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My son & i are giving the lightning process a go on this week

fds66

fds66

Senior Member
Messages
231
Thanks for the update Coxy. I'm sorry that you and your son are not feeling better. I appreciate your honest feedback on this whole experience.

I just wanted to add that I get problems with not being able to sleep, tired but wired feeling and upset stomach when I've overdone things. It's like if I push past my limits then the accelerator pedal gets stuck in the overdrive postition and it can takes days to calm down. I just get more and more exhausted until I finally crash and can rest again. I sleep better and feel better if I stay within my limits. Of course life demands don't co-operate with my limits so I'm afraid this overdoing things happens rather too often for my liking. I wonder if that might help you and wonder if your symptoms are because you've been overdoing it. Of course we are all different so it might be totally different for you.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
FOI request 16.04.10

On 16 April, I submitted a request for information under FOIA in relation to the Dr Esther Crawley led LP pilot study. I will update when I have received a response which is due for fulfilment within 20 working days of receipt. It may be necessary to submit a further response based on information provided.

A copy of the full request is posted in this thread:

Lightning Process to be Evaluated in Research Study on Children

@ Post #172

Lightning Process to be Evaluated in Research Study on Children
http://www.forums.aboutmecfs.org/sh...tudy-on-Children&p=75528&viewfull=1#post75528

Edit: Please see this Post #181 for update

http://www.forums.aboutmecfs.org/sh...tudy-on-Children&p=81589&viewfull=1#post81589
 
C

coxy

Senior Member
Messages
174
Hi everyone, don't want to open up a can of worms again but some members have notified me privately and are disappointed i decided not to keep going with my updates. So i thought i'd give you a quick update. Firstly i'm still waiting for my XMRV test in the uk, not sure why there's been such a delay can anyone update me if somethings happened i don't know about.
Still doing well after the initial ups and downs!!
I've been managing a few mile bike ride every friday for the past 3 weeks, haven't quite managed the gym aswell as it's taking me all week to get over the ride. I still get very tired but i suppose that's to be expected. I'm extremely short tempered for the last few weeks for some reason, and i still get stiff joints in the mornings, so there are still symptoms but i'm still so much better than i was.
Still not overley confident to recommend the LP to everyone, as i was still hoping to be completely better. All in all though i think it was worth the money to get me to this level.
My son has had no improvment at all and wasn't even doing the training programme, he didn't understand at 12yrs old that he needed to put a bit of work in. Not to be recommended to young children in my opinion.
The jury's still out on the LP in my case, hopefully i'll stay or improve from where i am now.
 
M

MEKoan

Senior Member
Messages
2,630
Thanks, Coxy, for your honest and very interesting update!

I do hope things go well for you!

Please keep us updated as you can!
 
flybro

flybro

Senior Member
Messages
706
Location
pluto
Cheers Coxy,

I'm a little envious, a bike ride, the wind through your hair and on your face, fantastic feeling.

I got a little lost in the moment then.

Just thinking about it felt good.
 
Esther12

Esther12

Senior Member
Messages
13,774
Thanks for the update.

I had been under the impression you'd not gained any improvement, but I'm pleased you are feeling a bit better.

While you've not asked for any adivce, would it not be better to try to exercise little and often, rather than do a long bike ride once a week? I really don't know (especially as I can't ride a bike), but I'd assume it would be better to try to even out your exercise a bit. Good luck with it all.
 
C

coxy

Senior Member
Messages
174
Yes my posts were a bit up and down to say the least, but that is how it was for me after doing the process. I was completely on a high afterwards, got stuck like that for a while, struggled, then felt a lot better, then had periods of doubt, but i wanted to tell it as it was week by week. There was no magic wand waved during those 3 days of training and it's probably been quite confusing to follow. I do feel physically stronger and obviously i wouldn't of been able to ride a bike before. I still am quite confused as to how well i am, and worried about relapse naturally, but hopefully i can stay as well as i am.
Esther12 said:
Thanks for the update.

I had been under the impression you'd not gained any improvement, but I'm pleased you are feeling a bit better.

While you've not asked for any adivce, would it not be better to try to exercise little and often, rather than do a long bike ride once a week? I really don't know (especially as I can't ride a bike), but I'd assume it would be better to try to even out your exercise a bit. Good luck with it all.
Click to expand...
 
clive powney

clive powney

Senior Member
Messages
206
Location
coventry
Coxy,
I too have recently done the lightning process (6 weeks ago) and seem to have had the same experiences as yourself. I had an initial high, struggled for a few days then felt a lot better and had periods of doubt. I am doing a lot more than I was before the process and am definately better than I was. My highs are higher and my lows are nowhere near so low. Again it was no magic wand. But then again the practioner didn't say it was. She explained that it could take many months to get a lot better and I would be on a rollercoaster, but I needed to keep the process going. She herself had had ME for 23 years and took about 9 months after the process to get back to some sort of normality and work. I know she was had had ME as my mother had seen her go downhill in the mid 1980's as she used to run a couple of clothing shops in my area. She sold up due to her illness and ended up housebound.
Maybe we could share some of your experiences. I have been posting my updates on www.foggyfriends.org. It has been for me worth the money as it has done more for me than any anti-virals, antibiotics or supplements.

Regards

Clive
 
Esther12

Esther12

Senior Member
Messages
13,774
coxy said:
Yes my posts were a bit up and down to say the least, but that is how it was for me after doing the process. I was completely on a high afterwards, got stuck like that for a while, struggled, then felt a lot better, then had periods of doubt, but i wanted to tell it as it was week by week. There was no magic wand waved during those 3 days of training and it's probably been quite confusing to follow. I do feel physically stronger and obviously i wouldn't of been able to ride a bike before. I still am quite confused as to how well i am, and worried about relapse naturally, but hopefully i can stay as well as i am.
Click to expand...

It's so difficult to know what's going on with all this.

Ive been getting quite a bit better for the last two months, and have no idea why. If I'd started some supplement, or gone on some training cousrse, I'd be sure it was that.

I think it's most likely that my improvement is related to having more money, and this letting me manage my energy more effectively and so recover from the really bad period I've had for a few years - who knows though, maybe I'm on a roll and will be fully recovered in a years time.
 
hoMEy

hoMEy

Messages
80
Location
The Matrix
LP - another view...

[video=youtube;SFGcKmdOVO0]http://www.youtube.com/watch?v=SFGcKmdOVO0&feature=related[/video]

[video=youtube;bDsc0-dJ640]http://www.youtube.com/watch?v=bDsc0-dJ640&feature=related[/video]

[video=youtube;0UvfWW5IA1I]http://www.youtube.com/watch?v=0UvfWW5IA1I&feature=related[/video]
 
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