Tag: chronic condition

Australians Find a Cure for ME/CFS!!!!!

Christmas may have come early for the millions of people around the world affected by Myalgic Encephalomyelitis (ME), also erroneously called chronic fatigue syndrome (CFS).

As reported yesterday (it’s Australia and the 23rd) by Sue Dunlevy, National Health Reporter for News Corp Australia, scientists have confirmed ME is real. red box present They not only have a possible blood test for it, but there are already drugs on the market that may work.

A team of scientists at Griffith University, led by immunology professor Sonya Marshall Gradisnik, identified errors in calcium channels in each cell. These channels located on the outer membrane open and close to allow movement of calcium in and out of the cell.  Calcium is used by just about every cell in the body and is an important part of the immune system.

Calcium Channel Dysfunction

According to the study, patients with ME have lower levels of calcium in our cells and our cells do not store calcium as do healthy people. The immunologists believe this is the basis for the many different signs (things you can see and measure) and symptoms )(what you feel) that are a part of having ME.

Calcium signaling is vital to proper functioning of the central nervous system (brain and spinal cord), the pancreas (insulin production), kidneys, gastrointestinal (GI) tract, blood vessels and the heart. Some cardiac patients take medications to help regulate their calcium channels, and these are being examined as a potential treatment.

A test may be developed from micro RNA changes found in the blood.

What do you think? Will this be another XMRV retrovirus that appears promising when reported out of one lab, but cannot be replicated in other labs and finally ends with a whimper?

You may also be interested in these:

Facts about ME/CFS

New research confirms people with ME/CFS are exhausted at the cellular level

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Why my Health Comes First This Christmas–by Vikki Patis

Vikki blogs on The Mighty, a wonderful site where people with chronic conditions can share their experiences. Here is her story about staying well in the holiday season.

 I love Christmas. I’m not religious at all and rather prefer the term “Yule” to Christmas, but I do love the festive season. I love the tradition of bringing the outside in; during autumn, we string up autumnal garlands and fairy lights and bring out little wooden animal ornaments. Our house transitions from summer to winter in stages, until we finally put up the tree. I love the food and the warmth, making plans and spending time with people. However, this time of year is also incredibly busy, which can be difficult when you live with a chronic illness.
Fibromyalgia is, in a nutshell, categorized by chronic pain and fatigue. It has been almost 18 months since I was diagnosed, and the treatment plan has been going well, but hectic periods like this remind me that I have to listen to my body, and make compromises.
From now until the new year, every weekend is booked up with something. Lunch with family, dinner with friends. Even getting my nails or lashes done requires consideration about my schedule, and what I feel I can cope with.
My birthday is a week before Christmas. I don’t usually do much for it since it’s hard to get people together during this period, but this year, some friends are coming up from Cornwall to spend the weekend with us.
I’m not saying I don’t enjoy all of these things, but it can be draining. When I’ve had a full week at work, I collapse on Friday evenings, usually in bed by 8 o’clock. Most weekdays I’m in bed by 9 or 10 at the latest, determined to get a full eight hours sleep, ready for the next day at work.Sleep Computer Key Showing Insomnia Or Sleeping Disorders Online
My medication makes me drowsy. In fact, it can exacerbate some symptoms of fibromyalgia, leaving me with no option but to go to bed. This is another thing I have to consider when planning events – can I take my medication at my usual time, or should I wait until later, to ensure I can still function during the event?
I think a lot of people who don’t live with a chronic illness can find all of this difficult to understand. Everyone gets tired, but chronic fatigue is a whole different story. Some people don’t always give me the benefit of the doubt, preferring to get annoyed and take it personally when I cancel plans. This can put a strain on relationships, and leave me even less inclined to expend my limited energy on spending time with them.
Living with a chronic illness can feel like a vicious circle, and although I can understand why people might get irritated when I cancel plans, what they have to understand is that it isn’t always my choice. My immunity is low, so I get ill easily, and this time of year is the perfect bug-catching season. And if I’m in too much pain or too tired from a full week, I cannot – and will not – force myself to make a lunch date to spare your feelings. My health will always come first.
For this reason, Christmas day is a quiet affair in our house. Nobody comes around, and we don’t go out. It’s just us and our cats, no pressure, just relaxation. We always make an effort to see other people during the festive season, but we spend Christmas day alone, recharging, enjoying our little family and our peaceful home. I learned a long time ago that I have to be firm when it comes to my health, whether that’s physical or mental, and sometimes you have to put yourself first.
For many, holidays like this are full of stress and drama. We force ourselves to be pleasant to family members we don’t like, we get ourselves into debt trying to buy everyone a present, and we try so hard to live up to the expectations of others. We forget about ourselves, what we need, and what makes us happy. I decided a few years ago that my favorite holiday would be spent the way I want to spend it. I love seeing distant friends, getting together around a table and catching up. I enjoy spending time with family, and going out for walks, enjoying the lights and decorations.
This year, we’ve decided that we don’t want presents. We’re saving to buy a house, so close friends and family are welcome to contribute to that, but we’d rather people saved their money and joined us for a drink or a meal, and spend time rather than money. It’s easy for me to buy a bunch of rubbish on Amazon, get them to gift wrap it and ship it straight to them. It takes money, but not effort, and I’m more interested in the latter. “It’s the thought that counts,” is our motto this year. So I think we should all take a moment, whether we live with a chronic illness or not, and appreciate the time people give us during this holiday season because sometimes, it can be the greatest gift they can give.

