It’s Black Friday – the traditional start of the holiday shopping season. Health Rising usually does a tongue-in-cheek Black Friday blog to remind readers that HR gets a percentage of every Amazon.com purchase made through HR’s Amazon search box (see the right-hand side of the page.)
This year HR is going straight with ideas for books and tools you can get for yourself (if you have ME/CFS/FM) or others (if you’re a caregiver) that could help with your quality of life and health. From HRV trackers to portable saunas to cooking appliances to meal planning apps, more and more tools are being produced that can allow you to track your health or get better sleep or simply do more with less energy.
Check out some books and tool that might be able to help and please offer your own suggestions.
Books and Films
Lighting Up a Hidden World – by Valerie Free
We always bring light to the world during the holidays. There are lights everywhere – on the boulevards, in the malls, on houses, on Christmas trees – we bring light to the darkness during the holiday. So why not bring some light to the darkness of ME/CFS by getting or sending someone Valerie’s Free’s spectacular “Lighting Up a Hidden World” book on ME/CFS.
Valerie intertwines hers and others’ personal stories with ME/CFS with information on the disease’s history, advocacy, science and treatments in a creative way. Years in the making, there’s never been book like this on ME/CFS before.(Full disclosure – some Health Rising articles are in the book :))
Through the Shadowlands – by Julie Rehmeyer
Light, or the absence of it, is a theme in Julie Rehmeyer’s story of her own emergence from darkness in her journey to understand her chronic illness. An award winning statistical journalist, no less – Julie provides the perfect foil for a journey into the sometimes wacky and much maligned world of mold illness.
Funny, provocative and ultimately hopeful, Julie Rehmeyer’s “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand” shines a bright light on an illness (and a pathogen) that has existed for too long in the darkness.
A Beginner’s Guide to ME/CFS
If you’re new to this disease or know someone who is new to the disease or if you just want some good advice check out a “Beginner’s Guide to ME/CFS”. Written by a social worker with ME/CFS, the “Beginner’s Guide” is the antidote to misguided advice from doctors who tell ME/CFS patients their solution is to exercise.
One reviewer reported “I would give anything to have had this advice when I was first ill.”. Another called it the “Most interesting, realistic approach to understanding and coping with CFS & ME of many CFS books I have owned, seen and skimmed.”
This little book could save many from much unneeded distress and further health problems.
Wired To Eat – by Robb Wolf
OK, so maybe a diet book is not the best choice for holidays. On the other hand, maybe you could feel a bit better about indulging knowing that you had a book at the ready that will help you recover and align your diet with your personal physiology.
Wired to Eat: Turn Off Cravings, Rewire Your Appetite for Weight Loss, and Determine the Foods That Work for You is special because it provides a way for you to determine which foods are good and not good specifically for you. Wired to Eat is on my list of to-do’s for the New Year. Check out Remy’s review of “Wired to Eat” here.
The End Of Alzheimer’s – by Dale Bredesen MD.
So what is a book on Alzheimer’s doing on an ME/CFS and FM book list? Actually,
there are lots of reasons. If ME/CFS is a tough nut to crack, then Alzheimer’s is even worse. Hundreds of millions of dollars and hundreds of prospective drugs haven’t moved the needle at all on Alzheimer’s. Bredesen asserts that a functional medicine-type approach not only helps with Alzheimer’s but can prevent it and at times cure it. The screwy thing is that his studies suggest he may be right. If that’s true, then it’s really time to look at a functional medicine approach for ME/CFS and FM.
Bredesen lays out his entire program – a broad anti-inflammatory program – in his book. My guess is is that if works for Alzheimer’s, it will help with the cognitive issues and who knows, maybe more, with ME/CFS and fibromyalgia.
So if you have cognitive problems, are worried about dementia and Alzheimer’s and/or just want to learn how a functional medicine approach might be able to help, check this well-written and at times hilarious book out. For the future (dementia runs in my family) and for the present, I plan to give Bredesen’s approach a try.
Check out a review of one of Bredesen’s studies and learn about his general approach:
The Death of Cancer – by Vincent DeVita, MD.
And now a cancer book???? “The Death of Cancer: After Fifty Years on the Front Lines of Medicine, a Pioneering Oncologist Reveals Why the War on Cancer Is Winnable — and How We Can Get There” is more than a book on cancer. It’s a journey into the dark underbelly of medicine: the prejudices, the misconceptions, the toll that bureaucrats and ignorant doctors have had on patients.
