Category: Fibromyalgia

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Netflix “Afflicted” Series Deliberately Misrepresents Chronic Illness

The stars of the new Netflix series, Afflicted, are up in arms about how their conditions were misrepresented. The documentary series follows six people living with chronic illnesses.

A Los Angeles-based documentary company, Doc Shop, which works with National Geographic, CNN, Discovery, A&E, AMC, and Travel channel, produced the series.

According to all of the people portrayed in the documentary, the producers promised them a compassionate look at chronic illness. Every participant in the series had to have a diagnosis from a physician and be determined mentally healthy by a behavioral health specialist before filming started.

The participants collectively responded in an article posted on Medium. Individually, others wrote blogs about their experience or posted a live YouTube video.

We were all told that we would be participating in a project that would show our lives and our struggles with illness through a “compassionate lens.” We participated because our diagnoses are misunderstood and stigmatized. We thought that revealing some of the most intimate moments of our lives would lead to greater public understanding. We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.

MediumThe Truth Behind Netflix’s ‘Afflicted’

I stopped watching the series after the first episode because it was so clear that the producers went for sensationalism over realism. They consistently showed the people suffering from severe conditions as mentally ill and having psychosomatic illnesses.

Jamison Hill, a writer with ME, wrote a blog post about his experience.

One such episode was devoted to “Identity,” suggesting that those of us with chronic illnesses spend so much time in poor health we become consumed by the lifestyle and don’t know how to live any other way, which is a completely asinine point to make. It’s unfair to categorize people like this because they “become” their illness. If giving all of your surplus energy to try to make yourself better is “becoming” an illness, then sure we “become” it, but if we’re talking about finding some sort of clandestine enjoyment or comfort in living as a sick person because we don’t know how to live any other way, well, that’s one of the most idiotic things I’ve ever heard; that’s not us.

https://jamisonwrites.com/2018/08/20/netflix-and-hill-the-true-story-behind-afflicted/

Jake Sidwell, who has chronic Lyme disease, posted an hour-long YouTube video about the making of the show and how unfortunate the experience has been. In it, he discusses questions posed by people who saw the documentary.

Scientists with deep knowledge of the research literature — including several from the Open Medicine Foundation’s “Community Symposium on the Molecular Basis of ME/CFS” at Stanford, which the film crew did shoot — were either not interviewed or their interviews ended up on the cutting room floor. Instead, Afflicted frequently relies heavily on the skeptical voices of “experts” who have no relevant professional or academic expertise in our diseases.

MediumThe Truth Behind Netflix’s ‘Afflicted’

“Acknowledging” skepticism doesn’t make people take us more seriously, especially when the evidence of their biological basis – both my abnormal lab results and the broader research – is purposefully excluded. There’s a big difference between acknowledging the skeptical perspective and, say, devoting three entire hour-long episodes to psychobabble sound bites about it, which is precisely what the producers did.

https://jamisonwrites.com/2018/08/20/netflix-and-hill-the-true-story-behind-afflicted/

Did you see Afflicted? What was your reaction to it?

Awful truth about ME

The Awful Truth About ME

Myalgic Encephalomyelitis (ME) is a body-wide disease affecting the nervous and immune systems that is characterized by a severe worsening of symptoms after minimal exertion. It affects approximately 2.5 million people in the United States and an estimated 20 million worldwide.

Although research has shown that ME is about two to four times more likely to occur in women than men, the disease strikes people from every age, racial, ethnic, and socioeconomic group.

This awful, devastating, life-crushing and debilitating disease is largely ignored by the medical establishment in the US and other countries and has been for decades. It is trivialized with the name Chronic Fatigue Syndrome (CFS) in the US–as if a good night’s sleep is all that is needed.

young woman looking out a window  holding a cup
More women than men have ME but the disease can strike anyone from school-age to retirement. Most people with ME are in their prime productive years.

Many Doctors Believe ME Is “All In The Imagination”

The dismissive name, chronic fatigue syndrome, contributes to many doctors believing it is a psychosomatic problem (all in your head) or due to deconditioning. To think someone would fake the debilitating symptoms and bone-crushing fatigue of ME is simply beyond what anyone who has the disease can imagine!

Until early in 2018, the Centers for Disease Control (CDC) recommended counseling and an exercise program as the treatment! While counseling may be helpful in coming to terms with the loss of a career, a parental role and a future, exercise with no accommodation for symptoms is the absolute worst thing for someone with ME.

The disease arises after someone–adult or child–does not recover from a flu-like illness, Epstein-Barr Virus, Mononucleosis, any of numerous herpes viruses, Q fever, or other infections. Rarely, ME has been triggered by environmental toxins, getting a vaccination, or surviving a major trauma.

