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Source: (consider it)
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Thread: maybe cures for untreatable illness.
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Taliesin
Shipmate
# 14017
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Posted
I started a thread on NIS and I'm starting this one hoping for some advice and support on how to make a decision for next week. Has anyone experienced NIS (as opposed to read something about it) or know anyone who has?
I was recommended it by a friend who advocates it wholeheartedly, having been cured of her terrible food intolerances. I have not had a treatment myself, it's far away and always fully booked, so I took one daughter, who felt and feels benefited by it, and then took the other. I planned a treatment for myself when there was room. My other daughter, who is D1, hated the whole experience and has since researched and pronounced it rubbish. I feel the same, really, we both just wanted to cry after the treatment. if I tell this to k, who is my stepdaughter, she won't let me drive her there anyway, but maybe there is something in it... everyone else I know, who has had it, recommends it.
Posts: 2138 | From: South, UK | Registered: Aug 2008
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comet
Snowball in Hell
# 10353
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Posted
what is NIS?
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Evil Dragon Lady, Breaker of Men's Constitutions
"It's hard to be religious when certain people are never incinerated by bolts of lightning.” -Calvin
Posts: 17024 | From: halfway between Seduction and Peril | Registered: Sep 2005
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Taliesin
Shipmate
# 14017
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Posted
Hi Comet, could you please look at the OP on the NIS thread in purg? I'm on a kindle and can't do links.
Posts: 2138 | From: South, UK | Registered: Aug 2008
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Jenn.
Shipmate
# 5239
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Posted
I've never experienced NIS, but I have experienced living with an illness which the drs couldn't really treat. It's draining and horrible, and leaves you and those around you desperate for anything which offers a glimmer of hope. People used to give me articles about people with my condition being cured by all sorts of random treatments. They were trying to be helpful I suppose, but it actually made thing harder as I'd get hopeful, then research and discover it wasn't good.
Posts: 2282 | From: England | Registered: Nov 2003
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Evangeline
Shipmate
# 7002
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Posted
What is D1?
Posts: 2871 | From: "A capsule of modernity afloat in a wild sea" | Registered: May 2004
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Taliesin
Shipmate
# 14017
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Posted
On the ship I have often referred to my daughters as D1 and D2, and some people may be familiar with D1, who has struggled with an eating disorder and anxiety for a few years now. K is one of their older sisters.
Jenn, I hear what you're saying. I am trying hard not to offer weird or false hopes to my family, and have not pursued hypnotherapy, acupuncture, Shiatu, crystals, faith healing of any kind for these reasons. I had a genuine recommendation from a friend who was sending everyone she knew to this practitioner not sure if I can use his name? Near the New Forest.
Everyone was giving good feedback - and my friend was feeling more well than she has for years. In the same way that programmes for addicts are often closed for failure to provide the right kind of statistics, I believed that this was going to be one of those things that would become part of recognised treatment as soon as the right controls had been put into place.
the other thread is here I'm on a proper PC now.
Posts: 2138 | From: South, UK | Registered: Aug 2008
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Adeodatus
Shipmate
# 4992
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Posted
First, Taliesin, my profound sympathy for what you're going through. As has been said, finding yourself sick with a condition orthodox medicine seems unable to treat is a horrible experience.
But I've looked at the NIS website you linked to, and I'm not hopeful. My alarm bells started ringing when I saw here that they recommend it being used "independently" of other treatments - it's a basic principle of complemetary medicine that you never recommend people give up on orthodox medicine, and that complementary therapies are only ever used alongside whatever orthodox treatment is going on. (Hence "complementary" rather than "alternative".)
One thing you can do is not give up on your regular doctors. Be a pest. Be the patient who keeps coming back saying "that didn't work, what are you going to do next?" It's an unfortunate truth in the NHS that the more fuss you make, the more attention you get. It shouldn't be like that, but it is. At some point you might also ask, if you can't cure this, can you at least palliate the symptoms? If you can't cure what I've got, can you at least make having it more tolerable?
[ 23. July 2013, 12:12: Message edited by: Adeodatus ]
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"What is broken, repair with gold."
Posts: 9779 | From: Manchester | Registered: Sep 2003
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Jenn.
Shipmate
# 5239
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Posted
Taliesin - there was no criticism intended in my post. It sounds like things are really tough for you. I'd echo what adeodatus says about bugging the doctors. It might be worth asking for the recommendations - would anything be available privately which isn't available on the NHS? They might have some ideas?
Posts: 2282 | From: England | Registered: Nov 2003
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Evangeline
Shipmate
# 7002
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Posted
Taliesin, it sounded to me as though d1 was a health status that you were seeking treatment for and I just wondered...thanks for the clarification.
I haven't tried NIS but I agree with Adeodatus that you should never try to replace conventional treatment/medicine with alternates. The first rule is do no harm and ignoring traditional medicine includes a great risk of significant harm. Personally I'm extremely sceptical of alternate and complimentary medicine and like to see the evidence for conventional medicine too.
