The Courier Mail: Australian scientists prove CFS is real and have discovered a test for it

[Alvin]

I understand why, it's part of the game to get funding, but patient's shouldn't expect this to work out necessarily. If it does, great, but we'll have to see.

Unfortunately making up nonsense as a way to get money can easily blow up in their and all of our faces
Credibility matters to those who don't peddle in alternative facts, and making grandiose claims can make people take us even less seriously so if this is how they do things i think they should move on to another field that could use their talents, perhaps psychology?

 

[Simone]

Interesting because of calcium's importance in cell-signalling. I wouldn't be surprised if we do have a calcium problem in the cells, but I also wouldn't be surprised if a number of other diseases have similar problems. As others point out this group tend to be a bit sensationalist about their findings - I understand why, it's part of the game to get funding, but patient's shouldn't expect this to work out necessarily. If it does, great, but we'll have to see.

I agree. As far as I'm aware, they've yet to do a study comparing ME/CFS with other illnesses (at least, there's nothing published, in any case. Whether they have something in the pipeline is another story). Until they can demonstrate adequate sensitivity and specificity, they are far from having a diagnostic test.

 

[Alice]

We are experts at being patients but when it comes to complex bio science we aren't really in any position to comment. What these guys have had their papers floating around for a few years now and no-one has torn them apart. The bio-marker may not be exclusive to ME/CFS but proving biological abnormalities that may/may not be common to other diseases is a huge step away from the bps model that many of us are subjected to. Instead of conjecturing about something we can't verify ourselves one way or another maybe we could hassle the scientists to validate or destroy the NCNED theories. Either scenario of good for patients. The drug they are testing has been used by clinicians for a long time. We desperately need drugs.

 

[Alice]

I agree. As far as I'm aware, they've yet to do a study comparing ME/CFS with other illnesses (at least, there's nothing published, in any case. Whether they have something in the pipeline is another story). Until they can demonstrate adequate sensitivity and specificity, they are far from having a diagnostic test.

They studied MS and ME/CFS. Having a bio marker even if it is not exclusive to ME/CFS and even if it only selects a subset of patients is a huge step forward. The validation of biomarkers is going to take years. It appears that ME/CFS is very common and to go from a disease that people think doesn't exist to one affecting millions of people is going to meet resistance. We have markers already we have clear physiological abnormalities that as patients we can measure, quantify and use to steer meaningful research.

 

[Alvin]

The drug they are testing has been used by clinicians for a long time. We desperately need drugs.

The validation of biomarkers is going to take years

It appears that ME/CFS is very common and to go from a disease that people think doesn't exist to one affecting millions of people is going to meet resistance

The problem i have with this is that this "discovery" is that my BS detector is flashing like a Christmas tree (fitting at this time of year). Now i'm not wedded to my opinions, if i'm wrong then they can prove themselves but having a history of making grandiose claims and making claims that don't pass the sniff test and are unequivocal doesn't give me any confidence in their proclamations and if as you say validation would take years, they are apparently already claiming it.
I would love to be proven wrong here, repurpose some calcium interacting medication and fix us so we are normal and i will sing their praises for the rest of my life, as i'm sure we all would, at this point i am highly skeptical. If i had money to fund research groups they are not ranking highly on my list.

 

[Trish]

I remember reading a while ago that they had decided they had found a biomarker on the basis of quite a small sample, and on that basis were applying for a patent, so were not revealing the details.

What I don't remember seeing is any large studies to validate it, both as consistently diagnosing ME patients, and as a marker that distinguishes ME from other illnesses. I think on the strength of the publicity of their initial claims, they got a significant amount of funding.

I am not clear whether this latest announcement is just more publicity, perhaps in advance of marketing their test, or whether they have actually taken that further step forward and completed the validation successfully.
Are there any published papers on this?

 

[Indigophoton]

The fact that Jay Goldstein signposted calcium channel blockers years ago, and as a result I suspect many patients have tried them experimentally (see all the threads on PR and elsewhere for instance), suggests that this kind of drug will not be a panacea, or we'd have heard about it from patients themselves.

 

[Joel]

We are experts at being patients but when it comes to complex bio science we aren't really in any position to comment. What these guys have had their papers floating around for a few years now and no-one has torn them apart. The bio-marker may not be exclusive to ME/CFS but proving biological abnormalities that may/may not be common to other diseases is a huge step away from the bps model that many of us are subjected to. Instead of conjecturing about something we can't verify ourselves one way or another maybe we could hassle the scientists to validate or destroy the NCNED theories. Either scenario of good for patients. The drug they are testing has been used by clinicians for a long time. We desperately need drugs.