Regardless of the onset, our health is never the same. People with ME experience numerous symptoms and severity which fluctuate day to day, week to week, month to month, year to year and decade to decade.

Although privately funded research studies are finding diagnostic clues called biomarkers, diagnosis is still made based on excluding other diseases and illnesses.

Feeling Like You Have The Flu

young woman looking window cup
People with ME experience body aches, digestive problems, and unrelenting fatigue that is more powerful than anything experienced before the illness.

In most cases, a person reports feeling exhausted most or all of the time, plus having problems concentrating and carrying out daily activities. Most people also report symptoms such as unrefreshing sleep, frequent sore throats, fevers, tender lymph nodes, diffuse pain, muscle weakness, headaches of a new severity, type or pattern and joint pain.

Further, these symptoms are not relieved by a good night’s sleep. The burden this places on people often results in reducing or eliminating previous levels of job-related, educational, social and personal activities. Approximately a quarter of all people with ME are homebound or bedridden. Many use wheelchairs to conserve energy or because they do not have enough energy or stamina to walk more than a few steps.

The disease can last for 30 years or longer. Very few people recover. Sometimes ME is mild enough to allow working part-time. Some people will have a relapse, usually due to overexertion or stress, and they will come back to a new lower baseline of function. Others have a more progressive pattern of slow decline. A small percentage are so sensitized to external stimuli that they must remain in a dark, silent room.

People With ME Have A Lower Quality Of Life

A 2018 study comparing people with ME and those with MS to healthy controls found that the ME group experience a greater impact of their disease on life functioning than those with MS. Additionally, researchers found that people with ME are more likely to be unemployed or only able to work part-time than participants in the other two study groups.

Despite there being twice as many people with ME in the US as have MS (multiple sclerosis), ME receives only about $2/person in research funding while MS gets about $235/person. HIV/AIDS receives $2,500/person in federal medical research funding. (These figures are based on FY2015 data.) MS is used as a comparison because it also is an illness with a primary symptom of fatigue and involves significant nervous system damage.

Clearly, millions of people are suffering needlessly.

These graphs show how little federal research funding is allocated to ME/CFS and how great our disease burden is compared to other illness.

Many thanks to #MEAction.net, Solve ME/CFS, and ME-Pedia.org for the material used on this site.

What is your own experience with ME? Can you add to this post? Let me know below.

The IoT Device Disabled People Are Waiting For Is Here–On Sale!

The Internet of Things (IoT) already is making life easier for tech-savvy folks with disposable income. However, many of the devices you can set from a smartphone aren’t always useful for those of us who are home all day. The IoT just wasn’t practical for many people with chronic illnesses–until now.

Amazon has developed a hands-free, voice-activated device disabled woman in wheelchairthat does just about everything someone who is confined to bed or a wheelchair could want.

The Echo Show is a great idea for someone who is disabled, has a fatiguing illness or is otherwise unable to use their hands. I do not own one of these devices, but I’m seriously considering buying it next Monday when Amazon has its Prime Day sales.

Here’s why I think this would be great for anyone who is disabled. With the Echo Show, in no particular order of importance, you can:

  • Watch Amazon Video content
  • See music lyrics on-screen with Amazon Music. Just ask to play a song, artist or genre, and stream over Wi-Fi
  • Play music simultaneously across Echo devices with multi-room music (Bluetooth not supported)
  • View security cameras. Ask Alexa to show the front door or monitor another room with compatible cameras from Amazon and others
  • See your photos
  • Get weather forecasts
  • Just talk to make to-do and shopping lists
  • Browse and listen to Audible audiobooks
  • Call almost anyone hands-free
  • Make video calls to family and friends with an Echo Spot, Echo Show, or the Alexa App
  • Instantly connect to other Echo devices around your home
  • Stream music on Pandora, Spotify, TuneIn, iHeartRadio, and more
  • Turn on lights or the TV, set thermostats, control Amazon Video on Fire TV, and more with WeMo, Philips Hue, Sony, ecobee, and other compatible smart home devices

Plus, Echo Show will get smarter and be adding new features, plus thousands of skills like Uber, Allrecipes, CNN, and more.

All hands-free—just ask the device.

The Echo Show has powerful, room-filling speakers with Dolby processing for crisp vocals and extended bass response. With eight microphones, beamforming technology, and noise cancellation, Echo Show hears you from any direction—even while music is playing.

FLASH: we don’t have to wait for Prime Day since they are on sale now!

I get a small affiliate fee if you purchase after clicking the ad.

