Friday, June 03, 2011

In reply to Anonymous...

There are lots of Anonymous's out there, and one of them wrote -

You still haven't said what it was that got you better, Ciara! Why are people who claim to have been healed by these various techniques so unable to simply say what it was that cured them. I just don't get this reluctance. NLP/Lightning/CBT/Mickel are all like some weird religion such as Scientology who are completely secretive about the ways they behave. I just don't get it!

Okey dokey, Anon. I was like you, I just didn't get it....and the irony is, I'm not sure I really get it, even now. Yes, it seems freakishly unbelievable and improbable that anyone with serious illness could benefit from signing up to a bunch of nebulous concepts and behaviour changes. I know.

It was Mickel therapy I tried, but I guess it could have been any of the above. At first I railed against the recommendation that you don't discuss treatment while undergoing it. How ridiculous and self-limiting, I thought. How unhelpful to other sufferers. And yet, after a while I realise that repeatedly analysing the ongoing process got in the way of the 'flow' of trying to recover. It would be like trying to practise snooker/ yoga / tennis, and stopping to calculate the angle of every move, while debating the pros and cons of your game with others in the room/audience. Better to wait till the game is finished and discuss it then...

And yet - here's another twist - if it works and you do get better, miracle of miracles (!) some of us still don't fully understand how it happened. I was almost embarrassed. How could a behavioural therapy reverse a profoundly physical illness? Joe Public will reassure themselves that, yes, (it's as they thought!) you can't have been that ill in the first place. You just milked it for a couple of decades.

Of course some Recover-ees may feel cautious about what they choose to say. We face scepticism from all sides and we're not quite sure how to explain it to ourselves.

However, I am now more intrigued by the role of the psyche in all illnesses. What's the new field of research called? Psycho-neuro-immunology? There might be some answers in there.

I'm not even sure that I buy into the entire overview of these therapies - there are subtle variations down each path of MT/RT/ LP/ NLP etc. The single most important factor for me was having a therapist (is that even the right word?) who had overcome serious ME/CFS herself. (I think Recover-ees training as therapists is reasonably common in these treatments). Her experience kept me believing, or suspending disbelief, against the odds.

I think there are books and websites explaining the various 'plans for recovery', but in my experience, it would be quite hard to try it on your own. I think most people would benefit from a 'therapist' to guide them and keep them on track. I know it's expensive, and many people find that off-putting. I don't know any way round that, other than taking a gamble. It's up to every individual. I'll say again: I'm not trying to sell any thing or any one crede, I'm only speaking of my experience. I don't know if this helps or perplexes.

As they say at the end of Tele-tubbies, 'Time for Tubby Bye Byes'. Time for bed. My kids could be up at 6am. Still feels far too early. Drastic and draconian, even.



Hazel said...

Ciara, I think you handled that (dare I say rather hostile?) email very well. I particularly liked the "Better to wait till the game is finished and discuss it then..." analogy.

I have followed your blog for some time now and so much of what you talk about is relevant to my ongoing battle with depression, a different problem with some similarities. I get so much comfort and hope from your writing.

I think you are brave and inspirational and I hope that life continues to give you all the good things you deserve x

nmj said...

Hey Ciara, I've been staying way from this as I simply don’t want to get sucked into any poss. conflicts, though if I saw anyone being hostile to you I would defend you immediately! Hazel, I don’t truly think Anon is being hostile, just curious and frustrated - I do find the whole secrecy around these therapies bizarre, but I imagine it is because they want to keep the details secret otherwise people will not pay for the therapy if they can get it for free, word of mouth. Surely that is the reason? Anyway, Anon, I know how horribly ill Ciara was and if Ciara says Mickel helped her get better, then I have no reason not to believe her, even if I am – honestly - perplexed. It is also ironic that for many years C was more ill than me but now she is more well - we both got ill after Coxsackie, though I was ill for a few years before her. I too am amazed - and v. happy! - at C’s recovery but I cannot doubt it. Only C knows what gave her that leap into wellness.

I believe the hostility that *can* come from other PWME is down to therapists (and ‘recovered’ ME sufferers) suggesting that such and such a process will DEFINITELY cure you, and if you want recovery enough then you will get it. That is where people understandably get pretty angry, feeling their illness is being negated as the neuroimmune catastrophe it is. I can feel hostile in that context too, but C is not selling any kind of treatment. And even knowing her story I am in no rush to try Mickel - I am, if I am honest, cynical re. these treatments working for myself.

