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Huffington Post - 'It Isn't Just In My Mind!': Four Problems in Diagnosis and Treatment of ME/CFS


Senior Member
England (south coast)
'It Isn't Just In My Mind!': Four Problems in Diagnosis and Treatment of ME/CFS
Tayana Simons

In my previous article about Myalgic Encephalopathy (ME)/Chronic Fatigue syndrome (CFS), Madeleine Lee, long time sufferer of the condition explained her journey of 30 years since she first began experiencing symptoms of the illness.

Although understanding of the condition has improved steadily over recent decades, there is still a gap in knowledge even in clinically advanced countries, as Madeleine explains in her latest video on the subject. Alongside daily experiencing the debilitating symptoms of the condition, such as muscle pain, intense fatigue and cognitive impairments, those who suffer with ME also have to fight even to have it recognised. Here are four of the most common issues in the diagnosis, and treatment, of this life altering condition.

With an accompanying video by Madeleine Lee...


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Senior Member
Logan, Queensland, Australia
I replied:

On point one about tests: it is correct to say there is no diagnostic test. It is incorrect to say there are no tests. CFS or ME have a small list of major symptoms. Most of those are objectively verifiable, and three of those tests originated in the 1940s, the tilt table test, quantitave EEG and carciopulmonary exercise testing. Half of the patients will fail the tilt table test. We don't have good data on the incidence of qEEG showing problems, its a current research topic, but we know its valuable in individual cases. The CPET using the two day protocol is 95% accurate and shows a unique abnormality. This is not enough to claim its diagnostic, but its easily enough to show severe disabliity in many patients.

I then made a follow up comment: For some reason Facebook is posting I am affilitated with Griffith University. I am not. I obtained one of my degrees there.

Oops. Typo.


Rebel without a biscuit
It's not just that it's not just in the mind--it's not in our minds at all.
It may well be I expect in our brain.

This issue is a very sticky one and very confusing--it was quite clever for the BPS people to exploit this and conflate the two.
Mind is almost beyond the purview of neuroscience and more easily studied by physicists--quantum mechanics.

The brain is simply part of the rest of the body with it's own specialised functions and it gives rise to the mind.
How it does that is not clear. The brain does not make choices--the mind does. And we all know here--no one choose this illness or it's perpetuation in our system.

I have a feeling we will need to revisit this issue while the BPS people (to my mind) do not feel they are shuffling the deck chairs just yet.
The still have powerful connections--in a way they are the minions of the powers that want to obstruct progress.