ME patients getting a much better deal from Centrelink.

The rest is just words.

 

[pteropus]

I just want to mention, because this has been a source of misunderstanding in the past. The “ME Australia” blog is not the peak national advocacy organisation for Australians. In fact, it’s not an organisation or group at all. It’s a blog, run by one person.

In the past, there have been instances of international advocacy organisations, funding bodies, and even other patients who have assumed that this was our peak body. This led to not only confusion, but has prevented our ME/CFS organisations from speaking on our behalf, as these other organisations were under the impression that contacting “ME Australia” meant that they were contacting an official ME/CFS organisation in Australia, which they weren’t.

 

[Simone]

I'll wait until I see the money, and where it goes, including ME patients getting a much better deal from Centrelink.

The rest is just words.

A Senate motion like this is exactly that, just words. It isn’t meant to be anything else. It is very common for the Senate to pass such motions to support awareness of various causes. For example, the same day that this motion was passed, the Senate also passed motions in support of the following:

- 70th World Health Assembly on Cancer Prevention and Control
- Motor Neurone Disease Awareness Week
- MAYDAYS for Eating Disorders
- World Day for Safety and Health at Work—Workers’ Memorial Day
- World Red Cross and Red Crescent Day

This was an ordinary day in the Senate. There would be similar motions passed every single day. They don’t represent government policy, more a polite acknowledgment by the government of whatever cause the awareness day represents. More of a shoutout than anything. It would be a mistake to read too much into the wording of the motion, or to place undue weight on it. It is a supportive gesture (which is very welcome!), but nothing more.

 

[Penelope McMillan]

This is the second year here in Australia that we have had a motion pass in the Senate to acknowledge ME/CFS Awareness Day. The article is misleading, as such motions are largely symbolic, and don’t manifest in any change in government policy. The wording isn’t as significant as the article implies, because the words are generally written by the advocate who requested the Senator move a motion. What such motions do reflect is that the Senators who have moved the motions are allieswe have Senators who are willing to move such motions on the floor of the Senate (2 last year and 3 different Senators this year), based on lobbying efforts which have happened throughout the year. It’s good to have allies. Things are shifting, though not quickly enough!

Griff has proven to be an ally, asking questions last year in the Senate about the WHO reclassification issues.