Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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My Chronic Fatigue Recovery Story

Discussion in 'General Treatment' started by ChronicFatigueSurvivor, Nov 18, 2014.

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  1. ChronicFatigueSurvivor

    ChronicFatigueSurvivor

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    I wasn't sure where I ought to post this, but I figured here would be just as good as anywhere else. I know that this post will be very long and drawn out, but I really just wanted to share my story somewhere. I'm hoping it will prove valuable to someone else. Please consider it.

    It was April 2013 that I got chronic fatigue after going through a long period of high life stress, with my first crash being brought on by some ants that I got bitten by in Australia, followed by really severe triple jet lag. From then on, my functioning level fluctuated between 20-30%, and trying to do anything over that would trigger a crash.

    I went to doctors, got tested for everything, did a lot of research, tried to eat healthy, etc. etc. It's been heard all before. Everything about my condition remained the same until almost one year later, the beginning of April 2014 (this spring), when I was in one of my brain-foggy hazes and started watching all the videos on chronic fatigue that I could find on Youtube. One of the videos was a BBC documentary called M.E.: Toxic Tiredness. The second half of the video follows two long-time sufferers of CFS as they go through talking therapy in an attempt to cure themselves. The idea being sold to them was that chronic fatigue has physical symptoms but emotional causes, and if they went through therapy and talked about their feelings they’d get all better. The specific therapy was Mickel Therapy, based in England, which you’re supposed to do with a trained Mickel therapist for the price of several hundred British pounds. The underlying belief of the therapy is that we are all affected by negative emotions, and when those emotions are ignored and suppressed it leads to us being internally depressed, and when that depression is ignored and prolonged then it debilitates our bodies with chronic fatigue, fibromyalgia, or other chronic illnesses.

    It came across to me as a whole lot of British bullock; they showed a few people that’d been “cured” from the therapy but I was sure that it was all from coincidence or the ‘power of positive thinking’ or just the placebo effect. I looked into it further to see what myth-debunking articles the internet would have on the so-called therapy, and instead came across a series of books on Amazon by a Dr. John Sarno. He writes on what he calls “mind-body disorders”, physical ailments that are caused by strong emotional reactions, like headaches, back pain, eczema, stomach cramps, etc. He talks of stress and anxiety being able to trigger them, and writes how the ailments can be eradicated by dealing with the emotion behind it. I figured it might be worth it to read about his books, and when I did I decided I should see if I could explore some of my own feelings. I didn’t have much else to occupy my mind with, and I’d get some back pain every now and then, so I figured I’d try it out. I reasoned that if I managed to deal with some negative emotions I’d be happier and it’d be a little easier for me to live with chronic fatigue.

    I wasn’t going to make the investment for a therapist, but I suck at acknowledging my feelings, so I got a self-help book called ‘Running on Empty’ by Jonice Webb. (It helped tremendously.) I kept a notebook to write in everyday. While there were things about my life I didn’t like, even with chronic fatigue I considered myself to have a positive attitude with no anxiety, no depression, and not a lot of stress. Very soon after I started exploring my feelings though, I had a huge wave of debilitating anxiousness settle in on me and my back pain got infinitely worse and I started having major stomach cramps and I felt a whole ton of depression coming up. It felt awful; horrible. To get my mind off of it I’d try to work on my feelings more and try to focus on how I felt emotionally to distract myself from how like crap I felt physically and psychologically. I started wondering if I had actually brought the anxiousness and cramps and depression upon myself by trying to recognize my feelings, but at that point I couldn’t tell. It was all extremely frustrating, but I was set on trying it out for one month before giving up.

