Beckie Butcher's Blog: beckiesworld.com

Hello, my dear friends.

While it has been my pleasure to share my journey with CFS with you and reach out and help and encourage you, it is with a heavy heart I bid you good bye. I am exhausted. I have been doing this for two and a half years, and it is time to stop. There is nothing left inside of me to share with you. My life is beginning to change and it is time for me to move on to other things. I will miss you and I bid you all well. I hope I was able to offer some love and hope to you in these past few years.

I love you all!
Lovingly,
Beckie.

Hello, my dear friends near and far!

Well, it’s time for the second part of my educational series concerning the possible causes of Myalgic encephalomyelitis /chronic fatigue syndrome, which includes symptoms such as debilitating fatigue, intolerance to physical stress, and and cognitive impairment. Symptoms get worse after just mild exertion. The exact cause is still unclear, which makes finding cures and/or treatments difficult. What is known is it develops after an infection, which is known as post infectious ME/CFS or PI-CFS.

A team of researchers led by NIHS'(National Institutes of Health) Dr. Avindra Nath ran an in depth study of 17 people with PI ME/CFS and 21 healthy controls. The objective was to uncover features which might be behind PI ME/CFS.

The participants with PI ME/CFS had higher heart rates during the day and a smaller drop in their nighttime heart rate than their healthy counterparts. This suggests the autonomic nervous system, which controls unconscious bodily functions is disrupted. In addition, heart and lung function were also less able to respond to exercise.

In another study, participants were given the choice of performing either an easy task for a low reward or a hard task for a higher reward. Those with PI ME/CFS were less likely to choose the hard task than the healthy volunteers, indicating there was less ability to exert very much physical stress. Brain scans during one task showed PI-ME/CFS patients had lower activity in a region of the brain called the tempo-parietal junction which plays a large role in cognitive and motor functions, suggesting the fatigue might be caused by a dysfunction in how the brain decides how to exert effort.

Cerebrospinal fluid was also analyzed. It was discovered PI MI/CFS patients had reduced levels of chemicals called catechols which aid in regulating the nervous system. The levels of catechol correlated with effort preference and motor function in people with PI ME/CFS, but not in their healthy counterparts. This suggests a change in catechol signaling in the brains of PI-ME/CFS being a cause of their changed effort.

Immune function was examined as well. They found differences in B cells, which make antibodies to help fight pathogens. People with PI ME/CFS had more naive B cells, which can be activated by any foreign substance. Naive B cells or “virgin” B cells are immune cells which have never fought an infection. There were, however, fewer switched memory B cells which, unlike naive or virgin cells, have responded to a specific pathogen before and is able to remember it. Interestingly enough, B cell dysfunction was more prominent in women than in men. These findings suggests the immune system continues to be activated even in the absence of infection.

Taken together,the results suggest that PI ME/CFS may be caused by immune system dysfunction which is triggered by infections. This may lead to chemical changes in the central nervous system which affect certain brain functions to cause symptoms in ME/CFS.

Men and women were quite diverse in their data, noted Dr. Nath, which is indicative ME/CFS is not a one size fits all disease. Considering male and female differences in ME/CFS, the results may lead to new venues of research which could provide insight into other infection associated chronic diseases, he also said. These findings also suggest ways in which PI ME/CFS might be treated, either by further studying the immune system and/or specific circuits in the brain.

Wow! Perhaps in the next five years or so there will at least be a treatment if not a cure! Wouldn’t it be wonderful to have our lives back and at least be semi self-sufficient? I look forward to it!

Well, I will be back next week with part three. I am so sorry about the delay this week, but the weather has been terribly unstable, and, once again, I was down for several days.

As always, I love you all, and I will, “talk” to you soon!
Beckie.

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What’s your favorite month of the year? Why?

May, because it really begins to warm up and summer’s coming!

Good day, friends! Today, I begin the presentation of the latest research on Chronic Fatigue Syndrome. In this part of the series, I will present how an overabundance of a specific protein interferes with energy production. Let me begin by reintroducing CFS. Let’s jump in, shall we?

