Monthly Archives: January 2015

A Very Different Post From Sunshinebright!

 

Sunshinebright (aka Carol) is really a fun-loving older woman, living in South Florida, USA.  Love music and fun videos.  Daughter sent a link to the following video a long time ago.  Found it in email inbox while cleaning out old ones.

Warning:  The musicians and players are not young; however, you will start to wiggle in your seat and toes will start tapping.  Some skin is exposed, but no nudity.

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Romeo’s and Rusty’s Favorite Past Time

Love these two!! ❤

Pussy Cats 3

I caught the two buddies enjoying their food side by side.

Romeo and Rusty at Food BowlRomeo and Rusty at Food Bowl 2

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Michael Whary, Autistic – Eagle Scout Project

Sixteen-year-old Michael Whary is an honors student taking advanced classes, plays the piano and trumpet, and is a member of his school’s track team.
And, as Michael readily acknowledges, he’s been diagnosed with Autism; in fact, the doctors told his parents he would never ride a bicycle nor drive a car.
Take a look at Michael now, at age 16!

 

Watch Cancer Cells Being Killed In New Video from National Institutes of Health-Amazing!

Have you ever wondered how cancer cells are killed in our bodies?  In this video, you can actually see this taking place.

Meet Professor Jarred Younger

 

It looks like we have a new rising research hero for Myalgic Encephalomyelitis.  His name is Jarred Younger.  He is currently at University of Alabama Birmingham (UAB), and his bio more than measures up:

Jarred Younger

Professor Jarred Younger

“Jarred Younger received his Ph.D. in Experimental Psychophysiology in 2003 at the University of Tennessee, Knoxville. He then completed postdoctoral fellowships at Arizona State University and the Stanford University School of Medicine before taking an assistant professor position at Stanford. In 2014, he joined the faculty at the University of Alabama Birmingham, with a primary appointment in the Department of Psychology and secondary appointments in the Departments of Anesthesiology and Rheumatology. Prof. Younger’s goal is to end the chronic pain and fatigue that is caused by inflammation in the brain. He is currently funded by the National Institutes of Health, Department of Defense, and several non-profit agencies to develop techniques for diagnosing and treating neuroinflammation, pain, and fatigue.”

Younger and some other ME/CFS and FM researchers are taking a very different approach to these illnesses.  Cort Johnson introduced us to Professor Younger in his “Health Rising” blog.  Please click on the “Health Rising” link to read Cort’s in depth report on Professor Younger’s experiments involving the hormone, leptin and the main immune agents in the brain – the microglia.  I, personally, found Cort’s report very clear and I became excited about this new approach in trying to find the cause of the brain inflammation, the pain, the fatigue and the impaired cognitive functioning.
The notes below, taken from Professor Younger’s UAB research site, are a synopsis of the work projects ongoing in Professor Younger’s lab at the University of Alabama Birmingham:

“Current Projects

Short descriptions of our active research projects are provided below. If you have any questions about our projects, feel free to contact us by email at youngerlab@uab.edu. You may also call our main line at 205-975-5907.

Discovering the source of chronic pain and fatigue

We have found specific chemicals in the blood that may cause chronic pain and fatigue in many women. These chemicals are part of an immune system that may not be working correctly. We have received funding from the National Institutes of Health to contiinue testing the role of these chemicals in disease. If we are successful, we may not only produce an objective test of fibromyalgia and myalgic encephalomyelitis, also known as chronic fatigue syndrome, but we may also be able to develop more effective treatments for those disorders. Women participating in this study have blood draws over multiple days and record their symptoms on a handheld computer.

Daily immune monitoring in men with Gulf War Illness

After the 1991 Gulf War, many individuals in the military returned home with a range of unexplained symptoms. Most of those individuals experience chronic pain and/or fatigue. We believe that environmental exposures while in the Persian Gulf region may have sensitized the immune system, causing the symptoms of Gulf War illness. We are testing that hypothesis by measuring several inflammatory chemicals in the blood of people who suffer from the condition. Our goal is to learn more about Gulf War illness so we can develop effective and safe treatments.

