Category: ME/CFS

toy pig eating cake

The Effects of Processed Foods on our Mental Health

This post is written by a talented young writer, Patrick Bailey. He writes mainly about mental health and does so to overcome the stigma often associated with mental illness. 


Processed foods do a lot more to us than you think. Not only can they affect our general physical health, but they can affect our mental health, as well. The food that you eat is the fuel that you need to make it through the day and do many different things throughout that day. It is only natural that processed foods that are not wholesome are not going to be good for your mind or body.

Eating well may be associated with the feeling of well-being, which is what many want when they are trying to eat healthier, lose weight and feel better about themselves overall. The importance of having a good nutritional food intake is increasingly important when it comes to how you feel and how well you want to feel.

Eating saturated fats and processed foods have been shown to increase negative emotions, while also increasing fat and depression in some. This then leads to a poorer diet and worse-off physical and mental health in the person.

Some people believe that eating comfort foods brings the feeling of happiness with it. This, however, is untrue. It has been shown that these foods, while rewarding during the time you are eating them, they are actually providing negative effects in the body after you are done eating them. This then causes you to feel worse. Thus, making you want the feeling again. This is how many people find themselves gaining weight through comfort eating.

The Food You Eat

Affects How You Feel

The food that you put into your system is going to affect the outcome of how you feel. This is because 95% of the serotonin that is found in your body is found through the gastrointestinal tract. With thousands upon thousands of neurons found in this tract, they send impulses throughout your body to your brain. This tract works to not only digest your food, but also regulate the emotions that you feel.Unhealthy_snacks_in_cart

In line with these findings, it has also been shown that those that eat a traditional meal plan, such as a Japanese diet or a Mediterranean diet over a Western diet, have over a 30% less chance of having depression.

Depression is the second leading cause of disability, right after heart disease. This means that the diet, and what you put in your mouth, is going to affect how you feel. When the body is not getting enough of the vitamins and minerals that it needs to uplift itself, this is when the negative affects are seen in the body and emotions. The same would happen for someone who is not getting enough sunlight or fresh air on a regular basis. Their body and mind would be affected by this.

It has also been shown that depression is not the only risk that those take in getting when not eating a well-balanced diet. Those that do not have an adequate meal plan or diet are also shown to have a heightened risk of anxiety. This is something that many more physicians are paying attention to, as changing a diet and introducing new fruits and vegetables can completely change the mental illnesses that some individuals are dealing with.

Kids are Seeing the

Results of Poor Diets

Adults are not the only ones that are affected by this. More than 17  million kids throughout the US are affected by some type of mental illness. This number has risen and continues to rise throughout the years, causing further issues. The risk of depression in these kids increases to up to 80% in kids that have a poor diet, as compared to those that eat a nutritionally balanced diet full of vegetables, fruits and the right balance of vitamins and minerals.highly processed breakfast cereals

Another great study that was done showed that even mothers who ate a better diet while pregnant with the children had a better chance of providing the child with less health and emotional problems as they age. The more appropriate the nutritional value for the mother and wholesome it is, the better it will be for the unborn baby in the womb. Studies show that these children that receive adequate nutrition as early as in the womb have a much lesser chance of developing anxiety, depression, or other mental illnesses as they grow.

Providing children with more junk food during the first years of life is linked to poor behavior, more emotional outbursts, and other emotional problems that the children go through.

In a study that was conducted with 120 kids, it was shown that children with poor diets were more likely to show symptoms of ADHD or attention-deficit/hyperactivity disorder. Though this is not something that has been put down on paper indefinitely, it has been shown and thought that diet can play a crucial role in the mental health of those children that are not getting adequately fed or not being fed the right combination of foods in a regular, healthy diet.

What Foods Should You

and Shouldn’t You Eat?

In order to get a well-balanced diet and the best nutrition plan to reduce the chances of having mental illnesses, depression or anxiety then you should know what to remove from the diet and what to include.

Any highly processed foods that are high in sugar or are fried should not be consumed. If they are, they should not be consumed often. Having high amounts of these foods can increase the chances of having depression, anxiety or other mental illnesses.peeling-zuccini

Those that want to reduce the chances of having any of these mental illnesses can increase their vegetable and fruit intake. It is important to stay away from some of the fruit that have high natural sugars in them, as they can cause the body to get too much sugar, such as grapes. Nuts, whole grains, legumes, fish and unsaturated fats are ideal to add to the diet, as these can add additional nutrients and vitamins to the body that the fruits and vegetables are unable to provide.