Some of the stories DeVita – former head of the National Cancer Institute – tells are horrifying, but in truth, the Death of Cancer is simply the history of medicine. How bad ideas get so ingrained as to become untouchable. The heroic fights to overcome the prejudices of the medical profession… You know, stuff we’re all familiar with in our own neck of the medical woods.
The Death of Cancer is also a story of hope. Many of the prejudices regarding cancer and cancer treatments are being overcome and DeVita is indeed, hopeful that the Death of Cancer is within our grasp. Still, the book is a warning: if you get cancer – De Vita did and most of us will at some point – nothing can replace having a really good, creative doctor…
Unrest – by Jen Brea
Most of us know Unrest. It’s been reviewed in dozens of media outlets and has made a huge splash for the ME/CFS community. Did you know, though, that Unrest has made it out of theatres and is now available online? That’s right, you can pick it up on Amazon for $14.99 and show it to your family and friends.
If you don’t know the movie, check out the storyline below.
“Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.””
Tools For Better Health
Portable Radiant Infrared Sauna
Infrared saunas use heat and light to relax and detoxify the body, for pain reduction, joint and muscle support, and cardiovascular healing, plus they’re believed to boost the parasympathetic nervous system activity. Given the low heart rate variability readings in FM and ME/CFS, boosting the PNS, or rest and digest system, would be good news indeed.
Infrared saunas are usually very pricey but Radiant’s highly rated BSA6310 PORTABLE INFRARED SAUNA clocks in at only $176 on Amazon. If you want to get your feet wet with infrared saunas, but don’t want to break your bank, the Radiant sauna might be a good start.
A Bed of Nails for Better Sleep
It’s the weirdest idea: lying on hundreds of hard plastic points could help you feel better, even sleep better. Even weirder is the idea that it could help fibromyalgia patients whose bodies are riddled with tender points. One Health Rising Forums member, however, found that they worked like a charm, and a small study featuring healthy people suggested these mats may be able to reduce heart rates during sleep (high in ME/CFS/FM), increase heart rate variability (low in ME/CFS/FM), slow breathing, and possibly improve circulation.
These changes suggest they may be reducing sympathetic nervous system activity (fight and flight) and increasing parasympathetic nervous system activity (rest and digest) – all good things in fibromyalgia and chronic fatigue syndrome (ME/CFS).
These mats look like torture devices but they’re relatively cheap (just $40 on Amazon.com right now) and the Amazon.com reviews (all 2,132 of them) are excellent.
A Bed of Nails for Better Sleep? Acupressure Mats, Fibromyalgia, and Chronic Fatigue Syndrome
A Heavy, Heavy Blanket To Lull You Into a Deep Sleep
Dr. Holtorf states that weighted blankets “have been proven to help individuals achieve more restful sleep.” It’s almost as if they drag you into a deeper sleep. They’re surprisingly expensive ($180) but the Amazon reviews are excellent. One person said:
I brought this blanket as a gift for myself, hoping it would help with tired/fatigued muscles, and sleep. I am not disappointed! The blanket feels wonderful as soon as it drapes over you, and I can feel stress and tension instantly release. This, coupled with guided sleep meditations, has greatly improved my quality of sleep – I am able to stay asleep longer with much less midnight awakenings, and easily able to fall back asleep if I do wake up.
The Instant Pot
The Instant Pot is the latest technological innovation in cooking. A pressure cooker, slow cooker, rice cooker, steamer, and warmer, it can even sauté and make cakes. Its 12 programs allow you at the click of a switch to make soup/broth, stew, cake, eggs, sauté, rice, warm, steam or slow cook. If you want a big nutritious meal fas,t you use a nice pressure cooker feature.
In her Thanksgiving post Jennie Spotila said, “I’m grateful for the Instant Pot that made a scrumptious turkey breast in less than an hour with almost no effort on my part.”
When we’re really fatigued, junk food is a dangerous but oh-so-enticing fallback option. The Instant Pot looks like it may be the easiest way to avoid that. The six or eight quart options can make you real food for days. That suggests that the Instant Pot could be a big plus for the struggling cooks among us. The Amazon reviews are excellent.
The Plan To Eat Meal Planner
The Plan to Eat app takes some of the grunt work out of cooking. It allows you to “add and organize recipes, drag those recipes onto a calendar to plan them. Then the software automatically creates your shopping list based on your planned recipes.” All in all it makes for a less stressful, and less energy hogging cooking experience in the kitchen.
Check out Plan to Eat here. (50% Off Black Friday sale is on…)
Infrared Heating Pad
Maybe you’re not ready for an infrared sauna. How about an infrared heating pad? Dr. Holtorf calls the Theresage Infrared Heating Pad “a great way to get the benefits of an infrared sauna without the expense”. He states these heating pads are “very effective at relaxing the body”.