More than 2 million people suffer from Chronic Fatigue Syndrome nationwide. Many people present with symptoms after a viral infection, although the causes of CFS are still not clearly understood, making diagnosis and finding treatments difficult. However, one discovery is an overabundance of a protein called WASF3.

A team of doctors led by Drs. Paul Hwang, Avindra Nath, and Brain Walitt from the National Institutes of Health or NIH, studied a woman who took days to recover from physical exertion as well as some of her family members at the NIH Clinic Center. Tests performed during exercise revealed a very slow recovery in energy production with in the cell. Muscle cells were taken from her and examined in the lab, which showed oxygen usage was reduced in the mitochondria, which is where energy molecules are produced in the cells. Upon further studies, a protein called WASF3 was discovered. WASF3, it was discovered, interferes with muscle cell function at high levels. High levels of WASF3 interfered with production of mitochondrial proteins into molecular complexes supporting normal energy. WASF3 in turn, was boosted in response to cellular stress, disrupting the cells’ energy production. The blocking of WASF3 allowed the mitochondria to produce energy at normal levels.

The team then compared muscle tissue samples taken from 14 volunteers with ME/CFS to samples from ten volunteers who did not have CFS. There were significantly higher levels of WASF3 in most volunteers with CFS.

The increase in WASF3 seemed to be linked to impairment of a signaling pathway in the cells called the ER(Endoplasmic Reticulum)stress pathway. The endoplasmic reticulum is a structure inside the cell of which the main function is to produce proteins and lipids and transport them throughout the cell. ER stress is defined as the accumulation of proteins in the Endoplasmic Reticulum, causing disease progression in such diseases as metabolic diseases, neurodegradation(destruction of cells in the brain and spinal cord) rheumatic diseases, as well as cancer. When the team of doctors treated the muscle cells with a substance known to increase ER stress, there was an increase in WASF3.

The good(or bad) news is this; mitochondrial dysfunction has been found in other conditions of which fatigue is a symptom, including Long Covid. Of course, more studies are necessary before researchers know whether or not targeting ER stress would be a feasable approach for treatment of these other conditions.

Based on all of this information, it looks like we are on our way to some kind of treatment. Yes, there is still much to be done, but we will get there one day. Five years ago we weren’t nearly as far as we are today.

Tune in next week to see what is next in the journey to finding a treatment for ME/CFS!

Have a great week!

Beckie.

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What is good about having a pet?

Companionship and unconditional love.

Hello, dear friends, near and far!

Well, here we are, in a new month with new beginnings. It is the beginning of the Holiday Season, filled with joy and hope. It is the anticipation of a clean slate and a fresh start. Thanksgiving is three short weeks away, and I have been reflecting on all I have to be grateful for in spite of my intense challenges earlier this year, when I felt there wasn’t any hope. Of course, this didn’t help the CFS at all. I was very sick for a very long time. Once again, the pain, exhaustion, and anguish was so horrific, I found myself wondering what the point of me being here was. I was desperate for answers. I just couldn’t take it anymore. Just when things couldn’t get any worse, something wonderful happened.

This past year, I have made many new and wonderful friends through a contact of mine who is active in the community. Believe it or not, I met them through a local radio show called The First Shift Show on WRMN 1410. These new friends have offered me so much love and support and have given me guidance when I have needed it. They have encouraged me to reach out to them if I needed anything, even if it was just a conversation. I was so sure God had deserted me, since everything which COULD go wrong, DID go wrong. It was extremely stressful, and I saw no end in sight. However, once again, He didn’t let anything bad happen. He brought these wonderful people into my life when I least expected it, and in a most unique way.

I began to relax, and I was able to clear my head. Shortly after, the CFS calmed down as well.

I should have known; when will I learn God NEVER gives up on us? He gives us EXACTLY what we need, EXACTLY when we need it. He gives us people we need. I never expected to find friends this way, but it happened.

Hmmm….apparently, there’s something to listing to local radio shows. I strongly encourage it. It turned out very well for me, and it could for you, too. God does work in mysterious ways, so the best thing you can do is pay attention to where He is leading you.

So, until the end of the year and beyond, I am just going to relax and bask in the knowledge I am loved, and not in shortage of people who care.