My blog had a chronic disease, too

Apologies for being offline over the past four days. This blog and I were in computer hell…MUCH worse than any chronic disease, IMHO (in my humble opinion).

As we all know, chronic disease like ME/CFS and fibromyalgia, and conditions like oncological (Western medical) cancer treatment cause what is known as brain fog. I once was a resource for tech things where I worked and even was the on-site systems administrator for the entire network at my last advertising/PR agency.

But with brain fog resulting from the stress of trying to understand tech-speak while constantly aware the site was not working properly, I kept reading the help files and getting more and more confused and frustrated.

Tech support

My blog host site advertises 24/7 tech support. However, I couldn’t raise anyone on Sunday with the chatbot so I was limited to opening a support ticket and waiting for one of the IT guys to email me a link to the page where I originally asked the question.

The HUGE problem–even larger than the relatively simple one I was attempting to solve, occurred when a helpful tech noticed I didn’t have WordPress installed on my computer and asked if I wanted him to install it. Thinking this might be at the root of my original problem, I told him to go ahead–even though I was publishing posts using WordPress. That should have made me stop and question–if I weren’t already brain dead, that is.

Little did I know this would wipe out ALL my earlier work–posts, plugins, widgets, media saved to use later–everything. The hosting site said it would cost me an upgrade to get access to my backup files. I recalled seeing notices that I had backups, though. After playing around with things, I discovered that JetPack, one of the WordPress plugins, was performing backups, too.

The problem was I couldn’t access them. None of my usernames and passwords worked. network computer passwordNow, I’d attempted to connect my blog to their servers through file transfer protocol (FTP) when initially setting things up, but couldn’t get connected because, you guessed it, none of my username and password combinations worked. To add insult to my blog’s injury, JetPack tech support was only available Monday–Friday during business hours.

Netflix to the rescue

Realizing nothing could be done until Monday, I put it all away for dinner and then went to bed where hubby and I watched a couple of episodes of TURN, an excellent Revolutionary War series.

When I woke up Monday I knew it would be a bed day. My brain felt like there was nothing there to think about. Plus, probably from being tense all afternoon Sunday, my muscles were screaming in pain. Although I wanted to get the blog back up and running, there was no way I could do it in my present condition.

Did you know that Netflix has a new program from the UK where couples go house hunting for places in the country? Watching it all Monday afternoon as I lay in bed, I learned a lot about the British island’s geography and saw many absolutely charming cottages with thatched roofs and other unique houses. If you like HGTV and Great Britain, this show is for you! Hubby and I watched more TURN before bedtime.

I got up at 0630 Tuesday to feed Miss Em and the cats. Still felt like homemade shit, so I went back to bed and slept until noon. When I contacted JetPack tech support Tuesday afternoon they quickly responded. Unfortunately, they kept sending me great how-to articles that I couldn’t fathom.

