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THE LIGHTNING PROCESS. Calling all ME/CFS people to help!

(73 Posts)
WoodYouBeHappy Wed 05-Apr-17 12:01:27

I know there are lots of us unfortunate ME/CFS people on here (past and present) and would like your advice/knowledge/information about Phil Parker's The Lightning Process.

Having been severely affected with ME (since a flu virus in 2013) I have researched the full range of 'cures' to get me out of my 'Housebound Hell' of pain, fatigue and vertigo etc. Every so often, a different friend recommends the LP and I find myself on his website again.

In the beginning -with lots of research- I faced my illness with positive, determined CBT/NLP type approaches and attempted to get on with my life. I continued to deteriorate.

After an (NHS prescribed) year of Graded Exercise, I am worse and now medically retired. sad

Can anyone tell me why people pay £650 for LP and risk causing a further relapse? I've read such mixed stories on their success and am curious. It seems to either be a miracle cure (how?) or causes permanent further damage.

How do I explain to my well-meaning friends that 'No, I don't want to sign up to something that will cure me' confused. It shows me as the typical obstructive ME patient who continues to subscribe to the 'false illness belief' (that is still being rolled out in the UK press angry) even though what I really fear is ending up being poorer, bed-bound and tube fed/catheterised.

Any thoughts? Would you risk it? Or did you and with what results? Would be interested to know if anyone was 'cured' and then had a later serious relapse and regrets trying it.

unweavedrainbow Thu 06-Apr-17 17:13:26

I have chronic fatigue caused by Ehlers Danlos syndrome. Broadly speaking I see it like this: if the Lightning Process works the condition was probably psychological in the first place, as the LP works through a mixture of life coaching and learnt emotional self regulation. Most people with ME have a physical illness so the LP is going to do nothing for them.

WoodYouBeHappy Fri 07-Apr-17 09:22:48

Hi unweaved thanks for sharing. Sorry to hear about your EDS. I've researched this in the past and it sounds very challenging flowers

It is very interesting to hear different viewpoints. I have two friends -from different circles- who know six people between them who were all 'cured' by the LP. I'm still trying to get my head around how this short course can 'cure' severe ME, that has mainly been triggered by a viral infection. The same neurological disease that is currently being studied in world-wide labs who think they are closer to finding a biomarker.

It must be two different conditions? And how do you know which one you have? confused I'm not sure I can postpone my curiosity and desperation any longer......

plotmissinginaction Fri 07-Apr-17 13:25:33

I've read mixed reviews also. Those who did not have a good experience seem to have the blame for it not working placed squarely on their shoulders which troubles me a little. I think CFS is very individual so surely a one size fits all approach isn't appropriate?

Dogblep Fri 07-Apr-17 14:05:47

Why do people do it? Because the M.E community is full of utterly desperate people who would desperately love to be better.

I did it for that reason. It made no difference. I have several feiends who have done it and it made no difference to them either. One person on my course seemed to get better but then relapsed very seriously. I think for some people it seems to work because they push themselves and run on adrenalin for ages then crash. I would stay away. It's very kind of people to want to help but the LP is utter quackery. Don't forget that some people have a diagnosis of ME but have fatigue due to some other reason. I can see the LP helping depression related fatigue, for example, because it is a very positive process.

Dogblep Fri 07-Apr-17 14:07:55

And I am so very sorry GET made you worse. It's so dangerous.

Are you aware of #MEAction, the Open Medicine Foundation and Invest in ME? All three do great work as does the ME Association. There's lots of great research happening, too, even if we could do with 10x as much

PurpleDaisies Fri 07-Apr-17 14:11:04

I have chronic fatigue caused by Ehlers Danlos syndrome. Broadly speaking I see it like this: if the Lightning Process works the condition was probably psychological in the first place, as the LP works through a mixture of life coaching and learnt emotional self regulation. Most people with ME have a physical illness so the LP is going to do nothing for them.

I totally agree. Unfortunately lots of people end up with a cfs/me diagnosis when they have a different illness. They're the ones who the lightning process helps because they never had cfs in the first place.

unweavedrainbow Fri 07-Apr-17 14:29:16

That's the thing with GET as well. I'm doing GET right now and it's doing wonders for me. I have improved my walking (bear in mind that I'm a wheelchair user on morphine and often bed bound) to a, for me truly amazing, 30 meters with crutches and braces. However, I don't have ME/CFS and I'm aware that for those conditions it can be incredibly dangerous. Correct diagnosis is so important.

