An audit of 12 cases of long COVID following the lightning process intervention examining benefits and harms

ABSTRACT

To audit the outcomes of patients with long COVID after the lightning process intervention. Retrospective cross-sectional audit. Patients with long COVID were interviewed through telephone regarding their experience and response to the lightning process. Physical, emotional, and overall quality of life; perceived harms of the intervention. None of the 12 participants reported harm from the intervention. 11/12 participants reported being 85% back to normal or more; 8/12 described achieving 85% or greater satisfaction with their emotional, physical, and overall quality of life. 10/12 of the participants reported having heard negative comments about the lightning process but had nonetheless gone ahead with the treatment. This study suggests that the lightning process is a promising and safe intervention for symptoms of long COVID. Primary care clinicians can refer patients for treatment with a high chance of benefit without fear of harm. Randomized, controlled trials are indicated.

Introduction

Long COVID is characterized by a variety of debilitating symptoms, including breathlessness, fatigue, pain, reduced physical capacity, impaired concentration, and compromised emotional well-being. The term is still somewhat controversial and has been proposed to refer to a post-COVID syndrome to distinguish it from the acute illness.[1] For example, the WHO defines post–COVID-19 (PCC) as “the continuation or development of new symptoms three months after the initial SARS-CoV-2 infection, with these symptoms lasting at least 2 months with no other explanation”.[1] We have chosen to use the term-long COVID, according to our participants’ understanding of their symptoms.

Based on the known extensive overlap of long COVID symptoms with those of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME),[2] we were interested in the lightning process (LP), a neurophysiological training programme based on self-coaching which incorporates concepts from Positive Psychology, Osteopathy, and Neuro-Linguistic Programming (NLP). It has a developing evidence base for efficacy, particularly for CFS/ME.[3] There have been anecdotal reports of benefits from the LP for long COVID from the only full-time practitioner in New Zealand and from the intervention’s developer in the United Kingdom. The NICE guidelines in the UK questioned the safety of the LP[4] despite a high-quality RCT from the Bristol Clinical Trial Unit showing benefit in adolescents with chronic fatigue.[5] The Bristol study reported no harm from the intervention, yet NICE controversially downgraded its evidence rating due to the report stating no harm. Instead, they quoted a qualitative study of 9 adolescents and 3 parents.[6] The results from the qualitative study were very optimistic about the LP other than two complaints about therapist approaches. CFS experts have challenged the NICE guidelines.[7]

We aimed to conduct an independent, university-based audit on the first long COVID patients treated by the only full-time LP practitioner in New Zealand, considering both reported benefits and harms.

Methods

As a retrospective, cross-sectional audit, the data reported here are derived from telephone interviews using a questionnaire specifically developed for this study. Participants were eligible if they had undergone the LP for long COVID symptoms after an acute COVID infection (defined by positive RAT or PCR) and had persisting symptoms thought to reflect long COVID, irrespective of whether a confirmatory health professional diagnosis had been sought. To ascertain possible harms, we asked: “Did you experience any harm while doing the LP?

The LP practitioner agreed to participate in an independent audit of patients completing treatment and obtained permission to provide the study team with names, email addresses and mobile phone numbers. Our interviewer followed up with participants who were not initially contactable to avoid responder bias. The sample size was determined by the number of participants the interviewer could do during her student vacation. Analytical statistics were performed using a within-subjects paired t-test in Excel. Ethics approval is not required in New Zealand for audits of clinical practice. The study has been presented according to the Strobe statement for observational studies.[8]

Results

Of 20 patients completing the LP, 12 (60%) were contactable; all agreed to be interviewed and the time elapsed since completing the LP was a median of 8.5 months with a range of 2 to 12 months. The average age was 49.5 years, and all were of European ethnicity and all but one was female [Table 1]. Five were self-diagnosed; all had fatigue; 11/12 had tried pacing, 8/12 graded exercise [Table 2], 10/12 (80%) reported receiving discouraging and/or critical comments about the LP before doing it. No harm was reported, and all patients found the LP intervention helpful [Table 3].

