"Through the Shadowlands"- Julie Rehmeyer's Chronic Fatigue Syndrome (ME/CFS) Tale of Recovery

[Cort]

Julie Rehmeyer's book "Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand" on her return to health after having a severe case of ME/CFS is available for preorder.

(If you're going to get the book - please pre-order it. (I just pre-ordered mine.) Julie explains below in an email pre-ordering will boost the books prospects significantly by getting her publisher to push it out more.)

Why might someone with ME/CFS or FM get Julie's new book? For one Julie's story indicates that hope can be found in the unlikeliest places. Suffering from a severe a case of ME/CFS she was down to her last options; you know, the fringe ones - the ones you'd be embarrassed telling your friends and family (never mind your doctor) about. Alone, she headed out into the desert in a last chance effort to save her life.

[fright]

[/fright]This time it was stunningly successful. Mold avoidance enabled Julie to go from a debilitated state to being able to exercise vigorously and participate in life again. If you're stuck - and most of us are - mold is something to think about. She's not the first to recover her health this way.

Another reason to get the book is that to read a medical adventure story by an award winning journalist with ME/CFS. It's got harsh but beautiful environments (the desert - check out the cover), medical pioneers working out on the fringes of medicine, a cast of characters, a straw bale house ...

If you know you have mold issues another reason to get the book is simply to spread the word. The medical profession knows almost nothing about the mold avoidance protocols Julie and others have used to return themselves to health. Enough people have gotten well that mold and the effects it has on the body should be major research topic, not just in ME/CFS but in other diseases, but it's still the fringest of fringe topics. That has to change.

• Amazon (you can give Health Rising a boost by ordering "Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand" using our Amazon.com search box on the right hand side of the page
• Indiebound
• Barnes and Noble
• iBooks
• Books-a-Million

Here are some articles Julie's written that are related to the book:

• STAT News: Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back.
• New York Times: A Disease Doctors Refuse to See
• Aeon: The Lost Father
• High Country News: Wedding in the Shadowed Valley

Hello friends,

I have exciting news: My book, Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand, is available for preorder. It will be published by Rodale May 23. If you know you want to buy it, I’d so appreciate it if you’d plunge in and preorder it now—preorders give a strong signal to the publisher that the book is worth investing marketing muscle in.

Also, I’d like to send you my prologue for free, as a sample of the book. Just sign up for my email newsletter, and I’ll send it to you in both text and audio form. And don’t worry—I won’t be inundating you with email, and I certainly won’t give your email address to anyone else. Also, I have some other big and exciting news I can’t quite announce yet, and my newsletter subscribers will be among the first to know.

Many of you have been following this book from long before it was a book, starting in the days when it was merely a dream with a big, bad old illness standing in its way. The support of my friends over these years has sustained me, and I’m so excited to share the results with you.

Here’s the cover, along with the catalog copy:

 

[AquaFit]

What a fascinating person! I wonder what the "other big and exciting news is!" Book's on our family list to order next week. Thanks for the heads up and thanks to Julie for writing this!

 

[Cort]

What a fascinating person! I wonder what the "other big and exciting news is!" Book's on our family list to order next week. Thanks for the heads up and thanks to Julie for writing this!

I'm looking forward to the big and exciting news. You know what would be really exciting???

A MOVIE!

I don't think we're there yet - but who knows?

 

[AquaFit]

What's needed to make it happen?

 

[Forebearance]

@AquaFit , you could donate to help this movie:
https://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine

 

[Empty]

@AquaFit , you could donate to help this movie:
https://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine

Isnt that movie finished now and called unrest?

 

[Forebearance]

Isnt that movie finished now and called unrest?

Thanks for being more up to date on things than I am, Empty!
I'm kind of puzzled that Cort didn't know about it, though.

 

[Empty]

Thanks for being more up to date on things than I am, Empty!
I'm kind of puzzled that Cort didn't know about it, though.

He does There have been a couple of threads on it:


http://www.healthrising.org/forums/...-is-now-unrest-your-thoughts.5145/#post-26590

 

[Cort]

He does There have been a couple of threads on it:


http://www.healthrising.org/forums/...-is-now-unrest-your-thoughts.5145/#post-26590

Thanks Empty - let us know what you think about the new name Forbearance.

I'm sure that Unrest - which will start at Sundance and go to other festivals - could use some $. The better promoted it is the better it is for us.

 

[Forebearance]

Oh, I love the new name! I can't wait to see the movie.