WoodYouBeHappy Fri 07-Apr-17 15:15:54

Thanks all. Interesting. I think what worries me too is what plot highlights:

"Those who did not have a good experience seem to have the blame for it not working placed squarely on their shoulders".

As people with ME have been labelled as Type A personalities, perfectionists but er, lazy & negative too, I can see how soul destroying that would be.

Every single medical (& alternative) practitioner I have met has urged me to believe that I will soon recover. Despite me doing everything they have offered, I haven't. It has been inferred -by some- that I am not open enough, positive enough or ready for that treatment etc.

I think my fear is being told by yet another group of people that I am to blame for my incarceration hmm

WoodYouBeHappy Fri 07-Apr-17 15:24:14

Dogblep was that your experience too? I'm sorry to hear that it didn't work for you. Or your friends. I think I have been running on adrenaline for years, to get me through other life challenges. When I crashed with the flu, I had been very stressed and busy. I seem to be stuck in a trigger-happy adrenaline loop now where if push hard enough (as advised) I can breakthrough and achieve all sorts of things. I now realise after research and resting that my 'achievements' were actually damaging adrenaline highs. I had resulting crashes which lasted for months sad

Now I am resting properly, I don't crash as much or as long. I don't really want to risk it. But I don't want to spend the rest of my life like this either confused

Dogblep Did you or your friends have a bad relapse after LP?

WoodYouBeHappy Fri 07-Apr-17 15:29:02

Oh and thanks Dogblep for the links.

Having been virtually housebound for 4 years my fuzzy brain has been on a lot of websites grin. I get confused as to which ones are helpful and which I have already been on. I guess we are lucky not to feel so isolated with the internet, but I confess my brain does spin with information most days smile

Dogblep Fri 07-Apr-17 15:44:31

My experience was just having no change, other than a much lighter wallet. And I did have two people say to me afterwards, 'oh I'm sorry you aren't doing it right?' hmm. Except with LP it's 'duing' hmm hmm
It feels horrendous feeling like you just haven't done it properly, or wanted it badly enough.

And yes one of my group - the one who seemed to be cured - relapsed extremely badly. She went from being moderately affected, but at the worse end of that, to being severe. Housebound, bedbound, etc. It's very sad. She was riding a bike after it and everything.

I really think there will be some medication options in the next few years. They're having so many breakthroughs. This is kind of the best time to have M.E in some ways because of how close they are to cracking it. I know how hellish it is, though. It has shattered my life. I'm desperate for any kind of treatment. Just have to hang on in there.

SargeantAngua Fri 07-Apr-17 15:46:02

I get the feeling that cfs/ME is more a set of symptoms that can have a number of causes rather than 1 specific illness with 1 cause. Thats why some people get better when their mercury fillings are removed, others by some special diet etc etc. I guess there is a group of people for whom their ME can be cured by the lightening process, but for a lot of us it's not the right solution.

I have had some help recently from a physio who took a fresh view of where I am and we found that if I work on relaxing I can walk a little further (metres not miles!) and play my cello, which I thought was impossible but just needed to build up and approach in the right way. It is possible to get a bit stuck and not know one could do slightly more/different things if approached differently, and to slowly increase ones ability to do a specific thing if approached gently and carefully, but there's a big difference between that and the lightening process, and formal GET.

QueenMortifauxcado Fri 07-Apr-17 16:14:42

I know one person that it helped. I got the impression from being told about it that it was a few days of being taught to think positively, it didn't sound much different from CBT. I'm glad it helped them but I don't believe for a second that it would work on the M.E. I've seen in three other people.

rumblingDMexploitingbstds Fri 07-Apr-17 16:29:14

It was something I looked into for myself but what I read put me off; it appears they are quite selective about who they will take onto a course, and look for people not likely to be critical or questioning. Esther Rantzen's poor daughter who was waved around as the poster child for the LP cure for a long time eventually wrote an article about the bliss of discovering she was coeliac after years of 'faking it until she made it' while feeling utterly lousy.

I fake it on a daily basis to clients while working, who have no idea how bloody hard it was to get out of bed and function. If faking it was all I needed to be well I'd have never been ill in the first place. I know what you mean about 'you didn't want it enough' OP and I'm sorry you've heard that. The relief I felt when I got the diagnosis of hypermobility syndrome and POTS was huge, because it was a provable, replicatable diagnosis medics weren't going to try and blame on me. My GP despite this dx still tried to insist it was nonsense, I just had panic attacks (never previously heard of panic attacks including joint dislocations) which he didn't intend to treat.