They’re not cheap ($149) but if they can help you relax and detox at the same time they might be worth it.
Heart Rate Variability Monitor
Measuring your heart rate variability (HRV) is a great way to assess how to pace yourself effectively and what activities or even treatments are causing you benefits or harm.
Low HRV is associated with increased sympathetic (fight/flight) nervous system (SNS) activity, and/or decreased parasympathetic (rest/digest) nervous system (PNS) activity, and is associated with chronic inflammatory disease, cardiovascular disease, stroke, diabetes, irritable bowel syndrome, interstitial cystitis, chronic pain,and ME/CFS and FM.
Karmin’s been explaining the in’s and out’s of HRV testing in a series of blogs for Health Rising. (See “Your Crash in a Graph” and “Surveying the Landscape“. She recommends either the Polar H7 Bluetooth Heart Rate Sensor and Fitness Tracker![[IMG]](https://www.healthrising.org/forums/proxy.php?image=http%3A%2F%2Fir-na.amazon-adsystem.com%2Fe%2Fir%3Ft%3Dpatientrising-20%26l%3Dam2%26o%3D1%26a%3DB007S088F4&hash=7909028945d986f5a25c8c8bf808744f)
or the Wahoo TICKR Heart Rate Monitor for iPhone & Android![[IMG]](https://www.healthrising.org/forums/proxy.php?image=http%3A%2F%2Fir-na.amazon-adsystem.com%2Fe%2Fir%3Ft%3Dpatientrising-20%26l%3Dam2%26o%3D1%26a%3DB00INQVYZ8&hash=fe5c86d53c30f2115f640c2ac21505e7)
.
The Sit Anywhere Chair
The Drive Medical Folding Lightweight Cane with Sling Style Seat (how’s that for an enticing name) might just make your life a whole lot easier. It has for a friend of mine with ME/CFS/POTS who takes it anywhere she might need to take a sit break.
With its hollow aluminum frame, this little folding chair weight clocks in at just 2.5 lbs. It can be used as a seat or a cane or as two-handed way to steady yourself when you’re standing. It holds up to 250 lbs.
Plus it’s only $27.75 on Amazon. If you’re often dead on your feet, this little sling chair is a no- brainer.
Get Your Genes Tested! (And Help Out ME/CFS Research)
The 23andME DNA Test – Health + Ancestry Personal Genetic Service – 75+ (count them!) Online Reports – is on sale through Nov 27th on Amazon.com for 1/2 price ($99).
Take the test and then send your results to Dr. Klimas’s ME/CFS gene study to help understand ME/CFS. The Klimas project at Nova Southeastern University aims to analyze the genetic data of 10,000 ME/CFS patients in order capture genetic issues that increase the risk for getting ME/CFS.
Nothing like this has been attempted before and it’s not an academic exercise. Identifying the genes at work in ME/CFS could lead to treatments that either block or enhance the activity of those genes, or which manipulate the biological pathways that have been disturbed.
Check out a Health Rising blog on the “Great Chronic Fatigue Syndrome Gene Project” or just go right to the source and sign up here.
Apple Watch
The Apple Watch is more than just another elegant device from Apple; it can serve as a fitness tracker (heart rate, heart rate variability, steps, sleep), you can ask it things, get your email, calls, get directions, etc. from it. The Apple Watch may be the most efficient all around wearable ever. I know someone who loves how much information she can get with a flip of her wrist. (Note – one review said you need an iPhone to get full use of the Watch).
Any suggestions for additions to this list?
Support Health Rising anytime by using its Amazon.com search box on the right hand side of the page to buy stuff on Amazon.
Have a happy holidays!
I have CFS and am often but luckily not always bedridden.Some years ago I got an iPad. This has been the answer to “what can I do when I can’t do anything”. Yes, you waste a lot of time playing dumb games but it beats the boredom of just lying in bed if you’re too weak to read a book.
To some extent you can keep “in touch” with the world and friends and family, make a phone call even if you’re feeling too weak to sit up and push the buttons on a regular phone.
You can set it to reduce the blue light in the evening so it won’t make sleep quality even worse. If you’re up to it, you can read books without turning on light and thus waking your spouse and read a bit even if sitting up would take too much effort.
A totally different subject now – would you recommend handheld vagal nerve stimulators?
Thanks for the suggestion Carla. I’m afraid I have no idea about handheld vagus nerve stimulators. In fact, I didn’t even know they existed. I’m glad to hear though that that field is expanding.