As you're doing continue with your research,maybe discuss with your regular doctors and good luck with whatever you decide.
Posts: 2871 | From: "A capsule of modernity afloat in a wild sea" | Registered: May 2004
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Firenze
Ordinary decent pagan
# 619
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Posted
It's a toughie. Back in the day, I had quite a large acquaintance in New Age circles, and tried all sorts. At one time I had chronic and debilitating headaches. The therapies that aimed at unblocking some psychic channel, or uncovering some repressed trauma that was manifesting itself as pain - meh. Acupuncture - quite efficacious in relieving the discomfort. Eventual cure - sinus op on the NHS (with the usual amount of doctor-bothering and long wait to get to it).
I'm of an age now where incurability is a fact of life, and it's much more about management and cost-benefit analysis. So on that basis I would say if something doesn't make me feel good now I would be thinking: what else could I put the time and money to that would?
Posts: 17302 | From: Edinburgh | Registered: Jun 2001
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Doublethink.
Ship's Foolwise Unperson
# 1984
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Posted
I have read the link and tried to make sense of what actually a practitioner would do.
I am guessing from this that they:
- Take some form of history of the person and problem
- Get the client to either pull on some kind of tension meter or tap different muscle groups
- Give a brain / muscle related explanation that may be rather difficult to follow
- Tap the client gently and repeatedly on different parts of the head
In this case I would guess that there are a few factors that helped one of your daughters when she tried it.- 1) Placebo effect, (which is a real thing that we do not fully understand)
- 2) being listened to respectfully and with close attention - this could give someone an opportunity to feel more heard than at the GP's (I am guessing this would be a longer appointment) and may be helpful in processing ones feelings about the presenting problem
- 3) the physical aspects of the treatment may have been relaxing and / or soothing
Some people with anxiety and/or disorders of over control find relaxation activities very uncomfortable. They get what is called paradoxical anxiety. It is not always clear why, but it can be the sensation of letting go or giving up control that is unpleasant or frightening. Also some people are much less touchy feely than others. (I have had massages in the past, I find them physically relaxing whilst feeling psychologically very uncomfortable - basically I think I feel too vulnerable with a stranger who is touching me.)
This may explain why D1's subjective experience was very different.
I guess I would say don't do it again for those members of the family who find it unpleasant. For your daughter who found it helpful, maybe talk through with her what aspects were helpful, and decide together whether to go back. There maybe cheaper alternatives that would achieve the same thing, e.g. relaxation classes, massage, non-directive counselling, life coaching. These other approaches will not necessarily be that much cheaper though.
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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell
Posts: 19219 | From: Erehwon | Registered: Aug 2005
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Taliesin
Shipmate
# 14017
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Posted
quote:
Some people with anxiety and/or disorders of over control find relaxation activities very uncomfortable. They get what is called paradoxical anxiety. It is not always clear why, but it can be the sensation of letting go or giving up control that is unpleasant or frightening.
this. The reports on 'feeling like I was dying' is this, exactly. Makes total sense. thank you.
Posts: 2138 | From: South, UK | Registered: Aug 2008
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Taliesin
Shipmate
# 14017
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Posted
I mean, my friend is convinced it is the toxins being flushed out, but this makes 100% more sense.
It still doesn't mean it's rubbish... if it was only (!) 30 or 40 quid a pop then I wouldn't mind so much that there is an aspect of belief, or 'suitable for some in ways we don't understand' involved. I'm a music therapist, for goodness sake, and there's a fair bit of 'we don't know why, but it seems to have an effect' going on there.
And, as someone kindly pointed out on the purg thread, a few of us here are believing in God, miracles, natural order being overturned etc.
My D1, who has an amazing amount of insight, said on the way home from the appointment that she is aware that if there had been incense, candles, chanting and exhortations to believe and be healed involved, she would probably feel more inclined to respond.
someone else I know - an engineer for goodness sake - is taking her daughter to 'reverse thinking' sessions to help her ME, which seems even more ludicrous.
dear God, give me the gift of discernment... ![[Votive]](graemlins/votive.gif)
Posts: 2138 | From: South, UK | Registered: Aug 2008
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Curiosity killed ...
Ship's Mug
# 11770
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Posted
Reverse thinking, iirc, is one of the snake oils offered for CFS/ME that made a bit of sense - it's trying to come to terms with underlying psychological issues that might be making the person not want to get well. I have seen some young people who have not managed the illness particularly well, (and that's not a criticism, the management of the illness is only really beginning to take off as a treatment) get scared of pushing themselves in case they cause a relapse who find some of these psychological treatments help them get beyond that fear.
Having seen a lot of people with CFS/ME and moderated a board for parents of children with CFS/ME for 8 years, it's a diagnosis by elimination - basically we can't find anything we recognise, but you're obviously ill with these fatigue symptoms, so we'll say you have CFS/ME. It's also an umbrella illness. Researchers such as Esther Crawley and Jonathan Kerr have described 7 or 5 different forms of the illness with different expressions.
