ABC: Your disease is real:Breakthrough in diagnosis of chronic fatigue syndrome

[Kalliope]

Your disease is real: Breakthrough in diagnosis of chronic fatigue syndrome
Researchers found chronic fatigue syndrome and the related myalgic encephalomyelitis, or ME, is a calcium ion channel impairment condition.

For those who are living with ME/CFS, the announcement proves the disease is not a physiological or a psychological condition - it's real.

Professor Don Staines, a clinical professor from Griffith University's National Centre for Neuroimmunology and Emerging Diseases (NCNED), said the findings were a "watershed moment".

"We've demonstrated there are impairments in a particular group of calcium ion channels, and this causes impaired entry of calcium ions into the cell," he told Hack.

In simpler terms, this means there is a lack of calcium in the cells and in the cells ion channels, which affects their ability to function properly.

 

[Sly Saint]

"For those who are living with ME/CFS, the announcement proves the disease is not a physiological or a psychological condition - it's real."

?

eta:
"Professor Staines said they "still have some way to go before we get a diagnostic test," but he's confident a test will be ready in the future."

""For me, the biggest take away from this breakthrough is that it is neither a physiological or a psychological condition; it is pathological. Graded exercise therapy and cognitive behavioural therapy simply do not, and cannot work, for people suffering with ME/CFS," Senator Steele-John said."

pathological:
"involving or caused by a physical or mental disease."

what are they on about?

 

[Esther12]

This group do seem to generate some odd press coverage. Maybe there will still be some useful findings from them?

 

[adambeyoncelowe]

Could calcium signalling affect mitochondria and perhaps result in the brainstem abnormalities we've seen elsewhere?

 

[alex3619]

I think this group is involved with local activism, and hence with approaches to our politicians on this issue.

If calcium channelopathy can indeed be shown to be diagnostic, and we might be several years away from that, then its a big step. On the other hand it might be more pathophysiology for a subgroup. Its also important to find out if the calcium channelopathy issue occurs in other tissue types, the receptor is certainly widespread. Depending on the mechanism this might be the case, and might explain just about everything. Lots of maybes, some years to go before we know for sure. I still think this is most likely a secondary mechanism, but still important, presuming these findings keep being investigated and are validated further.

Having connections with local activism is important for medical and research politics. While the media is likely to have a skewed view this does not mean it should not happen. The media will often have a skewed view. They report without properly investigating nearly all the time.

I would really like to know if this channelopathy can be found in sepsis.

 

[Forbin]

According to Wikipedia...

The mechanism that leads to vasoconstriction results from the increased concentration of calcium (Ca2+ ions) within vascular smooth muscle cells.

Calcium channel blockers are prescribed to treat hypertension for that reason. So, something else that interferes with the transport of calcium ions might also impair vasoconstriction - and vasoconstriction can be necessary to counteract orthostatic hypotension.

 

[Barry]

"Forcing someone to do exercise when their muscle cells are not producing enough ions to work properly is nothing short of cruelty, and these kind of treatment programs must end so that proper treatments can be found."
[My bold]

 

[Lucibee]

I think the "news" here is this:

Last week, a Parliamentary Friends Group for ME/CFS was launched in Canberra. Representatives from all sides of politics turned up to support research into the disease, including Greens Senator Jordan Steele-John.

The science reporting is terrible! They could at least have provided a more correct version of what the senator said rather than simply repeating him:

"For me, the biggest take away from this breakthrough is that it is neither a physiological or a psychological condition; it is pathological. Graded exercise therapy and cognitive behavioural therapy simply do not, and cannot work, for people suffering with ME/CFS," Senator Steele-John said.

"Forcing someone to do exercise when their muscle cells are not producing enough ions to work properly is nothing short of cruelty."

 

[Matt (@DondochakkaB)]

According to Wikipedia...


Calcium channel blockers are prescribed to treat hypertension for that reason. So, something else that interferes with the transport of calcium ions might also impair vasoconstriction - and vasoconstriction can be necessary to counteract orthostatic hypotension.

See now, that, is really interesting.

 

[Peter]

Always a bit sceptic and wish one could shy away from headlines like “its not psychological”, “it’s real” and such. These headlines are poor. Says quite a lot of the public perceptions and how bad it is in that sense, but we’re beyond this now. For long. Makes me wonder about the real knowledge of the ones stating this and could we please move beyond this now. Could we please raise the level, not go there every time.

 

[alex3619]

Senator Steele-John said."

If there are major problems with media representation here, a big part is that its still a surprise to many, including politicians, that there is strong evidence that ME is physiological. Yet that evidence goes back decades, there are multiple layers, and I suspect there might now be thousands and not just hundreds of biomarkers, but we need further investigation to be sure. The general public is still surprised by what is obvious to people following the science. WE got the message long ago, they (the general public) are still finding out. Psychobabble claims have had a lot to do with this. I can still remember when Freudian psychoanalysis was still acceptable ... that is within my lifetime.

 

[DokaGirl]

Thank you alex3616. I am paraphrasing your words here:"layers of evidence going back decades". Thank you for this great description. Scientists were doing some relatively sophisticated work in ME back in the 1980s. Decades ago they were talking about metabolic and immune dysfunction. Science has generated many potential biomarker finds for ME.

I do very much hope all these studies come together soon. Perhaps premature, but I'm speaking from frustration, and a three decade view of this mess - couldn't we have a package of biomarkers developed for clinical settings?

We have a package of tests, as per Dr. Lily Chu's presentation to the FDA in 2013. Why not a package of biomarkers?

In the 1980s, and maybe before, sensitivity to alcohol for pwME was recognized, and some scientists and clinicians discussed this as a potential biomarker. Apparently not all pwME are effected, but why not have this as one biomarker, along with some notable others? I understand MS has a group of tests to confirm that diagnosis; and there are no doubt others.

However, I very much dread our foot-dragging governments will be the ultimate decision makers about what makes it as a biomarker, biomarkers. Since, they are still
very reluctant to fund much if any biomedical research, or alert health care professionals to the biomedical reality of ME, we could be waiting for a very long time yet.

 

[adambeyoncelowe]

Thank you alex3616. I am paraphrasing your words here:"layers of evidence going back decades". Thank you for this great description. Scientists were doing some relatively sophisticated work in ME back in the 1980s. Decades ago they were talking about metabolic and immune dysfunction. Science has generated many potential biomarker finds for ME.

I do very much hope all these studies come together soon. Perhaps premature, but I'm speaking from frustration, and a three decade view of this mess - couldn't we have a package of biomarkers developed for clinical settings?

We have a package of tests, as per Dr. Lily Chu's presentation to the FDA in 2013. Why not a package of biomarkers?

In the 1980s, and maybe before, sensitivity to alcohol for pwME was recognized, and some scientists and clinicians discussed this as a potential biomarker. Apparently not all pwME are effected, but why not have this as one biomarker, along with some notable others? I understand MS has a group of tests to confirm that diagnosis; and there are no doubt others.

However, I very much dread our foot-dragging governments will be the ultimate decision makers about what makes it as a biomarker, biomarkers. Since, they are still
very reluctant to fund much if any biomedical research, or alert health care professionals to the biomedical reality of ME, we could be waiting for a very long time yet.

I think the problem is that most of these tests and signs haven't been objectively proven or put to the test in a meaningful way that clearly shows replication and specificity.

For instance, alcohol intolerance can be due to low zinc levels (booze depletes zinc), liver problems and depression. So while it seems like it's a useful tool, I'm not sure how much it really tells us.