So, my friends, never give up! Something wonderful just might be right around the corner for you. Just listen; turn off the electronics and listen for His soft, easy voice. That’s the best thing you can do besides letting people He brings into your life care for you. There’s no shame in accepting help. Remember, you have to take care of yourself, and those who love you want you to do that, too. That’s why they are in our lives. Let them be a part of it.

Have a wonderful week!

Beckie.

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Hello, and happy Halloween to those of you who celebrate!
Well, I had a pretty great week all things considering. I am back on the right track with the right dose of iron therapy, and I am beginning to feel better.

This past Sunday, I went to a farewell party for a friend who was part of a local radio show called the First Shift Show on our local radio station. It was a great time with light snacks, drinks, pizza, and gumbo, which was thrown by a very gracious host. There was live music there as well. I even did a few minutes of slow and easy dancing, and I must say, it felt pretty good after not doing it for so long. Before I came down with CFS, I was always one of the first girls on the floor at a wedding, attempting to drag everybody else out there to join us. Oh, how I have missed that! I couldn’t dance much of course, but the little bit I did landed me in bed the next day. I knew it would. However, as I told one of the other guests, too bad. It’s been way too long since I have enjoyed myself that much. So what if I paid the price and so what if it was from doing a little dancing? Either way, no matter what I do, the same thing happens to me, so I might as well have gone for it. I’m not sorry. I would rather have the fond memory than have been at home feeling sorry for myself and wishing I would have tried to go but didn’t. Sure, I’m suffering, but I would be anyway. I made the best of it instead.

It’s like I have said before, you have to enjoy your life when you can. It isn’t possible for us to do that every day, and
curling up in a little ball in bed or on the couch is not always the answer. Being with nice people can be the best medicine.

In addition to working on an educational presentation again in the coming weeks, I have decided to change the day of this blog to Tuesday. I have been doing some research on this, and apparently, people are most likely to read them on Tuesdays at around 9:00 A.M. and around noon.

Well, that’s about all that is on my little brain this week. Have a wonderful day, and I will be back on Tuesday! Take care, everybody.

Love & Hugs,
Beckie

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I hope you have all been well. I haven’t been. I discovered about a week ago I am a little low on iron. It isn’t anything serious, it just needs to be addressed and corrected. When I was writing my last blog post, I was so weak and dizzy I almost fell off my chair. I never felt quite like that before with a CFS/ME flare up.

I chalked the way I was feeling up to the time of year when I flare up the most, however, I could never really shake the feeling something was wrong. I kept dismissing the fact something else may have been going on with me. Then, when I was at my monthly chiropractor appointment, it popped into my head to ask them to draw blood work on me since it was the time of year for it and I was right there. So, they got my right into their lab. Boy, am I glad I did. This is why I missed last week. I am on top of it with iron supplements every other day. Apparently, studies have shown iron is better absorbed if it is taken on alternate days.

Fatigue from iron deficiency on top of Chronic Fatigue Syndrome; lucky me. Oh well, I haven’t been focusing on the CFS quite as much. Maybe that’s a good thing.

I will be working on another informational series about the latest scientific findings on the cause of CFS. I have been wanting to do this for a while now, however, a very high stress year has been getting in the way. There are some interesting correlations between patients’ heart rates taken during waking hours as well as sleeping hours among other things, which will aid in finding a cure or a treatment for this dreadful disease. This is interesting since I get heart palpitations and a rapid heartbeat at times, and it seems to coincide with my flare ups. I am researching it now as my iron deficient body allows.

Well, that’s all that’s on my little mind this week. Take care, and I will write again soon!

Hugs,
Beckie

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Hi, everybody!
Well, another week has gone by, and here I am. It has been another awful week due to the weather here in the mid western United States.
I was at my chiropractors’ office on Tuesday having some blood drawn, and the nurse practitioner and I were talking about CFS/FM, which are neuroimmune diseases. I mentioned how the change of seasons from Summer to Fall is really a hard time of the year, even worse than the deep freezes of Winter. Sure, it’s cold, but at least the weather is stable and not so up and down. She told me how October is the hardest month of the year, because that’s when things really change. It’s the month in which things are the most unstable in the atmosphere.

