Hello again, dear readers and thanks for the comments and questions. So, an update...(pauses to twirl a cotton bud in her ear - is it only me who is hooked and on two or three a day?). I'm feeling a bit stretched this week as I flew down to visit my sister and cute nieces last weekend, and Nice Man and I are invited to a wedding in the Highlands next weekend. So I'm trying to catch up with the small stuff in between - email, dark washes, wilting pot plants. I am trying to keep in the 'flow' and attempting to side step what-if-I-can't-manage thoughts, which hover like wasps by a nest.
In response to Neil's very valid question - Why are you not encouraged to talk about the mind/body therapies? Well..., I used to wonder this myself, but I can see a rational behind the recommendation. In all these therapies, they suggest that clients try and move away from 'headyness' - I like this word because I do often feel tangled up by my thoughts. I get very 'heady' at times and I don't enjoy it. Analysing, explaining or defending MT to others might hold you back, when you are supposed to be trying to get into the flow of listening to what your body or 'bodymind' wants from everyday situations.
I don't think it's a cult or anything. If a patient got a medical procedure, his friends and family would be better off asking the doctor for technical details, rather than the bloke himself who has just started the tablets or had an appendix removed.
I don't know if MT would help most PWME. I hope it'll help me further but I still struggle with the concepts of it myself, so I've still got big 'L' plates on my MT car. I do know, however, that PWME's would be more likely to listen to other PWME's - those who hoed the rows for years, alongside them. Is that how you write hoed? Dictionary says yes.
Must go for a bowl of cereal now. It appears to be my main fuel. Move away from the headyness, lock target on Jordan's Organic Muesli. But thanks to others for asking and I'll let you know how I get on.
-C
19 comments:
Hey C, I just read Neil's comment on your Mickel Therapy thread, and at the risk of being controversial, I want to say that I am in agreement with him, I don't understand why you have to be 'silent' about the treatment (unless they are afraid that possible negative feedback from other PWME could be detrimental to your getting the most out of the treatment, I can understand that, and let's face it, people are just so polarised about this whole mind/body thing!). And I confess I am still fairly cynical about MT (& the other mind/body therapies), but I know only too well how godawfully ill you have been so I trust that if you say you have improved, you have improved - you know better than anyone your own illness. But I I am so perplexed! And even though I know it is helping you, I would still be reluctant to try it myself to be honest. I would prob rather use the money for vit C drips (they helped me years ago in London) if I could only find someone in Scotland to do them! Anyway, hope you continue to improve, maybe once the therapy has finished you can blog more freely about it, that could be useful to others I think. x
I'd like to voice my support for Ciara keeping her MT conversations private. Not because there is anything mysterious or secret about the theory and techniques, everything is laid out very clearly in a free downloadable PDF "book" on the RT website, or in either the RT or MT books and both are only a tenner from Amazon. But everybody is different, so the way one person "listens to their symptoms" is very different than another - Ciara's point about not taking advive on a surgical procedure from a bloke down the pub is spot on, I think. And let's face it, PWME have limited energy, so entering into a publc debate about whether R/MT is worth the effort isn't really a useful focus for their energies, I don't think.
HOWEVER there is a great blog about a successful recovery from ME using RT, with lots of juicy detail, here:
http://www.littlemissreverse.blogspot.com/
- and Miss B also includes links to other blogs, several of which are negative - so, you get a pretty balanced picture. Also there's a great exposition of how RT worked for one person - not a sales pitch- here:
http://www.beatcfs.info/reverse1.htm
( It's in 5 parts, links to the next part are in the bottom right corner of each page. )
There was a great forum where people were talking about these issues, but sadly it closed recently. At the end of the day, everyone has to make their own mind up...
Hope that's useful/interesting ?
PS. Two or three times a day is excessive ! Oce or twice a month is fine, and in theory you don't even need that :-)
Hey Ciara & Ian, I can't see anything free on the MT website, they charge £5.99 (& I also see a course is around £700!) but maybe I have missed something. I agree PWME shouldn't waste energy defending their choices (we waste enough energy defending our status as genuinely ill people), but I would be more likely to be persuaded by someone like Ciara to have a particluar therapy than by the MT website. Everything I read there makes me scream, No, no, no! So I think it is important that if it has the potential to be an effective therapy, people who have benefited from it should feel free to tell us about it in their own words. Public debate is always useful. If things are shrouded in 'secrecy', you become naturally suspicious.
