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

[WoodYouBeHappy]

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.

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' . 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 ) 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.

[WoodYouBeHappy]

Oh unweaved I am so pleased to hear GET is helping you. You must be one of those star pupils I keep hearing about at my ME/CFS Bucket Fatigue Clinic. May you be able to walk many more metres!

It's great that some people only need a couple of sessions with the physio before they get back on track but this doesn't help those of us who get worse

It doesn't help that PVFS, CF, CFS, ME all get bundled up in the same diagnosis/treatment/ discussion that pp have said. Thanks ginger for being clear on that.

I think sergeant is right too. "Sets of symptoms that can have a number of causes", which is why different 'treatments' work for different people. Having said that, someone who's had (diagnosed) 'ME' for years and years, has just been diagnosed with MS. I'm wondering if it was MS all along, but just without the lesions on the brain to begin with? Without an ME bio-marker (yet) it is difficult to confirm 100%

[WoodYouBeHappy]

Sorry misspelled Sargeant. That's very interesting about your physio's different approach. And fab that you can play the cello with the right build up and approach. I would definitely be interested in more relaxation techniques and build up my abilities. The GET has not worked for me, so I'm being passed over to the (home visiting) Community Fatigue Team. It will be interesting to know whether their strategies are any different. I wonder what they think about the LP?

[ShovingLeopard]

Wood you may want to check out Dan Neuffer's ebook, 'CFS Unravelled', if you haven't yet come across it. His approach encompasses the positives of the LP, but without the need for a miracle weekend cure, where you need to resume normal activity levels immediately (and risk a major crash).

I used it as part of my recovery from ME, but after having addressed nutritional deficiencies, pacing, sorting a sleep disorder, and alongside using acupuncture and hypnotherapy. I am now 90% cured, having been ill for 7 years. My view, fwiw, is that you need to use multiple strategies at once, rather than trying one thing and then another. I had POTS, as well as ME, from which I am now completely symptom-free.

to all those suffering. It's a bastard of an illness.

[stayathomegardener]

Hi, I've had CFS for 15 years.
Recently had my Mitochondrial function tested and this was confirmed.

I did The Lighting Process about 10 years ago and whilst it didn't "cure" me it made the condition far more manageable basically making me aware of how much energy I was draining away stressing about ill health and symptoms and giving me the tools to control that.
I still use the techniques today.

You could liken it to intensive one to one CBT.
You could do it with the book but it would be hard, the lady running the course was very good which I think made a massive difference.

I probably gained about 15% energy which was massive at the time.
I'm now on a paleo diet and super supplements regime, hoping to claw back even more...Never ends does it.

[WoodYouBeHappy]

Queen that's interesting. I've done quite a bit of CBT which was awful and not in a hurry to load up on any more.

I hope my friends feel like you, that a positive thinking course is not really going to help my severe symptoms. Thank you

[SargeantAngua]

I misspelled it when I set up my account and forgot the password so I'm forever stuck with it

The physio noticed that I'm very uptight in how I walk, which increases the more tired I get whereas if I consciously loosen things it delays the light headedness that i get when walking and I can go a little bit further. I'm loving playing my cello again, thanks. It was hard to get back into initially - not pushing to crash point just tiring very very quickly so only playing for a couple of minutes - but now I've got past that I can somehow let my fingers do the playing and it doesn't tax my brain too much.

I think, certainly in my case, there's the capacity to gently get better at certain things, stronger in certain ways if it's done carefully and you're well enough to have the capacity on top of just getting through the day - not making the ME go away or curing it but becoming a slightly stronger ill person. To me that's what GET should be - gentle careful increases listening to your body and working with what you're able to do. E.g. when I was at my worst I worked slowly on being able to sit upright on the sofa long enough to watch a whole hour of telly without the dizziness driving me to lie flat again, stsrting with just a few minutes of vertical every hour. At a later point (before a nasty but I think unrelated relapse) I spent a year working from walking for 3 mins a day up to 8 mins a day.

I'm waffling now but I hope there's some sense in there somewhere. I think I'm saying you can't push yourself to cured but you can nudge yourself to slight improvement if you're really careful and the circumstances are right. That's my goal now, I'm not focussed on cure just gentle nudges that very slowly widen my world and give me a sense of purpose and achievement and keep me going (a low dose of antidepressants helps my sanity too though i must admit!)

[WoodYouBeHappy]

Hi ShovingLeopard thanks for that book tip. No not come across it yet. Looks good, shame there's no paper copy. Will look into it.