Tuesday is when our local sangha ( a group of Buddhists) meets to meditate and then discuss an assigned reading from a popular dharma book. This meant I only had four hours to work on blog issues and fix supper. I don’t always cook, but I try to make at least one meal a day. I threw together a free-form meatloaf and cut up potatoes and broccoli to boil and steam, respectively. I didn’t make any headway on the blog issues, though.

Eureka!

The total break from my computer nightmare was just what I needed. When I sat down this morning (Wednesday) and re-read the help articles from Tuesday, a lightbulb went off in my no longer completely fogged-in brain.

I realized what I was doing wrong. Yup. Another forehead smack, with “DUH”. The key to my problem was so simple. I’d read without it registering in my consciousness, if you know what I mean.

Once I had the FTP problem solved I connected to the backup. It took less than a minute to get the blog back to where it was with everything intact. WHEW!

Moving forward

When first considering a blog, you will read things like, “Install X and your blog will be up and running in 15 minutes!” First mistake. Yes, the blog will be live with one of your posts, but none of the backroom, unseen side, of the blog will be ready. I naively thought WordPress had evolved to be easier than when it first launched a decade ago. To give the folks at Automattic (WP parent company) their due, many tasks are easier. However, most of the easy-peasy wizards that do it all for you come with a hefty price tag.

I’m doing this blog as inexpensively as possible until, hopefully, www.aswellasicanbe.com builds readership and maybe earns a few dollars to supplement Social Security disability. My goal is to share the things I use to remain as well as I can be with a chronic illness, a chronic disease and chronic conditions.

But in the short run, I need to spend quality time reading about SEO optimization, email lists, traffic-generators and a host of things I probably am not even aware of at this stage in my blogging career. This means I will likely be posting more blogs from other writers and posting on an irregular, but frequent, basis as I develop new content.

What would you like to read here? Any topics you’d like researched? (I am very good at translating medicalese to normal language.)

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Facts about ME/CFS

This is the best introduction and summary to this devastating disease I’ve seen recently. Many thanks to Solve Me/CFS Initiative for their reblog permission. (No sense reinventing the wheel, folks.)

What Is ME/CFS?

Myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life.

Who Gets ME/CFS?

Approximately 1 – 2.4 million people in the United States have ME/CFS, and the condition affects millions more worldwide. Although research has shown that ME/CFS is about two to four times more likely to occur in women than men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.

What Are the Symptoms of ME/CFS?

If you think you may have ME/CFS, take our quick online quiz.

ME/CFS symptoms, which can often be made worse by standing upright, include

  • Extreme exhaustion
  • Non-restorative sleep
  • Brain fog/cognitive impairment
  • Joint pain
  • Inflamed lymph nodes
  • Persistent sore throat
  • Severe headache
  • Neurological abnormalities
  • Complete organ system shutdown
  • Sensitivity to light, sound, odors, chemicals, foods, and medications
  • Irritability, depression, and mood swings

Because these symptoms are shared with many other illnesses—and because many of these conditions lack a diagnostic test or biomarker—unraveling which illnesses are present can be difficult. Some patients actually receive diagnoses for multiple conditions. Common conditions that occur along with ME/CFS include the following:

  • Fibromyalgia
  • Orthostatic intolerance
  • Irritable bowel syndrome
  • Interstitial cystitis
  • Temporomandibular joint disorder
  • Chronic pelvic pain
  • Multiple chemical sensitivity disorder

How Is ME/CFS Diagnosed?

Studies show that fewer than 20 percent of ME/CFS patients in the United States have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is still not one diagnostic test or biomarker that’s conclusive. The process requires tests to rule out other conditions that may present similar symptoms before a diagnosis of ME/CFS can be established. It can take months.

Diagnosis can also be complicated by the fact that symptoms and severity of ME/CFS vary considerably from person to person. Seek care first from the healthcare provider who knows you best and will work with you to rule out other possible causes of symptoms and identify other conditions.

How Is ME/CFS Treated?

