Category Archives: Scientific Research

#MillionsMissing Protest Coverage

 

Sept. 27th was a day of national and international protesting and recognition of #millionsmissingME, myalgic encephalomyelitis, is a greatly disabling, debilitating disease.

ME has been pushed to the sidelines for several decades by the HHS, CDC, NIH and governments around the world, as a figment of the patients’ imaginations.  The patients have been insulted with taunts and accusations that they are not really sick. Far from the truth.

We, advocates and patients who are able, must continue to make our voices heard.  We need more research and granting of funds by National Institutes of Health to continue and advance the research that has already been started by non-profit organizations with private donations.

We have lots to do to catch up and make up for the time lost and the lives lost along the way.  Millions are counting on the world to wake up and recognize ME as a devastating disease to the patients and families.

Please take a look at the site below to familiarize yourself with ME and what is being done to bring it to the forefront in the eyes of the world.

Protest Coverage

 

[ Header image from http://www.freewebheaders.com ]

 

Advertisements

The Election Isn’t The Only Thing On My Mind

 

At the top of my priority list is my daughter.

It was about 25 years ago, that she started noticing symptoms of loss of stamina, unusual tiredness, lots of pain, and seemed to be fighting low-grade flu-like symptoms every so often.  They were the types of feelings that we all just dismiss (was I really feeling so bad?) and go on with our lives, hoping those body signals of something “just not right” will go away.  And, to a point, they did, and no more thought was given.

But, every so often, they were there again.  Most times, they were almost unnoticed; other times, enough to force her to go about her daily activities of caring for her children, working full time, being a thoughtful, responsible person, by “pushing through” those symptoms, and then just falling into bed, exhausted.

This went on for so many years until about 15 years ago, when she was already living close by in Florida.  She came over for dinner one Sunday, with her then husband and her two daughters.  They arrived in late afternoon, before dinner time, and she told me she needed to lie down.  She was completely exhausted and just had to go to bed.  It was like an emergency, and I hurriedly prepared the guest room bed for her, and she practically fell into it as I closed the blinds.  She couldn’t move; and slept very soundly for hours.  When she got up, she didn’t feel refreshed, but she was able to dine with us and then they went home right afterwards.  It was from that point, that the symptoms would become more frequent and noticeable.

Going to work was and is not an option as of this past January 2016.  She really should have stopped work at least a year before.  Looking back, she kept up her pace with great difficulty because she was a single mom and her younger daughter was totally dependent on her, and she worried about finances.  She was living a physical, mental, stressful nightmare.

My daughter suffers with the disease that is the reason for the letter below which is circulating in the House of Representatives on behalf of MillionsMissing (a global movement for health equality) and is addressed to Dr. Francis Collins, Director of the National Institutes of Health.

Francis Collins, Director
National Institutes of Health
1 Center Drive, Room B1-126
Bethesda, Maryland 20892-0001

Dear Dr. Collins:

We write to thank you for your attention to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and encourage you to continue to strengthen the National Institutes of Health’s (NIH) efforts in ME/CFS biomedical research.

As you know, ME/CFS is a complex, debilitating, and chronic disease afflicting 1 to 2.5 million Americans. It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually. Yet, as the Institute of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.

A number of us sent you a letter in March of 2014 to express support for ME/CFS research and are heartened by your commitment to advance diagnosis, treatment, and a cure for ME/CFS through a reinvigorated Trans-NIH ME/CFS Working Group (Working Group) housed within the National Institute of Neurological Disorders and Stroke (NINDS), and new intramural and extramural research programs that will bring new investigators into the field.

We encourage the Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. We also ask that you provide us with the current status of this planning effort and the specific intramural and extramural activities planned for the rest of FY 2016, 2017, and 2018.

Thank you for your attention to these critical issues. We look forward to your response.

Sincerely,

Zoe Lofgren                           Anna G. Eshoo
Member of Congress           Member of Congress

The U.S. House of Representatives is currently circulating the letter asking the NIH to strengthen ME/CFS biomedical research efforts. NOW, is the time to contact your representative to ask him or her to sign the letter.  Representatives have only until Wed., Aug. 31 to agree to sign the letter so action must be fast.

