Queensland Government: Gold Coast researchers make chronic fatigue breakthrough

[Kati]

Here, from Griffith U when asked if it was new news:

https://twitter.com/i/web/status/834180649044971520

Oh and this one:

https://twitter.com/i/web/status/833966217148784640

news 7 Gold Coast has a short clip, it is posted on their facebook page but not on their website yet.

And this:

https://startsat60.com/health/breakthrough-found-in-chronic-illness-affecting-250000-aussies

 

[allyann]

I don't understand the negativity in this post. We spend our time begging for biomedical research and then pooing all over the the scientists and thier research when they publish results. This is a world respected research facility with some significant backing, who also happen to have the press on side - a major feat in itself. Imagine what could happen if we got behind our researchers....

 

[Kati]

I don't understand the negativity in this post. We spend our time begging for biomedical research and then pooing all over the the scientists and thier research when they publish results. This is a world respected research facility with some significant backing, who also happen to have the press on side - a major feat in itself. Imagine what could happen if we got behind our researchers....

What @allyann said.

 

[Seven7]

Defective cell receptor identified, but is it different than the TRPM3?

 

[alicec]

I don't understand the negativity in this post. We spend our time begging for biomedical research and then pooing all over the the scientists and thier research when they publish results. This is a world respected research facility with some significant backing, who also happen to have the press on side - a major feat in itself. Imagine what could happen if we got behind our researchers....

I give the centre full credit for having established itself, for continuing to get sufficient funding to survive and for assiduously maintaining PR. That is an admirable feat.

I take note of the hints of greater things to come and sincerely hope that this will be the case.

This doesn't mean I suspend critical faculties and unquestioningly accept that everything they do is good, particularly not when I know they have published some truly bad science and have engaged in the worst kind of publication inflation.

Normally that kind of publication record would cause me to give a research group little credence. Because I would like so much for this group to be successful for the reasons noted above, I don't write them off and I do continue to follow what they are doing.

I continue to hope. So far I haven't seen a lot to sustain the hope but who knows what is to come.

 

[alex3619]

Ah I was hoping it was something actually new today. Though good on balance that bio research makes the news in Australia. Is there no SMC equivalent in Australia @alex3619 ?

I believe we have an SMC here, but I do not know how active they are. SMC is branching out globally.

We need the PR, but we need reasoning and balanced commentary. Alas reporters often get it wrong even when its generally in our favour, not just when they are promoting bad science.

 

[Knockknock]

Gold Coast researchers make chronic fatigue breakthrough

In a world first, Gold Coast researchers have made an important breakthrough in understanding the cause of Chronic Fatigue Syndrome.

Science Minister Leeanne Enoch said researchers from Griffith University’s National Centre for Neuroimmunology and Emerging Diseases (NCNED) have found strong evidence that chronic fatigue syndrome was associated with a dysfunctional immune system.

“The research team, led by Professor Sonya Marshall-Gradisnik and Professor Don Staines, have identified a dysfunctional cell receptor in the immune system which seems to be at the core of the problem,” Ms Enoch said.

“This discovery is great news for all people living with Chronic Fatigue Syndrome (CFS) and the related Myalgic Encephalomyelitis (ME), as it confirms what people with these conditions have long known - that it is a ‘real’ illness - not a psychological issue.

“CFS and ME are notoriously difficult to diagnose, with sufferers often going for years without getting the proper care and attention they need. Currently, there is no effective treatment.

“The Griffith University breakthrough now means we have a target for therapeutic intervention, which is welcome news to the 250,000 Australians believed to be affected by CFS and ME.”

Health Minister Cameron Dick praised researchers for working hard to help people suffering from CFS and ME.

“According to ME/CFS Australia, the cost to the Australian community of CFS/ME diagnosis, treatment and management is estimated to reach more than $700 million annually,” Mr Dick said.

“But that is nothing compared to the devastating impact the conditions have on sufferers, along with their families and friends.

“I am thrilled that funding from our Government is playing a hand in changing people’s lives for the better.”

Professor Marshall-Gradisnik said Queensland Government funding had been critical in progressing the research.

“The Queensland Government has funded NCNED continuously since 2008, totalling about $1.6 million all up, enabling the research centre to be a world leader in chronic fatigue research. This is the largest direct contribution of any government anywhere in the world to chronic fatigue syndrome research,” Professor Marshall-Gradisnik said.