Since no cause or cure for ME/CFS has been identified, treatment is directed at relieving symptoms. Although there’s no single treatment that fixes the illness at its core, there are treatments that can improve symptoms, increase function, and allow people with ME/CFS to engage in activities of daily living.

Sleep problems, pain, heart rate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms that can potentially be relieved by treatment.

Alternative therapies are also often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management.

If you think you may have ME/CFS, take our quick online quiz.

What Is It Like Living with ME/CFS?

The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are disabled by the illness and there’s often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for family members, friends and the public to understand the challenges of the condition.

More severe ME/CFS patients have been found to be more functionally impaired than those with other disabling illnesses such as type 2 diabetes, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease. These same patients have the lowest median quality of life scores of any disease tested, including lung cancer, rheumatoid arthritis, and brain stroke.

Why Has ME/CFS Progress Been So Slow?

The National Institutes of Health (NIH) publishes a list annually showing its spending on various diseases. In 2015, the ME/CFS research budget, Spending_Graphic_Federal-300x183ranked in order by research dollars, was 249 out of 265 diseases funded—almost at the very bottom. In actual dollars, government spending on ME/CFS is less than is spent on hay fever.

To really make headway in a timely manner toward making ME/CFS understood, diagnosable, and treatable, we need more government funding.

Sugar is soooo bad for you and so is the sugar industry

A couple of days ago there was a paper published online in PLOS Biology that outlined how the Sugar Research Foundation (SRF) doubled down on misleading consumers by stopping a 1970 study that withheld information the microbiome may be an important factor in sugar-caused high triglyceride levels and that sucrose (sugar) consumption, compared to starch (like potatoes, bread, etc.), might be associated with bladder cancer!

It seems Big Sugar underwrote research at the University of Birmingham (England) to study rat diets, gut microbiota, and blood lipids (triglycerides) in the late 60s. Called Project 259, the rat research inconveniently found that sugar raised triglyceride levels and that it could be a human carcinogen.

This was at the same time that another suspected carcinogen, cyclamate, was being taken out of diet drinks and foods. Sugar didn’t want to be branded as aglucometer & sugar bowl cancer-causer–even though 2014 research found it feeds cancer cells preferentially–so the sugar industry stopped Project 259 before it was completed. More recent research shows that high insulin levels and growth factors caused by sugar ingestion influence cancer cell growth the most, as well as increasing the risk of other chronic diseases.

Earlier, some of the same researchers published a paper in the Journal of the American Medical Association describing how the sugar industry secretly funded a 1967 review in the New England Journal of Medicine that failed to mention how a rat study involving sugar showed increased cardiovascular disease and lipid (fat) levels in the blood and instead put the blame on dietary fats and cholesterol, leading to the whole fat scare and atrocities like SnackWells(R) that were low-fat, but full of sugar.

The article was very interesting to me, possibly because before I went back to school to be a nurse and then nurse practitioner, I worked in public relations for almost 20 years and was a member of the Counselors Academy of the Public Relations Society of America. I think it would be interesting to anyone who likes to read history, though. It certainly does not read like a typical medical research study.

Study adds to a wide body of literature documenting industry manipulation of science

Obviously, fake news wasn’t invented in the last presidential campaign. The sugar industry was in it up to their eyeballs way back when the Green Bay Packers were playing in the first SuperBowl and the Israelis and Palestinians fought the six-day long Yom Kippur War. But they weren’t the only ones.

Industries wanting influence over state and federal regulations have a history of funding research resulting in industry-favorable interpretations of controversial evidence related to health effects of smoking, therapeutic effects of pharmaceutical drugs, the relationship between sugar-sweetened beverage consumption and weight gain or obesity, and the causes of climate change (Oreskes N, Conway EM. Merchants of doubt. New York: Bloomsbury Press; 2010), among other issues.

 

And let’s not forget about one of the largest influencers of the USDA, FDA and Congress: Monsanto and its hit herbicide, RoundUp(R), also called glyphosate. I’ll get back to this in a later blog. There’s just too much of a horror story with them to mix this up with sugar’s withholding and also manipulating unfavorable data. The deliberate, profit-lead poisoning of America’s food supply by both the raw material manufacturers (agri-business) and consumer product manufacturers (General Foods, Kraft) really frosts me. Unfortunately, duplicity and data destruction goes on in the medical industry, too. And much of all this fakery and selective data selection is the brainchildren of public relations execs like I used to be.

