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Experiences of young people who have undergone the Lightning Process to treat CFS/ME (Reme et al.)

D

Dolphin

Senior Member
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17,567
Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis - a qualitative study.


Br J Health Psychol. 2012 Sep 19. doi: 10.1111/j.2044-8287.2012.02093.x. [Epub ahead of print]

Reme SE, Archer N, Chalder T.

Source
Harvard School of Public Health, Harvard University, Boston, Massachusetts, USA.

Abstract*

OBJECTIVES:

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a serious condition characterized by debilitating but unexplained fatigue.

Treatment alternatives are few, and especially so for young people.

The aetiology of CFS/ME is still unclear and controversial, but rehabilitative interventions seem so far most promising.

The Lightning Process is a 3-day training programme that has recently become available, but no outcome studies have yet been published.

It is a non-medical training programme that combines concepts from Neuro-Linguistic Programming, Life Coaching and Osteopathy.

The aim of this study was to explore the experiences of young people with CFS/ME after they had undergone the Lightning Process.

DESIGN:

Qualitative research study.

METHODS:

Semi-structured interviews were conducted with an opportunistic sample recruited through open advertisements of nine young people, aged 14-26, who had undergone the treatment, and three of their parents.

Inductive thematic analysis was used to evaluate the content of the interviews.

RESULTS:

Mostly positive experiences were reported of the Lightning Process.

Two reported dissatisfaction and no improvement, while seven were satisfied and were much improved.

Particular helpful aspects were the theoretical rationale, practical exercises, and the technique they learned.

Less helpful aspects were the intensity and short duration of the treatment with little follow-up, the secrecy surrounding it, and feelings of being blamed if the treatment did not work.

CONCLUSIONS:

As this is the first report of young people's experiences with the Lightning Process, it will be important to consider the helpful and unhelpful treatment components for future refinement of interventions for CFS/ME.

STATEMENT OF CONTRIBUTION:

What is already known on this subject?

Treatment alternatives for people with CFS/ME are few, especially for young people.

The Lightning Process is a popular treatment programme that has recently become available, but no studies involving the treatment have yet been published.

Feelings of blame or dismissal in CFS/ME patients lead to withdrawal or disengagement from professionals.

What does this study add?

The Lightning Process for young people with CFS/ME encompasses many positive aspects, particularly the practical aspects of the treatment programme.

The more extreme position taken by the Lightning Process in denying the limitations of the illness seem to produce divergent results in various young people; some found it liberating and therapeutic, whilst others did not respond well to it and were left feeling guilty and blamed.

© 2012 The British Psychological Society.

PMID: 22989369 [PubMed - as supplied by publisher]
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*I've given each sentence its own paragraph
 
D

Dolphin

Senior Member
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17,567
Some notes and observations:

They got their patients by placing a note on the AYME website, and thanked AYME for their assistance.

They point out that it may not be a representative sample for a few reasons e.g. people who got well may not go to the site; alternatively people who have greater health problems ("greater ongoing fatigue") might have less energy to volunteer to participate in a research study. Also people who believe they have benefited from a therapy might be more likely to share their positive experiences. They also say that the large entry fee for the course may affect how people rate it. Furthermore people are selected, and select themselves (/exclude themselves) based on "readiness for recovery" criteria which might select those with the best prognosis recovery.

The three mothers who talked all had children who had positive experiences. Also I think they all (IIRC) did the course themselves.

---

Recovery is mentioned quite a bit including by the authors. It is frustrating to me that the authors don't ever question this in any way. Just because somebody says they are recovered doesn't mean they are actually functioning without symptoms just like a healthy person (and also won't relapse). And participants in a LP who have been effectively hypnotised for three days and told to tell people they are doing well are particularly unreliable people in terms of accepting subjective recovery claims.

Similarly "instant healing" is used without question twice.

Also, they don't make much of an effort to say why the treatment might cause problems (e.g. from overdoing it). (All of the authors are behavioural therapists).