So great to hear you are virtually recovered not about the seven years! I am also suspected of having POTS, so your recovery is very reassuring. It just does not seem possible from where I am lying. Although I obviously don't allow myself to have that thought often!

So, time for a re-think. Multiple strategies to plan and another look at my diet. It's been exhausting -and confusing- trying so many different things, I might use that book as a gentle guide for a different approach.

[WoodYouBeHappy]

stayathomegardener. Ooh, where did you get your mitochondrial function tested?! Sounds very new and megabucks?

Mm, this bit of what you said is key I think:

"how much energy I was draining away stressing about ill health and symptoms and giving me the tools to control that"

I can relate to that and can feel it happening at times. So if I adopt the same principles through positive thinking/relaxation/ meditation etc I may be able to reduce this stress on my body myself....

[WoodYouBeHappy]

Gah, I'm not keeping up. I think I'm sliding, so I'll pass this thread to my PA who will keep bumping and replying. I live in a fantasy world

Sargeant your pp makes sense & I shall study it carefully tomorrow. I hope my next team will help me with some of this. Constant vertigo must affect posture/balance too, so that needs looking at.

I think my GET was too fast! If it took you a year to go from 3 mins a day up to 8 mins a day walking then I'm on a racehorse in comparison! I am desperate

[GreenPeppers]

I have ME and I am also a complementary therapist.
I think the idea that 'you can be cure soon' is stupid TBH. It's not my personal experience and not my experience as a practitioner.

However, my personal experince is that one of my big trigger for the illness was a huge stress over a prolonged time. So I can see how the LP can help some people.
My experience is also that there is no one size fits all and that one therapy/thing you are doing isn't going to make a difference on its own.
For me, what is working (atm, I'm in no way recovered yet, but I am better iyswim) is a mix of diet/supplement/acupuncture (acupuncture working much better now than I have modified my diet).
Another big thing has been stopping hoping for a 'cure' and pushing myself to do X and Y and just become more accepting of my limitations...

[GreenPeppers]

YY about the mitochondria test!!
I have seen a nutritionist who has put me on various supplements (which all helped a bit in some ways). We also did the mitochondria test. It's absolutely fascinating but again helps a lot understanding what isn't working well re energy within the cell.
I've also learnt that I am still 'overpacing' even though I was convinced I was doing very well and was very careful not to do too much....
I've also been told NOT to do more yet even though I'm desperate to be able to work more than my one day a week

[furlinedsheepskinjacket]

its rubbish

if there was a cure we would all be doing it and well again

don't waste your money

[NarcsBegone]

It sounds like utter crap! Some of the recent research into ME/CFS is very interesting, there's something about an enzyme that doesn't work or miss fires amongst other things, how on earth would the LP help with that? There was some research at one point that showed physical differences in the brains of ME patients and again I'm not sure how it would work.
People that tell me I should try this or that are at least trying to help and although it can be annoying and often misjudged I am grateful that they acknowledge there's an issue where others just brush it off as being lazy, fat, precious or that I go to bed too late . Those people I just ignore.
I am 7 years in and much better in some ways than I was but still crash and I'm struggling at the moment. Since finding a support group a couple of years ago it's really helped, being able to socialise (rarely) with people that I don't have to pretend with and don't have to even think about what I'm saying has been truly amazing! Understanding, love and support from them really saved me to be honest. I have done GET and PACE and CBT several times and non of it has really helped with the ME, in fact I'd say it makes it worse due to pressure and even having to go to the appointments.
I have a couple of health issues and I spend a lot of my time seeing drs and specialists, changing medications and therapies all of which affect the ME badly what I really need is rest, I think there are so many pressures and truly resting is a rare thing as I find anything mental and physical affect me badly. A couple of months being totally cared for would help no end!

[CFSKate]

NarcsBegone - www.mumsnet.com/Talk/in_the_news/2891877-New-York-Times-Dodgy-British-ME-CFS-research-harming-patients

This mitochondrial function test perhaps?

[stayathomegardener]

Yes Kate that is the test.

Dr Myhill's book is also great, I'm living by that at the moment.

[DJBaggySmalls]

The NHS doesn't offer it so its quackery.
To be offered as an NHS treatment it would have to be tested and reviewed and proven to work.

[GreenPeppers]

Lol at the that if it's not on the NHS it's quackery.

For once, only 20% of treatments on the NHS actually proven to work. Another 10% are actually proven to be detrimental....