There is also often the big question mark whether a lot of recovered people had ME in first place as it is overdiagnosed and misdiagnosed but Ciara most certainly had neuroimmune ME!!!

Sorry if this is meandering a bit. Anyway, I wonder, C, if you think becoming pregnant also helped you – I know of others who have improved after giving birth – and hopefully not relapsing afterwards. Though obviously you were already at a stage where you felt well enough to be come pregnant. x

Ciara said...

Fair enough comment, NMJ. I did feel that the 'anonymous' commemt was slightly harrassing, but that's something I can understand too. Thanks to you and Hazel for supporting me. Mostly I just want to run away from the big debate and do things I enjoy.

But I can never deny how awful sever ME is, and how my heart goes out to those suffering. It is extreme!

I only chose to get pregnant when I felt well enough to risk it, yes. And it's all felt right from there.

Thanks again and I still recommend your novel to friends.

-C x

Anonymous said...

Hazel, why is it "hostile" to ask Ciara a simple question of what the treatment involved that helped her to get better from her illness ? I wasn't abusive or threatening.

Thanks nmj for your much more reasoned reply. I can see what you say about therapists wanting to protect their details of the treatment secret for finacial reasons but that doesn't apply to people who claimed to have been cured by these processes. Why won't they simply me tell what the treatment involves ?

It's just stories like Ciara's that make it yet even harder (as if it wasn't difficult enough already) to convince people that M.E is a real physical illness when a pyschological treatment has "cured" them.

I'm totally with you nmj that I am in no doubt that Ciara got better with this treatemnt but I think it is completely reasonable to ask how this happened. And I am still no wiser to what the process involves than when I asked the question the first time.

And nmj I'm like you that I'm not keen to try this treatment for the serious degenerative neurological condition I've suffered from for 22 years and even less so if nobody will tell me what it involves !

Finally Ciara, hopefully you would never be diagnosed with another serious neurological condition again, but if God Forbid you were, then would you use Mickel Therapy to treat and try to cure it ?

Ciara said...

In response to anon's comment - I could see this could run and run. Sorry, but I am choosing not to get into the longer debate. I thought I had tried to explain the controversies to the best of my ability.

It is not my responsibilty to explain these therapies to the wider world. I'm not qualified to. Each of them have various books and websites which outline their treatmenst and thinking. Yes, I was hugely sceptical too. But I could not ignore the testimonials. There was *something* going on, albeit in a tiny minority.

The general interpretation of the various therapies' rules will have to be made specific to each person, to all the challenges of their illness. And there are so many of those.

I am very saddened to hear that my own therapist is ill again (with sever ME symptoms) after being well for about 5 years - she was ill 20 years before she tried MT, then trained in it. This in itself is distressing and difficult - most of all for her. But it also makes me unsure of speaking out.

However, I never doubt how horribly, unspeakably ill I was (diagnosed with neuro ME) for 20 years and how 'miraculous' my recovery is now. This was achieved by following most of the principles of MT (as documented in the official book, which I thought was highly unscientific, by the way) - most crucially - under the guidance and training of my therapist. She was the key for me.

It took many sessions, much doubt and bewilderment, but after about 2 years, I'd say I plateaued at about 80% recovered.

I went on to have 2 children in 2 years and I now call myself recovered. I am off all benefits and I'm a full-time mum 'working' from 7am to 8pm when the kids go to bed. My neuro symptoms are gone and I walk 1 to 2 miles a day. All this is meant to give people hope, not annoy them.

Of course these therapies may not work for everyone, but they worked for me and many like me. This is the nub of all the frustration. Is it that people who feel these therapies are insulting to neuro ME are annoyed that they do work for some?

If I suddenly developed another terrible illness would I try MT/RT etc? I would happily try all that was on offer, in terms of medicine for both body and mind. If I got cancer or MS, I'd seek some sort of mental and emotional support in terms of CBT or talking therapy.
Of course it may not be a cure, but I'd still try to be in the right place emotionally, and yes, I guess I would try and use the principles of MT/RT/NLP, as I still do in life now.