---
FWIW
Although marketed as 'training' rather than 'therapy',it appears to share some broad commonalitieswith psychological therapies, particularly cognitive behaviour therapy, such as discussion of maintaining cycles,mind-body links, goal setting, exploration of helpful and unhelpful thought processes and'homework' topractiseoutsideofsessions.
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D

Dolphin

Senior Member
Messages
17,567
Some more extracts:

Table 3. Perspectives on effectiveness

Young people (n = 9)

Treatment components that was helpful

Learning the theory behind LP
Meeting others with chronic fatigue syndrome
Examples of treatment success
Positive and encouraging staff
The group setting
The practical assignments
Practising the process
The one-to-one sessions
Setting of specific goals
Applications to everyday life

Treatment components that was less helpful
Session were too long
Incomplete explanation of the physiology
Not honest about success rate
Inducing guilt if no recovery
Pressure to be positive
Expecting too fast recovery
The secrecy around it
Too dominant therapist
The cost

Parents (n = 3)

Treatment components that was helpful

The theory behind LP
The technique
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More serious are still the reactions and experiences of those not recovering from the treatment. They felt that they were blamed for the lack of treatment success, and consequentially struggled with feelings of guilt and anger. 'I think the worse bit for me was actually after I had done the process and I found it hadn't been working and 1 spoke to (therapist's name) about it, you get a couple of follow-up phone calls, and I said to him that it wasn't working and I didn't know why, he basically told me it was my fault and that if it wasn't working it must be because I wasn't doing it properly' (YP4). They also reported of hearing about similar experiences from other young people who did not find the treatment helpful, and were told that if they were not getting better it was their own fault.
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One case history:
Later, however, her symptoms got worse and she started to think differently about the whole programme. Her experience was that the Lightning Process programme placed the full responsibility for recovery on her; if she didn't do what she was taught at the seminar, it was her own fault that she didn't experience any improvements. This was her first real treatment she had ever undergone for her ME,and her expectations for recovery were very high, When she didn't experience any recovery, and in addition felt blamed for the lack of recovery, she ended up experiencing a double burden in which she felt both angry and hurt about. She felt deceived to believe the programme had a 100% success rate, and she felt it was unfair to blame her for the lack of effect.
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Annoying point in discussion - and it didn't seem to be justified by what they said about YP7
A possible sick role has been suggested as a contributory maintaining factor for CFS in some people as illustrated in the case history of YP7, and indeed secondary gains from CFS have been shown to reduce the likelihood of improvement following psychological therapy (Bentall et al., 2002). We may therefore conclude that a process in which clients choose to put themselves in the role of their own 'coach', providing encouragement to themselves, may counteract the 'sick role' identity. This may be done by moving them towards viewing themselves as being active and positive in how they manage their illness. Indeed, participants commented on the helpfulness of having an active choice in how to respond to distress so as to assist recovery.
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V

Valentijn

Senior Member
Messages
15,786
The more extreme position taken by the Lightning Process in denying the limitations of the illness seem to produce divergent results in various young people; some found it liberating and therapeutic, whilst others did not respond well to it and were left feeling guilty and blamed.
Click to expand...

One thing I do have to give the BPSers some credit for - they're at least less direct in blaming the patients when the voodoo doesn't work.
 
peggy-sue

peggy-sue

Senior Member
Messages
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Location
Scotland
And of course, Emily Ranzen was cured of her "CFS" not just the once, but twice using this remarkable (wallet) lightening process.

Then it was discovered she had Chron's disease all along and had only been pretending to be cured, to please everybody.

Edited to correct my failure to check I'd got the facts right :oops: - it was Coeliac, not Chron's, DOH! thanks, Dolphin, for correcting me.:)
 
D

Dolphin

Senior Member
Messages
17,567
And of course, Emily Ranzen was cured of her "CFS" not just the once, but twice using this remarkable (wallet) lightening process.

Then it was discovered she had Chron's disease all along and had only been pretending to be cured, to please everybody.
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Agree with basic point, but on the specifics, it was Coeliac (Celiac in the US) disease: http://www.meassociation.org.uk/?p=4517 (ETA: also, as purple said, only LP the 2nd time)
 
D

Dolphin

Senior Member
Messages
17,567
Emily Wilcox's case might be a useful to mention if ever writing a formal letter on LP (it shows people who have done LP may not be as well as they are saying they are).
 
peggy-sue

peggy-sue

Senior Member
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Location
Scotland
It did rather stick in my brain that it was LP twice. :confused: But then, my brain fails me a lot!
When I was first ill, I did discover these expensive "miracle cures" on the net - lightening process, mickey mouse therapy, and "reverse" therapy.
I read the sites, the claims and disclaimers, decided they were all hogswash without the slightest basis in science and dismissed them immediately.

When some brave whistleblowers did actually describe the "secrets", processes and methods, I knew I'd been perfectly correct to dismiss them as complete charlatancy.

Charlatancy will work on some folk with mental illnesses. It depends entirely on the placebo effect (recently found to have a strong basis in genetics - very interesting indeed!).
 
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