Another benefit besides a reduced risk of depression, anxiety, and other mental illnesses is that when you eat healthier, you feel better, you look better and you have a better immune system. This healthy food gives your immune system the boost it needs to keep you healthier and more active.

By taking note of how eating makes you feel, you can find out what foods might cause a bad reaction not only in your body but with your mind. You can also find out what foods uplift you and put you in a good mood. The new name for this phenomenon that is sweeping the nation is “nutritional psychiatry.”

Having depressing feelings is not normal. When you are depressed, you are also much more likely to use alcohol or drugs in a recreational way, causing an addiction that can be tough to get rid of. There are many things that can happen when diet is not something that you think about or put much thought into. A healthy diet is important for so many reasons, make sure that you are eating a well-balanced, healthy diet to reduce the chances of having something happen or the cause of a mental health issue that you may develop or already have.

 

Patrick Bailey info

flu still life

What To Know About Flu, Colds & Chronic Illness

Since so many of us with chronic illnesses stay at home most of the week, we aren’t exposed to the upper respiratory germs that people in the workplace run across daily*. Additionally, many chronic illnesses also include an immune system dysfunction.

It can be a shock to find out a family member, friend or caregiver has passed along a bug that hits you hard. Suddenly your nose starts to run, your throat is a bit scratchy and you may even feel overheated. Do you have the dreaded flu or a cold?

Many people think a fever occurs only with flu, but there is a huge overlap between non-flu viruses and those produce by classic influenza. That said, there are some predictable differences between the two contagious illnesses.

Symptom

Influenza

Common Cold

Other Viral

Onset

Quick, An Hour or Less

Several Days of Increasing Symptoms

Can Be Within Hours

Cough

Dry, Nonproductive

Wet, Produces Mucous

Fever

Yes

yes

Body Aches

Like You Were Run Over by a Truck

Slightly to Moderately Increased

Head Congestion

Some

Severe, Often Sinuses Inflamed

Sore Throat

Some

Often With Swollen Neck Glands

GI—Nausea, Diarrhea, Stomach Ache

No

No

Yes

Just about everyone in the medical community, as well as many bloggers, say it’s crucial everyone get a flu vaccination—preferably before the end of October. The flu shot’s effectiveness can vary from about 50% to 90% depending on how well vaccine manufacturers determined which strain of flu would be most active in the 2018-19 Flu Season.

Experts say that even if the vaccine is only 30-40% effective someone with it will have a quicker and easier time getting over the flu. Another reason frequently discussed is that vaccinations save lives. The rationale is that by vaccinating yourself, you’ll be much less likely to acquire and spread it to at-risk groups.

But say you are one of the millions of people with a compromised immune system. What to do? This was the subject of a recent, very long thread on the subject on a Facebook group I frequent for people with ME/CFS.

By the time the thread closed, there was no clear consensus. People spoke about how many months (usually three to four) they took to recover from flu and swore they would never go without a vaccination again. Others said they were down for three to four weeks with immune system activation after receiving a vaccination for flu.

Personally, I use the Mayo Health System. Inexplicably, Mayo still recommends the discredited results of an infamous research study–graded exercise therapy (GET) and cognitive behavioral therapy (CBT) as the primary treatments for chronic fatigue syndrome. Sadly, it does not list myalgic encephalomyelitis as a disease or condition.

I have a Masters in Nursing Science and worked as a Nurse Practitioner in South Carolina, Colorado, and Wisconsin before contracting this damn disease (ME/CFS). I do my own research and, since Mayo still clings to outdated and erroneous recommendations based on the highly flawed PACE Trial in the UK, I make up my own mind as far as my own health issues go.

So, as I have done many times in the past when faced with a decision, I wrote out the pros and cons.

FOR FLU VACCINATION (PRO)

AGAINST FLU VACCINATION (CON)

May help hubby, on O2 for COPD, avoid getting the flu

May trigger extended (2-4 wks) immune system reaction

Maybe bedridden for months if I get the flu

I have not had flu since contracting ME, actually not since I was a young woman

Chronically ill with a disease that began with a coxsackievirus infection

I am seldom ill from community-acquired infections, even when I was not homebound

I am chronically ill with a disease that began with a coxsackievirus infection, some specialists believe a subclinical enterovirus infection is at the root of ME

As Leslie Kernisan, MD MPH wrote in response to a question asking if flu vaccination making autoimmune diseases worse, “The CDC and other experts generally recommend that people with autoimmune diseases get the seasonal flu vaccine. This is because people with autoimmune conditions are at higher risk of having flu complications, and it’s estimated that the overall risk of being harmed by the flu is higher than the small risk of developing an autoimmune exacerbation related to the vaccine.