I've seen people make critical reviews of their research methodology in the past, I haven't looked closely at their work lately but their earlier stuff certainly had significant problems. It's possible that no one has torn them apart because it hasn't been significant enough work to bother. If they're talking about drugs then they may have done enough research already but until it's published it's hard to accept. In fairness they probably aren't moving onto drug trials just yet but are probably just sharing a bit of hope with patients at an early stage. I don't have a problem with that really, only that patients really shouldn't get their hopes up too much because it may not work out. We need to know what research they've done first and what quality it is.

 

[Simone]

Having a bio marker even if it is not exclusive to ME/CFS and even if it only selects a subset of patients is a huge step forward.

If it doesn't differentiate between ME/CFS and other illnesses, then it is merely a biological abnormality which they have found (of which we have many already, as you say) and not a test. If they put out press releases claiming to have identified an abnormality, that would be one thing, but they are claiming that they have a diagnostic test already. They are not claiming to merely identify a subset. A diagnostic test must, by definition, be able to discriminate between different illnesses. Yet they have published nothing to demonstrate that it does.

The validation of biomarkers is going to take years.

Exactly. And yet they are claiming that theirs is already validated. Right now, this reads like they are over-reaching. I would love to see their research come to fruition and their hypothesis be confirmed, but it is just too early to make the claims which they are making.

 

[Valentijn]

We are experts at being patients but when it comes to complex bio science we aren't really in any position to comment.

Not true. Anyone can learn to assess scientific research - there are websites and even free classes on how to do it, with plenty of opportunity to practice and learn from others in the research threads on this forum.

It also doesn't matter how complex the biology is or isn't, if there are flaws with the methodology. Supposedly we are also too uneducated to assess psychosocial research, yet we manage that very well, and it has been essential in protecting us from bad science.

What these guys have had their papers floating around for a few years now and no-one has torn them apart.

Not true. Their SNP studies have been criticized by patients (including myself) due to extensive problems. And all of their studies seem to suffer from poor funding and a small sample size. While some of that is not their fault, it does limit the reliability of their results.

The bio-marker may not be exclusive to ME/CFS but proving biological abnormalities that may/may not be common to other diseases is a huge step away from the bps model that many of us are subjected to.

I agree that this group doesn't do us any harm with their inflated claims, but the work they produce is still of limited use to us due to the flaws in some of it. I doubt patients would bother with letters to the editor to point out their flaws, a la PACE, but some of their SNP studies are just as embarrassingly invalid.

Instead of conjecturing about something we can't verify ourselves one way or another maybe we could hassle the scientists to validate or destroy the NCNED theories.

We can easily verify ourselves where their methodology is insufficient to support their claims. If the relevant research hasn't been published yet, we cannot draw conclusions about its validity - but in that case they also shouldn't be promoting claims based on unpublished data.

And while the situation has improved in the past year, history has proven that we make more progress regarding science in ME when patients take the initiative as much as possible. There are a lot of prominent and amazing academics involved now, but they're following a path which was trailblazed by patients and advocates.

Either scenario of good for patients. The drug they are testing has been used by clinicians for a long time. We desperately need drugs.

We need drugs ... which work. If the underlying science is flawed, the resulting conclusions about pathology and treatment are very unlikely to be helpful, and maybe even harmful - just like with psychosocial research and treatments.

I think this is a good research group with the right focus and generally looking in the right directions, but they have a history of hyping their results. It's probably necessary for them to get funding, especially with Australia's generally backwards view of ME/CFS. But that doesn't make their research more rigorous or their results more reliable than is determined by the methodology which they use.

 

[sea]

I don't really know how research groups work in general. The research group at Griffith is composed of Professors Gradisnik and Staines and a bunch of Phd students each looking for a thesis. Something may come of it or it may not. I don't expect there will be any considerable budget for phd students' research. Anything they think may need following up would need to attract significant research dollars to do a study of reasonable size.

I've donated blood for most of their studies. I do believe they mean well but I don't have high hopes that anything will come of it.

 

[Simone]

And all of their studies seem to suffer from poor funding and a small sample size.

Actually, they have been well-funded. They have received several large grants for their work. So lack of funding doesn't explain the issues.
https://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases/research

I agree that this group doesn't do us any harm with their inflated claims, but the work they produce is still of limited use to us due to the flaws in some of it. I doubt patients would bother with letters to the editor to point out their flaws, a la PACE, but some of their SNP studies are just as embarrassingly invalid.

