Category: Fibromyalgia

Penguins

Serenity For Spoonies #26

This is the next installment of photos I find particularly intriguing and/or relaxing and hope you do, too. If you don’t know what a spoonie is, here’s a short article that explains it.

 

sunrise
Sunrise over a misty lake by Jasper Graetsch.
waterfall
The waterfall almost looks frozen. Photo by Jack Finnigan.

 

Penguins
Penguins! Photo taken by Ian Parker.
sunset

Serenity For Spoonies #25

This is the next installment of photos I find particularly intriguing and/or relaxing and hope you do, too. If you don’t know what a spoonie is, here’s a short article that explains it.

birch forest reflection
A birch forest reflected in a calm lake. Photo credit to Johannes Plenio.

 

seashore
This cold seashore has some intriguing elements. Photo by Joakim Honkasalo.
sunset
Another gorgeous sunset. Photo by Jesse Echevarria.
Tuscan farmhouse

Serenity For Spoonies #24

This is the next installment of photos I find particularly intriguing and/or relaxing. If you don’t know what a spoonie is, here’s a short article that explains it.

 

Tuscan farmhouse
Looks like a Tuscan farmhouse, doesn’t it? Photo credit to Karol Kaczorek.
woods and path
Just on a long walk through the woods… Photo credit to Joshua Fuller.
ocean sunrise
Imagine yourself with a warm beverage watching the sun rise over the ocean. Jonas Jacobsson took this photo.
netflix-logo-print_pms

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?

water in rapids

Serenity For Spoonies #23

This is the next installment of photos I find particularly intriguing and/or relaxing. If you don’t know what a spoonie is, here’s a short article that explains it.

water in rapids
Rushing water boiling through rocks. Photo credit to Landon Arnold.

 

seashore
Is that a monastery at the seashore? Photo credit to Keith Bremner.

water fall
Keeping to the water flow theme of this post, here’s a gorgeous shot by Keanan Brown.

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.