    After a while (as in like 10 days) I was happy to discover that as I acknowledged and let out my feelings one by one (mostly anger; I had a LOT of anger, which no one including myself would ever have guessed since I’m such a nice and sweet Canadian girl), my back pain and stomach cramps and anxiousness started to dissipate. And then I was surprised to find – my fatigue was dissipating along with them; not just the physical fatigue itself, but the brain-fogginess and the complete lack of motivational energy too. I didn’t think it was possible that it was anything more than a coincidence, or hopeful thinking. Even so, I tested it a few times by cautiously letting myself do a little more physically and waiting to see how severe the crash would be – but a crash never came. I hadn’t done any of this stuff to actually try to cure myself; I had figured that it might alleviate my symptoms, but I didn’t have any hope that it would eradicate them – and yet that’s what looked like was happening. I started doing more and more physically as I felt better and better, and I started to see the direct correlation with how I felt emotionally and how I felt energy-wise. Whenever I’d start to feel the fatigue come back over me, I’d ask myself what had happened during the day that may be causing me to feel distressed, and then I’d think of something to do to resolve what had happened. I found that I didn’t need to drastically change anything in my life in order to appease my emotions; I didn’t need to leave my husband and run away to live on a beach in Tahiti. I just needed to do smaller important things, like setting proper boundaries with others, and speaking up when I felt a wrong had been committed.

    After two weeks of feeling increasingly better I was confident enough to confide in my husband that after a year of being sick with CFS I was finally recovering (I hadn’t told anyone about the therapy I was putting myself through; I wanted to keep it to myself. It was far too strange to talk about). I kept on with my self-introspection, praying for clarification, writing everything that bothered me, and I kept getting better – until one night when we were over at my in-law’s place for dinner. Halfway through the dinner I started to feel myself going into major relapse. I went upstairs to lie down but it came on stronger and despite my best efforts to calm myself, I felt way fatigued all over again. I tried to think back over the course of the whole evening – to remember if there was something that happened that had bothered me – and then I remembered a comment that my mother-in-law had made to me twenty minutes earlier; it was largely negligible and I didn’t even consider it to be a big deal, but I realized that it had made me feel angry and I’d just ignored it. Once I came to that realization, I decided how I was going to address it and resolve it, and once I had made myself feel better, the fatigue was gone within ten minutes and I went downstairs for dessert.

    After a month of all of this I was free of all traces of fatigue, and after another month more of self-introspection and listening to my emotions I actually felt completely happy with myself and my life. It’s now been over six months since, and even though I still have life stress and all the emotional ups and downs of being a woman, I haven’t had a single relapse. I now believe that I will never have another relapse again, so long as I always continue to listen to my feelings.

    I do still testify that ME/CFS is a real, physical, debilitating bodily illness, and that it is not merely “really bad depression” or something that is “all in your head”. It is not a mental illness, nor a mood disorder. It is a physical handicap, real and tangible, but I now believe that emotions are real and tangible too, and that they are real enough to wreak havoc on our bodies and immune systems.

    Please look into the story. You can read up on the books I mentioned (Dr. Jonice Webb, Dr. John Sarno), do the research, and try it out for yourself for a month, even if you think it’s all futile. It won’t hurt anything. – At the very least, it’ll stop you from getting back pain ;)


    These are the steps that the therapist takes you through in order to help you. I did them on my own:

    1. Suppose that the physical symptoms are manifestations of real emotions (you don’t need to actually believe it is or have faith in it, just suppose it is hypothetically.)

    2. Get to know yourself and your feelings better. Meditate, pray, write in a journal, read an emotional self-help book, do anything you feel might help you recognize your feelings better.

    3. Through your introspection, try to identify a negative emotion you feel (sadness, anger, frustration, grief, etc.) that ought to be addressed. Figure out the cause of that negative emotion; what event, person, or situation triggered it.

    4. Figure out a way to correct the situation; once it is fully corrected, the negative emotion will go away on its own, and you will have a little bit of your emotional freedom back.

    5. Repeat until you have a firm understanding of yourself and have properly expressed your storage of pent up negative feelings. It all gets easier with practice, and eventually starts to feel natural.

    6. Every time you have a sudden relapse, ask yourself what happened just before, and see if there was something that might have bothered you. If there’s something that you think maybe did effect you negatively, decide what you’re going to do about it, and fix it. Then you can see if the relapse goes away.
     
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  2. Kina

    Kina

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    I am sorry but I can't even fathom how negative emotions have anything to do with the development of ME or relapses.
     
    Last edited: Nov 18, 2014
    Hutan, MeSci, taniaaust1 and 17 others like this.
  3. John Mac

    John Mac Senior Member

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    As soon as I see a new thread claiming to have a cure for CFS/ME the first thing I do is look to see if it's a new member. And every time it is. Never once have I seen a long time member claim to have been cured. Maybe something that helped them but no more than that.
     