I was pondering this as I was lying on the couch this morning in excruciating pain and close to tears. I never really knew the mechanism of why the weather affects our immune system, so I did some digging. According to an article from Pierpont Healthcare, it’s because the change shocks the immune system, and it has to adjust to it. Makes perfect sense to me. I wondered if it wasn’t something like that. Perhaps it even weakens a bit.

You know, another thing about how I suffer this time of year is I am alone. Both my parents are dead, I have no family support, and, although I am a strong and independent woman, I have nobody here to calm my fears or give me a hug or let me know everything is going to be ok. Even strong people need a broad shoulder to lean on and words of encouragement; I don’t have that. I have written about how I have many friends in my community, and that’s wonderful, but they have lives and obligations of their own and are not always available; I don’t expect them to be. It’s just part of the illness.

While I was listening to the local radio station this morning, WRMN 1410(hi guys) it was announced there was going to be a guest on at 8:35 from an organization who offers grief counseling. This got me thinking about how much of this was emotional as well as physical. I still miss my mother terribly, and she was one who was always around to give me the encouragement I needed during my worst days.

So I reached out to them. I filled out an online form, and am awaiting a phone call. This has been in the back of my mind for some time now. Perhaps this is the answer. Stress and emotions have a huge impact of the body, and since there were so many other things I had to take care of after her death, I don’t know if I really had the time to work through the terrible grief and mourn her loss. I was never really able to take the time I needed for myself since I had no family support.

I did have a conversation this afternoon with a friend of mine who is a strong Christian and a woman of great faith, and just that twenty minute conversation lightened my burden. It was all about having somebody to talk to and share your burden. She offered words of comfort and encouragement as my mother always had.

This may be something you should consider as well; is there something emotional going on here or is it just the disease? For me, there are days when the disease is so overwhelming I don’t realize some of it is what is going on(or not going on) in my life. Once you take a mental inventory of this, Reach out to somebody for a conversation, weather it be your clergyman of just a trusted friend. I have discovered in my own life people are willing to listen or meet for a cup of coffee for about an hour or so.

Well, that’s all for this week. Take good care, and I will, “talk” to you soon!
Hugs,
Beckie

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Good day, everybody! I hope you are well.
I’m sorry to be a little late, but I have been sick more lately due to the changing weather. Although Fall is a beautiful season, it’s also a miserable season for me and so many others. Then again, I have met CFS patients who have said they feel better in the Fall than in Summer.

On the other hand, the Holidays are coming up, so better days are coming. They are joyful and benevolent days, days filled with love and hope.

This past Summer has been a Summer of learning for me. I have written about this before, but this has been on my mind a lot lately. I had to take a long break from social media to get myself together and focus on my own life, specifically my spiritual and emotional growth. I had to focus on my mental health and on God. I had to take time and smell the roses and get the material world out of my head for a while. Of course, growth always comes at a price. The price is change, and many times, change costs us something. It cost me a couple of long time friends; I knew it would.

I also learned just how much my community loves and cares about me. In the midst of all this, several of my community friends made it clear to me they were not going to let anything bad happen to me. This made me cry. I thought I was all alone in the world, because I never had any help with anything. I was always on my own, and I always felt guilty about reaching out and asking for help with things.

Well, not anymore. A dear family member put his arm around me and told me, it’s ok to ask for help. He told me they loved me, and family sticks together. I didn’t find that to be be true in my immediate family, but I was lucky to find that in my extended family, who I now consider my true family. There is a difference between family and relatives. You share DNA with your relatives, but you share love and comradery with your family. In my case, my family includes my community friends as well. They may not be blood, but they sure are family.

So, after a less than happy June, July and August, September, October is turning out to be a much happier time. It is true, the best lessons are the hardest learned. It is also true genuinely good people will reach out to you in time of need and let you know you will be cared for, and you will not be let down by them. I have never experienced that in life before now. It was truly touching. I’ll never forget it.

Well, that’s about it for now. Have a wonderful week, everybody!
Beckie

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https://www.amazon.com/My-Battle-Chronic-Fatigue-Syndrome/dp/1469773783?asin=B0792VVDVB&revisionId=&format=2&depth=1
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#beckiesbattle #beckieoffershope #chronicfatiguesyndrome #wordprompts