But also, some areas are brand new and things just haven't uckle down to the NHS, some stuff is considered too expensive (aka it's not because they are not working thatbthey aren't used, it's because they are considered too expensive and would stop other patients rongetmsome treatment).
Other areas, such as complementary medicines, just do not have the budgets that pharmaceutical companies have to do research. Roth remembering that because something hasn't been tested/there isn't any positive result available, then it means it's not working.

Finally thee are such huge issues with medica, research atm (i.e. Research should be reproductible BUT somehow most of it isn't.... which pints tonthe fact that none of the research done atm is actually reliable).

So yay, something not available on the NHS means nothing really.

[WoodYouBeHappy]

Thank you everyone for your thoughts. I contacted some past MN'ers who had tried the LP, to see whether it had worked. The responses were either that it's fabulous and were back to travelling long distances & dog walking by the end of the week OR that it's a pyramid selling scam which is actually very dangerous for your health

I do tend to throw myself into everything in the hope of a cure and I am beginning to think that the LP would not be the most sensible approach for me. To be told that YOU are responsible for it not working would be a major blow for me. Probably because I had a pretty hard time at the onset of illness from some non-believing family for 'making excuses' for my absences etc.

[WoodYouBeHappy]

Mm. I think I will order that mitochondrial test and book. I'm not really sure what to think of Dr Myhill. I want to believe everything and follow the protocol. I have taken some of her advice on board in the past, which was excellent. I think because so much is still unknown about ME, it feels like we're all stabbing in the dark. I'm reluctant to waste money (more of it) and energy on things that we don't have evidence of.

Eg. The lady I know who gave me a LONG protocol list of how she has managed to bring her ME under control....but was then diagnosed with MS

[WoodYouBeHappy]

rumbling how's your never-ending panic attack coming along . I have never had panic attacks and try to be relaxed about life. However, getting upright and into appointments triggers such awful symptoms of severe vertigo, tachycardia (at times up to 230 bpm) breathlessness and hurting, non-functioning brain, I am beginning to wonder if people think I am just anxious . I am at that point! They can't see these symptoms and have to fight against them to get anywhere!

I'm lucky I haven't been tied to a chair and ducked in the river, or locked up somewhere

[WoodYouBeHappy]

ginger 26 YEARS!!!!! . I am so sorry. What an awfully long time. HOW have you managed to tread water for so long?!! I'm not sure I would have survived.

Narcsbegone Love your name. I think my ME became more severe because of some narcs around me.

Will be back. Off to enjoy some sun -hopefully- in a gentle lying down spot somewhere

Happy Weekend all! And thanks for your input

[Orlantina]

I have a friend who is an LP practitioner. She has a few clients who are more than happy to pay the £600 cost for a few sessions.

She had ME and it seemed to help her. Whether it was the LP or something else, who knows... I saw the change in her.

I also know someone else who had ME and it seemed to get better after pregnancy.

I don't know my friend's success rate. I do know it's very expensive but I can see why some people would spend anything to get better.

[ToniMumsnet]

We will be moving this thread to General Health soon.

[DJBaggySmalls]

It concerns me that the people who use it and get worse are blamed for the treatment not working. Thats not quackery, thats cultish behaviour.
Its also dissonance reducing behaviour. People who paid for the treatment feel like they belong in an exclusive club, and they can bear the thought they may have paid money for snake oil.
Its great that the power of positive thinking helps some people. Maybe they were on their way to recovery anyway.
But if someone selling you a treatment cant give you a clear and concise explanation as to what it is and how it works, keep your money in your wallet.

[NarcsBegone]

I think with all these 'treatments' and 'therapies' there's something useful to be taken away but not generally for 'curing' ME. CBT is helpful in dealing with life in general and the LP seems to have some useful techniques, GET is good for helping people start to build activities but not for someone with ME and some other illnesses and pacing might help when that boom or bust thing is going on but it's actually impossible to live life like it. The uk has started to research into ME/CFS now but only very slowly and is years behind other countries BUT it does give me some hope that one day there will be some proper treatment that actually helps if only a little.
One of the other conditions I have has come on leaps and bounds only in the last 10 years, it's rare and there was no understanding of it, little to no treatment and was pretty much ignored. Now I have tablets, injections and there are a couple of surgical treatments too and most HCP I speak to have at least heard of it... I've had this condition for 30 years , 20 years with no treatment at all, no understanding and was only diagnosed 13 years ago. This gives me hope that one day ME will be in a similar position.