To treat CFS/ME – Woo Woo or a really effective tool?

At 600€ for the seminar plus accommodation etc is an expensive punt but if it works I’d be more than happy to forgo a few things to get my wife and life back!

Links?

Might as well try it :

https://www.theguardian.com/society/2017/sep/20/controversial-lightning-process-helps-children-with-chronic-fatigue-syndrome-me

An ME/CFS forum have been highly critical of it. There appears to be a push towards telling patients that it’s all in their heads. ‘Medically Unexplained Symptoms’ document:

http://www.healthcareconferencesuk.co.uk/userfiles/1/Simon_Heyland_and_Carolyn_Chew-Graham.pdf

Edit:

http://www.pulsetoday.co.uk/clinical/mental-health/children-with-chronic-fatigue-helped-by-training-course/20035330.article

There appears to be a push towards telling patients that it’s all in their heads.

Yeah, well we all get tired. 🙂

[video]https://www.youtube.com/watch?v=RFSxnXsOeyA[/video]

😐

There appears to be a push towards telling patients that it’s all in their heads.

well there is always the chance that it is for any particular case, so it might be worth trying anyway.

Anything is possible after seeing that placebo documentary where a triallist with bad athritus was given a placebo in place of her normal medication, and then suffered no symptoms for the duration of taking the placebo, until the placebo ran out when the symptoms came back. But she was told it was a placebo and she had been a clinically trained nurse, so knew exactly what it was.

FWIW I’m currently listening to the first part of the audio download that is meant to prepare you for the 12 hour seminar/training process. Apart from the fact that the narrator – Phil Parker (inventor of the process) is incredibly boring, I can’t see how a sufferer of CFS can cope with the deluge of information that is being imparted! I’ll report back when I’ve got to the end of the 2 hour session 😯

I guess it depends. What do you ‘think’ and what do you ‘believe’ is causing your CFS?

ps if you have already signed up to it, give it 100%. No reverting to habitual behaviours.

ps if you have already signed up to it, give it 100%. No reverting to habitual behaviours.

Its not me, its my wife who suffers – I’m having to do the research & try and understand what might work so that we stand a reasonable chance of getting 100% follow through…..

well there is always the chance that it is for any particular case, so it might be worth trying anyway.

Placebo/perceptual issues are all the greater in issues like CFS where theres difficulty in objectively measuring the symptoms. You can’t help but have a significant element of it ‘in your head’, whatever the root cause is.

Subjective things like ‘pain’ can be effected by placebos simply because ‘hope’, ‘confidence’, resolve and so on have a really marked influence in how we perceive things.

I experienced it myself a little – not a placebo effect, but the effect of hope on my perception of symptoms. I had a persistently reoccurring ear/simus infection – over a year of hearing loss, blinding headaches etc – and various different treatments administered in different ways by different consultants. I lost my rag during one consultation because I was being re-prescribed the same treatment for the 3rd time for a condition that kept reoccurring -and I was at my wits end with it ‘whats the point if treating this in the same way if it keeps persisting in the same way you don’t know what it is? – shouldn’t this be the time to try something new?’ . It turned out after a few false starts the issue had in fact been diagnosed months ago – my GP and the consultants all knew what was going on – but they all thought someone else had discussed it with me.

I had to go through a few more cycles of treatment and relapse before it was sorted – but in those later cycles of illness I ‘felt’ better – understanding the pain and discomfort was part of a journey to wellness made everything hurt less. Hopelessness makes pain (or any symptom) more difficult to endure than hopefulness.

We endure pain and fatigue to cycle to the top of a hill but enduring those symptoms would be different if we understood the hill to be endless.

So suffering undiagosable and untreatable fatigue is worse than suffering diagnosed and treatable fatigue – in a very real sense too.

The caution with any new approach like the one in the OP is that the same hope (and its felt by both the people treating a condition and those receiving the treatment) clouds the results. With something like CFS the condition can only be measured by the sufferers ability to describe it and the listeners ability to understand and empathise with the description. So ‘hope’ is doubly disruptive of the results.

Hopelessness makes pain (or any symptom) more difficult to endure than hopefulness.

So suffering undiagosable and untreatable fatigue is worse than suffering diagnosed and treatable fatigue – in a very real sense too.

Nail hit on head! This does however begin to explain the focus on CBT (somewhat discredited now) for treatment which the LP is very similar to – rather than deal with the underlying cause it helps the sufferer deal with the symptoms to some extent. It can’t in my view provide a “cure” for what is probably a complex disruption of the metabolic process that is then further exacerbated by a depression like state bought about by the apparent hopelessness of the situation….we’ve been dealing with this for the thick end of 10 years now and it aint getting any better….

Hopelessness makes pain (or any symptom) more difficult to endure than hopefulness.

So suffering undiagosable and untreatable fatigue is worse than suffering diagnosed and treatable fatigue – in a very real sense too.

what a great post.

I heard a doctor who studied this on R4. She was very sceptical about its efficacy but did a full trial on it and was surprised by the result.

Seemed to have around a 33% success rate and she certainly felt it was another tool in the box for treating children at least.

Had CFS for 3 years

Did everything I could and then landed on Lightning process

It worked and I’ve been fighting since Jan 2016

Happy to have a chat if it would help

Cheers Woody, I’d appreciate a chat at some point. PM me and I’ll send you some numbers.

Thanks. Chaz

It worked 100% for my missus who previously had spent years fighting ME or whatever it might have been.

She did it with a strangely named S African practitioner in Godalming about 8yrs ago. The transformation was immediate – she returned home from the first session and she was already ‘retaking control’.

A friend did it a few months before and went from being bedridden to 3 mile park runs in a matter of weeks.

Jerseychaz

Dropped you a line via email

I went on the course with my partner at the time, and it was relevant to me as well as I was struggling with various issues at the time.

It’s basically a form of neural linguistic programming and I can understand why people think it’s a load of rubbish as it requires you to make an effort to practice it. It’s not just a question of going on the course and that’s it, or taking a pill each day.

However certainly some people on the course were remarkably improved over the 3 days. For me and my ex (who I’m still very much in contact with) we learnt a lot of useful stuff, and whilst I don’t consciously use the LP I do feel I’ve very much benefited from it. I know my ex feels the same way.

Thanks everybody & especially Woody who took the time to call me and have a looong chat! Almost certain that we are going to give this a go in the next few months – I’ll post back here on the outcome.

PSA: There is something on Radio 4 today at 12.15 about CFS

At 600€ for the seminar plus accommodation etc is an expensive punt but if it works I’d be more than happy to forgo a few things to get my wife and life back!

Thread resurrection! Well, we did it, or rather my wife did! Thanks to Woody of this Parish for his time and thoughts. I had a day in Strasbourg and a tour of the Vosges while my wife experienced three intense sessions of The Lightning Process. The outcome has been beyond our wildest hopes, fingers crossed it continues but it very much looks like we’ve found a solution that works for us 🙂