There is one last thing that I'll say and risk attack, although it is technically true. A PWME could believe that a certain medication or drug might not work for them, and it could still help. Placebo - ie believing a drug will work might make it help even more. But it is not technically possible for a psychological therapy to work if a person believes 100% that it wont work. They close their mind to the possibility and so there is no possibilty of change.

I was about 95% sceptical, and it was the 5 % open mind that helped me start to improve.

I am not trying to sell it, as I've said before. But neither so I feel I want to defend the fact that it worked for me. I don't fully understand it, but that's okay.

I'm stepping out of this debate now. If anyone wants to try these therapies, read the websites and the books and get a recommendation for a therapist. I know they are not cheap, but that's a choice you make. When you have severe ME you can't spend money on normal things anyway - like holidays or clothes or haircuts.

And if you don't want to try this mind/body approach, fine too. I don't know what else to say.


Shona said...

Becoming well again - what a minefield! From an outsiders POV (so I know this won't be the case for all) it seems that for so long people with ME have had to put so much energy into accessing any (health)care, never mind effective care. It is also unimaginable that as well as suffering from ME you must use so much energy convincing a number of people that there is infact something seriously wrong. A nightmare scenario.

Anon said...
"It's just stories like Ciara's that make it yet even harder (as if it wasn't difficult enough already) to convince people that M.E is a real physical illness when a pyschological treatment has "cured" them."

From a health professionals perspective, the encouraging news is that medicine and healthcare is changing...albeit very very slowly, to a realisation that no illness, however minor (a cut or bruise) or major (Cancer/ME) is purely physical OR psychological. There is SO much facinating evidence out there to support this. Maybe this should seem obvious, however at present healthcare is not designed around this fact. However, any clinician worth their salt know that you do not treat an illness as one or the other.

Treatment of a serious condition should incorporate both the physical and psychological and it's ok to seek assistance with both.

C referred to neuropsychoimmunology previously. The research surrounding this is so exciting. It may open up endless possibilities...

Anyway, back to the recent posts...
Previous posters seem perplexed that C has recovered. How, they ask? I don't think any of us can fully understand the body's ability to heal (no matter what the therapy/tablet/whatever), nevermind explain it in detail in a blog. I find aspects of David Reilly's work interesting on this topic ( He considers...
"What is the human healing capacity? How may it be enhanced?".

The body has the capacity to heal and surely it is ok to believe this might happen at some point? It sounds like Ciara has found her way of enhancing or enabling healing.

However we are individuals and each illness experience is so different, that the "how?" will be personal to each of us.

Sorry for the ramble and I do hope I have not offended anyone - but a facinating subject!

Anonymous said...

Hi ciara

I've been following your blog for quite some time. I like the way your write about your life and I also appreciate your posts about your way of healing.

I got quite a bit better myself, wouldn't call myself healed though. I know that speaking out is a minefield. But staying silent about ones experience can't be a way really, can it?

As for your therapist who is ill again. It's my experience that being healed is not a total stable state, but rather a balance. And anyone of us can get out of that balance, some easier than others. Sometimes we realise we are out of balance, sometimes we don't really know where the problem comes from.

Thanks a lot for speaking out about your journey.


Carlos said...

Thank you so much for this honest report! I think you have a lot of courage to write so openly about it.

Of course its not really what all cfs sufferers want to read (me included). of course we want to read about people who got well. but we prefer to read about a wonder pill that makes us healthy immediately.

i have the the same scepticism abou this this psychology-think you did have before MT. Because it feels so physical. But reading your post makes me really think. But anyway MT doesnt seem to be available where i live.

Ciara said...

in reply to carlos,

thanks for your comment. If you are interested you could see if any of the mind body therapies are available remotely - via skype or web access etc.

....And I also felt that the symptoms were 100% physical and so damn 'real'. And, they were. But yes, there may be some help in reversing them...worth investigating.

-C x

Anonymous said...

Hi Ciara,

Is there any good news about your therapist? I hope that she is getting better.



Ciara said...

hi katya,

I really hope she is getting better too, but I am not sure of the full details.

Anonymous said...

Ciara, I just stumbled across this, I have been sick for 14 years, homebound for 8 months. I am only 29. I just yesterday came across Dr. John Sarno and his belief in tension myotitis Syndrome. He believes strongly in a mind body connection. I was never ever opened to anything like this before but have become so desperate I am considering making an appointment as we both live in NYC. Have you heard of this? Has anyone else? Do you know if this has worked for any ME sufferers? Thank you & I'm so happy you're well. It is my dream to get well enough to finish college and make my husband & I parents. :) stay well. All the best to you & your family in this new year
Take care,

Ciara said...

hi Maris,

I have not heard of this, but i will look into it when i get time. Don't give up hope. - C x

Anonymous said...