“It clearly demonstrates what can be achieved with critical government funding.”

The NCNED also received a $4 million grant from the Stafford Fox Medical Research Foundation – the largest grant ever provided for CFS/ME research.

Professor Don Staines said this funding would be used to investigate the commercialisation of a diagnostic test the research team were developing as well as potential treatments.

“This is a huge boost to our research effort, enabling us to really look at how we can overcome this debilitating illness,” Professor Staines said.

Griffith Vice Chancellor Professor Ian O’Connor welcomed the ongoing support from the Queensland Government.

“The most effective research is now coming more often from powerful collaborations such as this,” Professor O’Connor said.

!! THIS IS BEYOND AMAZING!!!
EVEN THOUGH FRANCIS COLLINS AND NATH,S SAID THESAME THING 2 YEARS ,IT SEEMS THE CORE IS IN THE IMMUNE SYSTEM, BUT AFTER THAT VERY LITTLE HAS BEEN DONE.

THE MOST IMPORTAN PART IS ACCEPTANCE!!!
THE HARD WALL WAS THE DISMISAL!!
THAT IS WHY WE WERE IN THAT DARK HOLE.
NOW I TRULY BELIEVE THAT ITS JUST A MATTER OF TIME.
THE WORLD IS EVOLVING AROUND THIS NEURO AUTOIMMUNE DISEASES.
GOV, UNIVERSITIES. STUDIENTS, EVERYONE IS MORE AWARE OF ME/CFS
ITS LIKE IT CAN NOT BE DISMISSED ANYMORE.

 

[Knockknock]

My guess is a major news feed here picked it up, then it gets reprinted again and again with nobody checking the story. This could indeed be big news, after the test is validated.

Validated...hmm...
its interesting how many things have never been validated but science and Gov , NIH, etc pushed in conviiusly.

HIV/AIDS was never validated, was discover, the epidemic started and the fact that Hiv indeed cause AIDS , was never validated.

Thats the reason why many people still believe that Hiv wouldnt cause disease or peogresion to AIDS with out the confection that with the help of this herpes viruses like hhv6, ebc,cmv...help to progress To AIDS.
Many people uncluding myself believe this co infection hypotesis behind hiv is probably what we have, but sice we dont have HIV we dont get AIDS, but we do have alot of symtoms and disfuntions, immune deficiency, cancers and infections like AIDS, especially the herpes virade viruses often blamed on both diseases for causing trigger of progression.

 

[allyann]

This article has a simplified explanation http://www.sciencealert.com/one-of-...t-chronic-fatigue-syndrome-just-got-destroyed

One of the Biggest Myths About Chronic Fatigue Syndrome Just Got Debunked

Chronic fatigue IS a real disease.

Chronic fatigue syndrome (CFS) or Myalgic Encephalomyelitis (ME) is one of the most perplexing conditions out there. It affects up to 1 million Americans and 2.6 percent of the global population, often triggering exhaustion so severe that patients can't work or study.

But for decades, researchers have struggled to find an underlying cause, leading to an assumption by many doctors that it's 'not a real disease'. Now, Australian researchers have blown that myth wide open, showing for the first time that CFS is linked to a faulty cell receptor in immune cells.

"This discovery is great news for all people living with Chronic Fatigue Syndrome (CFS) and the related Myalgic Encephalomyelitis (ME), as it confirms what people with these conditions have long known - that it is a 'real' illness - not a psychological issue," said Leeanne Enoch, the Science Minister of Queensland - the Australian state that's supporting the research....

The latest research has been published in Clinical Experimental Immunology.

 

[alex3619]

The more the journalists write up the details, the better. It gets the information out there.

 

[alex3619]

If causal this established ME as a calcium channelopathy, though if not causal but still correct we wind up with a secondary problem with calcium ions. We also need to find out why it happens though ... is this inherited or acquired? This kind of thing is typically inherited. What is very important is that this might give us a distinct drug target for treatment. This is the kind of thing that gets big pharma interested. Money could appear out of seemingly nowhere.

 

[heapsreal]

Also significant is the role the PregS (a neurosteroid) plays in activating these channels.

This could be why low cortisol is commonly found in mecfsers and why hydrocortisone helps some as cortisol is made from pregnenolone .

