Tag Archives: chronic illness

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!

me

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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Gallery

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…

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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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.

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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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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