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Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey

Discussion in 'Phoenix Rising Articles' started by Richard7, Jun 11, 2017.

  1. Richard7

    Richard7 Senior Member

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    Richard7 submitted a new blog post:

    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 only the epilogue that was significantly changed between these two versions. ~ Richard7

    [​IMG]

    When I offered to review this memoir I did not quite grasp that it was a memoir. I had focused on the author's name Julie Rehmeyer, which I recognised, and the subtitle "A science writer's odyssey into an illness science does not understand," and assumed that I was offering to review a work of science journalism.​

    Which would be cool. If someone wants to read all the science, interview all the researchers, synthesise an explanation of the state of scientific knowledge and ignorance and then write that book: I want to listen to it.

    True to my misinterpretation of the subtitle, the book does describe some of the science and the politics around the science. The part on PACE is good as one would expect as the author has written about PACE elsewhere. There is also a section on the state of the science of human exposures to environmental mould and how political influence seems to be shaping it, which is good, familiar and depressing.

    But this is essentially a memoir of a science writer who has ME/CFS, and it filled a need I did not know I had.

    Rehmeyer's story of getting and trying to deal with ME/CFS fits within the range of stories I have read on Phoenix Rising. She pinpoints a day where she did not seem to have recovered properly from her exertions. She saw her doctor and raised the possibility of CFS but as she was under a lot of stress and doing too much it did not exactly seem to be unexplained fatigue.

    She then did all of the seemingly sensible things, rested, changed her life as best she could and tried to rebuild her health. The rest did not seem to help. Like many, perhaps all of us she had the wisdom that the BPS school seem to think we lack and worked up gradually in her exercise expecting that her capacity would increase over time.

    But what seems like wisdom to the well proves ill wisdom in the face of this illness. She got worse: going from running slowly and having trouble cycling uphill to becoming stranded in the kitchen unable to climb the stairs back to her bedroom.

    She continued doing the sensible things: seeing doctors, getting advice and following it and learning from her mistakes. She had the normal enough for ME/CFS experience of finding that very little of it really helped, or rather that it helped make life liveable but did not help her get back to normal health. She had remissions and relapses, some good days and days where she could not manage to turn over in bed.

    Then about a dozen years into her ME/CFS she learned about mould as a potential problem and decided to test it. She did some blood tests, but the real test (vastly simplified) was to leave all her possessions behind, camp in the desert for a couple of weeks and then see if she reacted to her possessions when she returned. She did.

    So she avoided mould and did what she could to aid her detoxification pathways, and entered a rather strange state in which she was in remission most of the time but her reactions to exposures to mould made her sicker than she had been before her remission. Over time this improved and today she says:

    "At times, I’m close to 100 percent well—consistently feeling good, able to exercise as much as I want, and reactive only to the worst buildings—but other times are more difficult. During those difficult times, caring for my body requires significant effort and caution, but even then I’m able to live a full life, and I no longer would consider myself disabled. I continue to experiment on all levels—avoidance, detox, medications, psychological work, woo-woo experiments—to figure out what will restore me."

    Unlike most of us, she was able to see a reputable CFS doctor (Nancy Klimas). She owned a house she could rent out and worked freelance and seems to have been in a better financial position than most of us: there is a point in the book where she wonders about becoming poor enough to qualify for social security. I would think that most people with her severity of ME/CFS live in that sort of poverty. She had help from a lot of people: some of them friends and some who were strangers. But in the end she sees it as luck that she was able to find something that worked for her.

    She does not see mould avoidance as a general solution to ME/CFS.

    "I have intensively counselled around 10 ME/CFS patients who have tried mold avoidance, and all became persuaded that mold exposures contribute to their symptoms at least somewhat. Some have experienced remarkable improvements, though none have improved as much as I have. Some have found it to be a valuable tool, but it hasn’t been transformative. Others have concluded that while mold indeed worsens their symptoms, the benefits they experience from extreme mold avoidance aren’t sufficient to justify the extreme effort and disruption it requires."

    This seems to fit in with my understanding of the science. We know that blood cells from normal people behave like ME/CFS cells in ME/CFS plasma. So the thing that flips the CDR switch in Naviaux's model (if the model is right) seems to be in our plasma, and it seems that there are a lot of things that can cause us to release that substance: viruses, chemical exposures, and so on. Mould or micotoxins are just the ones that were an issue for Rehmeyer.