 

[Kati]

Being published by Science Direct, it is great leverage to ask governments to fund more research. This is a great opportunity not to be missed.

At this point I am not too worried about cause and effect. I believe everything will cnvergg at some point and it will come together. What is needed is funding for science, more brains working on the issue, and a medical specialty to take care of all of us would be great.

So share widely. Tell your political representant. Show the science. Show the level of funding and how it compares to other diseases just as disabling as ours.

 

[alicec]

Now, the latest study shows the disease actually has a serious cell receptor dysfunction at its core.

This is a statement from a reporter and could be a misinterpretation but other things in the report suggests that the reporter has been lead to believe this by the researchers.

This is taking things much further than the study actually justifies. This is hype.

All they showed was that in cells isolated from CFS/ME patients, there are fewer TRPM3 receptors on the surface of the minor sub-group of NK cells (about 10% of the total NK cell population), but the major group had normal numbers.

When these two populations of NK cells were stimulated in a test tube with a natural ligand for the receptor, there were differences in intracellular calcium response, both between the two groups of NK cells from patients and between cells from patients and controls.

That is as far as the study went. We don't even know if this effect happens in the body or if it is an in vitro artefact. Assuming it is real, we don't know where it fits in to the wider scheme of things. It could be causal or it could be a downstream consequence of some other problem.

The breakthrough came after researchers from Griffith University identified that patients with CFS/ME were far more likely to have single nucleotide polymorphisms - DNA typos - in the genetic code for certain cell receptor.

The researchers have clearly lead the reporter to believe this and they claim it themselves in the paper in order to propose that the NK cell differences are likely to have some causal significance.

This is REALLY DISHONEST. As many people pointed out about their original SNP study, their statistical analysis was inadequate and the significance found wasn't reliable.

They themselves published a follow-up paper, discussed here, where they did use appropriate statistics and found that THERE WERE NO DIFFERENCES IN TRPM3 SNPs, or in any of the other SNPs they had made claims about.

So even though they know there is no difference in the SNPs, they continue to claim that there is because it makes a small observational study seem more significant.

I don't find that impressive.

 

[A.B.]

http://www.sciencealert.com/one-of-...t-chronic-fatigue-syndrome-just-got-destroyed

In fact, the two most commonly prescribed treatments for the condition are cognitive behavioural therapy and exercise, neither of which have any evidence to support they work - and many feel could actually be doing more harm than good.

Haha. Sounds like the author has been following the PACE story.

Sadly this receptor anomaly finding is being hyped and this may well backfire. We already know this illness is real and has a biological basis. We didn't need this new finding to know this.

 

[arewenearlythereyet]

I am sitting on the fence here as a scientist turned marketeer ( statement to make both professions hate me) .

As a scientist I'm intrigued yet skeptical about the small cohort used. However, I also know that small studies help bigger studies and with research funds lacking globally we need to take every shred of evidence we can if it is useful. This brings me back to being skeptical about bad science for which I have encountered a lot.

As a marketeer I applaud the PR since this is abysmal in our area and there is no such thing as bad PR particularly when awareness is concerned.

As a person with CFS I think on balance I like the PR because it is another voice across the world saying that CFS is not in the mind and even if the science can't be backed up, the original biochemical message still remains.

 

[adreno]

Their findings don't seem to match with what Stanford is seeing. According to Ron Davies the problem is in the serum, not the cells.

 

[arewenearlythereyet]

Their findings don't seem to match with what Stanford is seeing. According to Ron Davies the problem is in the serum, not the cells.

Well the cells may have something to do with it since they are permeable and serum is just the transport system for a load of stuff from cells?

 

[AndyPR]

My, hopefully unjustified, fear is that overhyping these results will come back to bite us if it can't be replicated. The BPS crowd would just love to be able to point at something as proof that there is no biomedical basis for ME. Nothing has changed my opinion, I much prefer how Fluge and Mella are going about things, explaining a lot and making few claims, instead of this group seeming to claim a lot based on very little.

 

[arewenearlythereyet]

It all comes back to the same thing....PR is needed to promote science and currently it's a piss poor job. What we need is a pr agency to really promote all the science to encourage more of it and combat the very deep seated psychiatric lobbying that's going on. It would be great to see some more media coverage and debate generally . My worry is that when we have a better understanding from the most recent studies, politics and better marketing by the psychiatric crew will bury the science regardless of its validity.