    Last edited by a moderator: Nov 18, 2014
  4. dannybex

    dannybex Senior Member

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    While there's a connection between psychological stress and immune function, and Dr. Sarno has thousands of documented cases of people recovering from back pain (and have read of some w/fibro), there are SO many other factors involved as well, as there are with any illness. One definitely doesn't get ME/CFS from just some ant bites and 'triple jet lag'.

    And while I don't mean any disrespect to the original poster, most people who claim to have found benefit from these techniques are really young, have had 'chronic fatigue' (but not ME/CFS) for a year or two, and then claim they're recovered, but we never ever hear any followup reports years later.
     
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  5. A.B.

    A.B. Senior Member

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    Congratulations on regaining good health and happiness. Psychotherapy doesn't cure illness, so either you weren't sick to begin with or your body recovered on its own (this is not unusual when the duration of the illness is 1-2 years, but the longer it lasts the less spontaneous recovery seems to happen).
     
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  6. jeff_w

    jeff_w Senior Member

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    I'm glad you are better.

    That being said, you likely had a different illness than the vast majority of people here. Did you ever have viral titers or natural killer cell function tested? Cytokines tested? Other immune tests? Did you ever have orthostatic intolerance? Even if you did have CFS/ME, spontaneous remissions happen, as someone stated above.

    Perhaps your emotional work was helpful to both your mind and body. However, it is far too much of a stretch to conclude that emotional work alone will cure people.
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    Just because 'something happens' before a relapse it does not in any way imply causality.
    Plenty of physically well/healthy people have similar issues ongoing or situational (periodic) stress and possible maladaptive behaviours/thoughts.

    There are also plenty of people who have been there/done that with ever so many of the 'cures' offered by enthusiastic people who have not been ill that long.

    ME is a very political illness in that there is a lot of misinformation out there as to what it is and what might cure it.
    Particularly in the UK. The people who are being 'cured' are people with long lasting fatigue. The medical community is conflating people suffering bouts of lengthly fatigue with ME sufferers since they do not believe in the illness. There are a variety of reasons for this including institutions protecting their turf and money issues.

    For a better understanding of ME the illness that is the subject of this website see:

    http://phoenixrising.me/wp-content/uploads/Canadian-definition.pdf

    It is a long document but well worth reading. ME is a disease that has many components. It affects the nervous system, endocrine system, autoimmune system, the digestive system, the circulatory system.

    Many people who suffer from ME have a number of co-morbid conditions including such things as IBS, diabetes, Sjogren's syndrome, migraine, epilepsy, Postural Orthostatic tachycardia syndrome (POTS), celiac, lyme disease, Rheumatoid arthritis,
    tinnitus, fibromyalgia, chronic pain, adrenal insufficiency, various thyroid issues. These are not at all uncommon and are just some of the ones off the top of my head. Sleep issues while not a comorbid disease is also a common problem also hypersensitivities to sound, touch, smell, light is common. Vertigo and dizziness are other common features.

    The author Laura Hillenbrand (books-Seabuscuit, Unbroken) has ME. Here is an article on her story:
    http://www.sacfs.asn.au/news/2012/12/12_16_author_laura_hillenbrand_confronts_cfs.htm

    She discusses writing as therapy for her. 25 years later she is still sick. It helps her but it has not cured her.

    The Harvard Political Science student turned ME activist Jen Brea on ME:
    http://www.huffingtonpost.com/jennifer-brea/myalgic-encephalomyelitis_b_4303725.html

    Some of the current research into ME and what they are finding:
    http://simmaronresearch.com/sr-research/

    An interesting article by a psychiatrist on treating ME:
    http://simmaronresearch.com/2014/09...-child-psychiatrist-finds-success-antivirals/

    These are just samples of information about ME. I hope that this is helpful to you in understanding why some of us may have negative opinions as to your treatment for a cure. I'm glad you have found a way to be well. Perhaps it might help other people who are fatigued.

    There is much more to say on the political misuse of characterising ME as just fatigue. there are plenty of threads here that discuss just that.
     
