Category Archives: Invisible Illness

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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At This Time Of Year

 

hands

Remember to reach out to those living with illness and pain especially during this time of the year.  It can be a very lonely and isolated time for them. Give them a call, a smile, a hand, a hug and an encouraging word that shows you care.

I doubt there is no one who could use an extra dose of caring from a friend, a relative and yes, even from a stranger.

Speaking personally, the month of December has proven to be a very difficult month every year.  It is the month when I lost both my husbands who I deeply loved.  December anniversaries and events keep running through my mind.

I don’t look forward to this time of year and wish it would hurry along, so that the new year may begin with feelings of freshness and hope for a better year.

 

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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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Some News From Jarred Younger’s Lab Regarding ME And Fibro

 

Dr. Younger is one of the stars in the continuing research regarding ME.  He has received grants from the NIH for his very important work, assisted by a very able staff at the University of Alabama-Birmingham (UAB).

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 continue 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.

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In The Midst Of Hillary Johnson’s Great ME/CFS Mission: “Osler’s Web”

 

I am in the middle of reading “Osler’s Web,” by Hillary Johnson, and to date, finished only 360 pages out of 700.  So many times, while reading very disturbing passages (most are disturbing), I gasp out loud at the lies, lies and more lies and the disgusting actions (or non-actions) or disinterest of CDC employees. The refusal by just about all government employees to accept the well documented research (funded by private patients and families because no money came from government) by excellent and talented researchers and clinicians is mind boggling and discouraging.

I could go on and on, but the frustration I feel and also the anger about the disgusting and CRIMINAL treatment of all patients and their advocates, is overwhelming.  In order to read this book, one must have a strong survivor’s state of mind, because it is not an easy read by any standard; however, Ms. Johnson’s reporting is very well done.  She is constantly citing well documented events, dates, comments and quotes from an enormous list of involved patients and researchers.

I push on because I feel a strong desire and yes, obligation, to find out why the illness that my daughter and many millions like her in the U.S. and many more millions worldwide suffer from, is so wrongly treated and so woefully perfunctorily by the world’s medical community and also governments.

oslers web

Sir William Osler (perhaps his greatest contribution to medicine was to insist that students learned from seeing, and talking to, patients and the establishment of the medical residency) is Ms. Johnson’s inspiration for the name of her mission.  I call it a mission because that is exactly what she undertook – a very great mission – to expose the REAL story of the “why” of the disdain that ME sufferers experience around the world, and not being believed that they are REALLY SICK.

OSLER’S WEB by Hillary Johnson is a true documentary of the history – it really is a web – of the malevolent treatment by the US government against EXTREMELY ILL people. It is not an easy book to read, for sure. Not only for the content, but also the fact that it is a large, high paperback with small type and 700 pages. I persevere, and will finish it without doubt. It is RECOMMENDED very highly to anyone who wants the TRUE STORY of why this disease is not taken seriously by our government and most of the medical community.

Dr. Stephen Straus is the worst culprit, in my opinion.  He was the one NIH (National Institutes of Health) scientist (?) who prevented all true and correct information about CFS from getting out to Congress or to the public or to the medical community through publication of excellent research in recognized medical journals.  He would not approve proposals for publication of documented scientific research which he perceived as being against his belief which was that the disease was psychosomatic.  In other words, “It’s all in their heads.”

Straus bet his career on pushing his opinion which was that chronic fatigue syndrome – CFS – (I hate that name – fatigue is definitely NOT the total description of the disease) was not a real disease.  His career was a very successful one because he convinced those all around him that he was right.  He did this by suppressing all the documentation which proved that he was wrong.  He was in full control.

Quote from CFS Centraldotcom:  “For those who don’t know much about the late researcher [Dr. Stephen Straus] who headed up [and held up] “CFS” research for years at the NIH, he holds the distinction as the only physician who seriously injured the health of several patients, during his [antiviral] trial in the 1980s.  (According to what I’ve read in Johnson’s book so far, and after reading articles on the Internet regarding this “physician,” I have arrived at the opinion that this man, single-highhandedly, caused the negativity within which sufferers of ME (myalgic encephalomyelitis) are held in most medical circles.  He is also the reason why no funding, and just a token recently granted, was forthcoming for research since the middle 1980s.