Benepod Makes Short Work Of Tight Muscles And Nerve Pain

BenepodAbout a month ago I received, gratis in exchange for an honest review, a new handheld device called Benepod®. My first reaction was, “How cute!”

The Benepod fits snugly in my hand which is a good thing because there is nothing else to hold it in place. My initial use was on a tight trapezius muscle. That’s the muscle on each side of the neck that people reach behind their head to massage. It should not look like you are Gul Dukat, a Cardassian from Deep Space 9, but I frequently resemble him when I spend time on the computer. Here’s a quick video clip to illustrate. 

As expected, the trapezius loosened as I held the device over it. By the time its charge was spent, there was no more tight trap. In fact, the muscle remained loose for several days after treatment. As I’d had a chronically tight trapezius since severe whiplash caused by an accident in 1995, I was frankly astounded.

Thermal Grill Pain Control

Benepod simultaneously uses hot and cold to fight pain.  By applying contrasting sensations at the same time to a particular point on the body, the Benepod engages natural healing abilities. This occurs is through a theory of pain control known as the thermal grill illusion.

Although identified in 1896 by Swedish physician Torsten Thunberg, researchers didn’t begin to really study it until about 10 years ago.  The thermal grill illusion occurs when nerves just under the skin can’t distinguish between the hot and cold stimuli. Consequently, this triggers a short-term intense–but not painful–sensation.  This nerve overload is proven to effectively mask or even completely eliminate pain for a period of time.  It appears to be an especially effective non-drug treatment for pain remaining after a stroke.

According to the material that came with it, the patented technology used in the Benepod effectively treats neck pain, knee pain, arthritis of the hands, headaches, and various other forms of musculoskeletal pain. The Benepod uses a standard wall charger and USB-C cable.  It is compatible with most USB accessories, such as portable batteries used to charge cell phones and other portable electronics. It arrives with a long cord, making it easy to recharge without having to leave my bed.

With the promotional literature in mind, I used the Benepod to reduce a chronic knot in my left masseter (jaw) muscle, also a symptom remaining after the 1995 accident.  In addition to whiplash, being T-boned also gave me temporomandibular joint dysfunction (TMJ). I wore a mouthpiece for months and was unable to eat solid food for weeks. After more than 20 years, the muscle swelling was still apparent. After just one Benepod treatment almost a month ago now, I still have not had the tightness return.

Real Fibromyalgia Pain Relief

With two solid wins on chronically tight, inflamed muscles, I wondered how it would work for fibro pain. I often get hit in my left arm extending from the deltoid, where the arm meets the shoulder and where nurses give injections, through the triceps, biceps, and forearm flexor muscles and into the wrist and hand. Even when I consider the pain manageable, I still cannot put pressure on that side. It is a frequent cause of painsomnia.

Imagine my pleasant surprise when this fibromyalgia pain was significantly reduced after one treatment to the deltoid–before I took any muscle relaxants or pain medication. However, to achieve a complete cessation of all pain I had to recharge several times and hold the pod on different areas of my arm and wrist. 

After coming in from working in the garden, and a lot of bending and straightening, my lower back was in spasm. I charged up the Benepod and slipped it into my underpants to hold against my spine at around S1. I’d had disc bulging at L4-L6 since moving a bedridden patient by myself more than 20 years ago.

As the device discharged, I no longer felt lower back pain.  Then the soreness in my thoracic (chest area) spine became evident. The upper back didn’t hurt earlier probably because the lower back was more painful. After a short period spent recharging, I slipped the Benepod into the back of my bra along the spine. No more soreness.

I can’t get over how well this works!

This morning I woke with neuropathic pain in my right first through third toes. Instead of getting up and taking my morning dose of gabapentin, I fired up the Benepod.

Benepod in use
Holding the Benepod against my painful toes.

This was a little trickier to hold in place since I didn’t want to remain hunched over with my hand on the toes. I ended up sitting in a modified Lotus yoga posture with my painful toes and Benepod curved inside and held against my left calf.  The pain was significantly reduced after one application.  It disappeared following two applications.

The only downside I could find after more than a month of use was that you have to either hold the Benepod on a painful spot with other hand or a body part or secure it with clothing. For example, I would pull a long sleeve up over my elbow and hold the pod on the underside of the elbow with my cuff. In other areas, I used a scarf, gauze or another long, soft material to bind it in place.

Saringer Life Science Technologies, the maker of the Benepod, produces other devices for the medical marketplace. For example, they have a unit that prevents or treats deep vein thrombosis, peripheral artery disease, and other circulatory issues. Interesting to anyone who had a total knee replacement, the company’s founder was the inventor of the Continuous Passive Motion (CPM) machine that flexed and extended the new knee joint following surgery.

