Australian scientists make breakthrough in Chronic Fatigue Syndrome testing

[alex3619]

one simple disease, one drug to cure it

One Ring to rule them all, One Ring to find them,
One Ring to bring them all and in the darkness bind them

This obsession with one diagnosis and one marker, and one thing to treat and one to cure ... I have recently been comparing the issue with CFS and psychiatric diagnoses in the DSM. When you make that assumption about a heterogeneous condition you make it very much harder to advance the research, with more scope for quackery and babble. That is where the shadows lie.

PS I have on occasion called diabetes a syndrome. It is another disorder I think is probably hetergeneous.

 

[Snowdrop]

I believe SM-G will be presenting these findings at the IiME conference this summer. So we should know more then.
I believe I'm not giving anything away if I quote an email SM-G sent to me after I made an enquiry:

Quote from email:

Our approach at NCNED is very clear and that is to establish the pathomechanism of this illness as soon as possible and to ensure the most scientific rigour as we publish our findings. On this point we feel confident we are well advanced in the scientific discovery of the nature of this illness.

Let's all hope this is so and that it does stand up to the rigour of further analysis.

 

[BurnA]

I believe SM-G will be presenting these findings at the IiME conference this summer. So we should know more then.
I believe I'm not giving anything away if I quote an email SM-G sent to me after I made an enquiry:

Quote from email:

Our approach at NCNED is very clear and that is to establish the pathomechanism of this illness as soon as possible and to ensure the most scientific rigour as we publish our findings. On this point we feel confident we are well advanced in the scientific discovery of the nature of this illness.

Let's all hope this is so and that it does stand up to the rigour of further analysis.

Thanks for sharing. I like the sound of it but I have learnt to be cautious.' Well advanced', can mean many things to many people.

They did say in the interview an approved test would still likely be several years away. My interpretation is that a big trial would still need to be done.
At least they are saying the right things anyway.

 

[Snowdrop]

@BurnA
I agree entirely with your caution.
It's the line we walk with our hope. I don't mean to over hype this. And it's not about cure/treatment at any rate.

But if it is a sound study then we have something to work with and that's a start.

But caution is always advised.

 

[BurnA]

@BurnA
I agree entirely with your caution.
It's the line we walk with our hope. I don't mean to over hype this. And it's not about cure/treatment at any rate.

But if it is a sound study then we have something to work with and that's a start.

But caution is always advised.

No overhype perceived!
Even if it's not about cure/treatment a valid diagnostic test would still be a massive leap forward and could pave the way for future treatments. Hopefully we'll get an update soon.

 

[alex3619]

Even if it's not about cure/treatment a valid diagnostic test would still be a massive leap forward and could pave the way for future treatments.

With many diseases a valid diagnostic test changes everything. It opens up research and funding opportunities, changes medical attitudes, changes bureaucratic and government treatment of patients, it even changes community viewpoints. Its like the base of the Holy Grail, we just have to find the rest of it. Yet now we are waiting to have that base authenticated.

 

[Sea]

In the article they made it sound like Gradisnik used the test to diagnose herself with ME...

That would be an error in the transcript. Those words should have been attributed to the patient who was also being interviewed.

 

[msf]

I thought so.

 

[SilverbladeTE]

Alex
Loved the "one Ring" quote

So, would that make Wessely, the "Mouth of Sauron"?


Wessely's passport photo, true!! true I'm telling ya!

 

[alicec]

I'm certainly keeping an open mind about positive outcomes from this but I'm not holding my breath, nor getting excited.

I've been to their clinic and was underwhelmed.

The press report is just hype. We hear these types of reports all the time and they don't necessarily mean much. Maybe it is grant funding time and they are trying to get publicity.

Sounds like very early days in the development of a diagnostic test. Patent applications don't mean anything. This is done automatically very early in the process just in case something comes out of it.

I've read the letter to the editor (This is a mini-paper. It gets you a publication when you don't have enough new information for a full paper. Maybe they are planning on presenting the data at a conference and want to make sure they have prior publication rights to it.), also the quote from the press report describing what the test is about.

It does sound like the test could be based on the differences in SNPs described in the paper. Sounds like they could be looking for these differences as translated into the ion-channel receptors on the surface of white blood cells. I could be reading the wrong thing into these vague quotes of course but that's how it seems to me.