Dr. Nancy Klimas, a Miami Florida immunologist who practiced during the 1980s and still practices, ran a CFS clinic at the University of Miami and an AIDS clinic at the Miami veterans hospital, has stated, “If given a choice of whether to be ill with AIDS or CFS, I would choose AIDS.”  She, more than any member of the medical community, can say this with great authority.  She is an expert in both AIDS research and in CFS research.

Dr. Klimas, during an interview with a CBS reporter, was asked, “Do you think doctors discount females more than they do males?”  Klimas’ answer was swift and sure, “Yes. Oh please, yes. I’m going to say that only because I spent the last 30 years taking care of women that had to go through dozens of doctors to get someone to take them seriously.”  Dr. Klimas made this statement due to the fact that chronic fatigue syndrome (ME – myalgic encephalomyelitis) female patients far, far outnumber male patients.

The big heroes are Dr. Dan Peterson and Dr. Paul Cheney.  They held fast to their knowledge, experience, patient care and test results that their patients and the patients in many clusters around the country were REALLY SICK.

The biggest heroes are the patients who suffer unbelievable trauma every night and day; who have gone through dozens of doctors; who have gone through hundreds of tests; who still suffer intolerable physical and emotional stress every minute of every day; and who have lost their former lives, their friends, families and spouses.

And no end is in sight.  Thirty-plus years have gone by, and we are no closer to one biomarker diagnosis; no closer to effective treatment; and no closer to a cure – if there will ever be one for this multi-symptom disease.

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Osler’s Web by Hillary Johnson

 

Cort Johnson mentioned Osler’s Web in his blog post today, “Health Rising.”

OUT OF PRINT?  I heard about the book many months ago when I read an article by an ME/CFS/SEID advocate; for months, now, Amazon claims it is “Temporarily out of stock.”

osler 1

So, I did the next best thing:  Researched it.  Here’s what I came up with:

“A relentless, meticulous, and highly persuasive exposé by a journalist who spent nine years investigating the medical research establishment’s failure to take seriously chronic fatigue syndrome… In a chronology that runs from 1984 to 1994, Johnson crams in fact after telling fact, building up a dismaying picture of a rigid and haughty biomedical research establishment unwilling or unable to respond to the challenge of a multifaceted disease for which a causative agent has yet to be found… A compelling, well-documented account…”
Kirkus Reviews

A reviewer on Amazon (5 stars):
By N. Hall on April 27, 2000

Format: Hardcover

This chronicle of the history of CFIDS is fascinating. There are better books about what CFIDS is, what it’s like to live with it, and what to do about it. The strength of Osler’s Web lies in what Johnson has to say about the politics of disease and science. As the wife of a scientist and the daughter of another (and a PWC), I found her highly detailed description of the scientific community to be sadly credible. A lot has happened with regard to CFIDS research since the book was published and I’d love to see an update. What does Johnson make of recent scandals at the CDC, for example, or what does she know about the projects being funded through the NIH? This is good, basic reading for anyone interested in CFIDS and in the dynamics of scientific inquiry.
If anyone has information about where else, other than Amazon, a copy of this book may be found, please leave the info in comments below.  Thanks.
hillary johnson

Hillary Johnson

I found a page (untitled) with Hillary Johnson being interviewed about her book, but below is only a partial of the interview – it’s too long to post here in its entirely.
At the end of the interview, she has a list of prominent people with the government, research and advocacy, and gives a short statement about them and the reason why she included them:

Hillary Johnson talks about Chronic Fatigue Syndrome and her book, Osler’s Web.  [Ed. Note:  Update – it was published about 20 years ago.]

Is chronic fatigue syndrome (CFS) an illness made up by emotionally troubled people, or is it a legitimate medical illness?

Yes, it is absolutely a legitimate illness. In fact, studies show that CFS is among the most severe of all medical diseases known to man. In the last decade, there have been an abundance of scientific studies that prove CFS carries with it a large range of immunological abnormalities. In addition, scientists have shown that the disease causes significant brain problems, in the form of multiple small anatomical holes in the brain with concurrent I.Q. losses. Cognitive–or thinking–problems, including short- and long-term mem ory loss, inability to perform math calculations and to appropriately “process” visual-spatial relationships are just some of the problems CFS sufferers must cope with on a daily basis. Most recently, in 1995, cardiologists at Johns Hopkins demonstrated that CFS sufferers have a brain defect that results in abnormally low blood pressure and low blood volume throughout their bodies.