People with autoimmune conditions should not get the live attenuated flu vaccine. (But that one is not recommended in the US this year, anyway.)

I think there are certainly some doctors who believe it’s risky for people with autoimmune issues to get the flu shot. I was not able to find much scientific evidence regarding the risk, however, so I’m not sure we really know what the risk is.

I would recommend you discuss your questions regarding the likely benefits and risks of flu vaccination with your own doctors. You may want to discuss this question with a rheumatologist, as they may have a better understanding of the guidelines and research evidence on this topic.

Good luck!”

I respect Dr. Kernisan and so if she could find no contradictions for a person with a (presumed) autoimmune disease receiving an annual flu vaccination, I can’t argue with it.

I will be doing a 16-day Buddhist practice for my health starting this weekend. Not wanting a possible reaction to immune system triggering from the vaccine during this time of prayers and meditation, I will not get vaccinated until after the retreat finishes on November 5th.

I’ll let you all know if I have any sort of reaction to the vaccination. But what about you? Have you had a reaction to flu shots? Do you get an annual flu vaccination?

*I’m talking about folks who are deemed disabled by the Social Security Administration. If you are in the process of applying for disability or have just been denied benefits, there is an excellent post on how to appeal a disability denial as well as a host of other valuable information. Check it out on this website howtogeton.wordpress.com/.

round MEAction logo

People With ME Need Your Help To Stop The CDC Mistake

This is an email I received this morning. Please sign the petition. The information you need to make a decision is below.


Sign this #MEAction petition and stop the CDC from making ME treatment guidelines without our input!

View this email in your browser

Take urgent action to stop the CDC from repeating a terrible mistake.

 We need your help.

The US Centers for Disease Control (CDC) is updating its ME treatment guidelines. As part of this work, it is attempting to quietly hire the same independent contractor that previously recommended graded exercise therapy (GET) and cognitive behavioral therapy (CBT) for the treatment of ME. 

We cannot let history repeat itself: Sign the #MEAction petition to stop the CDC from repeating a terrible mistake.

Then SHARE on social media and with friends and loved ones. We must act quickly and respond by Friday, Aug. 31st. That’s this Friday!

We encourage allies around the world to fight this contract by signing the petition, no matter where you live.

SIGN the petition

Or read on to learn moreThe CDC is attempting to quietly hire the Pacific Northwest Evidence-based Practice Center (EPC) for a sole-source contract to help them develop new federal guidelines for ME/CFS treatment.

That may not sound that bad, but there is plenty of reason to be alarmed. This same contractor was hired four years ago to do a similar literature review of the evidence base for ME/CFS treatments by a CDC sister-agency, the Agency for Healthcare Research and Quality (AHRQ). It did not go well.

The EPC’s 2014 report included recommendations for graded exercise therapy (GET) and cognitive behavioral therapy (CBT), and concluded that PACE was a good trial with little bias!

Only through the dogged work of many ME advocates and an #MEAction petition did EPC finally issue a reanalysis TWO YEARS LATER

However, they still refused to publish this 2016 addendum in a peer-reviewed journal, making their conclusions effectively invisible to any future developers of treatment guidelines for METhis is not a contractor whose expertise or quality of work the CDC should trust.

We cannot let history repeat itself. We have to stop this right now. The CDC is trying to rush the EPC contract through with minimum time for us to respond.

We only have until August 31 – THIS Friday – to respond.

Sign the petition to demand that the CDC not issue this contract, put the project on hold, and meet with #MEAction immediately to discuss implementing a transparent and collaborative process for creating future guidelines that engages advocates and community representatives, and includes experienced ME researchers and expert practitioners.

We need you to take this urgent action today. EVERYONE can SIGN and SHARE this petition to the CDC, including those living outside the US.Sign the Petition Now!Let‘s make NOISE the CDC can’t ignore.

In Solidarity,
Ben HsuBorger
Community and Campaigns DirectorCopyright © 2018 #MEAction, All rights reserved.


