I’ve now been having WEEKLY Perrin technique treaments for nearly 8 months. I’m starting to wonder if I’ve got to my limit as I’ve not improved for a good 2-3 months. Has anyone else experienced a cut off point like this? I’m wondering if at £55 a week it’s really worth carrying on, as it’s not like money isn’t a concern too.
I was first deemed a 5, and figured that this would mean i should progress at a good rate. My practioner says that it “doesn’t feel right” to move on to every fortnight yet. What does that mean?! I’m starting to feel like i’m just being drained of money for no further benefit to myself.
Don’t get me wrong, I have improved in the time i’ve been having the treatment, but i have also in the past got myself to this point on my own. So am just not sure how much more if anything it’ll do for me.

Please can anyone tell me if they’ve had a similar experience. Or of any other experiences with this treatment.
Good health to you all

I did wonder if assisting the body to detox would help? There have been reports of people with CFS being greatly helped with Far Infra-Red Sauna, which I found out about whilst looking up about having my amalgam fillings removed and then (safely) chelating the mercury out of the various organs it’s undoubtedly lodged in over the years.

(Dr Myhill’s website mentions FIR sauna, but just google it and you’ll get the idea.)

I do wonder if it would help the body to get rid of the toxins quicker, causing less stress on the liver etc. For example, it’s vital to chelate mercury and other heavy metals extraordinarily carefully as extra amounts sloshing around the system (after the body releases them from cellular levels) can make an already poorly body very sick indeed. Is there some comparison with what happens with the Perrin technique I wonder?

Sometimes this CFS thing feels like trying to fit the pieces of a jigsaw together with no picture to follow!

I’ve had CFS/ME for about 30 years. I started Vegepa and The Perrin Technique in Jan 2010. i was diagnosed at level 5. Have seen osteo every week for the past three months and take 4, 5 or 6 vegepa capsules daily. Also: I do the daily lymph drainage massages. I drink litres of boiled water  each day to help flush the toxins through and I eat lots of fresh fruit and vegetables. 

I’ve been having a very rough time with the effects of the treatment and that’s one of the reasons i came on to this site. Moral support!! 

Just wanted to thank everyone for their contributions. Estelle’s story is like a light at the end of the tunnel. Feel at a very low ebb today so Estelle’s story was emotional succour. Karen’s reminds everyone about the Half Rule. (During recovery: Whatever you think you can do, do half.)  Karen, how long did your first round of treatment last? Any change yet? Any explanation as to why it should take so long this time?

Here are some books that I’ve found useful: 
Food Combining for health 
Your body’s many cries for water

I think i feel rough because my liver is having a problem coping with the detox. Does anyone know of any good ideas regarding detox support?  (Hot baths??Mud wraps? Anything??) 

Bye for now
Jackie    

I’ve now had my 5th perrin appointment. I’ve noticed that i seem to be having better sleep, did anyone else experience this? But no other changes yet, I’m not worried by this though as i know it’ll take a lot longer before much else changes. I was judged as a level 5, have had ME for 10 years, and experienced it far worse than i currently do. So i’m hoping that this treatment has come at just the right time, when my body seems to be getting some of it’s strength back naturally. Fingers crossed!
I’m just waiting to start taking the VegEPA, but am guessing my osteopath doesn’t think i’m ready for it yet. I’m not looking forward to the cost though! If only it was available on prescription, and the perrin technique was part of the NHS treatment plan rather than CBT and GET. (I can dream can’tI?!)
One day maybe………..

Please please be careful not to do too juch exercise now you are feeling better. I thought I was better for almost 3 years – i was probably living at about 70% of what I used to before I got ill. So started going back to the gym a little, which was fine. Then played a couple of very very light games of squash, which again was ok. Then played a harder game of squash for just 10 minutes and relapsed. 22 months later I’m feling as bad as I can remember ever feeling. If I could turn the clock back and not pick up that squash racket I would. I’d rather be back living at 70% than the 15% I’m at now.
I’ve been seeing Dr Perrin for 11 months now. Not too sure that it’s working for me. Sometimes I think it is, and other times not. All I’ve got to show for it is a few spots on my neck and back! I’m going to carry on until after Xmas though and see what happens. If I don’t have the Perrin treatment there’s nothing else to give me any hope, so maybe it’s worth it for that alone?
Karen

It’s great that you are so much better. I really appreciate that you took the time to write your comment, it gives us courage to continue. When we are feeling bad is hard to even imagine how it is to have more energy and be able to do things.

All the best in your life,

Alexandra

Was just browsing on the internet and came across this site. I have had ME for nearly 5 years and feel that I am now 85-90% better; the road to recovery started with VegEPA about a year and a half ago, taking 8 a day and reducing to 6 and then 4 or 3. I becam stronger and my brain cleared. Then a year a go I did the lightning process; not a cure for me but an extremely useful tool. I then started the Perrin Technique about a year ago with weekly treatments for around 4 months, reducing them to every 2 weeks and now every 3 – 4 weeks. I did feel a bit worse for 3 months but then have come on really well since then. I am now back at work 3 days a week, playing tennis 2 to 3 times a week (something not actually recommended by Perrin practitoners) and seem to be OK on it. I was very sporty before I got ill. I still get one to two days now again when I feel awful but that is nothing in comparison to how it used to be. When i saw Raymond Perrin I was given a score of 5 and a half, so not too bad compared to you, Rachel and Estelle.