I’ll get into all that later.

Promise.

Stay tuned!

 

 

 

Differences in chronic illness between older and younger people

Although ME/CFS was not listed as one of the chronic conditions* reported in a recent study of the differences in how older and younger people live with multiple chronic conditions (MCC, >2 co-occurring chronic conditions), there still were interesting findings. The study was performed by Mary L. Adams, MS, MPH and published in Preventing Chronic Disease, a CDC publication, and republished on Medscape.com, a site for health care professonals.

The study was robust, with over 200,000 records examined. Naturally, there were differences arising from life lessons learned and also from lifestyle choices, like smoking tobacco and obesity. Typically, MCCs increase with age, resulting in increasing Medicare costs. The study measured disability status, quality of life measures, chronic conditions, risk factors, and access to health care.

Surprisingly, people younger than 65 represented the majority (>60%) with MCCs. Among adults with two MCCs there were significant differences by age group in 18 measures, indicating that adults younger than 65 were worse off than adults aged 65 or older. Results were similar whether diabetes, depression, hypertension, high cholesterol (which could also be risk factors) were included.

Most uninsured adults are younger than 65 years, and younger adults with MCCs were more likely than older ones to report a cost barrier to their health care in the past year. Younger adults with MCCs were also less likely to report a recent routine check-up than adults aged 65 or older with MCCs. Taking preventive health measures, like seeing a healthcare practitioner or eating real food, is a learned skill and one I hope to teach through this blog.

Annual medical care expenditures for chronic conditions in adults aged 18 to 44, 45 to 64, and 65 or older with MCCs were similar at approximately $9,000 for those with 4 or more chronic conditions and approximately $4,000 for those with 2 or 3. Frankly, this surprised me. MM running-snake toyI probably spend $9,000 in out of pocket costs when I add up just my supplements and the costs associated with my service dog, The Divine Miss Em, like food, toys, and gear (just kidding).

Consistent with common sense, people with 3 or more chronic conditions and those with CVD (cardiovascular disease) or diabetes [OR ME/CFS] were more likely to report poorer quality of life than those with fewer or different chronic conditions. This analysis did not compare age groups and could have been influenced by higher rates of depression in younger people.

Differences in reported quality of life could also result from different contexts, because younger adults are more likely to be employed than older adults. For example, interpretation of activity limitations may depend on age, employment status, or both. However, even when controlling for measures including employment status and depression, these age differences remained for 14 measures representing a range of outcomes. The results may also reflect the direct or indirect impact of other factors such as smoking or obesity that are also higher among younger adults and may affect health and disability status.

An unexpected finding was the high rate of cognitive impairment among younger adults with MCCs. This could result from lower rates of other chronic conditions or factors such as lack of sleep, side effects of medication, or use of illicit drugs and may not be associated with future risk of dementia. Whatever the cause, being cognitively impaired may affect someone’s ability to self-manage other chronic conditions. Younger adults were also more likely than older ones to report risk factors that can increase the chance of developing additional chronic conditions in the future.

Age-related differences in MCCs using hospital discharge data indicated, for example, that among adults 18 to 44 years, depression and substance abuse were most common. This old-young comparison study’s results, which did not collect information on substance abuse, are consistent with the earlier finding by showing that depression was more common among working age adults with or without MCCs. Along with depression, risk factors of obesity and smoking were also higher among younger adults with and without MCCs. Whatever the cause of the differences, results highlight the current impact of MCCs on younger adults as opposed to Boomers. This study also supports the finding that teenagers now are the first generation to be less healthy than their parents.

How do you feel about this? Do you think a younger person with ME/CFS has a harder time than someone over 65?

 

 

 

*MCCs were based on up to 12 chronic conditions (heart disease, stroke, asthma, arthritis, chronic obstructive pulmonary disease, high cholesterol, cognitive impairment, diabetes, depression, chronic kidney disease, cancer other than skin, and hypertension).