charcoal woman's eye CU

Kitchen Spice Stops Cancer Stem Cells

I recently came across a study published in 2014 that found the common kitchen spice, turmeric and its prime constituent curcumin, had a surprisingly effective effect on cancer stem cells (CSCs).

Why this information was not made more public than the medical newsletter Cancer Letters is clear only when I consider that there is no “real” money to be made from a root that has been used as a spice for hundreds of years.

person inside MRI machine

Nixon signed the National Cancer Act in 1971. Since then, over a hundred billion dollars of taxpayer money has been spent on research and drug development in an attempt to eradicate the disease. Trillions more are spent by the cancer patients themselves and through insurance. But after more than four decades of waging full-scale conventional (surgery and chemo) and nuclear (radiotherapy) war against cancer, one in every four Americans will be diagnosed with cancer each year.

I’ve long known about curcumin as an anti-inflammatory and use it daily for my osteoarthritis, as well as for the central nervous system inflammation that is part of myalgic encephalomyelitis, the ME part of ME/CFS. But let’s talk about cancer in this post.

CSCs Are The Mother Of Cancer

Conventional models of cancer (the mutation theory) assume that the majority of the cancer cells within a tumor possess the ability to grow and self-renew to differing degrees. The CSC model proposes that CSCs, actually a minor population of all cancer cells, are the tumor growth engine. CSCs undergo continuous self-renewal and have the ability to change into different types of cancer cells, just like other human stem cells. No other cancer cell type has this capability.

In other words, CSCs are at the top of all cells within the tumor and are the “mother” of the various daughter cells that make it up. Furthermore, most of the cells derived from CSCs are not lethal. Therefore, chemotherapy, radiation, and surgery aimed at removing these “daughter” cells are wasted.  The goal is to eradicate the stem cells, not the relatively harmless cancer cells they create.

In the study, conventional treatment with chemotherapy and radiation (tested by a rodent model with a 2-year experimental window to evaluate treatment efficacy and safety) was unable to identify the CSC-mediated cause of post-treatment tumor recurrence. This recurrence, which in humans can take decades after initial treatment to manifest, is usually more invasive and resistant to conventional treatment.

dead leaf

Although it’s possible to reduce (debulk) a tumor with surgery, chemotherapy, and radiation, CSC populations were often missed or even enriched as a result. When the tumor regrew it often results in the rapid death of the patient. Unfortunately, most of us are only too aware of family and friends who “survived” one cancer only to succumb, years later, to metastasis of cancer cells.

Turmeric and curcumin extract have been and continue to be extensively researched for their ability to kill various cancer cell lines.  The number of published studies is so abundant that it is disheartening that so many people who need safe, effective and affordable treatments are not given any information about it. 

Curcumin Is Ideal Cancer Therapy

Emerging evidence suggested that the dietary agent curcumin exerted its anti-cancer activities via targeting cancer stem cells of various origins such as those of colorectal cancer, pancreatic cancer, breast cancer, brain cancer, and head and neck cancer.

https://www.ncbi.nlm.nih.gov/pubmed/24851881

The study identified a number of ways in which curcumin provides an ideal CSC therapy, including:

  • Regulating CSC self-renewal pathway. Curcumin appears to influence at least three self-renewal pathways within cancer stem cells, namely, Wnt/b-catenin, sonic hedgehog 89 (SHH), and Notch. The authors list 12 difference cancer cell lines which curcumin appears to positively affect.
  • Modulating microRNA. These are short, non-coding RNA sequences that regulate approximately a third of the human genome. Curcumin degrades or inactivates cells by binding to messenger RNA (mRNA) within the cell. The way curcumin alters the expression of microRNAs in cancer stem cells suggests a strong suppression of tumor formation.
  • Direct anti-cancer activity. Curcumin has the ability to selectively kill cancer cells versus healthy cells and works with conventional chemotherapy agents, thereby making them more effective and, in some cases, less harmful.

“Curcumin, as well as its modified forms (analogs or nanoparticle-encapsulated formulations), has shown great potential to inhibit CSCs in several types of cancer both in cell cultures and in mouse models, including glioma, breast, colorectal, pancreatic, brain, and esophageal cancers. Some analogs (e.g., CDF) and formulations (e.g., nanotechnology-based formulation) have exhibited improved efficacy against CSC-like cells and greater growth-inhibitory capacity in tumors.”

https://www.ncbi.nlm.nih.gov/pubmed/24851881

There are over 800 studies on turmeric/curcumin in the national published medical research database, known as PubMed. The safety and tolerability of all the available human research on curcumin in human cancer studies found no cause for concern. Curcumin, in addition to being a natural Ayurvedic remedy for thousands of years, is well tolerated and caused no significant toxicity in clinical trials.

