Article: Will there ever be a test for chronic fatigue syndrome?

[Sly Saint]

Treating chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), starts with getting the right diagnosis – something that, for many patients, can prove elusive. Characterised by debilitating tiredness, the condition is notoriously difficult to pin down and even more challenging to treat.

CFS/ME expands far beyond exhaustion alone, with patients often also enduring flulike symptoms, musculoskeletal pain and brain fog. Around one in four people with CFS/ME are so severely unwell they are housebound.

The difficulties in obtaining a diagnosis are numerous. Patients typically undergo extensive tests for their various physical symptoms before landing on a diagnosis of CFS/ME when no other condition can be found to fit.

Symptoms can be nebulous and vary over time, leading to uncertainty about the underlying problem for both the patient and clinician and many people with CFS/ME also report being repeatedly disbelieved by doctors.

The emergence of long Covid – which some clinicians believe could be CFS/ME presenting at a large scale from one single, identifiable cause – has reopened the discussion around ME diagnosis.

Research carried out at Imperial College London recently suggested that long Covid could be diagnosed through a simple blood test. Researchers have been able to find specific autoantibodies in the blood of long Covid patients that were not found in the blood of people who recovered quickly from Covid-19 or never tested positive for the disease.

Where regular antibodies work to fight off infections, autoantibodies mistakenly target and react with a person’s own tissue and organs, rather than invading pathogens.

But while long Covid may well be a subsection of CFS/ME, the condition at large is likely to be a multisystem, multifactorial disease – not every case will have been triggered by one specific viral infection. This means that any objective diagnostic test for CFS/ME will need to be far more complex than a standalone blood test.

Post-exertional malaise and microRNA
There is no objective test for CFS/ME yet, but there have been steps in the right direction.

A key marker of CFS/ME is post-exertional malaise (PEM), the worsening of symptoms within 12 to 48 hours of even minor physical or mental exertion, that can then last for days or weeks. This symptom was utilised by researchers attempting to develop a molecular test for the disease in a November 2020 study published in Scientific Reports.

rest of article here
https://www.medicaldevice-network.com/features/cfs-me-test/

 

[rvallee]

That's a lot like asking whether we will one day build machines that can fly before they were built. If you want results you have to do the work. The work hasn't been done, hence no results. Begin the work and results will be the outcome, this is a simple process, it literally always works out the same way:

1. Do the work: long, boring, works, cures sick people
2. Don't do the work: long, boring, doesn't work, leaves sick people worse off

Same algorithm with literally everything, the same process plays out with climate change. Will we reach 100% renewable energy? Sure, once people decide to do this. But fossil fuels continue to be subsidized by the billions, so it's not happening, because the effort hasn't reached escape velocity. Those subsidies play roughly the same role as the continued funding and propping up of psychosomatic ideology: more efforts invested in obstructing than solving on the problem.

Quit stalling and get to work, damnit.

 

[Forbin]

That's a lot like asking whether we will one day build machines that can fly before they were built. If you want results you have to do the work.

That sounds difficult and expensive. Isn't it easier and more cost effective to listen to the experts who say that we can achieve flight if we just stop fearing gravity and try to jump a little higher each day?

 

[Peter T]

That sounds difficult and expensive. Isn't it easier and more cost effective to listen to the experts who say that we can achieve flight if we just stop fearing gravity and try to jump a little higher each day?

The only difficulty is that there is a difference between ‘costing less’ and being more ‘cost effective’. It would certainly ‘cost less’ to develop your flying programme by will power and graded jumping programmes, indeed I have spent very little on my thirty year yogic levitation programme regularly practicing standing on one leg, which has so far got me 50% of the way there at just the cost of replacing some China ornaments from the mantle shelf.

The alternative of developing an aeronautical engineering solution costs substantially more, but because it actually will achieve flying which the graded jumping can never do means the substantially more expensive engineering approach could simultaneously be regarded as being infinitely more cost effective.

 

[Forbin]

Isn't it easier and more cost effective to listen to the experts who say that we can achieve flight if we just stop fearing gravity and try to jump a little higher each day?

The alternative of developing an aeronautical engineering solution costs substantially more, but because it actually will achieve flying which the graded jumping can never do means the substantially more expensive engineering approach could simultaneously be regarded as being infinitely more cost effective.

To paraphrase Jemaine Clement of Flight of the Conchords... "That's why I said 'Isn't it...?"

 

[Forbin]

To spare patients a full bout of PEM, the research team used a therapeutic massager – an inflatable arm cuff that exerts gentle compressions – to induce a milder form. The 11 housebound CFS/ME patients involved in the initial study all reported headaches, muscle pain and fatigue following use of the massager.

The researchers drew plasma samples from the participants before and 90 minutes after this activity. The samples were then screened for differences in levels of microRNAs.
microRNAs.https://www.medicaldevice-network.com/features/cfs-me-test/

I know this technique for measuring PEM has been discussed before, but I am still somewhat skeptical that "gentle compressions" can induce "mild" PEM. The procedure may be altering microRNAs in some way, but how do they know that these changes are related to "a milder form of PEM?" Perhaps I need to re-read the paper.

My main question, however, is why not enlist a fairly large group of localized ME patients and give them a number to call when they are certain they are experiencing full blown PEM? Someone could then be sent to their location to collect blood. PEM goes on for hours, if not days, so getting a blood sample during the experience should not be that difficult. To get a control sample from the same person, have them call for another blood draw when they feel that their PEM has abated.

I appreciate that the researchers did not want to harm the patients by inducing full blown PEM, but, in a large enough group, some patients are going to come down with full blown PEM on their own.

There may be arguments against this, though. Perhaps too much goes wrong in the blood during full blown PEM, so there's no way to untangle what it all means. Seeing the consequences of a mild form might make it easier to deduce cause and effect.

Just some thoughts...

 

[Snow Leopard]

Any discussion/report that discusses biomarkers/tests that doesn't explicitly discuss sensitivity and specificity suggests they don't know what they are talking about.

I know this technique for measuring PEM has been discussed before, but I am still somewhat skeptical that "gentle compressions" can induce "mild" PEM. The procedure may be altering microRNAs in some way, but how do they know that these changes are related to "a milder form of PEM?" Perhaps I need to re-read the paper.

They don't know. It's funny how anything measured is assumed to be pathogenic, rather than merely an adaptive response, or something due to random chance.

 

[Wonko]

I know that blood glucose goes up when in PEM, even fairly mild PEM - of course being diabetic this info is of no use to anyone as who's to say why it happens, it could be a whole host of things that are related to PEM in my case.

 

[Sean]

It's funny how anything measured is assumed to be pathogenic, rather than merely an adaptive response,...

THIS!

I am fairly sure that almost every (non-random) finding so far is from the body having to deal with and adapt to the underlying primary pathology, not the primary pathology itself. Which is fine for clues, including for possible (non-curative) treatments.

But they are not explanatory.