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

Australian scientists prove Chronic Fatigue Syndrome is real and have discovered a test for it

- The Gold Coast team has proven that patients with ME have lower levels of calcium coming into their cells, that their cells store less calcium and this is the basis of their illness.

- Work is under way with a leading pathology company to refine the test and Professor Marshall Gradisnik says the test will be vital for the many thousands of patients who sometimes have to wait years for an explanation for their ill health.

- Now the team is on the hunt for potential treatments for the disease.
They are looking at blood pressure medications and other medicines that target receptors that bring calcium into cells.
These are low cost medications that are already on the market and used for other diseases so we know they are safe to use and could quickly be bought to market for a new purpose.

 

...and?

why does having lower levels of calcium in cells cause ME?

 

Thanks did you catch the name of the hypertension drug they’re testing? Unlike most people with ME i have hypertension (due to being overweight)and could see if my GP will swap me to it.

 

The article says:
The Griffith University scientists are instead looking at the blood pressure medicine calcium channel blocker nifedipine (brand name Adalat).
While it blocks calcium getting to the heart it works in the opposite way in cells stimulating calcium receptors says Dr Staines.
They are also trialling many other medicines they hope may help.

 

Ok thanks I already take amlodipene which is similar to nifedipine and supposedly better for hypertension so will be interesting to hear more about this

 

There are several threads on Phoenix Rising on nifedipine.

 

Just to note that the related calcium channel blocker nimodipine is third on the list of useful meds compiled by Jay Goldstein.

According to the British National Formulary,

https://bnf.nice.org.uk/drug/nimodipine.html

Note the bit about vascular tone - possibly ties in with the NO hypotheses?

 

Seems doubtful that there will be results strong enough to justify the headline claiming that they have a test for CFS.

Given all the problems with even saying what 'CFS' is, that would be a pretty amazing breakthrough. Given the history of misleading headlines around CFS, I'm not going to get too excited.

 

It interests me, a bit, because a previous calcium channel blocker I was on, several years back, helped with pain, it didn't cure ME however.

Due to NICE guidelines I was pulled off it due to it potentially cause problems with diabetes, and placed on amlodipine (which as far as I, or test results, can tell, does sod all) in much the same way as I had previously been pulled off atenolol (a beta blocker that actually worked) a few years previous to that.

edited to insert - my father also had hyperparathyroidism (I think, it may have been hypo), which essentially leads to a defective calcium metabolism, when I asked to be tested for this my GP did a TSH test (something I didn't find out until I got a copy of my medical records a few weeks ago)

So calcium channel blockers...something I keep an eye on.

 

I feel the same. Have gotten a bit cautious over the years, but of course always glad to see research taking place.

 

This makes no sense since the heart is made of cells.

I cannot access the media release but it looks like pure hype.

People need to remember that a test is never more precise at diagnosing than the clinical diagnosis it is supposed to be testing for. The best it can do is correlate 100% with the clinical diagnosis - which means it tells us nothing we did not know already.

Where tests are useful is in creating a new diagnosis based on a pathophysiology. So a test of calcium going in to cells might be a very useful way to show that a proportion of people now diagnosed with CFS in fact have a problem with calcium going into cells.

 

It would be interesting to know if this story was prompted by imminent to-be-published research or just a round up of some of the work that NCNED has done so far. Some of the stuff they've done on calcium receptors has definitely been in the interesting (but needs replication) bucket. I also know they've had a patent out for a 'CFS test' for a while, which IIRC was based on certain SNPs - the original paper's sample size was low to draw much in the way of statistical confidence for the SNPs identified but I believe the patent application also indicated it had been replicated in later, unpublished research.

(Not that a patent application should be seen as evidence something works, given how early patents are generally registered)

 

Seems far too precise to be 'the answer'. I guess it's just an attention grabber.
But I am curious as I've not yet read enough to have heard about calcium channels in this context.
I had hypercalcemia (blood) in my 30s which lead to discovery of a grossly enlarged parathyroid gland and a (single) parathyroidectomy. I've always been intrigued about any cause and effect iterations on this as I don't have any reason (history, family history, environment, behaviour, health status etc etc) to have had this problem. Of course sometimes 'stuff happens' but it might be worth finding out more about calcium channels (something I hadn't really thought to look at yet).

ETA can anyone recommend a thread to start? Basics? I don't need it dumbed down but more concise would be nice.

 

Their SNP research has been consistently awful, from a statistical standpoint. No conclusions can be drawn from any of it that I've seen.

 

I have the impression that this group have hyped up tests before when they were on small samples. But perhaps this is a repeat of the same hype.

 

For some strange reason the whole article is available for me, but it doesn't seem to be so for others?
I'd very much like to share the text with you, but that would probably be violating copyright rules, wouldn't it?

Anyway, it is not an in depth article. It says 240 000 Australians suffer from CFS and tells the story of an ALF legend - Alastair Lynch - who has suffered so badly from ME that he passed blood and slept up to 18 hours a day. Then it continues to professor Marshal Gradisnik and her research. I guess it will be fine to add a tad more from the article concerning the research:

Public health physician Don Staines, who is involved in the project, says patients often develop ME after a virus or a trauma or other illness.

Calcium signalling is vital in the brain and spinal cord, the pancreas where it helps regulate insulin secretion, it’s also involved in blood vessels, the heart, the gastrointestinal tract, the kidneys and diseases of the brain, he says.

While studying the illness the scientists found changes in the micro RNA of ME patients, changes that could be detected in blood plasma and this has led to a potential blood test for the disease.

Work is under way with a leading pathology company to refine the test and Professor Marshall Gradisnik says the test will be vital for the many thousands of patients who sometimes have to wait years for an explanation for their ill health.

I have the same impression as you, @Adrian , that we have seen similar headlines like this before from these Australian researchers and I worry it might become a bit Peter and the Wolf. But I also understand making headlines might be necessary for more research funding..

 

Yeah, they have a definite history of being very "enthusiastic" about their research results, so much so that "doing a Griffiths" is slang between me and one of my friends for hyping results of studies.

 

Exactly. I have seen nothing impressive from this group. Apart from the abysmal SNP studies, they persist in doing small phenomenological studies and making grandiose claims.

Interestingly, many years before I succumbed to ME/CFS, I developed apparent hypertension (later diagnosed as labile hypertension, a fancy name for transitory episodes of hypertension; doctors were convinced I would end up with permanent hypertension but I never have. Personally I wonder if this was an early sign of what later became an autonomic instability that manifests itself in various ways).

One drug which I tried was a calcium channel blocker - fairly sure Adalat but it was such a long time ago I can't be certain. I had an extremely unpleasant drug reaction - instant migraine and general intense malaise.

I would never again try a calcium channel blocker.

 

This does not sound believable, and given the replies in this thread i am even less convinced. Making grandiose claims without data that stands up doesn't help anybody.

 

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.