RNZCGP GoodFellow Unit MedCases CPD Sept 2023: Chronic fatigue syndrome/myalgic encephalomyelitis

SNT Gatchaman

SNT Gatchaman

Senior Member (Voting Rights)
Staff member
https://www.goodfellowunit.org/medcases/chronic-fatigue-syndromemyalgic-encephalomyelitis

Chronic fatigue syndrome/myalgic encephalomyelitis
Date Published
Monday, 18 September 2023
Category
Chronic conditions

Miss C is a 17-year-old girl who comes to see you ...

The specific treatments that can help include:
  1. Cognitive Behavioural Therapy (CBT).
  2. Graded exercise
  3. Lightning Process (for children 12 to 18). There is encouraging evidence from a small RCT in children.4 It has also been used successfully in young adults but has not been studied in RCTs in older age groups.
Activity pacing, where participants are not asked to increase activity beyond their current perceived energy envelope, has not been shown to be effective for fatigue reduction in large trials and systematic reviews.1,3 Part of the problem may be that pacing has been very variably defined: in the large PACE trial, 3 which was negative, participants were asked to limit their exercise to 70% of their perceived energy envelope; other trials that suggest there may be benefit have used higher figures and/or included co-interventions.1 With the above caveats about how to define pacing, there is limited trial evidence that pacing may increase physical functioning and reduce depression and anxiety.1

Graded exercise on the other hand, where patients are encouraged to increase their activity beyond current functioning, has been much more clearly shown to be effective for both fatigue and physical functioning,1,3 and CBT also has a solid evidence base.

Post-exercise malaise; This is the most feared symptom of many patients with CFS/ME. There was reduced post-exercise malaise in the CBT and GE groups in the PACE trial.3 The fact that CBT can help does not imply that the condition has a psychological cause.

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This MedCase was written by Professor Bruce Arroll, General Practitioner, with review by Professor Paul Little of Primary Care Research at the University of Southampton UK.

References
  1. The effectiveness of activity pacing interventions for people with chronic fatigue syndrome: a systematic review and meta-analysis. Disabil Rehabil. (2022)
  2. Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis J Neurol Neurosurg Psychiatry. (2023)
  3. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet. (2011)
  4. Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial. Arch Dis Child. (2018)
 
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Miss C is a 17-year-old girl who comes to see you with a two-day history of worsening tiredness, pelvic pain, and difficulty sleeping. She has run out of tramadol, which she uses in addition to paracetamol for pain exacerbations.

Miss C feels extremely tired and tells you she has been bedbound for the past few days since she attended three full days of school in a row.
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You talk to Miss C about low-intensity behavioural treatments and she decides to work with you on guided self-instruction on CBT programmes with some graded exercises.

Given her age, her mother is interested in the Lightning Process4 so she will seek local providers and the cost.

She will also see if any CBT therapists specialise in CFS/ME therapy.
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Resources for clinicians

To the best of our knowledge, no hospital departments exclusively manage ME/CFS. CBT is usually conducted by Clinical Psychologists, graded exercises by physiotherapists, and there are private fully trained Lightning Process therapists.

(NB: The NICE guidelines are quoted as a source of information. For this condition, they have been severely discredited by world experts in the condition.2)

Resources for patients

What support is available for patients with chronic fatigue syndrome?

We suggest buyer beware here. Some New Zealand and overseas patient support groups only recommend Pacing. Where Pacing encourages maintaining activity to 70% of perceived energy level, it is likely to be ineffective based on the largest trial to date.3

If Pacing is supported, higher targets for perceived energy expenditure are needed, but the evidence is not strong. GET or CBT should be first line management since there is good evidence for both.

Some patient groups also recommend Vitamin B12 injections which do not have a strong evidence base.

We acknowledge that some individuals may feel they benefit from such interventions. We recommend caution.

Useful patient resources include:

Myalgic encephalomyelitis (ME) support Healthify

Tiredness and fatigue Healthify
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It's mostly an ad for the Lightning Process.
 
"Siri, what is oppositional defiant disorder?" Except in this case it's one authority figure defying another (NICE / IOM / Science).

Hutan said:
Is there anything we can do, do you think?
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I don't know, it hardly seems worth appealing to the publishing organisation when the author of this tripe is the director of that organisation...

Have to laugh at his comments here —

We were taught how to read a medical journal article, which I wasn’t taught at medical school. When I came through, the senior – man usually, but occasionally a woman – would be right. Their opinion was right and no matter how much you knew you would always have to defer to them. And with evidence-based medicine you learned how to critique papers and you could know more about a topic than the boss, literally. It was very liberating in that sense.
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Bruce - mate - hate to tell you, but you're the senior man who knows nothing, literally.
 
SNT Gatchaman said:
Bruce - mate - hate to tell you, but you're the senior man who knows nothing...
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:D

I reckon it could be worth writing to them - there is a contact form. There's a bit to say -
NICE guidelines:
rating the outcomes of the PACE trial as being low to very low quality evidence;
explicitly warning against the Lightning Process and GET;
the fact that the PACE trial was not a sound study of pacing, as the Adaptive Pacing treatment was not pacing. Pacing is an approach that most people with ME/CFS come to adopt given time, limiting activity so as to avoid post-exertional malaise - most of the participants in the PACE trial would have already been pacing at the baseline.

CDC rejection of GET

The Lightning Process - background of the founder, high cost, MLM approach, Flaws in the Crawley study

The recognition by Cochrane that their 2019 Exercise therapy for CFS is not fit for purpose.

The repudiation of virtually all ME/CFS organisations around the world of graded exercise therapy as a treatment of ME/CFS.

