Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hi all
I have just heard of a friend of a friend who did this 3-day course and is now fully recovered after 8 yrs of CFS. It is very hard for me to swallow this as it suggests that we have some control over our illness.
Anyway I would love to hear your opinions on it or if you have done it yourself or know anyone who has tried it and how they got on.
http://www.empowertherapies.co.nz/the-lightning-process
Thanks in advance
I have just heard of a friend of a friend who did this 3-day course and is now fully recovered after 8 yrs of CFS. It is very hard for me to swallow this as it suggests that we have some control over our illness.
Anyway I would love to hear your opinions on it or if you have done it yourself or know anyone who has tried it and how they got on.
http://www.empowertherapies.co.nz/the-lightning-process
Thanks in advance
How to put my thoughts about this politely is tough.
I wouldn't touch this approach even if paid to, if it was a case of mind over matter then I would have beat this illness by now, as would many others I believe.
I believe removing stress, positive thinking and remaining active whenever possible are all conducive to some sort of recovery ( by recovery I mean an improvement to a liveable life rather than pre- illness levels) but forcing myself to do activities that my body isn't physically able to do, whilst repeating STOP or whatever mantra you are supposed to say could be detrimental.
I have heard stories that people who have seen no improvement were told they couldn't have been doing the technique correctly or just weren't trying hard enough.
Of course this is only my opinion, others may have something more positive to say about this as a treatment plan.
If you are tempted by this approach please do your research, ask in as many groups/ forums as you can, just as you have done here, don't just go by the statistics given on their website.
Good luck !
It is a f**king insult to people that have a real illness.
They tell you that it is your own bad thinking patterns that is making you ill. They make you counter your ill feelings with 'I feel really good and can do things that any healthy person can'.
It is just positive affirmations which suggests that CFS/ME is a physiological illness. If it does not work for you they then tell you that you are not motivated to get healthy.
You also have to fill out a detailed questionnaire and often people are not accepted. My thoughts on this, is that they want you to have depression and/or anxiety which worsens energy levels. I am sure that some people are diagnosed with CFS/ME but in fact they have depression and in those cases then I would see that it would help. However CBT or counselling would do the same job and a much lesser cost and actually more tailored to individuals.
There scientific theory is that they treat the stress that cause elevated adrenaline but studies suggest that adrenaline is not a main factor in CFS/ME.
This makes me think of 2 things which make me snicker after this. I'll share my funny thoughts.
First is a poem by Shel Silverstein.
The Little Blue Engine
The little blue engine looked up at the hill.
His light was weak, his whistle was shrill.
He was tired and small, and the hill was tall,
And his face blushed red as he softly said,
"I think I can, I think I can, I think I can."
So he started up with a chug and a strain,
And he puffed and pulled with might and main.
And slowly he climbed, a foot at a time,
And his engine coughed as he whispered soft,
"I think I can, I think I can, I think I can."
With a squeak and a creak and a toot and a sigh,
With an extra hope and an extra try,
He would not stop--now he neared the top--
And strong and proud he cried out loud,
"I think I can, I think I can, I think I can!"
He was almost there, when--CRASH! SMASH! BASH!
He slid down and mashed into engine hash
On the rocks below...which goes to show
If the track is tough and the hill is rough,
THINKING you can just ain't enough!
Is that not what happens when we crash and burn? If anyone reads this to someone who tells them to "just push through it", please share!
The second thing to share is from Saturday Night Live. There is a character named Stuart Smalley. He always says this affirmation: "I'm good enough, I'm smart enough, and doggone it! People like me!" You can watch some of the funny videos online.
http://www.bing.com/videos/search?q=i'm+good+enough+i'm+smart+enough+and+doggone+it+people+like+me&qpvt=i%27m+good+enough+i%27m+smart+enough+and+doggone+it+people+like+me&FORM=VDRE
Ruby30: I think that positivity is a good thing, but I don't believe it can heal an illness like CFS, BUT it can help you DEAL with the illness and that is often half the struggle. I have suffered from depression and anxiety in the past- which we can agree are psychological illnesses, I recovered through force of will and the help of Cognitive Behavioural Therapy. I apply the same things I learnt from CBT to my chronic fatigue and it helps my mood and wellbeing BUT it doesn't help the fatigue or the various PHYSICAL symptoms that I have day to day.
