Category: ME/CFS

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.

Northern Lights

Serenity For Spoonies #22

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.

clouds and mountain
Clouds boiling down the mountain. Do you think they will reach the waterfall? Photo credit to Martin Brechtl.
promentory
This shot reminds me of the BBC program Time Team when they went to Wales. Photo credit to Marc Zimmer.
Northern Lights
The Northern Lights are occasionally visible from my home but they’re never extravagant like this shot by Luke Stackpoole.

Please Support ME/CFS Research Fundraising Campaign

A few weeks ago I had a brainstorm. Why not sell Fair Trade coffee through a website with all profits going to fund medical studies and raise awareness? After some research and pushing myself to exhaustion, I bought a domain and built a website. Now I need funding.
With your support, I will have enough to hire a
graphic artist and purchase the initial stock of coffee. I’m looking at being able to ship coffee to donors this fall and have sales going strong during the holidays.

The intro to this Kickstarter campaign says it all. With your help, I can raise funds for research into my disease, ME. Please take a look and do what you can. If it’s not possible for anything monetarily, then share the campaign with your friends and family. ALL PROFITS WILL GO TO RESEARCH AND AWARENESS.

KICKSTARTER.COM
With your help, I will start a private label coffee company, MyCoffee4ME.com, to raise funds & increase awareness for ME/CFS.
rock and sea

Serenity For Spoonies #21

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.

 

golden sun
Is this beautiful golden sun the result of PhotoShop or smog? Photo credit to Nathan Dumlao.

 

rock and sea
An interesting rock formation. What mystical animal do you see? Photo credit to Matt Holland.

 

lakeshore
Are those birds on the left side of this photo taken by Martin Holverda?

 

sun breaking thru clouds

Serenity For Spoonies #20

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.

sunrise
A sunrise as opposed to the usual sunsets. Photo credit to Wes Hicks.

 

sunset
I think the stars were added to this sunset. What about you? Photo credit to Owen Woodhouse.
sun breaking thru clouds
When I was a small child I thought sun breaking through clouds was God looking down on us. Photo credit to Michael Petersen.