    Rehmeyer has not written that mould caused her ME/CFS. Indeed from the book it would seem unlikely. The house that she was building when she became ill, and which she then lived in during the early years of ME/CFS is mould-free. If one assumes that the chemical warfare model of mould avoidance is the right one, the fact that the house is OK now must mean that the house and its contents were OK in the past.

    So if mould was the problem in 2000 -2005 living there should have had the same impact on Rehmeyer that camping in death valley did. Of course mould is understudied, and we do not really know if this model is right.

    But the way in does not have to be the way out. One thing could have triggered the switch and another could have kept it triggered. Once we have ME/CFS we are after all easy prey to infections, and likely to have problems with detoxification, digestion and anything at all that requires energy.

    From the "what does this tell us about ME/CFS?" point of view, this book has really made me think about environmental factors. Some of you may know that I have been trying Dr. Osamu Hotta's approach to nasopharyngeal inflammation. Briefly, Dr. Hotta tested 41 patients with post HPV vaccine CFS for nasopharyngeal inflammation and found that all 41 had severe inflammation. 16 were then treated in hospital and 13 of those 16 had marked improvement 4 going on to be cured.

    I do not know what was holding those patients in ME/CFS. It may been the exhaustion of everyday life with ME/CFS or environmental factors such as mould or allergens. If so, it may have been the change in environment, being cared for in the hospital, and not the twice daily nasopharyngeal ablation that made them better. Or a combination of the two. Or not. Rehmeyer's experience just makes it clear to me that environment is something to keep in mind when reading research.

    This factor also reminded me of a blog post by Ken Lassesen in which he called for sanatoriums for people with ME/CFS.

    But the above, the science, was what I was expecting. It was certainly worth reading and thinking about. I had not looked into mould before and felt after reading the book that I would happily make a pyre of all my possessions if it would get me out of this mess.

    The unexpected thing was the importance of representation.

    We are all in the position of having to explain ourselves to people whose expectations we cannot meet: family, friends, employers, doctors, the wider community and ourselves. If we read a book or watch TV we see a view of the world that works on assumptions that do not allow for ME/CFS. Whatever pearls of wisdom they contain come from a world that is alien to our own. Whatever daydreams they may inspire will involve selves that are not much like us, living lives that are not much like ours.

    Listening to this book about another person's life in another country I was surprised to find I was more at home than I would be if I was hanging out with friends or family listening to their stories of happenings in their lives. For that strange and welcome experience alone I would suggest reading it.

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    Continue reading the Original Blog Post
     
    Last edited by a moderator: Jun 11, 2017
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  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Nice review @Richard7!

    You bring up a very good point here
    Very interesting perspective.
     
    Richard7 likes this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I am also reading it now (thanks to Never Give Up! :) I also met Julie at a book-signing/presentation that she did locally.

    Before beginning I expected that reading the book would be cathartic...and it is in a way. But it also brought up a variety of unexpected emotions as I was invited into another patient's inner journey with the illness. Maybe I will be able to describe it better when I finish the book, but it some ways it has stimulated me to look at other aspects of this illness than the ones I usually concentrate on, and in some ways it has been emotionally unsettling. I'd be interested to hear if anyone else reading this book has had a similar experience.
     
  4. trishrhymes

    trishrhymes trishrhymes.wordpress.com

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    I've read the book, and on the whole found it a very good read. The earlier sections where she is trying to find out what's wrong and dealing with how and where to live her life and trying different treatments is excellent and I could really empathise with her. The chapter on PACE is very good.

    I confess I got a bit bored with the blow by blow account of her finding out about and dealing with her mould allergy, and the development of her new relationship with her now husband.

    While I'm very happy for her that she has found love and has found a way of living that helps her to be much healthier, it all ended up leaving me feeling a bit inadequate, as though I too could find love and health if only I tried harder.

    This is emphatically not Julie Rehmeyer's fault. It's a beautifully written book and in many ways uplifting and moving. Just rather hard to read when I'm stuck at home looking after my daughter who also has ME and we're both getting sicker and sicker, and I can't see a way out for us.

    I am also a bit disappointed that, because it is so much a personal journey, and because her ME seems to be largely mould allergy, I am not going to do what I had hoped to do, and buy lots of copies to send to people in power.

    Despite this very personal response, I do recommend it highly.
     
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  5. Richard7

    Richard7 Senior Member

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    @nevergiveup From my experience this idea of the way out being different to the way in is pretty clear.