You don't get ill from ME and other PHYSICAL illnesses by using these sort of pyscho-babble nonsense "therapies". The only people who do get better had hysterical complaints. Good luck to them but stop the preaching that is harmful to all of us ME patients. Please.

Ciara said...

Hi anonymous,

everyone is entitled to their opinion, including you and me.

I was diagnosed as ME by Dr Chaudhuri and Behan and found to have evidence of brain inflammation (elevated choline). Anyway, I know how drastically, horribly, physically ill I was in those lost (20)years. I can only tell my story.

I don't think I had a hysterical complaint, but you and others are welcome to think that if you wish.


K said...

To Anonymous:

Psychosomatic does *not* mean malingering or hysterical complaints. It's means totally PHYSICAL symptoms that are influenced, enmeshed or rooted in PSYCHOLOGICAL/BEHAVIORAL/SOCIAL phenomena. Sometimes the psychological/behavioral/social aspects of life are out of our control- sometimes they're not. Ciara decided to test these waters. If anything she helped de-stigmatize M.E by demonstrating that she is a rational and open-minded person. The mindbody connection is something that has to do with everybody.

Hazel said...

Just to say I really miss your blog posts and hope things are going well.
Take care, Hazel.

Lesley said...

Where are you? Missing your blog... Hope you are ok.
Blog reader and fan if your poetry.

Anonymous said...

Dear Ciara,
Over the years that I have had ME/CFS, I've come across your story and many others. I'm crashed in bed again today and have been googling around the place, seeing what's going on in the ME/CFS research and treatment world. I came across a very very old article you wrote and recalled reading in previous years and I began to wonder how you are doing - thus I googled you and found your blog.
I'm astounded and full of hope at seeing your recovery with the use of MT. I find it hard to come to terms to a successfully treating something as severe as what you had without the magic medical pills, but I trust your story.
For those of us who have struggled for so long to validate our conditions, and to then encounter a seemingly psychological treatment for a very physically real one, and not a bunch of chemicals, is hard reconcile. It some ways if feels too easy.
I'm one of those people who have flatly refused to believe that someone had ME/CFS at all if they were cured by one of these therapies, but that's because I never knew anything about those people, and I see now, reading your story, that I have been unjust. I've known your story since I first became ill over 9 years ago. You are a real person in my mind who I have no doubt experienced what I have.
I have doubt, loads and loads of it, but mostly I have fear, fear that MT will work and I will hate that I couldn't heal myself before now, fear that everyone around me will justify themselves with "ahh see, it was all in her head", but these people are ignorant and what they think doesn't matter anymore, what matters is that I get my life back.

The long and short of this post is to say, thanks for sharing, thanks for your honesty, and it's time I tried something a little outside the box. I'm sick of being told you have severe ME/CFS, and we can't do anything for you."

Alison Orr said...

Hi Ciara
I just listened to the BBC Radio Scotland Brainwaves programme in which you were interviewed and ended up here at your blog. I’m in my 19th year with ME and don’t have the energy to read all the comments but I’d just like to warn you - I too did Mickel Therapy around 2006/7/8 and had a few years of improvement where I went back to work part-time and began to live a full life. However, it was followed in 2009 by a major relapse and my health has gone downhill since, so that I am now housebound (I never was before except in the very early stages). I’ve looked back at my MT notes and have been shocked to realise just how much I was pushing myself. I now believe that MT has in fact made me much worse and that I got through those few years on adrenal surges (see I also felt a huge burden of self-blame for being ill again and therefore not “doing” MT “properly”. So I just want to warn you to be very careful, continue to pace yourself well and rest when you can. 80% is great - I would say I was at 95% - but it can easily deteriorate if you try to live a normal life... sorry to be so negative but I hope you will find the page on adrenal surges as much of an eyeopener as I did.

Ciara said...

Thanks for this Alison, and so sorry to hear that you are ill again. Yes, I didn't mention MT in the programme as I know it is controversial. I'll check you the link. Hope you see some improvement.

-C x