My book, ‘A Beginner’s Guide to ME/CFS’, by explaining and encouraging Malcolm Ramsay’s original prescription of complete rest from the outset could determine the course of a newly diagnosed patient’s prognosis, and should be at the top of your list.
The typical ME/CFS patient wears himself out going from doctor to doctor seeking proper diagnosis and (non-existent) cure, thus throwing away their best chance for improvement, perhaps even recovery.
Evolving research, the early doctors, and every patient’s experience indicates that our system can find ways to fight this disease if we are prepared to make all of our energy available for this fight, and this means learning how to do as little as possible else. This is true when we are first ill; it continues to be the case for those who find that, having ‘given up’ on seeking medical help, they finally begin to improve.
http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs/
Patients need my book…put it on your list!
It’s on the list 🙂
Thanks, Cort. I know that purchasers will be positively helped,
Julie Rehmeyer’s Through the Shadowlands has been one of my favorite books this year. Her writing, her story, her descriptions of the history of ME/CFS, and the research she delves into are so intriguing that I had trouble putting it down.
In addition to her surprising discovery of how toxins profoundly affect her – and how she even did her own little randomized test, among many other explorations – she also interweaves a remarkable and complex history from childhood. I appreciated the degree to which she remains open even as she questions everything. She also tells of a fascinating experiment of two sessions with a practitioner in Boulder (Colorado) she’d have never consulted in a million years had she not been on this road we all know so well of having no better options and no answers. She had a startling outcome, however brief.
Julie’s story is a great example of just how far we have to go to make sense of our illnesses, and how much what we each learn through this process can offer those in the trenches and who are doing the research.
Yes, a very brave and affecting account of Julie’s mold illness journey…and very well-written!
PS this is a great list Cort – and I hadn’t realized Unrest was now available to us all. I’ve been looking forward to seeing it.
Compression stockings are an inexpensive and helpful gift! For those of us that are most often in bed it helps your lower legs feel great. I have the ankle to knee stockings…I don’t like my feet enclosed.
Well, you got me investigating heart rate monitors again. I had not known about this improvement to eliminate the wrist display device, the weak point in my view because the batteries do not last, and it meant a TRIP to a jeweler to get the new battery installed, and trips are rare in my life. It was not simple like replacing the battery in the chest strap itself. Now that I have joined the world of smart phones, it looks like I can use that hand held computer/phone to display the heart rate. It is a daily job to keep the smart phone charged up, but I can do that myself, at home.
So, which software is best to simply display the heart rate on the phone’s screen? All the articles, and there are many, on how to use the Polar H7, are aimed at runners, cyclists, users of treadmills, cross trainers, swimmers. And the software is evaluated for them. I think the free app from Pilot will show the heart rate, but I wondered if any software, free or pay a little for it, would keep a history, a record of my heart rate on different days, marking if I am walking up the stairs or lying on the floor bravely trying a small few seconds of exercise. That would save a lot of work of recording it separately as I did in my experiment with heart rate monitors a few years ago.
OK great….I gave information on Facebook about the 23 and me available on Amazon half price at 99.00 only to have someone tell me it says 149.00 Hmmmmm So is there a link to the 99.00 price?
Not cool….
There are two 23 and Me reports. On is “ancestry’ and one gives genetic traits as well. Since you can get your 23 and me genetics run through many third party applications, IF THE TWO REPORTS TEST THE SAME GENES (i do not know if this is true), then the 99 dollar one is sufficient.
Great information I have fibromyalgia copd bursitis and cervical spondlistus plus me
Thank you for listing Unrest, I helped in first crowd funding and another followup. I choose premium of the movie once done with awards and public showings. I am lucky to not have DX of ME/CFS (just FM) her heart and soul went into this. I want everyone to see this including the healthy. Her diligence is amazing and am so honored to have helped get it out there off her ginormous Whiteboard! THX
The Instant pot is my hand so down best survival tool! Fast, easy, healthy meals are hard to do with CFS. I’ve had mine for a couple of years and when it broke it was like cooking with my right hand tied behind my back. FYI: they have GREAT customer service. Mine developed a problem after TWO YEARS of use. I contacted the company for troubleshooting suggestions and even WITHOUT A RECEIPT they said, “ sorry you are having problems, what is your address so can we send you a new one?” And they did!! No questions asked, no strings attached. Didn’t even require me to send them my old one!