 

[Lissa]

OK - bumping this thread. Read "Shadowlands", and immediately felt it would be a valuable resource... a palatable way to pass along the story line and get people to understand what mold toxicity and its relationship to ME/CFS is all about.

Most importantly, for my husband and I, it's coming from a source outside of our own personal "Ground Zero" of toxic mold poisoning. We've told our own story over and over, but it often takes multiple exposures to such "far fetched" sounding information, before people really start to pay attention.

We purchased several copies to give to friends and family, as well as our Lt Governor and the President of VPR. We feel the message needs to get out there to help people, and we are thankful that Julie has lent her voice to what hopefully will become the tipping point in this battle.

That said - I would encourage others to read the book, and if you can afford it, pick up multiple copies as well. I'm hoping that others will pass it along after each reading. And if it's not there already, donate a copy to your local library for everyone!

 

[Merida]

@Lissa
You are certainly making me look twice at this mold issue. You must have gotten significant improvement after addressing this?

 

[Empty]

Is this the same story which says that even a peanut amount of hidden mold causes ME?

I do think mold has been a factor with me, but I don't believe that...

 

[Merida]

I have just spent the last hour rethinking all of this - the many health issues we have , the many therapies we have tried with minimal success, the many causal factors, the many sensitivities and more. Geez. I re-read some Chiari stuff and checked in with their discussions. And this is were I always end up.
Bet many/ most of us have structural issues at the skull base and/or upper neck. Plus some possible glitches in the tension of the spinal cord due to 'not the best' structure in the pelvis/sacrum where the cord attaches. But I have spent 12 years just not wanting to believe it, despite my small posterior fossa and clearly abnormal CSF flow. Despite my clear abnormal urodynamic studies ( lower motor neuron with a small upper motor neuron component. ) All of this explained to me by 2 brilliant neurosurgeons - experts in this.

I am not saying that surgery is the answer. Just saying that we all need the courage to look at these Chiari and tethered cord type issues.

 

[Wayne]

Bet many/ most of us have structural issues at the skull base and/or upper neck.

Hi Merida,

I've long thought the same thing. I ended up going to an Atlas Profilax practitioner who "re-positioned" my atlas. One of the best things I ever did, and it did improve a lot of my symptoms.

It did not however, "cure" me of ME/CFS. If you would want to doing some research on Atlas Profilax, THIS THREAD over on Phoenix Rising would be a good place to start.

Best, Wayne

 

[Merida]

@Wayne
Thank you for this important comment. I first heard of the atlas adjustments at a Fibro conference in 2002. Saw a great NUCCA chiro and could feel symptom changes for the better with every little adjustment. My hips even leveled after adjustment. But, I would often lose the adjustment just by turning my head to leave the parking lot.

Later, a sacro-occipital chiro ( now retired) worked on the rest of the neck and atlas and structure and I got so much better. Started sleeping well!!! But after several years of treatment I plateaued. Sacro- occipital does not have a good technique for pelvis/sacrum adjustment - and for women especially ( with wider, inherently more unstable pelvises ) this is essential. Over the past 10 years I have just gone downhill.

I just did a 3 appointment Atlas Orthogonal evaluation/ treatment. Yes, my atlas was obviously tipped on X-ray. But, the treatments didn't help. Maybe made me worse??? So disappointed.

I think the internal structure of the dura- meningeal system must be very important too. My Sacro-occipital chiro told me that I have a dural structure with a small opening in the center of the brain where the spinal fluid drains downward - he was an expert on cranial rhythms / movement/ CSF flow. He also said that the dura is do strong that you could hang a 1200 pound weight from it ( removed from body). The dura mater is 'the tough mother.' And I bet it can move bones and boss the musculoskeletal system.

Also, there is research by neurosurgical team at Univ. of Alabama - Tubbs, Oakes, Hansasuta - that 3 out of 27 normal cadavers have a filum terminale that is attached off midline in the sacrum. Wow. Right there we have a potential problem of a torque in the whole neural tube.

Thanks for the link! Reading carefully!!!

 

[Wayne]

I think the internal structure of the dura- meningeal system must be very important too.

Hi again Merida,

Well I must say, you're certainly talking my language on this thread!

Atlas Profilax is quite a topic to investigate all on its own, which I think would be good for just about anybody with ME/CFS to explore and consider. There's another modality (Bio-Cranial therapy) that I never did follow up on, but one that it sounds like you may be interested in.

I posted about almost ten years ago on the ProHealth board. I just did a copy of that post, and will paste it below. If nothing else, it provides a great story with a happy ending.
.............................................................................

