Why Not Have Your Say?

Is it me, but I can't find the link today ?

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

Paul

Hi Paul

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.

Why is it always talking about ME.talking is not helping sufferers out of this terrible illness , they have been talking for years and promising a solution just round the corner, is it not about time to stop talking and find some answers!!!!!!

I'm sorry I know this is the wrong place for this, but I didn't know where else to go to put this, (this is the first time I have been here).
I feel like a bit of a lightweight when it comes to this horrible disease. I was diagnosed a couple of years ago through PPP. But I don't have it anywhere near as bad as half the people I am hearing about. Does that mean that I have been misdiagnosed?
I don't mean to sound glib or patronising or condescending, but I was trying to just be factual.
Where can I find support? I have found it really helps (for me anyways - ) to talk to people who are going through a similar thing to me. But… to no avail. If anyone can help me, then please get in touch - I can be found on facebook.com

Hi Laura.

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

I would like to share some amazing news with you all…
I was diagnosed with ME/CFS 18 months ago. I have 2 young daughters + am a dental sales specialist. I lost my life for just over a year howeve I have found 2 things that have given me my life back. 1st is an oesteopath who is practicing THE PERRIN TECHNIQUE I have been having weekly treatments manually draining my lymphatic system.2ndly I have been taking VegEPA an amazing supplement rich in omega 3 + 6 + orgainic virgin evening primrose oil + other amazing ingriedients. I dont have loads of money but I have made the sacrifice to try these 2 techniques and am thrilled to say it works…..TRY IT

I have had ME for 8 years and started the Perrin technique 4 months ago.
I don't feel much different at the moment and wondered when you started seeing
some improvement?
Also I have just ordered some vegEPA could you tell me how many you take a day
and did you get any side effects
because i seem to get side effects from any thing i
try to take.

Reply to Rachel Gates from Estelle Powell

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

Hi Estelle - I did not know you where leaving posts here.

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

Hi Rachel,

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,

Hi Estelle
Thankyou for replying
Its five months since starting the Perrin Technique and I still go every week
I have not started the vegEPA because my oesteopath said I am not well enough
to start taking it. Since having ME I react badly to so many things.
Were you given a score out of 10? my score was a 3.
I only drink bottled water and do rest as much as possible, I don't think I eat enough
fruit and veg.
I still feel there is not much improvement but hoepfully see some soon.

Rachel

Hi
Yes i am doing a few of the exercises which are lifting my shoulders up and down
and twisting from side to side holding my arms in different positions. I do these
every day.

Rachel

Hi

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

Rachel

Hi 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

Hi 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

Hi Rachel,

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

Hi

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.

Hi Alison
Its nice to hear you have done so well taking VegEPA and doing the Perrin Technique.
It will be 7 months in a few weeks that I have been having treatment I still have to go
every week. My practitioner still does'nt want me to take the VegEPA.
Did you get any side effects when you took it? I do feel there is some improvement
now but its slow and i just want my life back. If I go out I can only go in a wheelchair
because of the fatigue and I also suffer with bad balance. I can't imagine being able
to get to where you are, but hopefully it will happen. I used to work full time in London and had a good social life. I have a family and now just want to be able to do more with them.
Hopefully this year I will see more of a improvement and I wont give up because I just want to get better.

Hi Alison,

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