Australian medical research council promises targeted research for ME within months

[Kenny Banya]

Australia’s National Health and Medical Research Council (NHMRC) says it will spend $3-5 million dollars over three to five years on funding targeted research into ME (myalgic encephalomyelitis) and chronic fatigue syndrome. This is a huge increase, as the NHMRC have not funded a study since 2005.

The NHRMC said it will take time as it has to stagger targeted calls for research to manage within budget but it will be months, not years, before it happens.

The NHMRC is consulting with the Australian Health Ministers’ Advisory Council’s working committee; Emerge Australia; the Department of Health and others in federal Australian government.

Recently, the Australian government has failed to include people who have ME or diagnosed with chronic fatigue syndrome and incorrectly stated 75% recover without treatment, when the figure is closer to a mere 5%. When ME is not included in these government reports or the figures are wrong, this negatively impacts policy and research.

NHMRC is consulting medical colleges to form an expert advisory committee. Senator Scott Ludlum urged them to include Griffith University’s National Centre for Neuroimmunology and Emerging Diseases.

NHMRC’s CEO, Prof Anne Kelso, said the NHMRC are serious about trying to identify what it could fund that would be effective.

“The absence of a regulated diagnostic test being generally available, despite the fact that there is clearly some research progress, which is promising and exciting, the lack of a clear, simple set of diagnostic criteria and the lack of clear treatment protocols. The range of research questions that the patient group wish to have answered is very broad and the difficulty for us is how to define exactly which questions would be tractable with the type of budget which could be applied to such a targeted call for research,” Prof Kelso said.

Australian government unaware of USA’s institute of health position on exercise
Prof Kelso said the NHMRC contacted the National Institutes of Health in the USA, to understand whether there is a way to collaborate with the NIH to ensure that the right work is done and leverage their broader expertise and broader budget. The NHMRC is waiting to hear back from the NIH.

Senator Ludlam reminded the NHMRC that their research money in past years has been spent in New South Wales on research and treatments that encourage people to exercise, and that that is incredibly damaging for people with this condition....
https://meaustralia.net/2017/06/06/...mises-targeted-research-for-me-within-months/

 

[DownUnder]

Certainly things have progressed but before everyone gets too excited, these are Professor Kelso's words,"
.... First of all, I think that until we work out the scope of the targeted call for research, if there is to be one, it is hard to answer the question of whether any possible guidelines.....
'The months not years' is referring to the decision of whether they will decide to give a Targeted Call for Research to ME/CFS, not when.

 

[taniaaust1]

Recently, the Australian government has failed to include people who have ME or diagnosed with chronic fatigue syndrome

So the gov. Australian institute of Health and Welfare completely ignored ME/CFS when it studied nearly 200 different diseases looking at burden impact.. oh why doesnt this at all surprise me as they have always treated this disease as invisible here in Australia... far more invisible then even the english treat their ME/CFS patients.

I wont think at all that things have progressed here UNTIL ME/CFS is recognised properly as a disability in Australia and we qualify as a disability for support services in our country. This wont happen until we are included in the NDIS (national disability insurance scheme) which then would allow us to get services from disability services rather then be ignored no matter how sick a person is.

Thank you to EMERGE and our state societies who are working very hard to help change things here.
........

If anyone knows of anyone who may be able help me with a current legal case against the government.. please pm me. I have a ton of court stuff Im dealing with against gov depts over ME/CFS discrimation and cant even understand their court response due to my brain going to spaghetti on reading it... and really needing help if Im to win the case

It goes back to court in the morning but Im going to have to adjourn my case as my brain cant understand the response). The case is as far as having all the court particulars properly into court (the only legal aid I could get) and having their crown soliticer back response.. I dont know how I will continue with this court case with not being able to understand things. We NEED to start winning some court cases so our government stops neglecting us.

 

[Kalliope]

Sounds promising. I hope they will consider including patients and patient's organisations when it comes to how these funds should be further distributed, as The Research Council of Norway did when they recently allocated money for ME-research

 

[Murph]

This is a terrific piece by the wonderful Sasha Nimmo. She is a powerful person fighting the good fight for ME in Australia!

 

[Kenny Banya]

Senator Scott Ludlam, who is doing great work for sufferers while other politicians sociopathically ignore & do nothing, just made the following statement on the video from 30th May on his Facebook page (no surprise he's a lefty):

thankyou to everyone for watching and commenting and passing this on. you're not invisible. i know progress is too slow. but we're getting somewhere at last.
https://www.facebook.com/SenatorLudlam/

 

[John Mac]

A video of the meeting/announcement is now available:

http://www.enjoy2u.com/watch.php?vid=057f7d05f