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

Andy

Andy

Retired committee member
Andrew Lloyd changing his tune? @dave30th
Summary
  • Chronic fatigue syndrome (CFS) is a prevalent condition affecting about one in 100 patients attending primary care.
  • There is no diagnostic test, validated biomarker, clear pathophysiology or curative treatment.
  • The core symptom of fatigue affects both physical and cognitive activities, and features a prolonged post‐activity exacerbation triggered by tasks previously achieved without difficulty.
  • Although several different diagnostic criteria are proposed, for clinical purposes only three elements are required: recognition of the typical fatigue; history and physical examination to exclude other medical or psychiatric conditions which may explain the symptoms; and a restricted set of laboratory investigations.
  • Studies of the underlying pathophysiology clearly implicate a range of different acute infections as a trigger for onset in a significant minority of cases, but no other medical or psychological factor has been reproducibly implicated.
  • There have been numerous small case–control studies seeking to identify the biological basis of the condition. These studies have largely resolved what the condition is not: ongoing infection, immunological disorder, endocrine disorder, primary sleep disorder, or simply attributable to a psychiatric condition.
  • A growing body of evidence suggests CFS arises from functional (non‐structural) changes in the brain, but of uncertain character and location. Further functional neuroimaging studies are needed.
  • There is clear evidence for a genetic contribution to CFS from family and twin studies, suggesting that a large scale genome‐wide association study is warranted.
  • Despite the many unknowns in relation to CFS, there is significant room for improvement in provision of the diagnosis and supportive care. This may be facilitated via clinician education.
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Paywall, https://onlinelibrary.wiley.com/doi/abs/10.5694/mja2.50553
Sci hub, https://sci-hub.tw/https://onlinelibrary.wiley.com/doi/abs/10.5694/mja2.50553
 
Andy said:
Andrew Lloyd changing his tune? @dave30th
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I'm going to be cynical and say that perhaps these two points suggest not:

A growing body of evidence suggests CFS arises from functional (non‐structural) changes in the brain, but of uncertain character and location. Further functional neuroimaging studies are needed.
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Despite the many unknowns in relation to CFS, there is significant room for improvement in provision of the diagnosis and supportive care. This may be facilitated via clinician education.
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The first dot point seems to be pertaining to Lloyd's woo-woo hypothesis that CFS is tied up in neuroplasticity and can be reversed by CBT.

The second sounds like Lloyd lobbying for taxpayer funds for his pet project of 'educating' GPs that CFS should be very loosely defined (ie, 'fatigue lasting for more than 6 months') and that such patients should be sent to Lloyd's clinic (where else?) for some woo-woo CBT treatment.
 
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Trying to remain relevant in the realignment? Seems to indicate things are actually moving in the right direction. My guess is the bit about GP education is that the authors want to be involved. It's very effective at spreading woo, after all.

Most of the points in the summary are either wrong, misleading or oddly framed. Lloyd hasn't changed, just trying to adapt his language and avoid the total exclusion that should be the end of his failed involvement.

There is no future in this field for the quacks who stifled it. They are today the biggest obstacle to progress. Just retire and keep your woo to yourself, nobody cares. Barely a footnote in history, on the wrong side of it.
Competing interests: No relevant disclosures.
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:facepalm: Dude. Come oooooon. How are medical journals so bad at this stuff that they actually publish this seriously? What is even the point of pretending here when it's so easily verifiable? Good grief.
 
From the text:

Graded exercise therapy (GET) has more consistent evidence for benefit, with a meta-analysis showing moderate quality evidence for improvement in measures of physical function and fatigue se-ve r it y.67 In clinical practice, GET is preceded by activity pacing, which involves identifying thresholds beyond which the pro-longed symptom exacerbation follows, and then “pacing” activ-ities in order to maximise use of the constrained energy supplies. GET then involves planned, cautious increases in physical activ-ity without causing sustained worsening of symptoms. A recently updated Cochrane review of eight randomised con-trolled studies indicated that in comparison to passive control (such as relaxation or flexibility), GET reduced fatigue at end of treatment with moderate certainty.91,92However, the review indicated that it was not possible to exclude the potential for an exacerbation of symp-toms in patients with severe illness.
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InitialConditions said:
I genuinely don't understand how changes to the brain can be non-structural. Functional doesn't exist. At the most basic level, everything functional can be reduced to the structural. What they mean is they can't see any structural changes.
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It just means one turtle down. That's it. Not satisfied with the BS explanation? There's another BS explanation inside it. That's what explains it. And if you want an explanation for that, well, you can bet your ass there's another BS explanation inside the BS explanation inside the BS explanation.

Somehow medicine is the only scientific discipline where this logical fallacy is acceptable. It happens to be the one where it does the most harm. But, hey, just like COVD cases in countries that try to suppress, if you never look for it you'll never find it and can claim it doesn't exist. Until reality asserts itself, but it moves slowly. Kinda like a turtle. Just a coincidence. Probably.
 
Snowdrop said:
From the text:
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Notable:
improvement in measures
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Questionnaires don't measure, they rate, with neither standard units nor a real-world basis for the numbers used. There is no credible basis for this claim, nothing's being measured. Scientists know that, they understand what a measurement is and that they cannot claim to have measured things that are not measurable when in fact they used subjective ratings. Which makes it all so much frustrating, that they understand they are saying nonsense but nevertheless have to say it to justify themselves.

