Tag Archives: ME/CFS

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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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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#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

 

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.

 

Two ME Sufferers Are Interviewed For An ME/CFS Awareness Video

Thanks to Tom Kindlon for this ME awareness video.  Two ME patients answer pointed questions from Dr. Franky Dolan, regarding their symptoms and how having an “invisible, multi-symptom disease” has affected all aspects of their lives.

What is striking in this video (9 minutes; 40 seconds) is the seemingly happy, carefree vibes given off from the two women by their laughter and body language – until they seriously answer the questions.  This “mask” is the common outward appearance donned by very ill people when they are with those who are not ill.

Sadly, Amberlin, the woman on the left, wearing sunglasses due to light sensitivity (common with ME), died by suicide a few years after this video was made.  The seriousness of, and debilitation caused by, myalgic encephalomyelitis, has resulted in many suicides.

 

May 12th: International M.E. Awareness Day

This is a huge Awareness week for ME (also Fibromyalgia and Multiple Chemical Sensitivities). Much preparation has gone into promoting awareness of this (ME) debilitating disease that takes patients’ lives away as they knew it before illness. I’m reblogging in order to continue promoting this disease so that more people might understand it. Well written.

Dead Men Don't Snore

This week is International M.E. Awareness Week, chosen to coincide with the birthday of Florence Nightingale who is thought to have suffered from M.E. during the last years of her life. It is also the Awareness Week for Fibromyalgia/FMS and Multiple Chemical Sensitivities/MCS: two commonly overlooked conditions that are often co-morbid to M.E.

Despite being an extremely common and disabling multi-systemic disease M.E. remains one of the most misunderstood, stigmatised and underfunded illnesses in the world today. So in honour of M.E. awareness day, I have compiled a list of facts the average person may not know about the disease:

  • M.E. is classified as a neurological disease by the world health organisation.
  • It affects an estimated quarter of a million people in the UK, 17 million worldwide making it twice as prevalent in the UK as MS and three times as prevalent as HIV or breast cancer.
  • M.E. affects both…

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The IOM Report – Key Facts

The synopsis report (Key Facts), released by the Institute of Medicine (IOM), captures the highlights of the rather long, full report.  If you wish to read the report in full, it is available for a cost.  There is a free download of the prepublished report, but it is difficult to read because the print is not clear, and enlarging the text makes it even more difficult to read.  Click here in order to be able to access the major parts of the report in pdf format (Adobe Acrobat Reader).  They are listed in separate sections at the upper left of the IOM site.

INSTITUTE OF MEDICINE

BEYOND MYALGIC ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME

FEBRUARY 2015 – Key Facts

What is the prevalence of ME/CFS?

1. ME/CFS affects 836,000 to 2.5 million Americans.
2. An estimated 84 to 91 percent of people with ME/CFS have not yet been diagnosed, meaning the true prevalence of ME/CFS is unknown.
3. ME/CFS affects women more often than men. Most patients currently diagnosed with ME/CFS are Caucasian, but some studies suggest that ME/CFS is more common in minority groups.
4. The average age of onset is 33, although ME/CFS has been reported in patients younger than age 10 and older than age 70.

What are the symptoms and other effects of ME/CFS?

There are five main symptoms of ME/CFS:
1. Reduction or impairment in ability to carry out normal daily activities, accompanied by pro-found fatigue;
2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort);
3. Unrefreshing sleep;
4. Cognitive impairment; and
5. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).

Other common manifestations of ME/CFS include:
1. Pain;
2. Failure to recover from a prior infection; and
3. Abnormal immune function.
4. At least one-quarter of ME/CFS patients are bed- or house-bound at some point in their illness.
5. Symptoms can persist for years, and most patients never regain their pre-disease level of health or functioning.
6. ME/CFS patients experience loss of productivity and high medical costs that contribute to a total economic burden of $17 to $24 billion annually.

What are the challenges in improving diagnosis and care for ME/CFS?

The cause of ME/CFS remains unknown, although symptoms may be triggered by certain infections.

Although there are therapies available to manage symptoms of ME/CFS, their efficacy is not known. There is no existing cure for ME/CFS.

There is an urgent need for more research to discover what causes ME/CFS, understand the mechanisms associated with the development and progression of the disease, and develop effective diagnostic markers and treatments.

Why is a new name for ME/CFS needed?

Several studies have shown that the term “chronic fatigue syndrome” affects patients’ perceptions of their illness as well as the reactions of others, including medical personnel, family members, and colleagues. This label can trivialize the seriousness of the condition and promote misunderstanding of the illness.

The term “myalgic encephalomyelitis” is not appropriate because there is a lack of evidence for encephalomyelitis (brain inflammation) in patients with this disease, and myalgia (muscle pain) is not a core symptom of the disease.

The Institute of Medicine (IOM) committee recommends the name systemic exertion intolerance disease (SEID) for this disease. This new name captures a central characteristic of this disease—the fact that exertion of any sort (physical, cognitive, or emotional)—can adversely affect patients in many organ systems and in many aspects of their lives.

PS:  I take great exception to the IOM panel’s finding that “there is a lack of evidence for encephalmyelitis (brain inflammation) in patients with this disease, and myalgia (muscle pain) is not a core symptom of the disease.”

To learn more, and to access the IOM committee’s proposed diagnostic criteria for ME/CFS, visit www.iom.edu/MECFS

Brain Inflammation – Its Similarity In Autism and ME

I follow “Onward Through the Fog,” a blog on blogspot, authored by Erica Verrillo, a talented person who suffers from ME (Myalgic Encephalomyelitis).  Her reports and research are top notch.

In this particular posting, Erica reports on the similarity of some findings affecting Autism and ME/CFS.  These findings have to do with brain inflammation.

A John Hopkins study acts as confirmation that excitotoxicity caused by chronic inflammation is central to autism.
activated microglia
Excitotoxicity has been put forth as a mechanism of ME/CFS by a number of clinicians and researchers, including Drs. Paul Cheney, Jay Goldstein, Morris and Maes, Martin Pall, and, most recently, Jarred Younger.