Hi NMJ,
yup - I know where you're coming from. I would go into more detail if/when I get better at doing MT -ie. if I ever got sustained, big time improvement. At the moment my experience of it is still of an incomplete learner! I've been doing MT for 6 months but perhaps I'll need a year or two? Who knows?
-C
-C
Hi NMJ,
yup - I know where you're coming from. I would go into more detail if/when I get better at doing MT -ie. if I ever got sustained, big time improvement. At the moment my experience of it is still of an incomplete learner! I've been doing MT for 6 months but perhaps I'll need a year or two? Who knows?
-C
-C
Hi nmj,
I feel exactly the same about the MT site - it's why we chose RT ( Reverse Therapy ) not MT. The free PDF is on the RT site ( www.reverse-therapy.com ) - there's a link to it on the bottom tight side of the page. I strongly recommend it, but Eaton's book is better.
For what it's worth, RT has an anecdotal success rate of 75% and is in the middle of full-scale clinical trials. Personally I find it's presentation to be more scientific, rational and clear than MT, but yet again that's a personal thing.
One important point I'd like to make is that both MT and RT are very clear about the fact that ME is NOT "all in the mind". However, there are many things you can do using your mind, after listening to what your body needs, to make ME's physical effects less important and maybe even irrelevant.
Personally I see an analogy with diabetes or high blood pressure. If diagnosed, we accept that we need to take medication for the rest of our lives. If we're short-sighted, we wear glasses or contacts. These physical steps reduce or remove the impact of the condition on our lives. If we have high blood pressure, we avoid stressful situations - because the impact of our mental state when stressed can have a negative physical impact on us.
In a similar way, I believe that if diagnosed with ME, we need to take steps to modify our behaviour and listen to it's symptoms. ( Which doesn't mean pacing. ) This is a mental process which reduces or removes ME's physical effects. This makes perfect sense - after all, the brain is part of the body - our nervous system is an extension of the brain which extends right out to the tips of our toes. Why wouldn't one influence the other ? At the risk of being saucy, consider this - a man only needs to think of an attractive woman to discover that pure thoughts can have a tangible, involuntary and largely uncontrollable physical effect on the body !
Our western obsession with a mind/body split is a complete red herring - these are just different ways of looking at the same thing, and their effects are intimately linked.
These techniques don't help everyone, but they are starting to help many people. My wife had ME for 8 years, and RT has given her something like an 80% improvement over the last 12 months, I would say. ( Ciara, she's made some big progress quite recently which is why I've upped that estimate. ) We certainly can't say that about CBT or any of the pacing, dietary changes or supplements that we tried, for example.
I urge anyone reading this to keep an open mind about all of this - RT enabled us to understand ME and defuse it completely, it might do the same for you.
As I said in a previous comment, I'm really pleased that the MT seems to be having some beneficial effect for you Ciara, but I have to side with NMJ really. The more I have read about MT and RT, the more I feel that there elements of it that make some sense and others that seem nonsense.
I have always thought that all illnesses have a psychological component. I can see that, at a certain stage in recovery, a PWME may be stuck in a frame of mind where fear and anticipation of what night happen if they attempt an activity may hold them back more than their actual state of health. I know that there are times when I really wobble about doing something and have to try terribly hard to listen to my body and work out if the fear and wobble is justified or is *just* fear --- and I should give myself a kick up the backside and get on with it i.e. 'feel the fear and do it anyway'.
However, there is surely a physiological and neurological component to ME and I really cannot see how any amount of mind-body dialogue will help or, even better, cure it.
My suspicion is that those people who are helped by these therapies are at a stage where their illness has abated somewhat and what holds them back is fear. Other people who are 'miraculously cured' probably never had ME in the first place (and PLEASE don't think I include you in this category)
I have read of several people who said they had ME/CFS and probably really believed they did. There was/is a blog by someone whose posts were by and large all about her struggle with that condition and then, one day, a post about a Paul McKenna book and hey ho she was cured. The blog now centres on her miraculous recovery and the business she is building up. That's great for her but builds false hope for other PWME. I've read PM's books too and listened to the CDs. They were great. They helped me overcome some of the wobbles but I'm not cured. I'm not well.