    I am not sure exactly what went on when I got ME/CFS: I do not have the inside scoop on my biochemistry. But I am a migrainer who is triggered by glare and pattern glare (lights that flicker like fluorescent lights and LEDs or high contrast patterns in space like a wall of light mortar and dark bricks) and while this had been diagnosed and I had seen doctors and taken time off work when incapacitated by migraine somehow no doctor mentioned that you are meant to avoid rather than endure your triggers.

    So in my case I started a new job and went into a worse than previously experienced lighting situation and just endured the migraines while asking for the situation to be improved and trusting that it would be and that I would be ok. I was in chronic migraine (not recovering from the first weeks migraines before I had to be back at work in the environment that would trigger the next) for maybe two months before I started having physical issues and started seeing a physio, and maybe a month later things got so bad that I stopped working all together and discovered that I had chronic self sustaining migraine (in that I would now have them without a trigger) and CFS/ME.

    If the way out had been the way in, just getting out of the bad lighting would have solved these problems.

    Migraines are an example of sterile inflammation: inflammation without an infection. Sunburn would be another. So on one level I can I just think of my trigger for ME/CFS as another major inflammatory event: like the viruses that so many others report. But it could also be that the stress my body was under gave viruses room to play.

    Of course a stressed body cannot cannot run its detoxification pathways properly. I know that I am not the only one who stopped producing or releasing bile. Or the only one who can no longer manage alcohol or the side effects of medications. It seems that everything that can go wrong does in ME/CFS @overtheedge recently quoted Myhill pointing out that the low peripheral temperatures of PWME/CFS mean that our skin cannot do its proper work in detoxification by sweating and releasing VOCs.

    The Cell Danger Response may have evolved to deal with viruses that were stealing energy from mitochondria, but it can apparently be triggered by heavy metals and chemicals that also steal electrons from the mitochondrial electron transport chain.

    So from the point of view of the CDR problems with detoxification and viruses would seem to be the same thing, and if you started with a virus and eventually dealt with it I imagine that you could be held in the CDR by toxins that had built up while your body did not have the energy needed to deal with them.

    But we do not know if this is really what is going on.
     
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  6. btdt

    btdt Senior Member

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    I just read an article this wk stating mold was the cause of cfs mcs...
    here it is if anyone wants to read it
    https://blog.bulletproof.com/how-your-house-can-make-you-weak/

    Some lab tests here
    http://www.survivingmold.com/diagnosis/lab-tests

    including how genetics is involved
    "HLA DR - Your Genes
    Human Leukocyte Antigens (HLAs), are found on the surface of nearly every cell in the human body. They help the immune system tell the difference between body tissue and foreign substances.

    The immune response genes are found on chromosome six. Patients could have two alleles, copies of genes (for each gene, one allele is inherited from a person's father, and the other is inherited from a person's mother), out of approximately 10 possible, as part of their genotype. Based on Dr. Shoemaker's data, in normal populations compared to international registries of gene frequencies of HLA DR, we know the frequency of mold illness-susceptible patients approximates 24% of the normally distributed population. Almost a quarter of the normal population is genetically susceptible to chronic mold illness. Three quarters isn't."

    I cannot as of yet get my head around much that is genetic tho I blew the cash on 23 and me..... so this is for you people who can.

    all the test about mold and this at the link above

    another site about toxic mold tests
    http://paradigmchange.me/diagnosis/

    I did read all this a few days ago and I can't tell you what it is about although at the time I thought it was quite possible and did mean to go back and read this
    https://selfhacked.com/blog/c4a/

    I forgot about it... so did not read it and would never have looked if I did not see this post.

    She is better that is good she wrote a book laying out or pain for the world a world we no longer fit into... one I miss greatly. A few touchy painful spots just in this thread... explaining or not explaining to others why you can't get up... or faking it when you can get up...
    worse still the disappointment you see in the eyes of people who love you when they look and see again... the can't.... when all they want is can.....

    letting down everyone and everything.. and the avoidance the neglect by medicine... ya it touches some of those things and I for one know it all too well...

    maybe we don't have it in our face spelled out and maybe some of us are strong enough or have not looked closely at this yet... I have and I know I won't be reading this books because I know for me this lack of help/treatment and the looking the las 30 years in the face... that is more than I can do. Again...just now.

    Still I hope it is an eye opener for some who never heard of cfs... and who knows if mold turns out to be the main cause and we all get cured who cares how we found it not me...
     

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