Finally, although CFS has been repeatedly dismissed as a “yuppie disease,” some studies show that the hardest hit segments of the population are blue collar workers and the poor. This disease does not respect class lines–everyone is at risk, including teenagers and even very young children.

If CFS is for real, why does it get such a bad rap? Why do people think it’s just a condition of lazy people and malingerers?

The biggest single problem is the name, which not only fails to describe the severity of the disease but which actually inspires hostility toward the sufferer. People with CFS cannot get well merely by getting more sleep, or, conversely, by exercising more. As a matter of fact, telling CFS patients to force themselves to “go out and get the muscles working” is about the worst prescription; vigorous exercise only exacerbates the symptoms.

You say CFS is more serious than the name implies. What do you mean?

“Fatigue” is a most inadequate word in this case. There are elite-class marathon cyclists with this disease who can no longer walk to the corner; there are previously fit adults with CFS who are so weak they must shower while seated on lawn chairs. Many CFS sufferers are confined to wheelchairs, or to their beds. Once caught in the grip of this disease, there are days when brushing your teeth or raising a glass of water to your lips requires effort tantamount to pushing a boulder up a mountain. Most seriously, intellectual abilities are adversely affected. Commonly, the I.Q.s of CFS patients fall, sometimes dramatically. Severely ill CFS patients have all the symptoms of viral encephalopathy, including “ataxia,” which means they cannot walk unaided because their brain and their limbs aren’t communicating.

What have the federal health agencies been doing about this problem?

In 1984-85, a large number of people living in Incline Village, Nevada, were devastated by a mysterious, debilitating disease, now known to be Chronic Fatigue Syndrome. After a cursory investigation of the outbreak, the Centers for Disease Control (CDC) and the National Institutes of Health (NIH) have made little effort to aggressively research the disease. It was not until 1995–ten years later–that scientists at the CDC gave CFS a “Priority 1” listing among their “New and Reemerging Infectious Diseases” category, thus officially recognizing it as a bona fide disease. Despite including CFS in this category, these agencies continue to insist there is no evidence that CFS is infectious.

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Is ME (Myalgic Encephalomyelitis) A Hidden, Mysterious Disease?

 

It isn’t.

It might seem like it, according to the treatment it gets from our highly-regarded Health & Human Services Department (HHS), National Institutes of Health (NIH), Centers for Disease Control (CDC) and other sub-departments of the huge HHS.

It seems like there is a vendetta against ME patients in the U.S., and also in other countries, where very ill patients are diagnosed and treated for psychosomatic illness, when they are really suffering from a multi-symptom, extremely painful and debilitating disease.

The whole body is affected.  Not just nerves; not just the brain, not just the lymph nodes; not just the immune system; not just the muscles, not just the major organs of the body – BUT ALL.

Another thing:  Approximately 80% of patients who are suffering with ME are women.  Some scuttlebutt I’ve heard has suggested that, since such a huge percentage of patients are women, some governmental entities may not put as great importance on funding for research for ME as they would if the disease was weighted differently.

The other 20% is comprised of men and children.  Yes, children!  Also, it is not unusual for members of the same family to fall ill with ME.  Outbreaks have also been reported within communities.

blue ribbon for me

Unraveling the “mystery” about ME:

 

  • Myalgic encephalomyelitis (ME) is a debilitating, often disabling, illness recognized as a neurological disorder by the World Health Organization since 1969.

  • After an outbreak in Nevada in the 1980s, the CDC coined the term “Chronic Fatigue Syndrome.”

  • There are no FDA-approved treatments and no diagnostic tools for ME.

  • Between 836,000 and 2.5 million U.S. residents are afflicted with ME, with 84 to 91 percent not yet diagnosed. True numbers are highly under reported

  • ME-related medical expenses and lost productivity cost the U.S. up to $24 billion annually.