Table 1.

Patient demographics (n=12)

Demographics	Outcomes
Age median	49.5 years
Age range	15 to 61 years
Age mean±sd	42.5±15.4
Gender	11/12 female (92%)
Marital status	Five married One de facto Six single
Ethnicity	NZ European 12/12 (100%)

Table 2.

Baseline characteristics

Clinical issues	Outcomes
Type of COVID test	10 (83%) rapid antigen test (RAT) 1 PCR
Who diagnosed	6 by GP (50%) 5 by self (42%) 1 by hospital specialist (8.3%)
Symptoms	12 fatigue (100%) 9 impaired attention “brain fog” (75%) 8 headache (66%) 4 breathing issues (33%) 11 other symptoms
Number of COVID vaccinations at time of interview	1 person: no vaccination 4 people: two vaccinations 4 people: three vaccinations 1 person: four vaccinations 1 person: five vaccinations
Prior treatment experience	11 had tried pacing 8 had tried graded exercise 1 had tried CBT Most had tried vitamins or supplements
Duration of long COVID symptoms before starting the lightning process	Median 9.5 months (range 1.5-16.5) Mean 9.5 months (sd 1.2)
Time since completing the lightning process	Median 8.5 months (range 2-12) Mean 7.9 months (sd 1.1)

Table 3.

Experience during and since the Lightning Process

Experiences	Outcomes
Things that were helpful	All participants found it helpful
Things that were harmful	No reports in 12/12 participants
Rating of LP (wonderful=100 terrible=0)	Mean 93.3 (sd 2.3) Median 96.5 (range 75-100) 9 participants ≥90
Negative comments from others experience of the LP)	10 participants (83.3%)
Hours of work/study at worst of COVID	Mean 5.8 hours (sd 3.5 ) Median 0 hours Range 0-40 (7 participants reported 0 hours per week)
Hours per week at the time of the interview	Mean 32.3 (sd 1.0) Median 30 (range 16-50)
Hours difference between the worst time and the interview	26.5 hours P<0.000001 df=11
Weeks of regular activities missed before LP	26.5 weeks 95% CI±10.6 weeks
Hours of exercise per week during the worst period Weeks of regular activities missed	One participant did one hour; 11 did zero. Mean 26.5 weeks (sd 4.8) Median 27 weeks Range 2-56
Answer to “Are you back to normal?” (“If 100% is back to normal, where are you now?”)	Five yes fully, seven no (see below) Mean 93.4 (sd 1.8) Median 85 (range 80-100) 11/12≥85%

The following are from Table 3. Seven of the participants were disabled to the extent that they were unable to do any work or study, i.e. zero hours per week. The capacity for work/study improved markedly from the worst of long COVID (mean 5.8 hours per week) to the time of interview (mean 32.3 hours, mean difference 26.5 hours, P < 0.001). On the “Are you back-to-normal” question, five said yes and seven said not entirely; 11/12 reported being back to 85% of normal. The time elapsed since completing the LP was a median of 8.5 months (range 2–12 months). All but one participant (11/12, 92%) reported being at 85% or more in terms of their emotional, physical, and overall quality of life. Table 4 reports the Emotional, Physical and Overall quality of life at the worst of the Long Covid illness and how the participants are now after the lightning process. 8/12 participants were more than 85% improved after the Lightning Process.

Table 4.

