Category Archives: M.E.

A Short Update From Younger Labs On This International Awareness Day for M.E.

 

Today is the International Awareness Day for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia, Lyme disease, and Gulf War Illness.  Dr. Younger posted a short YouTube video (link below) about some of the exciting things that are happening now in the world of chronic pain and fatigue research.  He knows of many strong initiatives to cure these diseases, and thinks we will be making some major advances in the near future.

 

 

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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+.

 

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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.

 

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Rapid response for inflammation control in songbirds’ brains could lead to therapies in humans

 

A biological process in the brains of zebra finches shows that the songbirds respond quickly to trauma and are capable of controlling the natural inflammation that occurs to protect the brain from injury. Understanding the process well enough could lead to therapies in humans to control inflammation and hasten recovery from brain injury such as stroke, says American University neuroscientist Colin Saldanha.

Chronic inflammation causes cell damage and the loss of important neurons that regulate memory, mood and movement. Being able to control and limit inflammation in an injured brain may preserve vital brain function.

This information may lead us to believe that possibly the scientific community will expand research on this important development that may affect patients suffering with Alzheimer’s, Parkinson’s disease, strokes and inflammatory diseases, such as M.E. (myalgic encephalomyelitis).

For more than a decade, National Institutes of Health has funded Saldanha’s research because of the implications it has for treating neurodegenerative conditions.

Source: Rapid response for inflammation control in songbirds’ brains could lead to therapies in humans 

 

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A Florida Poll On Medical Marijuana

According to a poll, reported on Johnny Green’s blog, “The Weed Blog,” there is enough Florida voters (with wiggle room), that will make our quest a reality.

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This is exciting news, and let’s hope the figures don’t lie, and we will finally see all the hard work come to fruition!

Please read:

Latest Poll Shows 65% Support For 2016 Florida Medical Marijuana Initiative

 

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Invisible Disabilities: the facts & figures

Emily has put together a great post which is so enlightening, especially for people who are not aware of the several “invisible disabilities” suffered by so many. Her info is based on those diagnosed patients in the UK, but the underlying significance is that this information can be a realistic comparison relating to patients of these diseases in the other countries around the globe.

Thank you, Emily.

A Prescription for M.E.

December 3rd is the UN’s International Day of Persons with Disabilities. This year one of the sub-themes is ‘Including persons with invisible disabilities in society and development.’ Here’s an infographic with stats, symptoms and common misconceptions about invisible disabilities.

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Myalgic Encephalomyelitis Is Now A Real Disease!

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A guest blogger (Rivka Solomon) posted on Erica Verrillo’s blog, “Onward Through the Fog,” (both women are patients suffering with ME/CFS) and she tells her story of 25 years with this disease, and about her raised hopes upon learning that Dr. Francis Collins, Director of the NIH, has announced IT IS A DISEASE and deserves government research.  The U.S. government’s (at long last) recognition of this debilitating disease, has given hope to all sufferers, their families and friends.

There is one thing, upon reading Rivka’s post, that I hadn’t known before; that is, this disease has grown so widely, that there are past and current NIH employees who are ill with it, and also, employees working for and with the NIH who have family members who are greatly debilitated by the disease.

Again, it is not only what you know; it’s WHO YOU KNOW, that will make inroads possible.  A fact of life.

A popular saying I’ve heard many times:  Cancer is such a popular disease, that there isn’t one family which hasn’t been affected by it.  It seems to me, that, as Myalgic Encephalomyelitis is growing here and around the world, there may come a time when that saying will apply to this disease.

Our NIH researchers better move quickly and make up for all the thirty years of wasted time.

DO YOU HEAR THAT, DR. COLLINS??

 

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Social Security Disability is Nearing Insolvency

Yes, it’s true.

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Here are the main reasons for this disastrous event in the near future, if Congress does nothing to fix it:

  • There have been an increasing number of people receiving SSDI while there is less revenue in payroll taxes coming in.
  • The aging Baby Boomers reaching the prime disability age (70% of disabled workers are age 50+) , and the increase of the number of women in the workforce (and therefore being covered by this program), have caused 1/3 of the increase.
  • People living longer (therefore staying on the rolls instead of dying), and the increase in the age of retirement (shifting more people onto SSDI than retirement) have also contributed.
  • An additional factor is the new disease guidelines implemented in 1984, allowing disability payments for mental illness and musculoskeletal illness (back pain, depression and fibromyalgia are three often mentioned diseases in this category).  While heart attack and stroke have remained steady, the incidence in these new diseases has increased, accounting for a whopping 50% of the increase.
  • Also, there are myalgic encephalomyelitis (ME) patients who also suffer with fibromyalgia.
  • A loss of revenue from payroll taxes. On the demographic side, the Baby Boomers had less children, so there are less workers paying into the system. Where there used to be 17 workers contributing for every recipient, there are now only 3.
  • The increasing income inequality has also contributed to the problem. There is a cap for workers at wages of $118,000 a year. Those making more do not pay more into the system. As more people are making over this amount, revenue has decreased.
  • There is the issue of fraud in the system.  While nobody wants to deny deserving applicants benefits, fraud must be held in check so that funds are available for the truly disabled.

The subject of Social Security Disability application denial or acceptance is a hot one.  The fear of fraudulent claims has pushed our government to deny too great a percentage of applications that are truly deserving.  Nearly 65% of disability claims are denied by judges.

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In order to understand how the Social Security Disability funds are allocated, it is important to note that the program is made up of two divisions:  a smaller one for disability; and a larger one for old age retirement.  Payroll taxes collected from those currently working are divided into two streams:  one for SSDI; and one for the retirement fund (also called the Old-Age and Survivors Insurance or OASI).

A little history:  Since the 1970s, funds have been reallocated 11 times from SSDI to OASI, and vice versa, when either fund was in need. This worked fine when overall, there was enough money to fully fund both. However, due to demographic and other factors, the overall program is projected to become insolvent in 2033. This is 18 years from now – not as far off as it might sound, given the time it takes our government to roll out reforms.

Many Senators stated that while nobody wants to cut funding for the disabled, they will not let a reallocation go through unless there are also reforms to the SSDI program (and possibly OASI) to either cut costs or bring in more revenue or both.

My advice:  Contact your Representatives and Senators to fix this before we have a very serious problem on our hands.  Our disabled citizens need the continuing support they deserve, and they are dependent upon our healthy, working Americans to help.  Those, who are healthy and can work, need to appreciate something they might not think about:  They could find themselves in the same situation one day, and then need the help of Social Security Disability.

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The Scientifically Challenged UK Media Strikes Back

A must read. The Telegraph in the UK featured an article written by Sarah Knapton. Ms. Knapton goes many steps further to malign sufferers of ME than the PACE trial report did, in her report of a follow-up study.

Utting-Wolff Spouts

When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME by the British media2 and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre. However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement1.

The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity…

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M.E. awareness news from Norway – PM gave opening speech at awareness event

This gallery contains 4 photos.

Originally posted on A Prescription for M.E.:
I’ve started off my new blog with a “good news” story about M.E. awareness from Norway as this is a fitting end to a successful M.E. awareness month. An arts and crafts…