Originally post on ProHealth in April, 2008

Hi All,

I just started researching Bio Cranial therapy in the past couple of days and am getting a similar feeling about it that I first got with Atlas Profilax (from which I eventually experienced remarkable results). The similarities between these two modalities are that they both address structural issues (in different ways) in the cranial/upper cervical area. The following is the first paragraph of a story about a woman's amazing results with this therapy, written by her husband Mark Ridder.

"My wife has suffered with debilitating Fibromyalgia for 9 LONG YEARS of chronic pain with virtually no relief. Thanks to God’s good grace, she has recently found miraculous relief from debilitating and disabling pain. This link, After 9 Long Years – Wife is Cured of Fibromyalgia Pain (A Husband’s Story) will take you directly to this couple’s remarkable story.

In this story, Mark Kidder describes their excruciating ordeal with doctors and therapies of all sorts over a 9-year period.. A therapy called Bio Cranial therapy finally gave her relief from her pain. She is now apparently back to full health. What’s remarkable is that this therapy only takes a few minutes to perform.

I researched Dr. Stuart Marmorstein's (D.C.) website (this woman's Bio Cranial practitioner) the past couple of days and have been impressed with this man and his approach to wellness. His focus on addressing structural imbalances in the Atlas and cranial areas is very much in line with my own success with Atlas Profilax.

But Bio Cranial therapy addresses imbalances differently by affecting the very tough sheath surrounding the brain and spinal cord called the dura mater. This dura mater can become constricted and cause all kinds of pains. Because of its proximity to the pituitary gland, it can also adversely affect our endocrine system. Dr. Marmostein claims to have completely cleared up his own long standing hypothyroidism from having this therapy done.

Dr. Marmorstein wrote, and posted on his website, a 15-page article entitled “How to Get Better...Really Better...with the Head to Foot Approach”. If you choose not to read the whole article, you may want to consider at least going to page 10 where he discusses the nature and importance of the Dura Mater.

I've long had an interest in the "structural" aspect of ME/CFS and FM. I think for many to most of us structural problems are a contributing factor, for others, it is a big factor, and for some of us, it can be a huge factor. I feel I belong in the latter category, based on my own experience with Atlas Profilax, and various kinds of cranial therapy.

There's much more to this, but I would encourage anybody who has had an interest in Atlas Profilax or other types of gentle upper cervical chiropractic methods, to do some research on this modality. I expect to follow up on this further, and will post more as I learn more.

Best Regards, Wayne​

 

[Lissa]

@Lissa
You are certainly making me look twice at this mold issue. You must have gotten significant improvement after addressing this?

Yes @Merida -- as I quoted on a separate thread, I have seen a significant improvement since getting out of our house. It is a long story and I am working on a piece for Cort. Just haven't had the time with all the goings on as we get back into our home and try to live there again. We were out since February, and in that time, I have nearly tripled my step counts... and my cognitive difficulties have subsided greatly, depending on levels of exposure.

We got back in -- to our completely gutted home -- (inside and out) just a couple weeks ago. The level of work that needs to be done is mind boggling, and insurance doesn't cover a penny. As time permits I will be chipping away at writing things up. I really think it may help others, despite the apparent urge we all have to cringe and resist.

 

[Lissa]

Is this the same story which says that even a peanut amount of hidden mold causes ME?

I do think mold has been a factor with me, but I don't believe that...

I would not say that Julie's story is attempting to define all cases of ME/CFS to be mold. And I would also concur with that -- it may or may not be a factor. Personally, I think it depends on individual genetics, exposure, and perhaps even combinations of (toxic mold with?) chemicals, viruses, spirochetes, or what-have-you.

I can only speak for having read her memoir, and finding that there were very close parallels to my own story. We had no clue that we had mold hidden within all the exterior walls of our 16 year old house. No sign, no smell, nothing to be seen -- yet it was there and making us sick for the 7 years we have lived here. My husband and I were just slowly, incrementally, getting sicker and sicker with ZERO answers from the allopathic world.

I have had a truly crazy level of improvement since getting out and doing a full remediation of the house. (See my reply to @Merida above...)

All I am saying is -- geez --- this really crazy sounding, "last straw" of an idea has had some real merit for me too. Please don't discount it without a more thorough investigation. Take a chance, read, ask questions of Google, and also of others who have found that it made a difference. If it helps anyone else, even ONE person, then YAY!!!!! It was worth posting and getting shot down by naysayers.

 

[Empty]

Its disconcerting that there could be mold like that causing major problems.
Hope moving back in goes well after all your hard work... At least it wasnt't 47 years!