I have seen people who've lived with a diagnosis of CFS/ME for years finally getting checked out for a symptom and being diagnosed as having a mitochondrial disorder or pernicious anaemia. So a reliance on psychological cures isn't that brilliant either.
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Mugs - Keep the Ship afloat
Posts: 13794 | From: outiside the outer ring road | Registered: Aug 2006
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Jane R
Shipmate
# 331
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Posted
Taliesin: quote:
someone else I know - an engineer for goodness sake - is taking her daughter to 'reverse thinking' sessions to help her ME, which seems even more ludicrous.
If you're desperate enough you will try anything. I certainly was when we were trying to get my daughter's migraines under control... if the coloured glasses hadn't worked I might even have tried homeopathy despite knowing that it's pure snake oil.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Doublethink.
Ship's Foolwise Unperson
# 1984
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Posted
quote:
Originally posted by Taliesin:
It still doesn't mean it's rubbish... if it was only (!) 30 or 40 quid a pop then I wouldn't mind so much that there is an aspect of belief, or 'suitable for some in ways we don't understand' involved. I'm a music therapist, for goodness sake, and there's a fair bit of 'we don't know why, but it seems to have an effect' going on there.
I think music therapy has a fair evidence base, and a coherent theoretical underpining. There is - as I am sure you know - a lot of research on common factors in therapy, in so far as NIS works for some people I imaigne it leverages these in addition to the placebo effect. Basically rage + an internally consistent explanation acceptable to the patient. Rage being a therapeutic relationship based on Respect, Acceptance, Genuineness and Empathy.
(It is likely the people offering the NIS therapy genuinely believe in it - I doubt most people involved are actively trying to con their patients.)
An important thing to note, is that if D1 seemed to be distressed by loss of control in the situation - then probably don't try massage, mindfulness meditation or relaxation type treatments for her. She may do better with more active distractions when stressed.
Of course, advice on a website and £1.50 will get you a cup of coffee - ultimately you just do your best and go with what works for your family.
Try not blame yourself that you tried something and it didn't work, sometimes life just has to be trial and error - you can't always know in advance.
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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell
Posts: 19219 | From: Erehwon | Registered: Aug 2005
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the giant cheeseburger
Shipmate
# 10942
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Posted
quote:
Originally posted by Curiosity killed ...Reverse thinking, iirc, is one of the snake oils offered for CFS/ME that made a bit of sense - it's trying to come to terms with underlying psychological issues that might be making the person not want to get well. I have seen some young people who have not managed the illness particularly well, (and that's not a criticism, the management of the illness is only really beginning to take off as a treatment) get scared of pushing themselves in case they cause a relapse who find some of these psychological treatments help them get beyond that fear.
Having seen a lot of people with CFS/ME and moderated a board for parents of children with CFS/ME for 8 years, it's a diagnosis by elimination - basically we can't find anything we recognise, but you're obviously ill with these fatigue symptoms, so we'll say you have CFS/ME. It's also an umbrella illness. Researchers such as Esther Crawley and Jonathan Kerr have described 7 or 5 different forms of the illness with different expressions.
I have seen people who've lived with a diagnosis of CFS/ME for years finally getting checked out for a symptom and being diagnosed as having a mitochondrial disorder or pernicious anaemia. So a reliance on psychological cures isn't that brilliant either.
Part of the problem with understanding CFS is when the S for Syndrome part is ignored. Trying to treat it as if it is one illness is not going to work because there are many different illness that can be behind the syndrome, which is why it manifests differently for different people. Using management (alongside further diagnosis) is a sound strategy because it recognises that CFS is a syndrome and not an illness, and that it therefore works differently for different people, something that has been common in Australia for a couple of decades now.
This is why the medical community in Australia is generally opposed to calling CFS anything else (as well as ME, there are other less common euphemisms) that drops the Syndrome part of the name. There is recognition that the whole name can be misunderstood at times, but a general perspective that calling it anything else would be less helpful.
quote:
Originally posted by Taliesin:
I mean, my friend is convinced it is the toxins being flushed out, but this makes 100% more sense.
Just be careful, talking about "flushing out toxins" points to a probable diagnosis of Acute Science Deficit. When confronted by any mention of "toxins" the immediate response needs to be "which toxins?" to understand whether you're dealing with science-based medicine or woo.
There are conventional methods of flushing out unwanted material (whether simply waste material or "toxins") from the human body - urination, defecation and vomiting. Dialysis is also a method by which this can be achieved, when the kidneys are not functioning properly and the urination process is consequently disrupted.
(Edited to fix code)
[ 24. July 2013, 20:11: Message edited by: Firenze ]
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If I give a homeopathy advocate a really huge punch in the face, can the injury be cured by giving them another really small punch in the face?
Posts: 4834 | From: Adelaide, South Australia. | Registered: Jan 2006
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