    Hutan, MeSci, taniaaust1 and 6 others like this.
  8. melamine

    melamine Senior Member

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    That most people who recover are young and have not been sick long is no reason to dismiss a therapy that may help some, and maybe even to the point of recovery. It saddens me to read some of the denigrating responses here to this person who shared her experience, perhaps for no other reason than a desire to help others heal as she had. If placebo is an aspect of it and it works, I wish I were susceptible to it. But it is not all that it's about.

    I am familiar with one of Sarno's books and while I find his theory offensive in its broad sweep, it was my impression that the techniques are probably helpful for pain syndromes more than anything, and maybe even for a certain subset of people with other conditions caught early enough to be in a totally reversible stage. Like so many doctors and as is human nature, Sarno generalized from his own experience - in his case, responding to the power of suggestion.

    Is there any question that another aspect of this - the effect ACEs - adverse childhood experiences - has on the development of chronic, degenerative conditions as an adult, and at a younger age? Research supporting the effect of ACEs on development of a disadvantaged biological terrain - hyper-reactivity to stress, depressed immune function, etc. , appears solid to me. A question that is being asked, of course, is, is it irreversible and does addressing something that happened so long ago directly have any effect on a disease that started much later? It's a question I believe deserves a fair hearing, even if it is thought to provide no answers for those who have been "too sick for too long."
     
  9. minkeygirl

    minkeygirl But I Look So Good.

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    Cancer patients have to wait 5 years before they can say the word cure. One year of "remission" does not a cure make.
     
  10. Snowdrop

    Snowdrop Rebel without a biscuit

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    I was not dismissing the possibility that what she had to share might help others who have similar issues as her.
    What I did want to address is that she understand in her enthusiasm she might have misunderstood the nature of the illness that does not respond to that sort of treatment. ME is so maligned and misrepresented and misunderstood by most people I in turn wanted to share some of that information for her consideration.
     
  11. dan062

    dan062 Senior Member

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    Honestly, I find the negativity on display here discouraging, although I can understand why people are naturally drawn to skepticism when somebody reports a 'cure' without giving full details of their previous condition and particularly when that poster has a low post count.

    Let's not make unfounded assumptions about @ChronicFatigueSurvivor's condition. Without knowing his/her full list of symptoms, it's impossible for us to know whether he would have qualified for a CFS disagnosis under any particular diagnosis criteria (although I acknowledge that whatever he had was brief). And without being privy to his medical file, it's impossible to know what testing he had or did not have.

    For the record: I don't subscribe to the view that positive thinking alone will be a guaranteed cure for everyone that tries it no matter what their disease, or even that it will alleviate a condition to any appreciable extent at all. And I don't doubt that there are plenty of cases of CFS/ME far too severe for this to even make the slightest bit of a difference.

    However to say that mental or environmental stress has no role in either the pathogenesis or maintenance of any chronic disease - not just this one - is to stare in the face of overwhelming evidence to the contrary and to fundamentally ignore a now established part of medicine that should offer us some hope, not further disillusionment.

    Let's see what useful information @ChronicFatigueSurvivor has to offer about his recovery from whatever illness ailed him, and whether it could be of relevance to whatever situation we find ourselves in, before going on the offense.
     
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  12. jeff_w

    jeff_w Senior Member

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    @dan062

    You quoted my post and then characterized me as having made "unfounded assumptions" about @ChronicFatigueSurvivor 's condition.

    However, with a closer reading of my post, you will notice that I asked @ChronicFatigueSurvivor several questions: "Did you ever have viral titers or natural killer cell function tested? Cytokines tested? Other immune tests? Did you ever have orthostatic intolerance?"

    Asking many questions, which I did, is surely different than making "unfounded assumptions," which is how you characterized me.

    I am very interested in @ChronicFatigueSurvivor 's answers to the questions I asked

    There is a fine line between healthy skepticism and dismissing another person's attempts to help others. That is how I understood the point you were making, and I agree with your point. I have no doubt that @ChronicFatigueSurvivor has good intentions and posted here to help others, and they deserve credit for that. What I do take issue with, again, is being mischaracterized.
     
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  13. melamine

    melamine Senior Member

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    @ Snowdrop - my comments were addressed to earlier ones and happened to end up after yours by the time I posted.
     
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  14. dan062

    dan062 Senior Member

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    @jeff_w I was just quoting your reply as a general example of the overarching tone of the replies I was taking issue with which seemed to be that emotional work definitely isn't enough to potentially majorly help somebody with CFS/ME.