Using botanical anti-inflammatories to treat Gulf War Illness

We now know that several botanical agents, such as mushrooms, nettles, and herbs, have anti-inflammatory properties that may benefit individuals with chronic pain or fatigue. Most of these products are available without a prescription, but they have never been tested in Gulf War illness. We are currently funded by the Department of Defense to test some of these supplements in individuals with Gulf War illness. If these anti-inflammatory products reduce symptoms, then we will learn more about what is wrong in people with Gulf War illness and make progress in treatments that make patients function and feel better.

Developing better methods for detecting inflammation in the brain

We believe that low-level inflammation in the brain may be the cause of many cases of pain, fatigue, problems with thinking or memory, and depression. Unfortunately, no tool is currently available that allows us to determine if someone has low-level inflammation in the brain. We are working on several solutions to that problem, using neuroimaging techniques such as diffusion tensor imaging, positron emission tomography, and magnetic resonance spectroscopy. We hope to make a safe, non-invasive and accurate test available for neuroinflammation. For these studies, we are currently recruiting people with chronic pain and fatigue, and healthy people.

Exploring the effects of opioid painkillers on the brain

While strong painkillers are important in managing pain, they may cause problems in some individuals when used for a long period of time. Some of those problems include addiction, changes in mood, and even increased sensitivity to pain. We are conducting brain scans on people who are starting or stopping opioid painkillers to determine how the drugs affect the brain and cause problems. With the information we gain, we hope to find ways to improve pain treatments and minimize their unwanted side effects.

Low-dose naltrexone and other microglia modulators for pain

Our lab has shown that low doses of naltrexone can be effective in reducing the chronic pain associated with Fibromyalgia. We believe the medication works by suppressing the activity of immune cells in the brain (microglia) that have become hypersensitized. We are now further testing this medication to see who it helps best. We are also testing other medications that may work even better than low-dose naltrexone.”

[Professor Younger’s photo is from University of Alabama Birmingham site]

An Update On What’s Happening With Florida’s Medical Marijuana Law

 

The Florida legislature passed legislation last year, allowing the growing and use of medical marijuana; however, before anything concrete could be accomplished, the Florida Department of Health’s efforts to write regulations bogged down in legal challenges from growers, court rulings and bureaucracy.  The main problem was with the Florida Growers’ Association.  The Department of Health was stymied.  How could they choose which growers would be granted the 5 licenses?  So, the case went to court, but the court threw out the parts of the new law associated with choosing the beneficiaries of the licenses.

medical

The Orlando Sentinel published an article on Jan. 19th by Scott Powers entitled,

State pot committee heavy with commercial interests.”

Now, this is self-explanatory, isn’t it?  You don’t have to dig deep to understand what is going on.  But, I’ll give you just a “smattering:”

So, the Department of Health decided to form a committee which would decide on rules to which growers would have to adhere.  Sounds simple.  But, there is a catch 22 with this committee formation.  You can see it now, right?

After the court decision, a 12-member panel was formed, which includes Winter Garden nurseryman Bruce Knox and at least eight others in position to make money from the law.  I can see it now:  hands rubbing together and smiles of glee while thinking of all THE MONEY that will be handed to them.

money in hand

Never mind that there are lives at stake here. Never mind that time is running out for patients who suffer from multiple daily seizures; any one of them which could be their last.  Never mind patients are suffering from great bodily pain.  Never mind that patients are becoming addicted to pain medication; without which living is intolerable.  Never mind that a large percentage of the very sick patients will NOT be able to AFFORD the prices of medical marijuana.  Never mind that, if patients are lucky enough to have medical insurance, their insurance will most likely not cover the expense of medical marijuana, or make the prescriptions very difficult to fill.  Never mind that perhaps not all physicians would be willing to write prescriptions for “pot.”  Never mind that chronically ill people are too sick to work, and are losing their employment – losing their income – losing their lives.