Here is a “Prevalence of Well-Known Diseases” comparison chart by state, which compares the number of people in each state that suffers from ME, HIV/AIDS, Parkinson’s (PD), and Multiple Sclerosis MS).  Myalgic Encephalomyelitis (ME) is quite short-changed as far as NIH funding, research and timeliness is concerned.

The following websites will be helpful if you had or will contact your U.S. Representatives:

http://www.meaction.net/wp-con tent/uploads/2016/08/Script- and-How-To-1.pdf

https://drive.google.com/file/ d/0B8cZyk4UDCJkQkhfWHJRbU1BZlU /view?usp=sharing

https://docs.google.com/forms/ d/e/1FAIpQLSd3mTxetR874PxJjDA1 AwLDPna9fSNcaKoIx- YnldwGxEerCA/viewform?c=0&w=1

[ Header image from http://www.freewebheaders.com ]

 

Interview With Linda Tannenbaum – Open Medicine Foundation

 

Very informative interview of Linda Tannenbaum by Llewellyn King.  Linda’s daughter has severe ME.  It was the searching in 2006 for an answer from more than 20 doctors and finding none, that brought Linda to decide to start the OMF.

The video is 18 minutes long.

Thanks to Corinne Himmelman for posting this on Google+.

 

[ Header image is from http://www.freewebheaders.com ]

 

Dr. Jared Younger: Innovative Research on Neuroinflammation, Pain, and Fatigue

 

What is it that causes the chronic, severe pain and profound fatigue in patients suffering from fibromyalgia and ME/cfs (commonly known as “Chronic Fatigue Syndrome”)?  On a youtube video, uploaded on March 28th, 2016, Dr. Jared Younger is questioned about his knowledge and research on how inflammation in the brain affects the rest of the human body.

Dr. Younger received his PhD in Experimental Psychophysiology at the University of Tennessee-Knoxville. He completed his post-doctoral fellowship at Arizona State University and the Stanford University of Medicine, before taking an assistant professor position at Stanford.

In 2014, Dr. Younger joined the faculty at the University of Alabama-Birmingham (UAB). He is currently funded by the NIH, the Department of Defense, and several nonprofit agencies to develop techniques for diagnosing and treating neuroinflammation, pain, and fatigue.

Dr. Younger starts off the program by explaining, in simple terms, how inflammation is a good thing and when it turns around and becomes a bad thing that our bodies experience.

Dr. Younger talks about the hormone Leptin (what circumstances cause an uptick in the levels of Leptin?); the role of the hypothalamus; what role do the vagus nerve, cytokines and microglia play?; and many other factors controlling the inflammation in the brain.

The questions posed to Dr. Younger are intelligent, and thought-provoking (IMHO).  Dr. Younger’s responses are enlightening and are easily understood by the average person who has an interest in the subject of how inflammation in the brain causes pain and fatigue.

One of the things Dr. Younger is asked refers to the use of LDN (low dose naltrexone) which has been found to be of help to many patients.

There is so much information correlating to chronic pain and profound fatigue and the inflamed brain.  I highly recommend this one hour video, if you have the time.  Watching only a portion can be quite edifying.

 

[ Header image from http://www.freewebheaders.com ]

 

 

 

 

 

New Study: CBD Prompts Antidepressant-Like Effects

 

cbd

A Spanish study reported on “Marijuana.com’s blog” and taken from “ScienceDirect,” validates the CBD cannabinoid as having rapid acting antidepressant-like effects.

For the study, surgically modified OBX mice were first compared with ordinary mice and then both given the CBD cannabinoid. 30 minutes later, stunned scientists observed a noteworthy decline in hyperactivity, typically associated with anxiety and depression in humans.

There are 14.8 Americans who suffer from major depression, and this research is both encouraging and suggestive of a CBD cannabinoid that could be readily available and at reasonable cost.

According to the report, CBD protects nerves and protects against brain injury; it fights MRSA infections, which are resistant to antibiotics; it takes a preventative role against inflammation; it induces cancer cells to “commit suicide; and has other important significance in administering to human maladies.

For more information, please watch this video:

[ CBD image from bingdotcom ]
[ Header image from http://www.freewebheaders.com ]

Dr. Collins Testified Before The Senate Appropriations Subcommittee

 

Dr. Francis Collins, Director of the NIH (National Institutes of Health), in his testimony, outlined what he intends to do with the very generous funds for the NIH that have been included in President Obama’s budget.