Emotional, physical, and overall QoL (100=perfect, 0=worst imaginable)

Quality of life issues	Outcomes
Overall quality of life at the worst point	Median 12.5 (range 0-50)
Emotional wellbeing at its worst point	Median 20 (range 0-70; 8≤30)
Overall physical health at its worst point	Median 20 (range 3-50)
The overall quality of life now	Median 85 (range 65-95; 8/12≥85%)
Emotional well-being now	Median 85 (range 65-95; 8/12≥85%)
Overall physical health now	Median 85 (range 60-95; 8/12≥85%)

Discussion

The main finding of this study was that all 12 participants with symptoms of long COVID had been severely disabled and improved considerably after undergoing LP, with 11/12 participants reporting having returned to at least 85% of normal. The recovery of functional activity (26.5 hours/week gain) is striking. The loss of income to individuals is a significant issue, and any delay in obtaining effective treatment is costly. All participants reported being pleased that they had performed the LP. In answer to the question “What advice would you give someone with long COVID?” One participant said, To do the lightning process and not to be scared of it. To know the symptoms were not in your head, but the solution was not in your body.” of the 10/12 patients said they had previously heard negative things about the LP, such as “it is witchcraft”, “it does not work”,” “it is a waste of money,” and “it is dangerous.” This emphasizes the need to reshape conversations about medically unexplained symptoms and new evidence-based approaches.[9]

Other literature on interventions

Compared with the current standard care, physical and respiratory training interventions have improved functional exercise capacity, dyspnea, and quality of life. For example, an intervention study found benefits in both physical and psychological outcomes.[10] Taking another approach, a study of cognitive–behavioral therapy (CBT) for long COVID found benefits in reducing fatigue among patients who were mainly nonhospitalized and self-referred[11]; the positive effect was sustained at the 6-month follow-up. The intervention was not aimed at depressive symptoms as patients with depression or other significant mental health issues were excluded. The cognitive–behavioral model of fatigue assumes that a disease (in this case, COVID-19) triggers fatigue, while cognitive–behavioral variables can perpetuate it.[12] Seven perpetuating factors were identified: 1) disrupted sleep–wake pattern, 2) unhelpful beliefs about fatigue, 3) low or unevenly distributed activity level, 4) perceived low social support, 5) problems with psychological processing of COVID-19, 6) fear and worries regarding COVID, and 7) poor coping with pain.

Limitations

Our small sample size reflects the limited number to date using the LP for a long COVID. Our interviewer knew nothing about the conditions or persistent fatigue before starting. Half of the patients were not diagnosed by a health professional. Given that there were no known treatments for long COVID in the early days, this is not surprising. The participants paid $NZ1595 (Euro 909) for the LP course, which took 3 half days to complete. This cost makes access difficult for some people, but it can be a small price to pay versus losing months or years from work.

Interpretation

Long COVID, such as CFS, appears to overlap in several respects with functional neurological disorders. Such functional disorders are thought to involve symptom experiences that persist because of expectancy and other facets of brain processing. There are two schools of thought around this, as it is seen as an error in the brain that predicts the natural history of the symptom. One is the Bayesian Predictive model for perception[13] and Embodied Predictive Interoceptive Condition.[14] This explains the effectiveness of CBT.

The NICE concern about harm was based on a qualitative study (of nine patients and three parents) where most participants found considerable benefit, and two participants complained about the attitude of the staff administering the LP.[6] Our experience with such complaints is that there can be confusion regarding the viewpoint of an occasional therapist with limited interpersonal skills with the LP intervention. Our study also of twelve participants found no harms. In the Bristol trial, no harm was reported; the participants in our audit also reported no harm. Long COVID symptoms are prevalent, disabling, and costly, and there is a need to develop evidence-based treatment options. It is impossible to generalize our study findings to a broader group of patients because of the small sample size and restricted demographic variation. Nonetheless, it is encouraging that many patients can get so quickly.

Conclusion

All participants experienced debilitating fatigue. All participants made significant improvements; some had cures after performing the LP and did not experience any harm and was congruent with the Oslo Consortium Statement.[2] This is the first study to report outcomes for patients with long covid with the lightning process. Primary care clinicians can be assured that this is likely to be a safe and effective intervention. Randomized trials are indicated.

Conflicts of interest

There are no conflicts of interest.

Funding Statement

This study was funded by the University of Auckland Research Fund for Professor Bruce Arroll.