The committee will convene in Tallahassee on Feb. 4-5 in order to create rules replacing those thrown out in December by Administrative Law Judge W. David Watkins of Tallahassee.

At least 9 of the panelists represent Florida growers and other companies that could get involved in the budding Florida legal cannabis industry.

florida growers

“I think the [D]epartment [of Health] has been very thoughtful and mindful to try to create a group that stands the best chance of creating the regulatory framework that is going to make it successful,” said Knox, whose nursery, founded in 1962, annually produces about 125 million plants, mostly seedlings for wholesale growers.”

Yes, “thoughtful and mindful.”  Sounds about right.  “…creating the regulatory framework…”  Hmmm.

A committee seat went to a Colorado grower, Joel Stanley, whose company created the most well-known brand of cannabis oil called “Charlotte’s Web.”  It is believed that Stanley’s brand will probably have a great influence on the Florida marijuana crops.  So, Colorado growers are going to profit, too.  Why not join the crowd.  Share in the spectacular “crop” of money, as long as they are at it.

A botanist, Darrin Potter is on the committee, as well as Jill Lamoureux, a lobbyist for CannLabs, a product testing firm in Colorado.  The crowd is growing.

Holley Moseley, whose daughter RayAnn suffers dozens of seizures a day, was appointed as the patient advocate representative. She helped found Realm of Caring Florida, a Sunshine State franchise of Stanley’s company, Realm of Caring.

Three seats went to Miami horticulturalist and anesthesiologist Dr. Jeffrey Block; Tallahassee lawyer Donna Blanton; and Office of Compassionate Use Director, Patricia Nelson.

Here are some subscriber comments to the Orlando Sentinel article:

“It seems the industry will be defined by the foxes in the henhouse. An example would be nursery owners on the committee setting a soil test standard that matches the conditions of their soils, but not competitors’. It may not have any benefit to medical users, or might reduce effectiveness, but it solidifies the control of the committee members to ensure they get the business, rather than other vendors. NO vendors or providers should have voting positions on the committee. The result will be rules that benefit certain providers and not necessarily result in the most effective medicine.”

“Yes, it’s a sin against democracy to have interested businesses write the rules that will allow them to profit, but the Legislature set it up like that. Five dispensaries for a population of 19.5 Million people; I have never heard of a more absurd scheme. If you estimate from Census data that about 10% of the total population may benefit medically (elders at 5%, disabled at 5%, low estimates), that’s almost 2 Million who would be using the services. So, each nursery will serve 400,000, roughly. If they were open 365 days, that would mean serving 1,096 customers a day. Is that feasible? Not for patients, maybe for the businesses that will be hitting the jackpot. That’s not “compassionate”, it’s monopoly, but it is taking forever and the people who are suffering pay the biggest price. That’s the bigger sin.”

“The article sort of paints a picture of farmers wearing overalls. The Good Ole Boys hire the lowest cost workers to do their job for them because the state grant[s] them exclusive license. They aren’t farmers, they are bankers. They will not be able to produce medical grade cannabis with this absentee landlord plant. The only thing that will happen is that they will contract the growing out to people who can do it. With the cost of middlemen, granted as favors by politicians, the price will not be competitive and patients in Florida will have to wait until 2016 when our amendment passes.”

“If you liked the show Big Brother, then you are going to love this. Partnerships within this committee should begin soon.”

“Holley should bring her daughter to the meetings, just to keep the members focused on what the real issue is.”

“Greed is so ugly when you get to watch politicians legislate for the bucks.”

No one is getting fooled by the antics of the Legislature and its “committee.”

 

[Images from bing dot com]

I Thought I’d Never See This

Friends for only a brief time.

Pussy Cats 3

I happened into the bedroom one day last week after shopping, and after seeing Romeo and Patches together, I grabbed my camera.  Patches and Romeo are kind of out of sorts with each other usually, and Patches tries to avoid Romeo whenever she can.

These photos are proof that animals are always surprising you.  Will wonders never cease?

