Understanding the Controversy

In 2021, the National Institute for Health and Care Excellence (NICE) updated its guidelines for ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). These recommendations caused major debate — especially around the Lightning Process (LP), a brain-mind-body program that has shown benefits in clinical research.

Many patients and experts now believe that NICE got it wrong. Here’s why.


1. Strong Evidence Was Ignored

A major Randomised Controlled Trial (RCT) — the SMILE study — showed that the Lightning Process helped children with ME/CFS improve energy, function, and well-being, with no side effects.

Instead of recognising this strong evidence, NICE relied more on surveys and opinions, which are considered weaker forms of data in medical science.


2. The Lightning Process Was Described Incorrectly

NICE claimed the LP was a psychological treatment, but that’s inaccurate. The LP is a brain-mind-body training programme that teaches people how to reset stress responses and improve physical recovery.

Claims that the LP is “secretive” or tells people to ignore symptoms are also false. The LP’s full protocol is publicly available on its website and in published research papers.


3. Bias May Have Influenced NICE’s Decisions

Researchers have noted that some committee members involved in developing the guideline had known anti-LP views, which may have influenced the final recommendations. Several experts even resigned over concerns about fairness.

Remember: NICE guidelines are advisory, not mandatory. You and your healthcare team can still explore treatments that have peer-reviewed evidence of benefit.


What This Means for You

If you’re living with ME/CFS, it’s important to know that the debate isn’t settled. Independent research shows that the Lightning Process has helped many people — and continues to be studied.

Stay open-minded, read the evidence yourself so you can make informed choices.

References:

Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis (White et al., 2023) DOI: 10.1136/jnnp-2022-330463

BMJ Article (Resignations): Exclusive: four members of NICE’s guideline Committee on ME/CFS stand down (Torjesen I.) DOI: 10.1136/bmj.n1937

The Lancet Commentary New NICE guideline on chronic fatigue syndrome: more ideology than science? (Flottorp et al.) DOI: 10.1016/S0140-6736(22)00183-0

Flawed use of methodology in NICE (Busse) DOI: 10.1136/bmj.m4774

CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric Chronic Fatigue Syndrome (Anderson et Al.) DOI: 10.1080/21641846.2021.1935373

LP RCT – Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial(Crawley et Al.) DOI: 10.1136/archdischild-2017-313375

LP theory paper: Understanding the Lightning Process approach to CFS/ME; a review of the disease process and the approach https://jep.ro/images/pdf/cuprins_reviste/82_art_2__v.pdf

LP Protocol https://lightningprocess.com/protocol-of-the-lightning-process-how-does-it-work/