I can see that this Lightning thing looks seductive. One of the first things I was told when I was diagnosed was to be careful of those who try to take advantage of your illness and desperation.
However, if you are in a financial situation where it will not be a drain to you, then I don't think it will do any harm! But at the same time I wouldn't pin all your hopes on it!
PS I'm in Australia and there is a Graded Exercise Therapy treatment combined with Cognitive Behavioural Therapy treatment run through one of the Universities. Supposedly it's cutting edge, however it aims simply to gradually improve your tolerance to exercise and activity while helping you modify your lifestyle (I'll tell you more when I've done it, I'm on a waiting list). HOWEVER, it is subsidised by Medicare (ie the government/health department reimburses patients the cost or most of the cost of the therapy). I'm lucky I have Medicare ,but they don't cover the cost of 'nonsense' treatments, only stuff that is tried and tested. Also it's a long program, lasting several months and the patient is expected to 'practise' at home new routines etc. So three days seems just silly! New Zealand has a pretty good health care system and if the government isn't subsidising this program then I'd be suspicious. However placebos have been known to work wonders! Lastly, it is my opinion that people use the term Chronic fatigue Syndrome sometimes too easily. Some people have mild versions, I had a friend of a friend tell me that I needed to rest and cut down on my full time load but not give it up entirely (which is what he did) he was sick for 6 months all up with what from his description was mild fatigue. This doesn't work for me because some days I can't walk or stand and am extremely fatigued after 20 minutes! But he couldn't understand this because he had had CFS. Obviously it's a very individual illness, but that's because every body is unique. Some people catch the flu and are sick for weeks, while others immune systems don't even flinch in flu season but they can't handle Spring hay fever for example. Don't doubt yourself and your illness!!
:) :)
My final conclusion is that it is definitely NOT for me. I have read that most if not all people with CFS have an issue with 'being lazy' and we are constantly doing TOO much. I would think that by telling ourselves that we can climb the hill (or whatever) that that would be more dangerous to our health.
For example in the months before I got really sick, I would wake up and tell myself I would feel better after going to the gym, I would force myself out of bed at 5.30am because it is what I had done every morning for the last 5 years, and go to the gym until one day my body finally said 'ENOUGH'. I had not really known of CFS and did not think that exercise could be bad for me.
Whilst it is known that depression and anxiety can go hand in hand with CFS not everyone who has CFS has these psychological struggles. I know myself that I do not but if I did then I would be looking into CBT or counselling and not a "3-day promise the world" course. It makes me laugh that these people state they can fix so many aliments.
I seriously doubt that those people that it has worked for ever had true CFS/ME. I know from when I tell some people what I have they say 'oh I'm always tired maybe I have CFS". Maybe some of these people have been misdiagnosed or self-diagnosed. I suppose you could ask 'who I am to say what someone else has got' but I am just pretty sceptical that the physical illness that I have had for nearly two years and has stopped me from doing my favourite things like mountain biking, running and working out, plus working a full-time job and studying towards my degree, could be magically fixed with positive thinking. This, in my opinion is an insult to anyone with our illness!!
Just my opinion and do not mean to offend anyone but these sort of crap really makes me mad.
You're got it now! xoxo
Maybe your friend doesn't get what you are going through because your friend was misdiagnosed.
I agree with what most of you are saying here, and feel pretty sad at how the company/group (or whatever they are)
are appearing to treat some of the people with this horrid illness...
Suffice to say, i will NOT be following that route now :-) D.x
Family is usually just trying to be helpful but there is always a con out there trying to make your wallet a little lighter and preying on desperate people. Doesn't matter what has made you ill, if there is no cure then you suddenly become bait for this type of thing.
I even had a doctor pipe in last week with her cure of spinach and orange juice. I was floored at her ignorance although I don't know why, I've heard just about everything after being ill for 15 yrs, I think it was because she was a doctor that it got to me.
Ask the Specialists. I went to a popular Hospital Clinic in my Big City that is studying & seriously researching CFS along with FMS & MCS ( Multiple Chemical Sensitivities) Some of us got all 3 some of us don't. But anyways the Doc there said there is no cure yet! You can just learn how to manage it! "Also, something I didn't know that they found out from their scientific studies of people who really have the FMS & CFS == "If heart rate goes up - indicates overdoing it - fatigued muscles and heart." Therefore you are tired and not pacing yourself well and need a rest/& or nap!