Romeo and Patches snuggling 1

Romeo and Patches snuggling 2

Romeo and Patches snuggling 3

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First Person Accounts About What It’s Like To Live With M.E.

Well-known law prof battles stigma of chronic fatigue syndrome by going public

For many who suffer from chronic fatigue syndrome, stigma is the worst aspect of the illness.

People suffering from the syndrome, also known as myalgic encephalomyelitis [M.E.], have been treated as malingerers and met with disbelief, according to Northwestern University law professor Steven Lubet. Many have been referred to psychiatrists.

“I am often essentially immobile, with other debilitating symptoms as well,” Lubet writes. “On days when no one sees or hears from me, it is most likely because I am housebound or bedbound. Sometimes it is impossible to manage the keyboard.”

All my fellow bloggers who follow this blog, are aware that I advocate for M.E. (Myalgic Encephalomyelitis).  When I come across, in my internet wanderings, some information that I believe will help others to understand what life is like when suffering with this chronic illness, I am forced to share it.

blue ribbon for me

I was struck by the “true-to-life” commentary by an M.E. patient, known as “Carol.”  She tells what her life is like since she came down with Myalgic Encephalomyelitis (M.E.).  After reading her comment at the bottom of the article, I decided to post it here.  It shows what the quality of life (QOL) is like when a patient lives with M.E. and includes family and friend relationships:

It is appreciated when anyone with a higher profile [Prof. Lubet] speaks out in regard to their experience with me/cfs. I so relate to the point about not being seen for a day or so because of being bedridden or homebound. It’s a delicate balance of coping, energy reserving, and prioritizing. I too acquired this illness in 2006, diagnosed by Dr. Bruce Carruthers in 2007. Up until now I have reserved most of my energy to work a week on week off jobshare but it is becoming more and more difficult. I see my house becoming more and more cluttered as I no longer have any energy to do even the important ( to me) tasks around the house. We eat out more often and I am less and less motivated to find something different to wear to work or make sure my nails are “done”. To the general public or unenlightened physicians this may seem like symptoms of depression, however I know that it really is just a lack of energy. Does anyone else have mental desires to do things but just cannot physically do them ? Support is always lacking, some friends and family have been pretty good, others that think you should be cured by now.. but there are some family that think I just don’t look after myself and that I suffer from depression. Very frustrating when I try to explain the difference as they claim to have read up about me/cfs and declare that I am just making excuses for not seeking a psychologist/medication to treat my “depression”. One of my children has chosen to “detach” from me because they just find me too negative ( because there are things I cannot do ) and an excuse maker. That my sometimes garbled words or poor memory just make me unlovable “until” I choose to seek help for my “problem”.

 

[Image from bingdotcom]

 

Hey, That’s Mom’s Pillow!

Romeo found a very comfortable spot.

Pussy Cats 3

My cats are taking over the whole house – I don’t really care, but NOT MY PILLOW!!

That's my pillow

Thats my pillow 2

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Trees With Personality

 

Trees have always fascinated me, especially when I see unusual and/or beautiful ones.  When I was a kid, I loved to draw them.  As an adult, loved going into the New England states in Autumn to welcome the gorgeous Fall foliage.

Here are some I collected on my Pinterest board, “Trees With Personality.”  The captions are the first thoughts that came to mind as I first viewed these trees.

 

Clean and crisp; frigid and frosty

Clean and crisp; frigid and frosty

Coconut tree - Hula hoop anyone?

Coconut tree – Hula hoop anyone?

Pink cloud comfort.

Pink cloud comfort.

A porcupine tree - defensive quills

A porcupine tree – defensive quills

Paperbark cherry tree - dressed up with its red bands - ready for a party.

Paperbark cherry tree – dressed up with its red bands – ready to party.

Trying to straighten up and live right, but has to bend to its genes!

Trying to straighten up and live right, but has to bend to its genes!

This tree has heart!

This tree has heart!

Weeping, weeping.

Weeping, weeping.