Unfortunately, none of the research I cited earlier identified the amount of curcumin used in cancer therapy. However, I found guidance on this site. https://integrativeoncology-essentials.com

Pharmacologically, curcumin has been found to be safe. Human clinical trials indicated no dose-limiting toxicity when administered at doses up to 10 g/day. All of these studies suggest that curcumin has enormous potential in the prevention and therapy of cancer.

https://www.ncbi.nlm.nih.gov/pubmed/12680238

According to Brian D. Lawenda, MD, an integrative oncologist trained at Massachusetts General Hospital and the Helms Medical Institute at Stanford-UCLA, and founder of IntegrativeOncology-Essentials, curcumin is considered to be a safe supplement, food additive and spice (by the U.S. FDA.)

Side Effects and Interactions

That said, Dr. Lawenda noted a number of potential side effects, drug interactions, and contraindications that you should know about:

  • Curcumin may cause an upset stomach. Dosages of 6g daily have been associated with minor flatulence and a yellowing of the stool. I take between 1,500 and 3,000 mg/day in two divided doses. I especially noticed this when my irritable bowel syndrome was raging on the diarrhea side. After probiotic therapy that replenished my microbiome, I no longer see this.
  • There is a risk of exacerbating existing gallbladder disease. Curcumin causes smooth muscle contractions, which will make it painful if you have stones in the bile duct.
  • May increase the risk of bleeding (due to platelet inhibition) when combined with other medications or botanicals like aspirin, anticoagulants (blood thinners), antiplatelet drugs, non-steroidal anti-inflammatory drugs (ibuprofen, naproxen, Motrin ®, Ale®), Gingko biloba, garlic, saw palmetto.
  • May cause uterine stimulation (caution is recommended during pregnancy)
  • May decrease the effectiveness of cancer drugs like cyclophosphamide and camptothecin.
  • People with GI disorders or predisposed to kidney stone formation should also use this supplement with caution.

How Do You Take It?

Oral curcumin is poorly absorbed from the bowel. However, the absorption can be increased when it is given with piperine (an extract from black pepper.) Simply adding piperine to curcumin has been shown to increase curcumin absorption by 2000%!

Taking curcumin with meals can increase its absorption (especially fatty/oily foods: olive oil, avocado, fish oil, milk, seeds, etc.)

salmon-with-carrots

Newer formulations of curcumin are available with greater absorption characteristics (i.e. complexed with piperine, nanoparticles, liposomal formulations, etc.) Watch out for curcumin supplements that do not contain the amount listed on the bottle.

Consumer Labs tested 22 products and recommends only four that met or exceeded their minimum requirements–like containing the amount listed, and not containing heavy metals or insect fragments. Two of the recommended brands are not available on Amazon, but are listed in their review (see link at the start of this paragraph). The brands they, and I, recommend are: Doctor’s Best High Absorption Curcumin and NOW Curcumin.

Curcumin is rapidly cleared from the blood (within 1-4 hours of ingestion, most of it is cleared.) To maintain blood levels of curcumin, it is best to take it in divided doses throughout the day. Dr. Andrew Weil, a well-respected integrative medicine practitioner, recommends taking curcumin derived from whole turmeric three times per day.

Unfortunately, we don’t know the optimal dosing. That said, doses from 500-3600 mg of curcumin per day have been used in recent studies.

For cancer prevention, Life Extension recommends 400-500 mg per day. During and after cancer treatment, they suggest 800-3,000 mg per day (divided dose, with meals containing some form of fat).

If you want to take turmeric instead of curcumin, here’s how to do it. One tablespoon of dried turmeric powder weighs 6.8 grams. The average amount of curcumin (by weight) in turmeric powder is 3.4%. So, 1 tablespoon of turmeric powder is equal to 6.8 grams x 3.4% = 0.231 grams or 231 milligrams. Therefore, if you want to take 500 milligrams of curcumin per day, you will need to consume approximately 2 tablespoons of dried turmeric powder.

As with any supplement, please first discuss your interest in using curcumin with your oncology team or primary care provider before you start taking it.

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.

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.