One of the major concerns he spoke about was the strides made in the treatment of cancer.  The quote below brought to my mind, “Why couldn’t this same research be applied to ME (Myalgic Encephalomyelitis)?  According to Dr. Collins, researchers have discovered a way to prevent the cancer cells from getting through the body’s natural immune system.

Our immune system has T-cells to stop and reject foreign cells; however, these same cells need to be told when not to go into overdrive when the cancer cells get through the body’s defenses.

Immune dysfunction is one of the major symptoms from which ME patients suffer.  Dr. Collins’ testimony regarding research which allows the normal immune response to be re-activated seems to hit the nail on the head, not only for cancer, but for ME as well.  The immune system in ME patients seems to give up:  it can’t seem to fight off the invading viruses’ strong hold in their bodies.

Please read the quote, and you will see what I’m zeroing in on:

“Researchers have long been puzzled by the uncanny ability of cancer cells to evade the immune response. What stops the body from waging its own “war on cancer?” As it turns out, our bodies have important built-in checkpoints to prevent our immune systems from running amok and killing healthy cells. Certain white blood cells called T-cells—the armed soldiers of the immune system—are designed to go after foreign invaders, but they also need a stop signal to prevent going into overdrive. One way to do this is through a receptor on the T-cell called CTLA-4 that inhibits its function. Tumor cells have figured out how to take advantage of this pathway by up-regulating CTLA-4; the result is to put the brakes on the immune system, giving the green light for the cancer to grow.

NIH-funded researchers have discovered a way to release the brakes by introducing a monoclonal antibody against CTLA-4, allowing the normal immune response to be re-activated. Dr. James Allison, who led the basic science efforts that led to these insights, was just honored with the receipt of the Lasker Award, the “American Nobel Prize.” Promising results in patients with metastatic melanoma and lung cancer are making this and other immunotherapies the breakthrough treatment of the future. After President Carter was diagnosed with stage 4 metastatic melanoma, he received immunotherapy as part of his treatment.”

Of course, I’m just a lay person.  I haven’t had medical training; however, my mind usually works in an organized way, and of course, I may be completely wrong about my idea above.  I welcome any opinions.  Anyone out there in the blogosphere?

[ Header image from http://www.freewebheaders.com ]

New Clues into the Cause of Autism

 

Recently published results of researchers at Yale University, studying the brain and autism, have highlighted the value of turning stem cells from autistic and “normal” patients into “organoids.”

Flora Vaccarino, MD, a professor of child psychiatry and neurobiology is the head of a team of researchers at Yale University, which took stem cells from patients and “grew” them into “organoids.”  These stem cells were actually grown into brain cells so that the researchers could compare those with “normal” brain cells.

brain_organoidsx519

Brain organoids made of stem cells from an autistic patient (right) contained more proteins (red and green) associated with a particular type of neuron than did organoids made from the patient’s father’s cells (left).

This research could help determine what causes autism in one out of 68 births.

Organoids grown from stem cells have been used to study the heart, the intestines, etc.  It is a very interesting new science, and which has been and will be used more frequently, to find that perhaps the diseases of today may not be the diseases of tomorrow.

[The organoid images for this post are from BioMedicine News.]

[ Header image from http://www.freewebheaders.com ]

The Haze Around Our Bodies – Germophobes Beware!

 

I subscribe to a myriad of newsletters as many do – among them are those that are aimed at health issues.

One article that I read today, issued by HHS, caught my attention.  Did you know that our bodies emit bacteria into our surroundings, whether we are stationary or moving?  And that they can be detected and identify us from among other people?  We emit a “microbial cloud.”  Who knows?  Fingerprints may be a thing of the past in crime investigations!

bacteria

A University of Oregon study found that people emit some of their microbiome in a kind of haze around themselves.