    The "unfounded assumptions" and the reply wasn't aimed at you or anyone
    in particular.

    I am sorry if you drew that insinuation and I agree that some measure of skepticism is important (of course).
     
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  15. dannybex

    dannybex Senior Member

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    I believe it is possible to turn this around. I've said it before and will say it again. I know at least a half-dozen people who have recovered completely -- and only one relapsed about 10 years later, but then recovered again and has been well again for two years now. I'm not sure if any of them employed any anger therapy (or repressed anger therapy), but two of these friends were sick for 16 and 17 years, the former is in her sixties, and the latter was bedridden for 2 years and housebound for 7, but recovered about five years ago at age 42.

    It's incredibly difficult, and requires a lot of help (and perhaps the financial means to go along with it) but people, even those sick for many years, can sometimes recover.
     
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  16. dannybex

    dannybex Senior Member

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    I was reluctant to post my original post as I also don't like it when someone comes forward with their success story, and then gets pig-piled on by a majority of folks. So I agree, and will change/edit my post later, if he/she comes back and describes or elaborates in more detail their symptoms, blood tests, etc..

    I also wanted to point out that it's my understanding that Sarno and the others are not about 'positive thinking'. They're stressing the need to address buried, repressed anger, not only towards others, but towards oneself. Not sure how they do it, but it's not "positive thinking".
     
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  17. dan062

    dan062 Senior Member

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    @dannybex To a limited extent, I can understand the dynamic here from the perspective of those with severe ME (I'm not working but as I'm not housebound either I'm certainly far from that category) for whom making a recovery after such a short time-frame seems to make light of what can be an utterly devastating illness.

    However I can't understand why knocking that person seems a higher priority than learning exactly what she/he did to get better and trying to use it as a strategy for your own benefit.
     
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  18. Kina

    Kina

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    Mod hat on: I really don't want this thread to end up being a train wreck but I think it's important to address these claims constructively without making personal attacks. It's fair to address the content. Mod hat off now.

    Can I make a comment, @ChronicFatigueSurvivor -- you refer to 'Chronic Fatigue' an awful lot, not Chronic Fatigue Syndrome. Are you aware of the CCC or ICC which are highly informative regarding a diagnosis of ME? Can you add some more of your symptoms. Many with ME have POTS, PEM, varied neuropathies, problems with temperature regulation, viral infections, cardiac issues etc, etc. It's more than just back pain, stomach cramps, anxiety, lack of motivation.

    Also, many of us have been ill to some degree for years, decades and don't you think if a cure was simply releasing emotions -- well wouldn't we all be cured.
     
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  19. Gingergrrl

    Gingergrrl Senior Member

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    Hope this will help and is not meant to upset anyone. I think I have a unique perspective as both an LCSW/therapist (for 16 yrs before ME/CFS ended my career) and as a now severe patient.

    I very much believe in therapy and mental health interventions to help everything from depression to childhood trauma to eating disorders to coping with a chronic illness. Whether individual, couples, family or group therapy in a private practice, clinic, or hospital I have done it all.

    However, while therapy (of many different modalities) can help with learning safe and positive coping skills for dealing with a long-term chronic illness- to say that therapy alone can cure ME/CFS is as absurd as saying that it can cure HIV, Ebola, or make a paralyzed person walk.

    If that were the case, we would all be cured.
     
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  20. daisybell

    daisybell Senior Member

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    I know several people who have been diagnosed with CFS and 'recovered' after participating in Mickel therapy. I also know that Mickel therapy is not going to cure me. I did try it, many years ago, for a short while but didn't like the attitude of the therapist, and also I knew that it was not going to resolve my symptoms. I wish it could have! How easy that would have been....

    I have found it very hard to listen to people who have 'recovered' following psychological therapies telling their stories. I am very glad for them that they are better. However, all the stories tell me is that we have different illnesses. I am not going to feel that my 'failure' to recover is a psychological weakness on my part - anyone who lives with ME has to have incredible psychological strength - but I am trying to stop feeling frustrated at stories of recovery.

    I do feel that whatever symptoms or illness any of us have, we should be glad for anyone who improves, and hope that they continue to feel well.
     
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