I think there is the potential for harm, indirectly (though it is tantamount to heresy for me to be suggesting this, as they are revered in the patient community in Australia). These sorts of articles help create the impression that there is only one basket for the money to go to. They are excellent at getting donations from the patient community, as many patients take their claims at face value and believe that they have a test ready to go. They regularly tout the number of studies they have published, and funders in this country seem to be impressed with them (which says something about how closely their work is read). We have several other groups doing good work in Australia. I would rather more money to other groups now that NCNED has millions.

 

[Alvin]

Actually, they have been well-funded. They have received several large grants for their work. So lack of funding doesn't explain the issues.
https://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases/research



I think there is the potential for harm, indirectly (though it is tantamount to heresy for me to be suggesting this, as they are revered in the patient community in Australia). These sorts of articles help create the impression that there is only one basket for the money to go to. They are excellent at getting donations from the patient community, as many patients take their claims at face value and believe that they have a test ready to go. They regularly tout the number of studies they have published, and funders in this country seem to be impressed with them (which says something about how closely their work is read). We have several other groups doing good work in Australia. I would rather more money to other groups now that NCNED has millions.

This is insane, we struggle to get money for peoeple who are ethical and would do real research to help us, and these shysters get all the money the need and put out junk
Same thing with PACE/smile/LP etc, they seem to have lots of money to also waste, money that could actually be used for real research by actual scientists

 

[Esther12]

I think that some of the criticism here is too strong, especially when we haven't seen what from the researchers led to this headline. It's good to be critical of these sorts of hyped stories, but it's not like they're encouraging patients to engage in a challenging or risky treatment based on spun results. Sadly, some degree of hype seems to be a relatively normal part of the culture of science these days. It's always worth being critical of this when we spot it, but it's not like all cases are equally bad.

 

[Alvin]

I think that some of the criticism here is too strong, especially when we haven't seen what from the researchers led to this headline.

When you have a history of making grandiose claims and are rolling in money and making more...

 

[sea]

I think there is the potential for harm, indirectly

I agree. The overstated results have at least 2 indirect outcomes that have potential for harm.
1. If the funders believe this group have the breakthrough they won't fund alternative research/researchers.
2. Articles like this make it seem that ME/CFS is easily diagnosed and quite possibly easily treated by a common inexpensive medicine. It influences the attitudes of those responsible for making welfare benefit decisions and we are seeing more and more of the attitude that ME/CFS is not permanent, not serious and easily treatable.

 

[sea]

When you have a history of making grandiose claims and are rolling in money and making more...

I do think they believe they are giving the patients hope by indicating they are so close to solving it.
I also think they believe they have to be very public to attract research dollars.
I wouldn't say they are rolling in money, and I doubt the money is of personal benefit to them.

 

[Alvin]

I do think they believe they are giving the patients hope by indicating they are so close to solving it.
I also think they believe they have to be very public to attract research dollars.
I wouldn't say they are rolling in money, and I doubt the money is of personal benefit to them.

If the wasted money had gone to Dr Davis instead we would be further along then we are today

 

[Andy]

If the wasted money had gone to Dr Davis instead we would be further along then we are today

Sorry, I don't agree that we can assume that.

Actually, they have been well-funded. They have received several large grants for their work. So lack of funding doesn't explain the issues.
https://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases/research

I think there is the potential for harm, indirectly (though it is tantamount to heresy for me to be suggesting this, as they are revered in the patient community in Australia). These sorts of articles help create the impression that there is only one basket for the money to go to. They are excellent at getting donations from the patient community, as many patients take their claims at face value and believe that they have a test ready to go. They regularly tout the number of studies they have published, and funders in this country seem to be impressed with them (which says something about how closely their work is read). We have several other groups doing good work in Australia. I would rather more money to other groups now that NCNED has millions.

I agree. The overstated results have at least 2 indirect outcomes that have potential for harm.
1. If the funders believe this group have the breakthrough they won't fund alternative research/researchers.

These points, in my opinion, could easily be said about OMF (for Sea's point, instead of funders read private donors). I'm not saying that we shouldn't fund OMF, I'm not saying that OMF definitely won't make the breakthrough that we all would like so much, but I think far too much faith (and support and donations) is being put into the efforts of OMF to the detriment of other researchers/groups.

 

[Alvin]

but I think far too much faith (and support and donations) is being put into the efforts of OMF to the detriment of other researchers/groups

I don't agree with this

They are taking steps such as getting every FDA approved drug and getting anyone good they can aboard so on.
That said i agree we should have many teams working on many fronts, we don't know who will discover something we need but without money progress is glacial if not backwards. Its quite safe to say that money spent on ridiculousness is not helpful and can even be harmful. If we didn't have PACErs fighting us we would be better off.