Review Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Quick References. 2023, Agrawali

Kitty

Kitty

Senior Member (Voting Rights)
From @MSEsperanza:

Key Points
  • Myalgic encephalomyelitis/chronic fatigue syndrome (also known as systemic exertional intolerance disease) is a true physical illness characterized by debilitating fatigue that significantly limits patients’ ability to perform basic activities. It is not a psychological phenomenon as it is often thought to be. There is currently no known cause.

  • It is a diagnosis of exclusion made when there is fatigue and 4 or more associated symptoms for 6 or more consecutive months and no other medical condition to explain symptoms.

  • No specific treatments have been proven effective. The mainstay of current treatment is using cognitive-behavioral strategies to gradually increase day-to-day functionality and overall sense of well-being.

  • Coordinating care between medical professionals, patients, families, schoolteachers and counselors, social workers, and mental health professionals is key.
Link (Paywalled)
https://publications.aap.org/pediat...onic-Fatigue-Syndrome?redirectedFrom=fulltext


Citation
Nupur Agrawal; Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Quick References 2023; 10.1542/aap.ppcqr.396144

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Addendum from me:

The author seems to be based at Trinity University in the US, not Trinity College Dublin.

So the double ploy—It's A Genuine Illness (We Know It's Not Really, But Shhh) and Let's Make Sure We Can Still Get The Rehab Grants Even If It Is—seems to have rowed the Atlantic.
 
The paper said:
No specific treatments have been proven effective. The mainstay of current treatment is using cognitive-behavioral strategies to gradually increase day-to-day functionality and overall sense of well-being.
Click to expand...
There are no effective treatments. This is the treatment, which contradicts the very nature of the illness.

Yeah that about sums up the state of things here. "Hey Sisyphus, if you want to get that rock up the hill, you have to push it downhill as fast as you can".
 
the paper said:
No specific treatments have been proven effective.
Click to expand...
I think the trick might be in the word 'specific'. As in:

There is no treatment that is specific to ME/CFS. But, (in case you hadn't heard), CBT is even used to help people with cancer and MS (and we don't hear them whining about it).


That said, it's a bit hard to tell if this disease description is actually meant well. It might actually be non-BPS, and thinking that CBT can help people adapt to their illness (e.g. by resisting the temptation to push through, by managing activity levels by learning how to say 'no' to people and delegating, by having an approach to deal with the stigma).
 
Hutan said:
It might actually be non-BPS, and thinking that CBT can help people adapt to their illness (e.g. by resisting the temptation to push through, by managing activity levels by learning how to say 'no' to people and delegating, by having an approach to deal with the stigma).
Click to expand...

Thing is, it's talking about gradually increasing day to day functionality. I tend to suspect people who think this way of not even having bothered to Google ME/CFS before they started opining about it.

I might be wrong about the author, of course—but if their intentions were good, surely their abstract would be challenging the ridiculous notion that CBT is the mainstay of treatment. As it is, they're doing a good impression of someone who accepts it.
 
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Hutan said:
I think the trick might be in the word 'specific'. As in:

There is no treatment that is specific to ME/CFS. But, (in case you hadn't heard), CBT is even used to help people with cancer and MS (and we don't hear them whining about it).


That said, it's a bit hard to tell if this disease description is actually meant well. It might actually be non-BPS, and thinking that CBT can help people adapt to their illness (e.g. by resisting the temptation to push through, by managing activity levels by learning how to say 'no' to people and delegating, by having an approach to deal with the stigma).
Click to expand...
There is obviously something about the culture that ‘stopping deterioration’ can’t be ‘the promise’

However sensible the offer re ‘reduce to preserve health’ and however much we are going feel more hellish if someone stands in our way and stops us from staying in our limits directly or indirectly

we can’t promise ‘better’ easily. And shouldn’t have to

because this should be the default : common sense

and it shouldn’t need CBT for us

but the same people who put of the misinformation being made to stop and all of that list not cI ordinating but being made to get up to speed with what the condition is

in a tyranny where people are being forced over threshold and others are being callous under some false delusion it’s ok

it’s not ‘treating OUR mind’ that’s the issue OR solution

do we insist workplaces put minorities and those with ASD spectrum on ‘how to deal with racism [but using a term that makes that polite and the black people's fault] coping courses’ and ‘get used to if and smile as you cope better whilst we ignore your ASD and do things to you that antagonise it and undermine your access to basic rights courses’ and call those ‘co ordinating to solve the problem’ ?
 
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Kitty said:
but if their intentions were good, surely their abstract would be challenging the ridiculous notion that CBT is the mainstay of treatment.
Click to expand...
Of course, 'good intentions' and 'meant well' when combined with 'low effort made to actually understand the situation' result in stuff that isn't helpful. Still, there is the 'It is not a psychological problem as it is often thought to be'. Could be worse.

To me, it looked like something AI might write.
 
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