NICE Guideline review: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome, deadline 16th Oct 2019

Do you mean it's not Beyoncé?

 

That's my nickname. I've had it since I was 16. Then when I did drag, it became my drag name (Beyonce Holes). I used to perform (on the side of my writing career) with the queens from Drag SOS on Channel 4.

 

There will be at least one other opportunity when the draft guidelines are posted and people can comment on them. Last time round they seemed to largely ignore the submissions from patient organisations, but made some adjustments based on submissions from CFS/ME services like the one that was formerly based at Barts hospital, which was run by Peter White. I previously collated some of the annoying things they/he suggested:
https://meagenda.wordpress.com/2007...g-the-nice-guidelines-for-cfs-me-tom-kindlon/

 

I have significant concerns re evidence base for children, as much paediatric research , as we know, is of poor quality with a mixed cohort and from a small group of mutually reinforcing researchers.

I know of little biomedical research for this group : tymes trust did fund muscle research at Dundee university, and there may be US info from the likes of Peter Rowe, the recent recovery rates ( challenging the 80% and 2 year yardstick) from Rowe in Australia, but I can't think of others. The rebuttal of Dutch FITNET by Vink at al is a no brainer.

An analysis of the poor quality of paediatric and adolescent offerings is needed. Can S4ME collate thoughts to enable this to be done?
This is a group yor whom no change in the face of mounting FII and ACEs dogma would be untenable.

 

@Tom Kindlon

Thank you for your above write up. The responses to the NICE committee are appalling - I've read your article before, but even a second read of it is shocking. The tone of the responses to NICE is certainly questionable to put it politely.

 

Those comments are worth reading to fully appreciate just how impressively incompetent and ignorant the "experts" involved were (and still are, frankly). It takes a few minutes to read and the selections really emphasize just how much ignorance about nearly every single aspect of the disease went into making the 2007 guidelines. They all qualify as "bad ME quotes", since the thread has been recently revived.

The ignorance on display basically amounts to a geographer not being aware the Americas are in the Western hemisphere, or something to that nature. Truly staggering display of rejecting reality and substituting their own.

My favorite example is Peter White, a self-proclaimed top expert, being completely unaware that digestive issues are common. I'm out of adjectives to properly emphasize. It's not just ignorance, it's aggressive "I KNOW MORE ABOUT YOU THAN YOU WILL EVER DO" ignorance. A dead racoon would do a better job.

 

White and his colleagues really come across as textbook examples of Dunning-Kruger. (ETA: https://en.wikipedia.org/wiki/Dunning–Kruger_effect )

 

The big problem often is that not only are they highly capable of fooling themselves, they are also highly capable of fooling others.

 

There are some people for whom fooling others is a skill acquired very early on, and becomes a way of life.

 

But it clearly excludes commentary without data analysis, for example Geraghty's Types of harm from CBT can't be sent because it doesn't fit their narrow descriptions.

 

Quality of life and pain

• Neurological Alliance survey 2019- over 300 people with ME/CFS included https://www.neural.org.uk/wp-content/uploads/2019/07/Neuro-Patience-Techincal-Report.pdf

Tables from p45 onward show: ME/CFS has lowest quality of life due to the impact of symptoms, worse than spinal cord injury, Motor Neurone Disease, Parkinson's and Dementia ME/CFS patients are the most dissatisfied with their health care, with FND patients also one of the most dissatisfied ME/CFS is the 5th highest in terms of pain or discomfort

What category of evidence from their list do we want that is hard to find anything for?
Please make suggestions from the NICE list and I will see what I can find

 

Care needs & Dietary Interventions

• Patterns of food avoidance in chronic fatigue syndrome; is there a case for dietary recommendations?. Nutricion hospitalaria, 27(2), pp.659-662. https://www.redalyc.org/pdf/3092/309226786046.pdf - provides key evidence that some CFS patients are significantly underweight without any eating disorder and that dietary changes help some

 

It doesn't have to be submitted in the call for evidence for it to be discussed. Committee members can still discuss whatever they want to, so long as it fits the day's agenda.

 

CBT evidence
Null effect:

• Whitehead L, Campion P. Can general practitioners manage Chronic Fatigue Syndrome? A controlled trial. J Chronic Fatigue Syndr 2002;10:55-64. https://www.tandfonline.com/doi/abs/10.1300/J092v10n01_05
• Huibers, M. J. H., Beurskens, A. J. H. M., VanSchayck, C. P., Bazelmans, E., Metsemakers, J. F. M., Knottnerus, J. A., et al. (2004). Efficacy of cognitive-behavioural therapy by general practitioners for unexplained fatigue among employees: Randomized controlled trial. British Journal of Psychiatry, 184, 240−246 https://www.ncbi.nlm.nih.gov/pubmed/14990522 - 44% had CFS
• Cognitive–behavioural therapy v. structured care for medically unexplained symptoms: randomised controlled trial 2008. A. Sumathipala, S. Siribaddana, M. R. N. Abeysingha, P. De Silva, M. Dewey, M. Prince and A. H. Mann https://www.cambridge.org/core/serv...ined_symptoms_randomised_controlled_trial.pdf
• Ridsdale, L., Godfrey, E., Chalder, T., Seed, P., King, M., Wallace, P., et al. (2001). Chronic fatigue in general practice: Is counselling as good as cognitive behavior therapy? A UK randomized trial in primary care. British Journal of General Practice, 51, 19−24.
• FINE trial - Wearden, A.J., Riste, L., Dowrick, C., Chew-Graham, C., Bentall, R.P., Morriss, R.K., Peters, S., Dunn, G., Richardson, G., Lovell, K. and Powell, P., 2006. Fatigue Intervention by Nurses Evaluation–The FINE Trial. A randomised controlled trial of nurse led self-help treatment for patients in primary care with chronic fatigue syndrome: study protocol.[ISRCTN74156610]. Bmc Medicine, 4(1), p.9. https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-4-9 - also states: "The bastards just don't want to get better "

Psychological treatment

• Jason, L.A., Torres-Harding, S., Friedberg, F., Corradi, K., Njoku, M.G., Donalek, J., Reynolds, N., Brown, M., Weitner, B.B., Rademaker, A. and Papernik, M., 2007 Non-pharmacologic interventions for CFS: A randomized trial. Journal of Clinical Psychology in Medical Settings, 14(4), pp.275-296. https://www.researchgate.net/profil...-Interventions-for-CFS-A-Randomized-Trial.pdf

Found 80% don't benefit from CBT, best treatment was COG at 28% with some improvements (eg joint pain). Relaxation and ACT did worse.
Cognitive Therapy Treatment (COG) -This condition, formulated and supervised by Fred Fried- berg, a clinical psychologist, incorporated a broad-based cognitive approach that focused on developing cognitive strategies to better tolerate and reduce stress and symp- toms, and to lessen self-criticism. Cognitive changes were linked, in principle, to achieving a healthy balance between activity, rest, and leisure.​

CBT & GET together

• Jason, L.A., Torres-Harding, S., Brown, M., Sorenson, M., Donalek, J., Corradi, K., Maher, K. and Fletcher, M.A., 2008. Predictors of Change Following Participation in Non-Pharmacologic Interventions for CFS - https://www.jstage.jst.go.jp/article/tmh/36/1/36_2007-55/_pdf

Work disability
Long-term predictors of outcome in fatigued employees on sick leave: a 4-year follow-up study Leone at al 2006. https://repository.ubn.ru.nl/bitstream/handle/2066/50684/50684.pdf?sequence=1 states -

Results. Thirty-three participants (26%) were receiving work disability benefits at the 4-year follow-up. Older age and lower levels of physical functioning predicted work disability. Weaker psychological attributions and lower levels of physical functioning were predictors of fatigue caseness. CFS-like caseness was predicted by female gender and lower levels of physical functioning. Self-reported physical functioning remained a strong and statistically significant determinant of work disability [odds ratio (OR) 0.45, 95% confidence interval (CI) 0.24–0.87] and CFS-like caseness (OR 0.20, 95% CI 0.09–0.43) after controlling for confounders.

The role of illness attributions
Previous studies have shown that illness attri- butions can play an important role in the course of fatigue conditions not meeting the criteria for CFS (Sharpe et al. 1992 ; Clark et al. 1995 ; Chalder et al. 2003 ; Huibers et al. 2004 b). In this study, absence of a tendency towards psychol- ogical attributions was associated with fatigue caseness. However, causal attributions were not related to CFS-like caseness in this sample, in contrast to several previous studies examining the role of illness attributions in diagnosed CFS patients (Wilson et al. 1994 ; Cope et al. 1996 ; Vercoulen et al. 1996; Van der Werf et al. 2002)

 

The issue is how to get that information to them - I haven't seen any individuals share their contact details including patient reps, and the fact we don't know what is going into each meeting's agenda.

 

The agenda is confidential until the minutes are published. But tag us in things here and we will see them (to be fair, I've already clocked everything you've suggested in this thread anyway, but it's better to be safe than sorry).

At least three lay members use this forum. Not to sound ominous, but we are watching!

 

@daftasabrush Three patient reps are on S4ME - myself, @adambeyoncelowe and @saranbonser . We are not hiding our details, nor blocking PMs. So it is not difficult to make contact.

I am reading many threads here closely, even if I don’t always comment.

However we can only share information that is already in the public domain about the meetings, the agenda and so on.

 

Oops Adam got there first. LOL
I must have dawdled with my post, cos I only saw Adam’s one after posting mine!

 

Yours was clearer!