The main problem lies in the reported SNP study. It is very small (100 patients) with very basic statistics. It probably means very little. We have just been reminded in the recent series from @Simon on the Power and Pitfalls of Omics of Prof George Davey Smith's expert critique of these types of studies. To mean anything they need to be big (1000s) and analysis needs to be much more sophisticated.

 

[Bob]

To create and validate a biomarker, first they have to find one, then they have to validate it in repeated studies, then they have to test it on a large population to find out what proportion of patients it selects (sensitivity) and how many healthies and other types of patients it selects (specificity). Not an easy project especially with a heterogeneous cohort.

 

[Snow Leopard]

http://www.la-press.com/genotype-fr...m3-ion-article-a5387-abstract?article_id=5387

A letter to the editor, sigh.

None of the findings are statistically significant when correcting for multiple comparisons.

I don't really believe there are any genetic findings worth investigating out side of a whole genome study...

@Valentijn are any of these SNPs tested with 23andme or similar? *hint*

 

[alex3619]

If they are talking about snps, the overwhelming probability is its all about false positives. They have to prove otherwise.

We have had evidence that the 2 day CPET might be diagnostic starting from 2007. We are still waiting to see if it will ever be validated as diagnostic. Its looking good, but has major problems with impact on patient health.

The Lights' work is now getting old, and continuing. Its still not validated as diagnostic.

Issues with snps always need to be validated by specific and focused research. This requires non-genomic studies. The genomic stuff, including most work based on big data, has to be specifically validated with more selective biochemical studies. Is the snp translated? What impact is it having? What secondary consequences? What might it explain?

Funding here is weird. It is not clear that any press release will result in more funding. What funding? From where?

 

[alex3619]

Loved the "one Ring" quote

 

[allyann]

Here is the press release from Griffith University. https://app.secure.griffith.edu.au/...r-chronic-fatigue-syndrome-on-its-way/?src=hp

I for one would rather put my faith and support in researchers who are investigating bio-markers and pathomechanisms rather than bag and dismiss every study that comes out. These guys do their research on very little budget - the Australian government has spent $1.6 mil in 16 years on research (and estimates are now suggesting less than this has been spent). Most of the research that Griffith does is privately funded.

 

[alex3619]

Most of the research that Griffith does is privately funded.

... plus a huge chunk from my state government. But yes, most of it is private. Federal funding is a joke here.

 

[alex3619]

Here is the press release

Thanks.

The end of the press release probably tells you the primary motivation:

Awareness and support of CFS is currently gathering momentum in Australia, with a recent Senate Estimate Committee highlighting the requirement for increased research and funding regarding the condition.
https://www.facebook.com/SenatorLudlam/videos/vb.17351204469/10153980238139470/?type=2&theater

Our federal government is under very public pressure to explain the lack of research funds, the lack of specialist care for patients, the lack of support services for patients, and so on. Its also a Federal election year, just as it is in the USA.

 

[Justin30]

I read through this and just happy that they are finding something different/wrong in ME/CFS Patients....even if it doesnt pan out there are reasons i like it:

I like it because they are starting to see that it is a biological disease

I like it because its coming out of an area other than the US

I like it because it goes against PACE

I like it because Drs are validating our disease

I like it cause its in the media

I like it because it uses statistical impacts on the population

I like it because it gives hope

I like it because they may have actually found something...

After all this Coyne and NIH crap thats flying around how about we rejoice for a day put down guns and hope for something good....

 

[alicec]

I for one would rather put my faith and support in researchers who are investigating bio-markers and pathomechanisms rather than bag and dismiss every study that comes out.

I like it because they may have actually found something...

The problem is that the study described in the letter to the editor is very poor and is unlikely to mean anything.

I appreciate the other points raised but it is so disappointing to see yet another small SNP study with inadequate statistical analysis when it has been known for a long time that much more is needed to give meaningful results.

 

[Justin30]

@alicec ....thats why i memtioned yhat it may not pan out.

It is a glimmer of hope and may spark and increase in funding in this country...who knows???

I sure don't...

Would be nice to see other countries start funding research....agreed?

This may elicit something...as I read one of the most hoffific stories of a severe ME patient from Australia on another thread and it made me sick... so hopefully they look at this study and say he we have a health concern and step up and increase research funding....

Bottom line is that this disjointed ME community should figure a way to unite on a larger scale....