Tests to definitively diagnose cfs

[knackers323]

I read an article saying that Dr Alan Light has come up with a gene test to definitively diagnose cfs.

Another article said that Griffith uni is on the cusp of developing a breakthrough diagnostic test.

Anyone heard of these?

 

[alex3619]

There are threads on these all over PR. Use Google and run a search on keywords. To this add Workwell Foundation, Julia Newton, Stanford and Japanese brain scans, and so on. No such diagnostic test is recognized yet, but the pathophysiology is being worked out. We are where RA or MS were decades ago - no cause but the pathophysiology is finally being revealed.

 

[fibrodude84]

I don't know if this is possible since a syndrome is a collection of symptoms we all share but we may have varying reasons for it. Maybe you have a viral reactivation and I have an autoimmune dysfunction and the next guy has a mitochondrial problem. There may be many sub-types.

 

[WillowJ]

There may be many sub-types.

True. But tests are being proposed which may work for various subtypes, though none are yet validated as diagnostic. But I think this is coming.

We also have test(s) which might possibly indicate pathology common to us all, though shared by other conditions as well, such as NK cell dysfunction--this would be analogous to ANA in Lupus; it is used as part of the diagnostic, but is not unique to Lupus, while SLE itself is now thought to be more than one disease.

 

[knackers323]

Well if the test hasn't been developed it makes you wonder why the doc would come out and say that he has. It just makes him look bad

 

[WillowJ]

Well if the test hasn't been developed it makes you wonder why the doc would come out and say that he has. It just makes him look bad

Dr. Light and the others did not claim this. Their claims were discovery or near-discovery of possible diagnostic tests, which is fair.

http://www.cfstreatmentguide.com/blog/new-diagnostic-tools-for-mecfs

Alan Light has been studying fatigue for decades, but teamed up 10 years ago with his wife, who has been working on understanding fibromyalgia and pain. Their latest findings are part of a National Institutes of Health study involving about 140 patients with chronic fatigue syndrome in Utah.

The mechanism for obtaining a gene expression profile from patients is already patented by the university, as there is hope to turn it into an actual diagnostic tool all doctors can use to confirm what is going on in someone's body.

http://www.deseretnews.com/article/...ia-have-hope-in-new-diagnostic-tool.html?pg=1

This is just one of several articles that has been published within the last few weeks proclaiming a possible biomarker for ME/CFS. Dr. Sonya Marshall-Gradisnik at Grifffith University in Australia says her team is on the cusp of a breakthrough for a biomarker. And, based on the recent neuroinflammation study by Yasuhito Nakatomi et al. in Japan, PET scans are also being considered. In the meantime, Dr. Betsy Keller has shown, yet again, that ME/CFS patients show unique responses to a 2-day CPET. She believes the test can serve as a diagnostic tool.

following the links:

Marshall-Gradisnik et al.:

DR SONYA MARSHALL-GRADISNIK: We're finding unique potential bio-markers, those unique potential bio-makers may be developed into a suite or a diagnostic test or screening test.

AIRLIE WARD: Five years ago Dr Gradisnik decided to investigate changes in immune function in chronic fatigue patients, particularly looking at white blood cells and how they fight infection.

DR SONYA MARSHALL-GRADISNIK: And those results turned out to be very promising that is they were unique in their findings and subsequently we've expanded to very large international research projects.

Nakatomi et al.

However, the authors suggested that their work should be viewed as a "proof of concept" that brain scanning could be a useful way to screen for chronic fatigue syndrome, to both diagnose the disease and assess disease severity on a case-by-case basis.

Keller et al.

Our work confirms that repeated CPETs warrant consideration as a clinical indicator for diagnosing ME/CFS.

So far as you know is this pattern unique to chronic fatigue syndrome? Not sure- there are a couple of patient groups who can’t reproduce VO2max, but have a definitive and objectively diagnosed disease, whereas those with ME/CFS do not since there is no objective indicator of the illness

Read more: ‘A Foreign and Illogical Result': Dr. Betsy Keller on Exercise Testing in Chronic Fatigue Syndrome (ME/CFS) http://www.cortjohnson.org/blog/201...er-exercise-testing-chronic-fatigue-syndrome/

 

[knackers323]

Anyone heard any update on either of these diagnostic tests?

 

[taniaaust1]

Dr. Sonya Marshall-Gradisnik at Grifffith University in Australia says her team is on the cusp of a breakthrough for a biomarker

Their is another ME/CFS research team in Australia (one in Sth Australaia) following up on a different biomarker too then what the Griffith Uni team is doing.

Ive been in their original research and in more recent times (last year) their followup study which was done as a confirmation one 7 years after the original.

Hopefully they got enough of us back from the original group to have made this study good enough to be able to get published when completed (I heard some of us had even moved overseas so they trying to track us down from everywhere). I think it was they needed at least 10 or maybe it was 20 of us from the original study years ago to confirm their findings.

Their biomarker (thou maybe not specific?? so maybe would have to be used with another or other ME/CFS biomarkers) is to do with the brain and shrinkage of a certain part of our brain. In the first study, they found that they could actually tell how long ME/CFS (CCC defined) people had been sick for by the amount of shrinkage. The longer we are ill with ME.. the more of our brain shrinkage there is. Hence why the follow up 7 years later to see if that still holds true for the orignals and confirms first study.

My brain now should be just like someone who had ME/CFS 7 years longer then me in the original study and should of worsened along their graph. (they also did some first time study of some completely not looked at before in ME things.. eg the very backs of our eyes which is the best indication on what is going on with nerves into our brains).

Even if they didnt manage to get enough of us back for the follow up confirmtion part of the latest study, their latest study will still be very interesting due to the extra things studied this time with us and a new group of ME/CFS people.

Anyway.. if you have ME watch out for the Australia studies as most coming out of here use the CCC definition or maybe even the international ME one in their participants selection or ME immune markers (on top of having the participants meet the Fukuda or other CFS defintions too). Hopefully with them being so selective.. we may see usable biomarkers coming out of Australia.