MikeR
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| posted on 5/1/09 at 10:06 PM |
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Help with M.E.
Help!
Friend of a friend has been diagnosed with M.E. and is struggling a bit (she used to play football so its a bit of a come down).
There was someone one here who's wife had M.E. they went to a NLP seminar and she was huge amounts better. He was so impressed he trained to do
the same.
Can anyone remember who it is / put me in contact with him. I'd like to have a quick chat and maybe put him in contact with my friend.
Cheers.
(right, clock ticking, 22:05 - lets see how long locostbuilders takes to answer this one!)
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zilspeed
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| posted on 5/1/09 at 10:10 PM |
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Jasper
Five minutes, pretty poor..... 
Here's a relevant thread.
[Edited on 5/1/09 by zilspeed]
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bob tatt
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| posted on 5/1/09 at 10:13 PM |
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one of my exs who i still see has developed m e and after going mental for a year and doing everything see could before it developed too far, has now
become a gym junkie she was telling me it really helped her never says no mto anything and lives life to the full. only her experience of course
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Fozzie
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| posted on 5/1/09 at 11:09 PM |
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Yes it is Jasper 
I was diagnosed with it in the 1980's ..... then it was not recognised as quickly or indeed taken seriously. Before the illness I too was very
sporty and fit........
The sooner treatment is started the better the prognosis. There is much more help now 
Good luck, I hope all works out for her...
Fozzie
'Racing is Life!...anything before or after is just waiting'....Steve McQueen
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Benzine
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| posted on 5/1/09 at 11:23 PM |
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My girlfriend has m.e., it's an awful condition. There's no doubt that LP has worked for many people, which is good. I can't find
any good info on controlled trials about it other than:
"Dr. Leslie Findley, an expert in Parkinson's disease and a clinical neuroscientist in Essex, England.
He is conducting a pilot study with CFS patients and the Lightning Process — the first independent study of its kind — and he says
so far, his research indicates it benefits about two-thirds of patients. For the other third, there is no change in their illness, and in a small
number of cases there can be bad relapses."
My girlfriend is part of AYME (assoc. for young people with m.e. - members up to 25 years old) and she knows of many people & friends who have
taken part and it's caused a severe relapse, in some cases worsening their condition. She also knows some who it has helped with which is
great.
Personally I'd try CBT first as it's free through your local GP. I don't understand the price tag with LP (upwards of £550)
I've had lengthy chats with a LP practitioner who is a friend of ours and it's like talking to a wall, short and unspecific explanations
of what it involves or how it works and no explaination for the price tag which, for me, is a big factor. Imagine having a crippling illness then
spending £600 for nothing, that would leave me feeling very depressed.
I don't want to come across as a negative arse, I just like to know about treatments (controlled studies etc) Alternative therapies have either
not undergone extensive controlled trials or have failed them. Between me and my girlfriend we've spoken to a few of our local GPs who
haven't even heard of LP. I will remain skeptical until it has passed thorough trials and has been accredited/recognised as a scientific
treatment
The fact that there is a chance of relapse and a 33.33% failure rate shows me we don't know enough about the condition yet
Statements like this on the lightning process website really creep me out:
"I understand that the lightning process is a training program and not a therapy or treatment. AGREE / DISAGREE"
"Not Ready?
We consider you to be not ready yet to take the training if:
You are cynical about the process."
http://www.lightningprocess.com/are-you-ready.aspx
Real treatments should work whether you "believe" in them or not.
Some links to consider:
"First, Phil tells us that he is a graduate of a school of osteopathy and that he has been trained in cranial osteopathy and applied
kinesiology, three exquisite pseudosciences. He's also studied hypnotherapy and neurolinguistic programming (NLP). None of these fields are
proper preparation for treating chronic fatigue, depression, OCD, or the like. But perhaps Parker is a genius who just stumbled upon a program that
can treat physical and psychological disorders, and can also enhance business and sports performances. What are the odds?
Phil says he's been doing this stuff for ten or fifteen years. He should have at least one scientific study we can look at. He should have a lot
of data to work with. But I suspect that Phil doesn't keep records, except maybe accounting records
Phil says, we should watch his videos and read the testimonials of many success stories. Unfortunately, we know that testimonials are no substitute
for scientific studies. I could treat people with dog spit and find at least 50 subjects who will swear that I cured their cancer or eliminated their
irritable bowel syndrome. What we need to see are well-designed scientific studies that eliminate self-deception and isolate in specific ways what
counts as success due to the training methods."
http://skepdic.com/lightningprocess.html
http://www.healthboards.com/boards/showthread.php?t=455038&page=5
http://www.the
psychologist.org.uk/legacyforum/legacyforum_home.cfm?&ForumID=1&fuseAction=displayMessage&messageID=5896
http://www.skeptics.org.uk/forum/showthread.php?t=252&page=2
http://uk.youtube.com/watch?v=MVvkDX1w8O8
Again, I don't want to come across as a negative nancy, but I like all forms of medicine/treatments to have undergone rigorous controlled
studies. I certainly wouldn't swallow any untested tablets/medicines/immunisations. Until then I'll view it as an expensive treatment that
can potentially take advantage of very vunerable people.
[Edited on 5/1/09 by Benzine]
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dhutch
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| posted on 6/1/09 at 12:02 AM |
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My family has a bit of a histroy of it (mum, and mums mum) , im afraid i know nothing about it as it was all a bit before my time but i'll see
what mum said as i would be instrested anyway. Shes a GP.
