Category Archives: Myalgic Encephalomyelitis

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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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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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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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…

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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ME/CFS – Myalgic Encephalomyelitis. “It Is Biological, Not Psychological” Per Dr. Mady Hornig

 

If you haven’t viewed the following video, showing Mady Hornig, MD, director of translational research at the Center for Infection and Immunity and associate professor of Epidemiology at Columbia’s Mailman School, speaking about their findings, now is a good time to do it.

According to Dr. Hornig, there is biological evidence, determined by the levels of 51 immune biomarkers in blood plasma samples taken from 300 ME/CFS patients and compared with 350 healthy people as controls, proving this is a disease.  These findings are the evidence which strongly support hers and her team’s beginning assumptions.

Dr. Hornig devotes some time in the short video to describing how patients have trouble getting a diagnosis; and many times, they go for from one year to up to 10 years before they find a doctor who will give them their diagnosis.  Uninformed doctors and clinicians cannot understand the disease; in fact, many have not heard of it.  Others deny that these patients are sick.

This is not news to patients suffering from ME/CFS.  They, more than anyone else, know their sufferings are not imagined.

Dr. Hornig’s conclusions are just the beginning.  There are many highly qualified scientists and researchers who have come forward, and more are coming forward, and have started their search.  Since this disease (IT REALLY IS A DISEASE!) has many symptoms and affects literally every system in the body, the job of finding biomarkers that can be established as definitive causes, is monumental, and not for the slight of heart.

If the NIH (National Institutes of Health) would have granted and will grant more funding for ME research, we would have been so much more ahead in this very important research.

Listen to Dr. Hornig’s short (2 minutes) report, in which she clearly states the problems of the disease as they affect patients, and the results found in her research.

 

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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

 

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.