Chronic fatigue syndrome: progress and possibilities, 2020, Sandler and Lloyd

Andy said:
Andrew Lloyd changing his tune?
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I don’t read this as changing his tune. It’s still primarily focussed on fatigue, which is what he does (he’s acknowledged PEM, which is something. He almost always refers to “post-exertional fatigue” instead). He follows Central Sensitisation model of ME/CFS and has for quite some time now (and he’s built his treatment model around it), so his discussion of the CNS as the likely primary site of pathology tracks with that. He has an online education program for health professionals, which is based on his clinic’s program, which he’s trying to get picked up, so it makes sense that he would say that education is needed. Plus he’s part of the COFFI group which would love to get funding for a genetic study, so it’s not surprising that he’s also featured genetic evidence. And unsurprising to see how many of his own group’s, or White/Wessely & co’s, articles, they’ve cited.

This article fits with everything he’s been doing in recent years, including still pushing GET/CBT and a rehab model as the best treatment approaches.
 
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Not sure if these have been posted here already, but the MJA has been promoting this review.

They published this article in their Insight Plus newsletter (it’s possible to comment on this article, if anyone is so inclined. Both Brett Lidbury and Paul Fisher left comments a couple of weeks ago):
https://insightplus.mja.com.au/2020/13/emboldening-gps-to-diagnose-chronic-fatigue-syndrome/

And they interviewed Lloyd for one of their podcasts (I’ve not listened to it, because the journal and newsletter article was more than enough). The podcast runs for 30mins.
https://www.mja.com.au/podcast/212/...12-chronic-fatigue-syndrome-prof-andrew-lloyd
 
The puzzling patchwork of ME/CFS
short podcast

"
An Australian review suggests bigger, more rigorous trials are needed to further our understanding of ME/CFS.

Guests:

Professor Andrew Lloyd

Director, Fatigue Clinic, University of New South Wales

Host:

Dr Norman Swan

Producer:

Carl Smith / James Bullen

Duration: 8min 35sec
Broadcast: Mon 1 Jun 2020, 5:52pm"

listen here:
https://www.abc.net.au/radionationa...reatment-of-chronic-fatigue-syndrome/12301374
 
Sly Saint said:
An Australian review suggests bigger, more rigorous trials are needed to further our understanding of ME/CFS.

Guests:

Professor Andrew Lloyd
https://www.abc.net.au/radionationa...reatment-of-chronic-fatigue-syndrome/12301374
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Nothing new here.

Lloyd claiming that CFS/ME can be a positive dianosis and extensive testing should be ruled out. He states the fatigue is not genuine weakness. He says that besides the fever, the symptoms of CFS are like that of an infection that never resolves and that occurring after an infection is the biggest clue. He (and Swan) trot out the controversy of the PACE trial, Swan can't help himself but mention the Cochrane review as evidence !?! of GET and CBT being effective.

Lloyd finishes off by stating that genetics and neuroimaging will lead to understanding the biological basis and developing treatments.

On the latter point, I disagree, we know by now that there are no meaningful SNPs that cause the syndrome, they are minor risk factors at best. Secondly, although neuroimaging can be useful as a biomarker, I cannot see how better neuroimaging on its own is going to lead to meaningful treatments.
 
Simone said:
I don’t read this as changing his tune. It’s still primarily focussed on fatigue, which is what he does (he’s acknowledged PEM, which is something. He almost always refers to “post-exertional fatigue” instead).
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https://www.fatigueclinic.unsw.edu....ing-post-exertional-exacerbation-fatigue-peef

The Lloyd camp seem to be favouring the terminology 'PEEF' these days - post-exertional exacerbation of fatigue. It sounds a lot like 'piffle' (especially in an Australian accent); as in, 'you've just got a bit of PEEF, nothing to worry about if you do what we say'.

Edited to add: The link I gave talks about experiments with modafinal to deal with the fatigue. While people with CFS might find it useful in the short term, I can't see the ongoing use of a central nervous system stimulant ending well. For me, coffee is useful for getting through something that just has to be done, but it has consequences.
 
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Dr Paul Cheney (one of the doctors from incline village who treated patients for years) said that stimulants use for ME simply revved up a broken system. It may help short term but will cause lots of damage underneath.
 
NelliePledge said:
Yeah I kept myself going pushing through on coffee for the early years of my gradual onset but it eventually became like poison to me and seriously aggravated the insomnia.
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I was never a coffee drinker before I was ill, but I've always found it to be counter productive. It counters drowsiness, but it can make it harder to concentrate, so what is the point?
 
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