Daniel
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MikeR
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| posted on 6/1/09 at 12:05 AM |
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quote:
Originally posted by Benzine
"Not Ready?
We consider you to be not ready yet to take the training if:
You are cynical about the process."
[Edited on 5/1/09 by Benzine]
I know nothing about this, but its my limited understanding that this is a brain condition. Therefore you need to believe it will work for it to work.
If you don't believe - it won't work as the whole point is to change how you think.
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Fozzie
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| posted on 6/1/09 at 12:26 AM |
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Top post Benzine
I hope your girlfriend has some improvement. Did she find the 'Pacing' aspect of CBT helpful?
I know that once I was more mobile, I found it useful, and still do put it into practice in times of need.
I was a member of Action for ME and the ME Association for a few years (I think these have merged now?).
Usually with ME/CFS, there has been a viral infection at some point, that the body just cannot get rid of, and the body can and does go into a
'shut down' type mode to protect itself.
It is a truly debilitating condition. I hope someone finds some answers soon.
ATB Fozzie 
'Racing is Life!...anything before or after is just waiting'....Steve McQueen
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Mr Whippy
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| posted on 6/1/09 at 08:01 AM |
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My mum has had this for about 20 years now. Can't say any of the treatments and god there's been some right wacky ones  have worked at
all. Only time she did feel better was when she went up a high mountain (part of a treatment) and she felt better for about a week, fantastic
I'll build her a huge mile high mast in the back garden...
She use to say she’d been bitten on the toe by a spider! But now recons she picked it up after being quite ill. Despite sometimes being in a lot of
pain (painkillers seem to have no effect even ones I’m not allowed to take cos their so strong) she’s kind of upped her pain threshold so she now does
ballroom dancing!! Even winning prizes. Best thing she says is to just keep being as active as possible as if she got weak from lack of exercise it
would be much much worse. So its best not to be over protective an let them just do the dishes or hoover if they want to, last thing they need is to
sit in a chair all day as that’s where they’ll end up permanently. Unfortunately it’s a long term thing but with perseverance it doesn’t mean giving
up being active.
[Edited on 6/1/09 by Mr Whippy]
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Shadowcaster
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| posted on 6/1/09 at 10:07 AM |
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I was diagnosed with ME about 3 years ago, caused the Doctors say by contracting Chicken Pox. As people say it's a hard illness to live with and
for me it was life changing, in July last year I lost my job dispite being signed of as to ill to work and getting treatment. At the moment I see an
OT and she monitors my CBT and it does help but for me the illness has lead to a very deep depression, as someone who always paid bills on time I just
can't get used to not working and relying on state handouts. Just had my application refused for Mobility and Living allowance. I still manage
to get out in the garage for a while every week but then pay the penality later. Hopefully in the not to distant future someone will find a cure but I
am finding that some people simply do not reconise it as a real illness.
Sorry for the rant
Cheers Rich
The Roadster Blog http://richshaynesroadster.blogspot.com/
It does not matter how slowly you go so long as you do not stop.
Confucius Chinese philosopher & reformer (551 BC - 479 BC)
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Mr Whippy
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| posted on 6/1/09 at 11:15 AM |
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quote:
Originally posted by Shadowcaster
Sorry for the rant
hardy a rant...
At least you can see that it is a common condition and you are not alone. Many people doubted my mum was actually ill for a long time and she had to
work part time as after a couple of weeks she was in agony (she's a teacher) then had to take time off. Since there is no actual signs of any
thing being wrong other than her word for it and some 'fellow' workers though she was making it all up. She hasn't got any benefit
money for her condition and has to still go to work to make sure she still ends up with a pension
[Edited on 6/1/09 by Mr Whippy]
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BenB
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| posted on 6/1/09 at 11:30 AM |
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ME is a very common condition. There are lots of different theories re the causation and lots of different treatments have been tried.
One thing which has been showed, however, is that keeping an open mind as regard to causation and treatment options improves the prognosis and reduces
the symptom score.
A very narrow view re causation and symptoms, meanwhile (and to an extent membership of some of the more "definately post viral" support
groups) can be negative as it limits treatment options....
NLP works for some but equally it has (in certain circles) a bad reputation. Ditto homeopathy...
Equally, it doesn't do any harm (other than £££) to try it!!! Until there's a blinded trial showing that NLP works the NHS won't pay
for it. It will pay for homeopathy (on the basis of a few trials suggesting it works) but there is large concern regarding the way the trials were run
to suggest that the blinding was inadequate and therefore the trial invalid....
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cd.thomson
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| posted on 6/1/09 at 11:32 AM |
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homeopathy does not work any better than psycological treatment. They're the same thing. 
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Mr Whippy
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| posted on 6/1/09 at 12:20 PM |
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quote:
Originally posted by cd.thomson
homeopathy does not work any better than psycological treatment. They're the same thing.
have to agree, homeopathy is as valid as astrology in that it only exists in the minds of those who believe in it
as does rather a lot of other things...
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MikeR
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| posted on 6/1/09 at 01:12 PM |
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but the mind is a powerful thing and shouldn't be discounted!
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BenB
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| posted on 6/1/09 at 09:14 PM |
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Don't get me wrong. I'm not an advocate (if that isn't a strange banana liqueur) of homeopathy. It's just that there's
more evidence for it than NLP....
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