I still do the exercises and massage, but not every day, probably 4 times a week. I think when you start to feel better in a sense you want to forget about being ill and consequently do not remember to do things you should! The only symptom I still have which has not really changed much is chest pain – muscle spasms in the respiratory muscles I think. But I can live with that and hopefully they will go eventually.

I really do highly recommend the Perrin Technique and VegEPA. I think I shall be going for treatment for some time to come but if it keeps me well, why not.

If you take the VegEpa once a day probably it will take very long before you can feel any benefits but at least you can check for side effects and then slowly increase the doses.
So far I’ve had 14 treatments with the Perrin Technique. I’m going every week still. From the second treatment I got much worse but I was told that is a normal reaction. It’s difficult to keep being positive but Dr Perrin’s theory makes a lot of sense to me.
I was also given a level 3 condition. I’ve had ME for almost 14 years and that’s a lot of years of toxins accumulated in the central nervous system so I’m still hoping for a good result.
The first two months were really difficult I felt so ill… I could hardly walk a couple of meters! now I’m still very exhausted but not so “ill”. This Technique must work much faster for people who had ME for one or two years but 14 it is a lot of years so I try to be patient and wait…

All the best for you and keep us informed how you are reacting.

Alexandra

Perhaps I will try taking the VegEPA even its only one a day at first.
I have read that it has helped alot of people with ME and any improvement is a bonus.
How are you finding the Perrin technique? do you go every week?
My oesteopath has just given me some more exercises to do at home.

Take Care
Rachel

Just to tell you that since I have ME I’m also very sensitive to medicines or even natural supplements. I always need to take the doses for a baby and even then sometimes I have side effects (and I’m not exaggerating!). I’m taking VegEpa now for 5 months and I didn’t have any side effects only positive reactions. After 3 weeks of taking it I started to have a more restorative sleep so waking up a bit fresher in the morning, I found that a big improvement. I also have less eczema. I started taking VegEpa one month before I started having the Perrin Technique.
From the beginning I took 6 capsules of VegEpa. Maybe you can give it a try and if you are not sure start with a small doses and see how you react and then increase it slowly.

Kind regards,
Alexandra

I got slightly worse at the beginning of the treatment , I just though after five months there would be some improvement

Rachel

Rachel

Rachel

Hi Rachel,

I got worse before i started getting better. It is normal!!!

The reason why you get worse is because of the technique: they get all the toxins moving and this freaks your system out. It does not know how to deal with the toxic overload.

All I can say is just hang in there, get as much rest as possible, and sleep as much as you can as this gives your body time to heal itself. The other thing to do is to drink as much water as possible. I only drink Sainsbury’s Caledonian still water. They have tested this water and found it to be the purest of all bottled water. I don’t ever drink tap water as I think it is full of poisions.

Also make sure you eat healthy food. Loads of fruit + veg. No fatty foods!!!!

I hope this helps.

Please keep in touch and let me know how u are getting on. Just dont give up!! It will be worth all the effort soon.

Estelle

I have had ME for 13 years.
I’m also having the Perrin Technique and from the second treatment I got much worse (I was told that is a normal reaction). Did you have the same reaction or you just feel the same as before starting?

All the best,

I just wanted to ask Rachel if she is doing her Dr Perrin exercises regularly.

Don’t give up on the perrin technique. I have been having treatment since June 2007. I was going weekly and now only go every 3-4 weeks.

I can’t tell you how it has changed my life. I was ready to leave the planet when I found my oesteopath who does the perrin technique. I always have my treatmet on a Saturday so i have sunday to rest and in the early days i was bad till about the Tuesday and then by Wednesday I started to perk up again.

I dont know if you are working at the moment – I was off for 3 months last year and had to go back to work. This is why I had a weekly treatment. Maybe you should give it a try.

As far as the Vegepa goes, keep at it. I take 4 a day. I know it costs a lot but i did a test to see if it really worked. I stopped taking it for 4 months and I had a huge backslide. Felt rubbish, went to the doctor and after discussing what i was doing differently, I decided the only thing was that i had stopped taking vegepa. She said that would make sense as it takes the body about 4 months to deplete itself of nutrients.

Please feel free to send me another message for more information. I can only say I am so glad you have found the perrin technique and vegepa. I wish i could shout about it from the rooftops and help as many people as possible to get their lives back. May your journey to health be a short one and may your spirit keep strong.

All the best

Estelle Powell

ME/CFS has a disability scale – some are only mildly affected. It just may be that you have a milder case than most. If in doubt, you can always ask another health professional for a second opinion.

You can check out our page that lists some of the ME/ Chronic Fatigue Syndrome symptoms here

Sleepydust has a growing community on MySpace which you are more than welcome to join. You’ll find lots of other people who are suffering from ME/CFS and/or Fibroymalgia. Feel free to come along and join us there.

You can find us at MySpace here…

All the best Laura

Great- thanks for keeping us up to date with that.

By the way, you can find older posts in the various categories on the right hand side. The petition post can be found in the activism section here:

http://www.sleepydust.info/category/mecfs-activism/

Direct link:

http://www.sleepydust.info/2007/01/29/petition/

You can find a list of the most recent posts near the top left hand side.

Just wanted to say that the petition stands at 4511 and is now in the top 50.

Paul