As I said before, I will follow your journey with real interest and with genuine hope for positive outcomes and happiness for you.
Just wanted to put in my two penn'th
:-)
My own view is that some therapies may well help some people at certain stages of their recovery. Different people will benefit from different approaches, so if it works for you, then it's right for you at this stage in your recovery.
My suspicion is that those people who are helped by these therapies are at a stage where their illness has abated somewhat and what holds them back is fear.
Hey Cusp, I suppose that is my feeling, that people who benefit are treating more their 'fear' rather than the actual physical illness, and are simply maximising what they can do. But as I said, I know how really HORRIBLY ill Ciara has been, we have known each other since late 80s, both been ill since early/mid 80s, and I have 100% faith in what she says even although I can't understand it!
Personally, I have relapsed far too often after overdoing it (once catastrophically), so I trust now my own radar implicitly. And if I am honest, I probably still overdo it most of the time.
Hey Ian, it is all so tricky, isn't it? I am glad your wife has found relief, that is great news. I just need to be convinced more of the efficaciousness of MT/RT. But at least they can't make you worse like graded exercise could.
It's really frustrating trying to express in words how powerful RT is ! I think the time has come to let this rest, but I just want to make a few points:
- Yes, one of the most powerful things RT can do is remove fear. But it's not fear of the activity it removes, it removes the fear of the symptoms. It does that by teaching you to understand why they are happening, and what to do so they won't have to in future. It's so much more than that, though - it's so heard to explain in a soundbite ! That's why Eaton and Mickel wrote books, and most people need a trained person to help guide them through the process. Please don't make a judgement based on what is here or on the websites - get one of the books from the library ( by post, if necessary ) and try reading them so you can see the full picture.
- I know it wasn't meant it that way, but I think it's hurtful to suggest to anyone that they don't "really" have ME. For what it's worth, my partner was diagnosed by a specialist in ME at Addenbrookes Hospital in Cambridge, which I suppose makes her as "qualified" as anyone to say that she has ( or, had ) ME. Yes, she had made progress over the years, but she still struggled daily with the illness and the apparently illogical ( even cruel ) way that symptoms "took revenge" on her for simple activities. RT explained this and provided plausible explanations and strategies.
- I don't accept that the only people who benefit from RT and related therapies are the people who are "getting better anyway". If you don't find the links in my earlier post convincing, Eaton's book is full of testimonials from people that anyone with ME will recognise immediately, for example. If you read it and don't find an account that chimes with your own experience, or afterwards you still feel none of them "really" had ME, or were already recovering naturally - fair enough. Was my partner already "better" before she started RT ? It's impossible to say for sure, but I genuinely don't think so. Is she better now ? Yes, and getting even better all the time.
- I think the talk about "overnight cures" is misleading and unfortunate. My partner's improvement has been a rocky road over the last 12 months, and has been extremely tough going - plus, we aren't completely there yet. I think the reason people get tempted into talking about instant cures is that with hindsight, R/MT can seem like a "key" which instantly enables you to understand why symptoms are happening, and how to avoid them. Like all great insights though, the answer is deceptively simple, but is extremely subtle, and very difficult to put into action - it takes a long time and a lot of work.
- nmj, I think you're right, it's unlikely to make anyone worse. RT is a theory about why ME happens - a disfunction of a body part ( the hypothalmus ) which causes physical symptoms in response to certain triggers - some of which are physical, some mental. Then it offers solutions based on the theory. Which means you can try them out and test them. This was how I approached it - almost as an experiment. "If RT is right, then this should help my partner. If not, we bin the book." For her, RT turned out to be right, and we went ahead and booked some sessions, and she's never looked back. It took months to accept that "yes this really is going to be a long-term solution", but it did happen.
In the end, I'm only suggesting people are open-minded. If your goal is to get well, I think at some point you have to ask yourself - "Is what I'm doing working ? Am I getting better ?" If the answer is "no", you have two choices - give up, or try something else. Of course you can wait and read Ciara's blog to see how she gets on. But, let's imagine that in 2 years time she announces that MT has worked for her. That will be two years where you could have been experimenting with these ideas, too. I think the fact that someone in her position, who has in her own words been "flying the flag" for acceptance of ME as a "real" illness, is sticking with MT despite her reservations and doubts, speaks volumes.