In the study, author James Meadow’s team tested the air around 11 different people while they were each placed alone in a sealed, sanitized chamber. (Bold added)

The researchers found that the presence of most of the people could be sequenced and identified within four hours of leaving the chamber — just by the cloud of bacteria in the air they had left behind. (Bold added)

Different combinations of several groups of bacteria commonly found on and in humans are the key to distinguishing individuals, the research team said. Key species were Streptococcus, usually found in the mouth, and skin germs such as Propionibacterium and Corynebacterium.  (Bold added)

Our results confirm that an occupied space is microbially distinct from an unoccupied one,” Meadow said, and “demonstrate for the first time that individuals release their own personalized microbial cloud.”  (Bold added)

The findings may help improve understanding of how infectious diseases are spread in buildings, or even offer new ways to identify crime suspects, the researchers said.  (Bold added)

 

[Bacteria image from bingdotcom]

[ Header image from http://www.freewebheaders.com ]

 

Dr. Ron Davis Debunks NIH Claims Of Fairness

 

The latest post from MEAdvocacy.org starts off with the title and first paragraph:

“Dr. Davis Debunks NIH’s Claims of Fairness”

Posted by Tracy Smith, Sept. 3, 2015

Dr. Davis’ accomplishments and his ideas of how his team will work in studying severe ME patients.  The deception emanating from the National Institute[s] of Health (NIH) is that ME/CFS funding is a priority for them, yet NIH have rejected Dr. Davis’ application for funding for his study of severe ME patients..  Due to some very generous private funding, Dr. Davis’ Big Data study on Severe ME will be starting but, there is a desperately need for government funding to keep it going.

Quoted from “MEAdvocacy.org

Myalgic encephalomyelitis (ME), is a complex disease involving profound dysregulation* of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport as well as cardiovascular abnormalities. The disease affects people of all ages, genders, races and economic levels.

Sunshinebright continues:

It is widely known in “ME circles,” that the NIH , has pointedly reduced, and kept very low over many years’ time, the funds allocated towards research for finding biomarkers, treatments and ultimately, a cure for this severe, debilitating disease.

The blatant deceptions coming out of the NIH; that “highly respected institution,” have them claiming that funding research for ME is a high priority.  NIH also claims that requests for applications and submission of applications have been forthcoming in very few numbers; and those which have been submitted, have been of poor quality.  NOT TRUE.

Due to the fact that these (false) claims are coming from such a prestigious, august government body, their claims – whatever they may be – are taken seriously – unfortunately, for ME patients, in this case.

The fact is that our ME community has seen a rise in the number of scientists and researchers from our American medical and scientific communities, and they are coming forward to begin the much-needed research for ME.  The backgrounds and experience of these scientists are of the highest caliber, and they have had their applications for NIH funding for their ME studies returned unapproved.

The NIH has approved a great deal of applications from many of the researchers who want to work on ME research for research grants ; however, the applications that were approved were NOT FOR RESEARCH RELATING TO ME.  When ME is listed as the disease on the submissions, the applications are not approved.

Quote from MEAdvocacy.org:

NIH has approved countless applications for studies from these same scientists, as long as it was not ME/CFS related.  Could it be that the famous virus hunter, Dr. Ian Lipkin as well as Dr. Mady Hornig, suddenly lowered the quality of their application when it came to ME?  Did Dr. Ronald Davis, the award winning inventor with decades of NIH funded research, abruptly lose his brilliance to be graded “not that great” by the application reviewer?

*dysregulation:  “Impairment of a physiological regulatory mechanism (as that governing metabolism, immune response, or organ function).” ~Wikipedia dictionary.

[ Header image from http://www.freewebheaders.com ]

Chilli ME Challenge

 

Do you remember the “Ice Bucket ALS Challenge” of last year?  Well, now, we have the “Chilli ME Challenge.”

Awareness for ME/CFS/SEID/CFIDS needs to be addressed and put forth in all media.  The need for research is dire.  There are many brilliant and talented scientists who are ready to continue their intense and costly experiments and “all we need” is more money from our government’s NIH (National Institutes of Health).

Although the number of sufferers of ME/CFS/SEID outnumber the combined number of patients who have MS, Lupus and HIV/AIDS, the amount of grants for ME/CFS/SEID research is only $5 million as opposed to $250 million for the other diseases named above.

ME symptoms

Below is a short video of one woman’s (Simone) acceptance of the challenge.  Before she eats the hot chilli, she gives a quick summation of most of the symptoms that people worldwide suffer with this disease.