Perhaps linking to the comments on the Cochrane petition (although it gets hard to explain what we are petitioning Cochrane for)


NelliePledge said:
What is the connection between the royal college and this Goodfellow Unit I couldn’t find about us info. All there.seems to be is a logo
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Yes, it would help to find the Board or some organisation the Goodfellow Unit is answerable to.
 
The Goodfellow Unit was set up in 1978 to provide continuing medical education and is part of the School of Population Health, Faculty of Medical and Health Sciences, at the University of Auckland.
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So, the School of Population Health at the University of Auckland might be the target of a letter.
 
I note that Professor Paula Lorgelly is a faculty member of the School of Population Health at the University of Auckland. She was instrumental in setting up Long covid Registry. She seems to have sensible ideas about post-viral conditions. Maybe the School of Population health is the organisation to target.

How on earth did Bruce Arroll get appointed as Director of the Goodfellow Unit?
https://www.brucearroll.com/resources

https://www.nzdoctor.co.nz/article/news/lightning-process-rewiring-brain
Lightning Process coach Jenny Oliver speaking at the Goodfellow Symposium in March 2023

Bruce Arrow replied to Ros Vallings' very tame suggestion that the Lightning Process wasn't an ME/CFS treatment with this, coauthored with the NZ champion of the Lightning Process, Jenny Oliver:

Reply to Dr Ros Vallings
https://www.publish.csiro.au/HC/pdf/HC22105
Bruce ArrollA,*
MBChB, PhD and Jenny OliverB BEd, Dip TCH

We are concerned that this letter seems to be part of an attempt to stop discussion about the Lightning Process. We suggest Dr Vallings and her supporters look at the actual evidence such as the very well-conducted trial by the Bristol Clinical Trials Unit which found a benefit for teenagers with Chronic Fatigue Syndrome (CFS) from the Lightning Process in 2017.1 The cost-effectiveness of the Lightning Process was UK pounds 1474 per QALY (2017 currency). Dr Vallings’ preferred Pacing Therapy is the least cost-effective at UK pounds 127 047 in 2013 UK pounds.2 CBT is UK pound 18 374 and graded exercise 55 235. This would suggest that Pacing is a modestly effective treatment that is expensive.

The NICE guidelines are quoted for the safety/harm of the Lightning Process. The claimed harms come from a qualitative study (not a cohort) where possibly two people claimed they were harmed (there were no harms in the Bristol Study). Clearly, something bizarre happened at the NICE Guideline on CFS as four people resigned, prompting a group of Scandinavian Psychologists to write an article in the Lancet saying that there was ideological capture of the Guideline group.3,4 We agree, having examined the NICE Guideline
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There's more than a whiff of vested interest here.

On that same NZ Doctor site, the RNZCGP is suggesting that having Arroll chair Jenny Oliver's workshops on LP at the GPCME conference ensured balance...
Response from The Royal New Zealand College of General Practitioners

The Royal New Zealand College of General Practitioners are advocates for medical science and clinically-sound education and have a long history of endorsing GPCME events. We gave due consideration to the fact there were Lightning Process (LP) and The Switch sessions at GPCME Rotorua.

  • Professor Bruce Arroll chaired Jenny Oliver’s workshops on LP to ensure balance of information. He did a short presentation on the evidence for benefit and harm, to ensure balance, and specifically mentioned the NICE Guidelines.

  • Dr Vanessa Weenink , deputy chair of the New Zealand Medical Association (NZMA), chaired Mel Abbott’s workshop sessions on fatigue, again to ensure balance and respect for the literature.
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It is concerning how dogmatically convinced Dr Arroll is in his misinformation. I can't understand how anyone can be so one sided unless they have a personal vested interest, or have no clue about ME/CFS and research methodology.

It would be an interesting study finding out how individual clinicians reach such unswerving conviction that they are right when the 'evidence' is so biased.

At what stage in their career do they decide who and what to believe, and can they ever change their view?
 
Heaven help us. The Association for Neuro Linguistic Programming (NLP) featured Bruce Arroll instructing on designing RCTs in 2015.
https://anlp.org/rapport/read/lite/rapport-48-winter-2015

I assume it's the same Bruce Arroll. Because here in 2016 he was presenting at the NZ GP's conference:
http://www.gpcme.co.nz/pdf/2016 North/Fri_room6_1400_Arroll NLP ws 42 & 54 fridasy 1400.pdf
Professor Bruce Arroll
Department of General Practice and Primary Health Care
University of Auckland
14:00 - 14:55 WS #42: Practical Uses of Neurolinguistic Programming in Primary Care
15:05 - 16:00 WS #54: Practical Uses of Neurolinguistic Programming in Primary Care (Repeated)

I think we have the answer as to why the Lightning Process has been all over the NZ GP conferences.
 
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EBM = Extraordinarily Batshit-crazy Medicine.
It would be funny if it weren't for the shocking amount of harm it causes.

Reading this in the same week as all the hundreds of messages on our petition with personal testimonies of lives ruined by GET, and hearing of cases of malnutrition not being treated and death makes it seem criminally negligent.

I'm left feeling helpless with rage, only I don't have any energy for rage, so I'm left with immense sadness.

And a determination to fight on.
 
Dr Bruce Arroll became the Director of the Goodfellow Unit in March 2014 following Dr Peter Huggard. Bruce initially planned to become an engineer after his high school principal advised him against undertaking a medical degree. He enrolled in a Bachelor of Engineering at the University of Auckland but transferred to medical school two years later in 1973.

Bruce became interested in medical education as an undergraduate student and served on the Medical Education Committee. In 1981, he accepted an offer to join the family medicine programme at McMaster University in Canada, whereby ‘evidence-based learning’ was starting to be applied.
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