Hi Ciara,
I've been really interested, and of course very pleased for you, to read that you're getting some improvement with Mickel Therapy. I really hope that your improvement continues, and like everyone else I'll be interested to see how things unfold for you.
I have a couple of things to add to the general debate here:
I've had quite a good look at the Reverse Therapy website, and the downloadable book by John Eaton, and i have to say i'm still pretty sceptical about it. I think it's important to point out that the idea that stress and emotions can interact with physical health, and levels of hormones, endorphins etc has been around for a long time, and is very sound - there's nothing new in this. And techniques to deal with/reduce stress levels or anxiety can, where appropriate, be a useful part of managing chronic illness. But I feel very uncomfortable with the RT concept of the "symptom message", that "bodymind" is telling you something about a situation in your life if you feel ill. I'm afraid I don't identify with these ideas in relation to my own experience. In my own long experience with ME, I've found that I get very ill from over-exertion, whether doing something difficult, stressful, mundane etc, or from doing something joyful, fun, uplifting of fulfilling. There's also the suggestion that fear of symptoms is a big problem, but i spent many years optimistically overdoing it all the time, with, if anything, too litle fear (in the sense that I tend to ignore symptoms and push on untill collapsing).
I also don't identify with the idea that it's an expectation/fear of symptoms which maintains my illness. My experience has if anything been to be over-optimisic about what I can do.
I don't know why ME/CFS is described as a "non-specific" illness by John Eaton. Isn't that gradually becoming a nonsense? It reminds me of the awful term "medically unexplained symptoms" used by some psychiatrists about ME, which implies that there's no specific pathology. I also noticed a section where he says that RT can't help in a situation where tissue damage has occured or a virus is active. But it seems from research that these things do happen in at least some people with ME/CFS.
I want to make it clear that this isn't an attack on anyone who is trying or benefitting from these therapies. I respect all your experiences. We are all desperate to be well again. But I can't help feeling suspicious at times that these therapies, however well-meaning, are somehow exploiting a kind of gap in the market, where ME is such an unknown quantity. Claims of a "cure" can be dangerous - this bothers me because i fear that just like with CBT and graded exercise, these therapies could (unintentionally) hoover up all the attention and resources away from other biomedical research, and play into the hands of those who still believe that ME can be "fixed" by a talking therapy. Maybe for some people RT and MT are very helpful management strategies, but I doubt they're going to have all the answers.
It's interesting to read all the comments on RT/MT. I have mixed views on the treatments and understand both sides of the debate. Overall, it's amazing to hear that some people are recovering from ME, and for me it's not what therapy/treatment they are having that is important, it is just great to hear someone is getting out of this illness. All the best for the future Ciara. x
If your goal is to get well, I think at some point you have to ask yourself - "Is what I'm doing working ? Am I getting better ?" If the answer is "no", you have two choices - give up, or try something else.
Hi again Ian, This seems to be implying that we are somehow obliged to try other therapies, and it is our faults if we are not getting better! . . . I have tried countless therapies over the years, I have also achieved a fair few things, considering my illness - I have NEVER given up, now I am happy 'being', that is enough for me until there is hard evidence something is going to work. I think after 24 years I have a good understanding of what I can and can't do, this is simply the reality of the impairment my illness causes. This is not giving up. I agree totally with what anonymous above has just said. I also don't have £700 to hand for RT or MT! Most PWME wouldn't, I would expect. The whole experience of having ME is so politicised now, people have such strong feelings about their own points of view (myself included). But the truth is we still don't know what is causing our illness biochemically, and until we do, we won't have a surefire cure...
Anonymous, that's a great post, thank-you ! I'm glad you read the site and PDF, that's my main reason for my posts - people were curious about M/RT and I wanted to point them in the direction of the information so they could form their own opinions. A few more comments in a minute...
nmj, I'm really sorry if I came across as seeming to be blaming people for "not trying", that wasn't my intention at all. My point was that while accepting all your reservations about M/RT, I still think they are worth considering carefully - because, as you pointed out, we just don't know what causes ME. Rejecting any treatment which uses a mind/body approach reduces our odds of finding a solution, especially when these techniques are having success. If the success rate of RT really is anything like 75%, that's vastly better than any other approach to date. Whereas all the other things we've tried - don't work. They're coping strategies, nothing more. RT/MT is more, I'm convinced of it .