  • In research funding, ME receives less money for research than hay fever, and ranks far below similarly disabling illnesses; such as:

  • 1) ME: About $2 per patient per year in NIH funding ($5 million in FY2015);

  • 2) Multiple sclerosis: About $250 per patient ($103 million in FY2015); and

  • 3) HIV/AIDS: About $2500 per patient ($3 billion in FY2015).

  • Patients with ME score more poorly on quality of life surveys than patients with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

  • At least one quarter of ME patients become housebound or bed bound, often for years. Many become unemployed.

Loss of job as disease progresses has dire economic consequences for patients, families, and the country as a whole, when considering the loss of productivity.

Ask most any person in the medical community if they heard of “ME” or “Myalgic Encephalomyelitis” and, guaranteed, almost all will answer, “No.”  Ask if they’ve heard of “Chronic Fatigue Syndrome” or “Chronic Fatigue” and more often than not, they will say, “Yes.”  But, they really have no idea at all what it is.  I speak from my own personal experience.  The many doctors I’ve visited over the last year, when asked, had the identical response.  Also, this type of response is reported by patients when questioned about their doctor visits.  Too often, they encountered uninformed and uncaring doctors.

Medical schools should begin instituting information about ME in their curricula.

Thank the CDC representatives for that great faux pas 30 years ago in Nevada, while investigating an outbreak, when they imprinted “Chronic Fatigue Syndrome” (CFS) on all patients, and which, unfortunately, stuck.

The ignorance shown in the face of a “mysterious” disease 30 years ago is continuing.

 

[Indented information is from #ME Action]

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#ME Where Are We?

 

During the first half of this year, there was much going on in the Health and Human Service (HHS) Department and regarding ME (Myalgic Encephalomyelitis):  we had the IOM’s (Institute of Medicine) outstanding, positive report (in my opinion) and then there was the P2P (Pathways to Progress) report.  The former was indicative of forward movement in the cause of ME and the latter, was not.

We’ve been ignored.

There were stand-offs, delays, and hidden refusals when the FOIA was used to obtain documents vital to the ME cause.

And where are we?  After all the hullabaloo and interviews of patients including Laura Hillenbrand, author of “Seabiscuit,” Jen Brea, co-developer of a movie, “Canary in a Coal Mine,” I ask again:

Where are we?

It looked like we had some strong headway for a while, in getting ME recognized as a VERY SERIOUS disease (which it is of course), and as such, needed MUCH MORE grant money from the NIH (National Institutes of Health) for some serious and more timely research.

As far as I can see, we are not much further along in our battle – yes, I said, “battle” – to get concrete help for our ME patients – in order to get them out of the greatest “funk” – in the world.  My choice of word – being polite.  I am totally frustrated, angered, impatient, sad, screaming inside.

People running and doing walks, making videos, giving speeches, begging Congress, growing gofundmes on the Internet, writing articles in popular newspapers and magazines, yada, yada.

Still, I ask, “Where are we?

 

 

 

Another Well-Known Talented Person Is Ill With ME

 

It’s been awhile since I’ve written a post as an advocate for ME (Myalgic Encephalomyelitis).  There are so many posts, tweets, google +, etc., reports of research and trials going around on the Internet, and many duplicates also.  It’s heartening to see the continuance of support and awareness.  The disheartening thing is that it all seems to do nothing to move and stir the huge grant pot of the NIH.

Today, I came across an article that got my attention.  It’s a blog by Brian Vastag, veteran and former science writer for The Washington Post.  It is addressed to Francis Collins, NIH Director.

Brian

Brian became ill with ME three years ago and is asking the NIH if it can “spare a few dimes.”  His blog is compelling, to say the least.

He starts off his letter to Dr. Collins with:

Dear Dr. Collins,

You might recall the last time we spoke. It was January 2013, and I was working as a science reporter at The Washington Post. Your people arranged an early call for you to announce that the N.I.H. had decided to retire most of its research chimpanzees. We spoke for about 20 minutes, and I typed up a 600-word story. It wasn’t very good.

http://www.lastwordonnothing.com/2015/07/14/dear-dr-collins-im-disabled-can-the-n-i-h-spare-a-few-dimes/

See also:

http://www.washingtonpost.com/people/brian-vastag