Now that’s good customer service. Glad to hear it 🙂
Thanks, Cort, for mentioning “Lighting Up a Hidden World: CFS and ME” for one of the great gifts and resource ideas. I have heard over and over again about the value of this extensive book project, both in the patient and professional realm. It is about the personal, historical, and political journey of ME/CFS. Many of us have been travelling it for decades. It is the most up-to-date version of the facts and the most extensive version of personal stories which illustrate the full aspect of the experience – from severe to recovery. It also tracks many of the advocacy efforts and symptomatic treatment successes and failures, as well as hopes for the future. I wish the best to all of the people walking this unbelievable path, and I hope that our healthy well-being and recovery is near.
Hi Cort,
Is it possible to sponsor HealthRising by buying things on Amazon on one of the European Amazon stores? Ordering from the US is no option with intercontinental shipping fees. I tried it before but didn’t manage to.
Unrest generating hope and fear! It will also premiere on PBS on jan 8, I see— free and a chance to gather people, if you are able.
To me, despite true penury and need for many things, primary bring a good wheelchair— the best gift of all would be for friends and family to invest the time in watching it.
BUT —is anyone else feeling this? —I’m also scared to have people watch.
Here I’ve been aching for them to really understand, in a way I can’t communicate —and UnRest can.
But I fear that those who are already freaked out by my illness will find UnRest too disturbing and be even more reluctant or unable to help me —or be with me —and will flee… disappear entirely.
These are people who are already stymied by my disappearance from my community life and events, my transformation from lively, funny, active mother, daughter, friend, cousin, journalist, gardener, poker player, news junkie, traveler, etc—to Person In Bed.
You know the story: how will the reality UnRest presents hit people Who are: overwhelmed by their own empathy; or by fear/misunderstanding/prejudice/frustration with me for not taking their advice; or simple exhaustion after 4.5 years of this (“get well soon!”); or lives of their own that are just too demanding—andvon tip of this, that it’s just too alienating to deal with the combo of the illness plus the poverty that CFS/ME (preceded by an earlier catastrophic disease my daughter suffered) has plunged us into—especially if they’re leading very comfortable lives themselves.
Or all of the above.
They want to keep thinking, if not outright saying “you’ll get through this,” or that I shouldn’t work on accepting losses—of , my beloved work, of the secure and exciting future I had saved diligently for, of our home of 20 Years, of my 22 year old daughter’s freedom and peace of mind—they want me to be hopeful for the future.
What will this say to them ?
Love to know what you think.
It is hard! But its good to share. Maybe just share without expectations…maybe just share as an act for the disease itself – the more people that know about this the better; that’s how we grow, that’s how we ultimately solve this.
My guess is though, that the people you used to interact with are wonder what the heck happened with you – and this will help them to understand, and who knows, maybe even to act. They will also understand that this is serious; this is not something that people generally get through – it’ll change how they view this thing…
Good luck!
I am feeling just as you. After the film by Ryan last year, afraid my family will be more fearful and sad. I never want my parents to see either film, (they lost one kid to cancer) though I did donate and pushed on fb and my other family members. I want to see Jen’s but it was traumatic seeing Forgotten Plague… I related too well to Whitney, really scared me and my husband. I’m worsening, have same symptoms but not as severe.
So, I’m glad to know I’m not the only one. As for friends, too sick to talk to or see, they just feel helpless and pray (the best thing!) so I don’t want to push them to see another film… like I’m hammering it into them. That said, I am so very , very glad for both Ryan and Jen and Omar, and will likely soon give in and buy Unrest, and leave lots of room for a crash afterward.
Good stuff! I have an IR biomat from healthyline.com. It’s an amazing piezo-electric device that is both a sauna and re-aligns my EMF field. I use it with their magetized blanket. It takes PEM and flare attacks down from weeks to only a few days. I wanted to suggest you change your hotpot link to one that has a ceramic rather than non-stick bowl. I also wanted to suggest an excellent gift that most of us don’t have: A full spectrum water filter. Pureeffects.com has systems that will eliminate all contaminants – flouride, radioactivity, heavy metals, etc., for under $200. Easy-attach system. Even a filter for your shower for under $100. Getting away from these kinds of contaminants takes so much stress off our systems. Thanks for your site!
Thanks for the ideas 🙂
I have written a book, “Treating Fibromyalgia: What You Can Do When Your Doctor Doesn’t Know What Else to Do” that provides lots of information on ways to help with chronic pain, fatigue, insomnia and brain-fog. You can find it on my website http://www.janetlblack.com/bookstore or on Amazon.
Time to look into some of these CFS hacks. Thanks for the article.
🙂