BUT on the other hand I certainly accept that ME & CFS are so complicated and poorly understood, that there are probably several different types or categories of each, some of which may need different solutions than others. A 75% success rate means it won't work for 1 in 4 people...
The money - yes, it's expensive. But £700 isn't an absolute - the number of sessions varies, my partner has just been "signed off" after her 5th - and, people don't have to do more than the first session if they don't want to. If it seems completely wrong for them, that's only £80 - still a lot but possibly a worthwhile "gamble" if anything in the therapies strikes a chord ?
anonymous, You make some good points, and again I think a problem is that the information on the website is necessarily limited, which is why I keep recommending the books. But just to tackle one of your points:
There's also the suggestion that fear of symptoms is a big problem, but i spent many years optimistically overdoing it all the time, with, if anything, too litle fear (in the sense that I tend to ignore symptoms and push on untill collapsing).
This is key. RT & MT are all about listening to your symptoms - so although you don't have to be afraid of them, you need to pay attention to them. Basically they are saying "whatever you're doing now is wrong - change it". "Pushing on" is about the last thing you should do, as everyone with ME finds out. However that doesn't mean you need to stop everything, necessarily. Perhaps all bodymind wants is a change. The suggestion is that ME is a disfunction - so in someone healthy, the response to "doing too much" might be a headache, whereas in ME the hypothalmus over-reacts and completely "shuts you down" the minute you "overdo" things. It's also worth pointing out that some people have triggers with very different roots - for example being injured or some other traumatic incident, as in the second link in my post at the start of this conversation.
Gradually through the process of RT, ( some ) people can find alternatives which reduce the symptoms and don't trigger fresh ones. The hypothalmus reduces the extremity of it's reactions accordingly, and suddenly you can find a positive "feedback loop" rather than the familiar negative ME one.
Anyway I'm no therapist, and I think I've used up far too much of Ciara's bandwidth already !
I hadn't been back here for a while but I see the pot is simmering nicely and so am I now I've read some of the other comments: what Mrs Merton used to call a 'heated debate', I think
;-).
Hey Ian, it may be that I didn't express myself very clearly but when I mentioned 'feeling the fear and doing it anyway' I was referring to fear of the symptoms and not just fear of the activity. I'm sure that anyone who has had M.E. for any length of time, like NMJ, Ciara or myself, has already learned to listen to their symptoms and adjust their life accordingly.
I also didn't suggest that the likes of your wife or Ciara didn't really have M.E. in the first place. The person I mentioned who has another blog only said she had M.E. and I have no way of knowing if this was self-diagnosed or diagnosed by a doctor. As for myself, your wife and almost certainly Ciara, too, we have all been given an 'official' diagnosis (mine came from the Centre in Lowestoft eventually) so we all know we have M.E. On the other hand that term seems to encompass a whole range of symptoms and experiences. In some ways I still wish that we could have a term which included the word 'syndrome' (but not cfs) because that might indicate what a broad spectrum of experience the diagnosis implies.
I still think that the cost of these treatments is exorbitant and way beyond the reach of many people with M.E., some of whom are living hand to mouth. If the originators of these therapies are so convinced of their efficacy, why not reduce the fees or offer treatment based on a scale of fees which relate to income? After all, many complementary therapists do this so why not MT/RT ?
If the costs were not so exorbitant I might be willing to give it a try but, even with the fear that I might be lagging behind people like your wife, I cannot take the financial risk. After all, after only 7 years since diagnosis, I have spent a fortune on all sorts of therapies and medicaments and some have helped a little and some have done nothing at all. Despite this, I have not given up and, like NMJ, I have achieved a great deal. As I say the diagnosis came 7 years ago when I had am almighty crash which left me without proper sight, hearing, mobility etc. etc. (all the usual) but up until then I was pressing on since I had no proper explanation for what was happening to me. The medical profession told me I was neurotic, depressed or malingering so I collected more medication and carried on with a part-time degree and job and then a very full-time job.
Actually I read a lot on the RT website a good while back and I downloaded the book, so it's not that I'm not interested and not that I don't think the whole MT/RT idea may have some validity. It's more that I am cynical about some of the claims about such amazing results.