Interesting first real-world impact of having done the performative update of the Cochrane review where the conclusions are the same even though they should not be. It's still doing harm, still misleads. The straw may be shorter but it's still very graspable.
 
The review does not even mention the most promising physiological finding so far, from the 2 day CPET. I suspect that Lloyd does not understand the physiological significance of the ventilatory threshold and it's use as an objective measure of fatigue.
 
InitialConditions said:
I genuinely don't understand how changes to the brain can be non-structural. Functional doesn't exist. At the most basic level, everything functional can be reduced to the structural. What they mean is they can't see any structural changes.
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Unfortunately, they have done quite a few studies now which show structural changes but they claim these are changes which make a person liable to conversion disorder. They also use them as proof that to all the things they claim as FND from irritable bowel disease to seizures are the same disorder.

In science you do studies to disprove your theory by testing how robust it is. You look at alternative explanations and when you find none your idea is confirmed. These so called researchers work the other way round by continually using findings to bolster their theory and ignoring anything that doesn't suit them.

Snowdrop said:
@rvallee

Hiya. For the benefit of people who are new to this and might come read the thread how would you write the competing interests response? (I don't know about Lloyd that well)
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Lloyd (along with Hickie) was one of the first BPSers who came from nowhere and claimed ME was CFS and they were authorities, ignoring all the expertise and research that had been done before. He is one of the reasons we are so badly treated now and why we are in a worse position than thirty years ago when he became involved. Children were already being held in locked wards in Australia then thanks to him.
 
It’s like homeopathy, they take what is typically a disabling distressing multi symptom disease and dilute it so much it is hardly recognisable to those suffering from it how they describe it. I would never describe the illness as basically fatigue /PEF, affecting 650 000 in the UK with immune/infection ruled out and brain functional issues ruled in.
 
Thought this was an interesting remark:
A systematic review of 14 studies that suggested a poor prognosis for complete recovery (a median of 5% over 1–3 years of followup) is commonly misinterpreted as being representative of the entire population of patients with CFS, which (by definition) includes all those diagnosed with 6 months or more of symptoms.39,40 Importantly, the studies included in the review assessed outcomes in individuals who already had many years of illness (median about 5 years) at the commencement of follow-up.40 By contrast, it is evident from prospective cohort studies of CFS arising as post-infective fatigue,41 and from the subpopulations with illness of less than 2 years duration, that there is a good prognosis for recovery during several years of follow-up
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Michiel Tack said:
Thought this was an interesting remark:
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I wonder how common the misinterpretation is? I'd expect that most people are aware that prognosis is better for those who have not been ill long. At the same time, I don't think that we have a meaningful figure for the 'entire population of patients with CFS' and given that diagnosis often takes a long time, the recovery figure for those who have been ill for years could be the figure most relevant to patients diagnosed with CFS. The 5% figure itself is a bit of a botch from a range of different populations and recovery criteria.

They go on to say:

In clinical practice, it is helpful for the individual patient to characterise the typically slow tra-jectory of improvement in functional status over the preceding months or years (say, 10 percentage points of improvement per annum on a 0–100 scale, with 0 being dead, 30 being largely bedbound, 70 being unable to work or study, and 100 being healthy — analogous to the Karnofsky Performance Scale [43]). This trendline can then be projected forwards to estimate the time to resolution.
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What is that? Where do those figures come from? What supports the assertion that it is helpful for individual patients to be told this?

I'd wanted to avoid reading this paper because it was inevitably going to be unbearable, but I got sucked in by looking at the context to that quote.

Is figure 2 an illustration of how misguided attempts at things like 'supportive care' push patients down a spiral of disability?
 
Michiel Tack said:
Thought this was an interesting remark:
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Post viral fatigue states were once seen as a thing that happened and lasted up to about 2 years. Glandular fever was also known to have a drawn out resolution as was things like giardia. It was never confused with ME.

Once they started pushing CFS and making it all about fatigue rather than an abnormal response to exercise they just lumped them together. So we have the ludicrous situation where they can say that most cases of ME resolve because they call diseases which resolve ME. There is no science there.

My husband had post viral which lasted almost a year after a bad dose of flu. It was before CFS so we never considered that it had any relation to what I had. Basically he could do very little without becoming exhausted. He never had any of the funny symptoms I had with ME.

It is the differences in diseases which tell you what is going on. If you concentrate on the commonest shared symptom you will get nowhere.
 
Mithriel said:
Post viral fatigue states were once seen as a thing that happened and lasted up to about 2 years. Glandular fever was also known to have a drawn out resolution as was things like giardia. It was never confused with ME.
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When I was in Australia, I found people (patients and the main ME doctors) making a very sharp distinction between post-viral fatigue syndrome and what they called chronic fatigue syndrome or more often "chronic fatigue" but that would be called ME in the UK. At least, it was a much sharper distinction than I'd heard anyone make in US or UK.

I don't believe Lloyd has changed. This seems very in line with what he has been saying. The use of "functional" in this context makes that clear. And yes, he has been seeking lots of funding to do e-education of clinicians in providing his version of rehab to patients.
 
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