Need to chat to the Guiness book of records as I must be having the longest, slowest panic attack in history. hmm

WoodYouBeHappy Fri 07-Apr-17 16:43:06

I asked my ME/CFS clinic about the LP and they thought I might be able to write the book grin. They just said "listen to you"....which I have been doing for the past 2 years. That hasn't got me anywhere either confused

gingerbiscuitandacuppatea Fri 07-Apr-17 17:27:29

I've had ME nearly 26 years and no longer care if others think I 'should' be trying things. I refuse to waste my money on anything I know will make me worse, or just be a load of mumbo jumbo.

LP is one of those potentially damaging ones, as you are encouraged to push through symptoms and think positively. A recipe for disaster with ME, pushing through. I have a friend who did LP and was made severe, hasn't yet recovered from severe in years. She has seizures if she does too much and still struggles to turn off the choice of thinking positive and carrying on.

I think it undermines our confidence to listen to our body.

OP, it sounds like you've done similar before. Just say you researched it but you have done that sort of thing before and been made worse.

It really isn't worth making yourself ill to please others who have little understanding of how severe and horrific ME can be if not treated with care

PopsyDoodle Fri 07-Apr-17 17:40:11

Hi, I did do the LP for chronic fatigue ten years ago and it made a massive difference for me (as it did for two friends, one of whom had severe depression and the other also had CFS). However I do agree with everyone here that it absolutely has its limits. For me - with ten years of hindsight - it worked because I had recovered from the glandular fever/post-viral syndrome that had knocked me out for years, but after being unwell for so long, I didn't have the mental capacity to realise how much better I was or to do things differently. And while it was at the time quite magical - I really did become better straight away - a decade down the line, I am still well but working within limits in order to stay that way. Eg I have a cleaner and some childcare once a week in order to allow me to rest; this keeps me well. I was always slightly fragile when it came to my health and that remains the case now. Ditto for my friends; they both happened to be in similar positions within their own diagnoses I think - I have also heard of others for whom it didn't work.
Happy to answer any questions if I can, would need to dredge the memory banks a bit I think though!
flowers to all of you suffering from chronic fatigue or similar syndromes. I have never forgotten how awful it is.

WoodYouBeHappy Fri 07-Apr-17 17:42:02

When I remember, I will get this moved to General Health, if that's ok, as I'd like future MN'ers to find this information too.

flowers for all of you struggling with chronic illness, supporting those with chronic illness or have lost bits of your life to chronic illness. It's a bastard grin

WoodYouBeHappy Fri 07-Apr-17 17:43:56

Ha ha, cross posted with double flowers for you all with Popsy grin Great minds...

PopsyDoodle Fri 07-Apr-17 17:45:48

grin

gingerbiscuitandacuppatea Fri 07-Apr-17 17:51:09

Chronic fatigue is not the same as chronic fatigue syndrome.

Chronic fatigue is part of many different conditions, including depression. And LP may help this.

Chronic fatigue syndrome has a vast list of symptoms and has to be diagnosed as a separate condition. It involves neurological, immune and metabolic abnormalities

Positive thinking and pushing through physical symptoms caused by metabolic and immune dysfunction will not increase energy, but cause worsening of the condition

PopsyDoodle Fri 07-Apr-17 18:00:18

Ah thank you ginger. Apologies for my misuse of terminology. You have made my point in a far more succinct way than I did...

Reading above that you've had ME for 26 years leaves me almost speechless. I had chronic fatigue for 7 years and that felt like a lifetime. More flowers from me x

PopsyDoodle Fri 07-Apr-17 18:01:50

Ooops - ginger

WoodYouBeHappy Fri 07-Apr-17 18:05:27

Hi PurpleDaisies, I agree with you and unweaved that the 'cured' probably had something else wrong instead. I mean, even I don't know whether I have ME. Apparently 25% of people with a formal diagnosis are actually misdiagnosed. That could be me? Whatever I do have could be treatable with LP?......

Although that being said, I have already worked a fair bit on positive affirmations, meditation, gratitude etc. I know I am not depressed -been there 1 year into being housebound- but I'm not any longer.

I'm not really convinced that paying out LOTS of money to PP, is going to be able to stop my sudden repetitive relapses into flu, raised glands, sore throat, severe pains, high temperature, cold to the core, tachycardia, fatigue, orthostatic intolerance etc hmm

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