I don't know how long ago your wife was diagnosed but if, like me, you had had M.E. for over 30 years (which is what I discovered at Lowestoft) and tried so many treatments, you too would be cynical and jaded. What I do know is that for many people the severity of symptoms of this condition waxes and wanes like phases of the moon. Sometimes there seems to be an explanation for the change in severity and sometimes it appears to be a mystery. This is what I meant when I mentioned someone beginning to feel better; not that they were beginning to be cured but 'having a better phase'.
I really do hope that anyone who tries any of these therapies has found a way to improve their health and that the improvement is long lasting. Only time will tell and I hope that NMJ is correct in her assumption that at least RT or MT cannot make you any worse. If I had the available funds, I might take the risk but in the meantime, if the treatment is so efficacious, maybe the therapists could make it more accessible to more people.
I have nothing particular to add, but have read all here and find myself strangely upset. I've had ME for over 20 years, have stopped trying "everything" for a cure, but still feel this awful sap of hope rising at the thought of a possible cure. The hope terrifies me. I rather push it away and make do, as I have had to learn, than have my heart broken again. Still, I listen. I yearn.
Hi cusp,
I think the reason that RT is going ahead with clinical trials is so that it can be offered on the NHS. The MT site says they want to as well, but I think RT is further along in this area. Hopefully this will make it much more accessible.
The PDF "book" is good, but I find it is quite general - ie. about RT for good health. The printed book is entirely focused on ME and much more relevant and useful, I think. ( http://tinyurl.com/yo8ss9 )
Don't worry, I didn't take you comments about people "really" having ME personally - my reply probably sounded defensive but I was just thinking of the people I know who benefitted from RT but clearly did have "real" ME. It's a real shame the curecfs forums closed. Of the 30-40 reguar posters there ( guessing ! ) probably 5 or 6 considered themselves completely recovered ( some for 2 years or more ), and attributed their recovery largely to RT.
30 years - ouch. No, my wife is "lucky" enough to have had ME for "only" 7 or 8 years since she was diagnosed, maybe 9 altogether. ( By the way, I grew up in Lowestoft - small world ! ) Her last severe relapse was after the birth of our son, 3 years ago. The idea that her current improved state is just a "phase" and that she might cycle back into relapse is a scary one, but luckily I don't believe it any more. During that last relapse I was terrified that having a baby had "doomed" us to that fate, but we weathered it, and since then RT has been a sea-change for us in terms of both the severity of the illness for her, and how we fix it. Even if she has another bad patch, we know what to do and I know she will bounce back fast and better than ever.
I hear your frustration and doubts, but there really is a fundemental difference between "listening to symptoms" and limiting our behaviour to avoid them, and listening to what they are trying to tell us, and modifying our behaviour in response - by doing something different, rather than just avoiding the trigger activity or situation.
Finally, I hope my discussion doesn't come across as "heated", or just seem to be spouting rhetoric, as Ciara put it - or, trying to persuade people to try R/MT if they don't find it's ideas appealing or convincing. I know my tone can seem forceful sometimes, but it comes from enthusiasm for the possibilities, and a desire to make more people aware of these relatively new ideas, that's all...
I've had ME for over 20 years, have stopped trying "everything" for a cure, but still feel this awful sap of hope rising at the thought of a possible cure. The hope terrifies me. I rather push it away and make do, as I have had to learn, than have my heart broken again. Still, I listen. I yearn.
I completely relate to that. We were terrified of RT, for those very reasons... A previous key stage of dealing with ME for us was accepting the limitations it posed, and resolving to have a great life despite those limitations. Opening ourselves up to hope again felt dangerous, reckless even. But the ideas and approach in the printed book "spoke" to us in ways that no other approach had - other things seemed to make logical sense and we could persuade ourselves to believe in them, but RT just felt right. And in the end, perhaps one of the worst things about ME for me was the erosion of hope, and the way it made us deny what we really wanted and limit our lives.
I would hate for someone to try RT because of what I said and then have their heart broken if it didn't work - so if the ideas being discussed here make you feel angry or seem fundementally wrong, I would be cautious. But at the end of the day RT is all about trusting what you feel, ( symptoms, emotions ) and if the ideas here or in one of the books sound plausible or "strike a chord" with someone, and especially if they make you feel hopeful - I think that's a good sign.
Not an easy decision though, and my heart goes out to anyone trying to make it...
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