Position statement on Alternative Medicine and Therapy Programmes including The Lightning Process or The Switch

Introduction

M.E. Awareness NZ advocates for affordable, effective and evidence-based treatments to be researched and made available to people with ME/CFS.

We are aware that many people with ME/CFS try different types of alternative medicine and therapies to alleviate their symptoms, ranging from dietary supplements to programmes promising to rewire the brain.

For the most part, we do not take a position on individual alternative medicine and therapies. (If you are considering them, please refer to our general advice below).

However, M.E Awareness NZ is concerned about certain expensive but unproven programmes being marketed to Health Care Professionals, who in turn recommend them to people, which gives these programmes an undeserved air of legitimacy. 

Doctors and people with ME/CFS need to be aware that these programmes are specifically advised against in the recently updated UK NICE clinical guideline for ME/CFS (www.nice.org.uk/guidance/ng206).

M.E. Awareness NZ does not recommend The Lightning Process or related programmes for the treatment of ME/CFS or Post-Covid Syndromes, for two reasons:

• One, there is no reliable scientific evidence for these programmes.

• Two, there are reports of people with ME/CFS worsening significantly after participating in these programmes.

In Aotearoa/New Zealand these programmes are promoted to the General Public and Health Care Professionals under names such as The Lightning Process®️, Phil Parker Lightning Process®️, Monarch Life, Make the Shift, Neurospark, Light and Kind and The Switch®️(Empower Therapies).

Marketing of these programmes relies heavily on testimonials to support claims of major improvements and cures but there is no reliable scientific evidence to support this.

A recent rigorous review of the scientific evidence by the experts at the National Institute of Clinical Excellence (NICE) in the UK resulted in the formal recommendation that the Lightning Process and related therapies should not be offered to people with ME/CFS. NICE also noted that there are numerous reports of people deteriorating after undertaking the Lightning Process.

People with ME/CFS and some people with Post-Covid Syndromes experience post-exertional malaise (PEM) when they exceed their individual energy envelope. PEM is a significant, disproportionate worsening of symptoms after minimal exertion of any kind. (Refer to m.e.awareness.nz/an-explanation-of-pem-for-pwme) 

The Lightning Process and related therapies encourage participants to increase their activity beyond their energy envelope, leading to PEM, and in some cases, serious physical deterioration. 

Psychological distress is an additional risk because the programmes strongly imply that if participants don't improve it is their own fault for not trying hard enough. Finally, the programmes are expensive and may lead to desperate people overextending themselves financially.

For the above reasons, M.E. Awareness NZ does not recommend The Lightning Process or related programmes for the treatment of ME/CFS or Post-Covid Syndromes.

M.E. Awareness NZ takes a neutral stance on alternative therapies (with the exception of the programmes discussed above) but advises people with ME/CFS to consider the following points in order to make informed decisions.

• As yet, there is no solid scientific evidence for the effectiveness of any supplement, medicine or alternative therapy for ME/CFS. Many have not been studied at all. The few studies that have been done have been too small or too poor in quality to provide reliable evidence.

• When assessing other peoples' anecdotal reports of their experience, consider how relevant their experience is to your own situation:

• Do they appear to have the same illness and symptoms as you?
  High rates of misdiagnosis mean many people with a diagnosis of ME or CFS actually have a different medical illness.
  
  In addition, there are also likely to be sub-groups within the ME/CFS diagnosis who react differently to different treatments. This is reflected in reports from people on the effects of alternative treatments. For many treatments, some people report some benefit for certain symptoms, some report no effect and some report excessive side effects or harm.

• Are they promising a cure?
  This should raise warning flags as there is no known cure for ME/CFS yet. If such a claim is made in a commercial context, i.e. by somebody using testimonials to sell a product, it may also be illegal and they may not be reporting negative outcomes. If you wish you can report it to the Advertising Standards Authority.

• Are they claiming the treatment helped a specific symptom?
  This is a more realistic outcome. For example, strategies to manage stress, anxiety and low mood can be useful as supportive interventions but are not curative.

• Do they mention side effects? Are they upfront about risks?
  Internet searches may quickly provide this information and whether the substance breaches the Medicines Act.

• Do they look genuine or do they seem to be part of a marketing strategy?
  Unfortunately, people with ME/CFS are often targeted by marketing that makes it difficult to distinguish between a product worth trying and a potentially harmful and costly trial.

• People with ME/CFS, especially those bedbound or housebound over winter or who are unable to tolerate the sun, or those who lack a nutritious diet, can develop vitamin and mineral deficiencies. It's important to first confirm certain deficiencies, through proper testing, because taking some supplements can be harmful if not deficient.  This includes common natural products taken in standard doses.
  
  Additionally, many people with ME/CFS report being sensitive to medications, foods and other substances.
  
  We strongly advise people with ME/CFS to consult their doctor to discuss their individual risk profile.

• Unfortunately some health professionals, including those providing alternative therapies, still equate ME/CFS with 'normal' fatigue and may recommend products to address this 'normal' fatigue, such as iron supplements and stimulants which can make matters worse.
  
  Iron is one example of a supplement that should never be taken without a test to confirm deficiency. Both high and low levels of iron in the body can cause fatigue and high iron intake is toxic.
  
  Stimulants also require caution as they may interfere with sleep or lead to people with ME/CFS artificially overexerting themselves, causing PEM and possible relapse.

M.E. Awareness NZ advises people with ME/CFS to proceed with caution and to carefully compare the likelihood and strength of any potential benefit against the risk to their health and their financial situation.

For a curated list of evidence-based information for the management and treatment of ME/CFS refer to m.e.awareness.nz/resources-health-professionals 

Please be aware that all medications, drugs, therapies and devices promoted within New Zealand as having health benefits, must be approved under the Medicines Act and or the Misuse of Drugs Act to ensure they are safe and effective for the stated purpose. Refer www.health.govt.nz/our-work/regulation-health-and-disability-system/medicines-act-1981