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?

hand reaching out of water

Look Online For More Disabled Income

Many of my readers like the Serenity For Spoonies series of gorgeous peaceful scenery that I post from time to time. I like finding and posting them, too.

Fortunately, I can schedule these picture posts to appear even when I’m not able to do anything else. Like during the past few weeks when I crashed harder than usual.

Like many of us with ME or other fatiguing illnesses such as MS or heart failure, I’m accustomed to spending a day or even two recovering my energy stores after an exhausting day. But this most recent relapse (I prefer relapse to the official name of post-exertional malaise) kept me in bed or lounging in the recliner longer than I experienced in quite a long time.

woman-lying-in-bed

Fortunately, there are safety nets for people like us. For example, Medicaid can pay for prescriptions and in some states, there are waiver programs that will provide extra support for bathing, dressing, grocery shopping, etc.  Meals on Wheels is another program that will give us at least one meal a day at a reduced rate.

My years in public relations taught me to look for good things even when something appears not so good, so the silver lining to this most recent relapse was that I had a chance to step back and think about this blog.

Although I’m still not settled on a specific way forward, I do want to incorporate some of the things I’m learning about making extra money.

We all know or can imagine how difficult it can be when we have no source of income from a working spouse, parents or something else. Many of us live close to the edge with Social Security Disability as our only income.

However, even though I’m enrolled in a Medicaid community waiver program, I still get tired of counting pennies, shuffling the due dates of bills so I had funds in the bank when they came due, and basically running out of money before my next Social Security check came in.

dollar-sign

Obviously, if the government declares you disabled you cannot work a 40-hour week any longer. For many of us, even part-time work is too strenuous. This leaves working from home as about the only option open to someone who is disabled with a chronic illness.

So I started looking for ways people are making money by working at home. Some are too strenuous and/or impractical for people like me who suffer from brain fog, for example answering customer service calls. Others take too much time for little return, like responding to surveys.

woman-holding-fan-of-money

I kept finding sites that promised thousands of dollars each month–even millions each year–making money online. Many of these programs are basically multi-level marketing in which you set up a website or websites that entice others to sign up for the expensive program in which you enrolled.

So I fell for the marketing and signed up with a young man whose main promotion was to get his followers excited about fancy expensive cars and a digital nomad lifestyle. He frequently posted videos showing him and his young child in various spectacular places around the world. The promise was that you, too, could be doing this.

expensive-car

His way was a hard-driving, hard-selling method of getting you to sign up and then getting others to do the same thing. You made money from the initial signup and then every month your people remained in the program. He offered free training on how to make videos that would go viral and how to write sales copy that would get people to buy things you recommend.

This was just not for me nor was it appropriate for someone who often has to step back for several days and not do any online work. He offered a money back guarantee, so I wrote to say the program was just not for me and I wanted a refund.

However, I did not qualify for a refund in his eyes because I didn’t stay in the program and do everything as he laid it out. I finally had to threaten to go public and say John Smith (not his real name) was stiffing a grandmother before he grudgingly refunded my money.

My next foray into online marketing was through a young woman who promised income and location freedom with blogging. That sounded great since I already had a blog.

Sue Smith (not her real name) had a largish following of women and at the time I was involved she had just moved overseas using her blog as her sole source of income.

There were examples galore on her website of how to develop what is called a personal brand. In other words, this woman used photos and stories of herself in different locales as the subject of blogs about the place she was in, where she ate and the clothes she wore.

Sue (not her name) was involved every day with members of her group and offered tons of positive reinforcement and support. Almost a polar opposite to the first guy.

She succeeded by getting sponsors for these blogs, like a clothing company, a restaurant or a tourism department. Of course, she also promoted getting others to sign up using a referral code that was unique to you.

I learned quite a bit about making pretty websites and posts, but this still was too much work. I also didn’t like the constant self-promotion. Her focus on the personal brand just didn’t fit with my lifestyle.

After all, who wants to see pictures of me lying in bed, on the couch, in the recliner…you get the idea. Who in their right mind wants to follow someone who can’t leave the house more than a couple hours a week and spends the remainder of the time resting?

My next foray got me into the world of selling on Amazon. That is a whole different story that I will tackle in the next post.

What do you think of my experiences?

Have you tried any work at home schemes? (I’m using schemes like the British do and not with any connotations of something risky or underhanded as we Americans often think of a scheme.)

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.