Here’s a link to Salinger’s web page. https://www.saringer.com/.

And for your convenience, here’s one for the Benepod on Amazon. https://amzn.to/2rm5klV. 

Please remember that I receive a small commission if you purchase through this link.

Comments? Questions?

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Learn Home Medicine Today

monday
Just click https://bit.ly/2HIbzuF to go directly to the site!

 

You’re coming, right? To watch the FREE Home Medicine Summit… that just went LIVE to the world at 9 a.m. CT this morning?

That’s right, it just started TODAY!

And this 100% online, 7-day event is going to be running 24/7, until Sunday, May 20th with an incredible lineup of 42+ world-renowned speakers on topics related to:

  • The Big Organic Rip Off: why it’s not as healthy as you think!
  • Making your own probiotics–CHEAP + EASY!
  • 100% NATURAL remedies for stress, anxiety, and depression. (Safe alternatives to prescription medications.)
  • How to save $1000s in funeral costs.
  • How to make your own miraculous CBD “hemp oil” … and use it as medicine, without getting high!
  • Foods that are BETTER than anti-inflammatory drugs!
  • Is Turmeric actually DANGEROUS to consume? What nobody is telling you…
  • Why perimeter shopping at the grocery store isn’t a good strategy any more.
  • The power of saying “no” … and how to do it!

And that’s just the beginning!

You’ll hear from best-selling authors and thought-leaders, like:

Mike Adams, Ronnie Cummins, Sally Fallon, Sayer Ji, Nick Polizzi, Melinda Meyer, Joel Salatin, Eric Zielinski, Howard Garrett, Justin Rhodes, Paul Wheaton…

Just to name a few!

So that’s why I’d like to confirm. You signed up to watch for FREE? Right? 

You’ll still have access to Monday’s speaker presentations, but remember they take down each daily presentation at 8:59 am CST and replace them with new ones. Be sure to check the schedule so you don’t miss your favorites.

 

You can still register here.

 

Hope you can make it! 

Join Me At Marjory’s Home Medicine Summit

Remember my gardening and lifestyle mentor, Marjory Wildcraft? Growing my own organic food was a huge step to take when I was still pretty sick.  But the advice and encouragement I got from her helped get me to where I am today.Marjory at mailbox

That’s why I’m excited to finally be able to tell you. Registration is open and free tickets are available now for her Home Medicine Summit 2018. Piggyback this information on top of all the experts from the Food Revolution. You are well on your way to a healthier life!

I received a sneak preview of this year’s speaker lineup earlier and I can tell you that Marjory has really outdone herself. She’s pulled together an incredible lineup of 42+ experts who promise to show you how to be naturally healthy for pennies on the dollar.

Covering a wide range of topics, this year’s event includes:

  • Why organic is not always as healthy as you think
  • Making your own probiotics cheaply and easily 
  • 100% natural and safe remedies for stress, anxiety, and depression
  • How to save $1000s in funeral costs
  • How to make your own CBD “hemp oil” and use it as medicine, without getting high (or arrested if you are in a nonlegal state)
  • Foods that are better than anti-inflammatory drugs
  • Why perimeter shopping at the grocery store isn’t always a good strategy 
  • The power of saying “no” 

Marjory has once again recruited world-class thought leaders, best-selling authors, and research institutes to participate. These are big names in natural gardening, food, and wellness like Mike Adams, Ronnie Cummins, Sally Fallon, Sayer Ji, Nick Polizzi, Melinda Meyer, Joel Salatin, Eric Zielinski, Howard Garrett, Justin Rhodes, and Paul Wheaton.

But what I love even more is that because Marjory’s connections are so deep and wide in the natural health, permaculture, and sustainable living communities you’re also going to have the chance to meet some unsung heroes. You will meet and learn from people you’ve likely never heard of because they’ve been off in their corner of the world “living it.”

This is a 100% online event, free for you to attend from anywhere with an internet connection. It kicks off Monday, May 14th and will run 24 hours a day for seven full days with two encore days. But please note. Only those people who sign up at the link below will get the schedule + instructions for watching! (This is how they contain the costs of hosting an event like this on a global scale.)

So don’t wait and then kick yourself for missing it! Get your ticket to watch and the presentation schedule right here. And be sure to add this to your calendar ASAP.

I should also mention that when you claim your free ticket Marjory will send you a nice bundle of six gifts to welcome you to the Summit. 

 In exchange for signing up, I receive a percentage of the price for talks if you purchase them for a reference. But purchasing is NOT required. Do what many others do, and watch each presentation when it is live and free. Or if you are having painsomnia, watch it at two in the morning!