Tag Archives: awareness

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…

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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Profoundness In Aisle 5

I am happy to reblog Cher’s lovely post regarding profoundness, on her blog, “The Chicago Files.”  Openness and self-awareness come into play here, also. Please give your experiences with kindness and how others’ or your own, have “made your day.”

The Chicago Files

Kindness Quote

The other day I wrote a post regarding the way our perceptions can lead to assumptions which may or may not be correct.  Quite often our assumptions are based on our own biases and life experiences.

After writing the post, I started thinking about how often we allow the actions and words of others to affect our moods, our feelings, and generally, our experiences.  If someone makes a negative, inaccurate assumption about us, logically we can tell ourselves, oh, that’s just them; they don’t know what they are talking about.

But if we allow it to somehow become personal, thinking that something about us isn’t quite right, we really do ourselves a disservice in carrying a burden that truly doesn’t belong to us.

Several months ago I was in a store in downtown Chicago.  I hadn’t been in this particular store before, so I wasn’t quite sure where this, that…

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Florida’s Slow-Moving Medical Marijuana Bill

 

It was in 2014, that Florida’s legislature passed a medical marijuana bill – please see my previous post on Florida’s medical marijuana bill.  And, to date, no one has been helped.

One of the things holding it up is the fact that only 5 growers would have been allowed to grow the specific Charlotte’s Web strain under the current law.

A bill proposed for the 2015 legislature session never got a hearing.

Another bill has been filed for the 2016 session.  Supposedly, that limit of number of growers would be removed; and currently, only cancer patients and seizure sufferers are covered.  The number of eligible diseases would be increased.  Those that would be added include:

  • HIV/AIDS
  • MS (multiple sclerosis)
  • Lou Gehrig’s disease (ALS – amyotrophic lateral sclerosis)
  • Crohn’s disease
  • Parkinson’s disease
  • or any terminal illness.

Of course, the thing bogging down the implementation of the current law is RED TAPE.  So, what else is new?  The Florida Department of Health is in the fray, and nursery owners’ litigation is attempting to position their companies in the small “pot” of eligibility.

As you can imagine, families of sick members are keenly frustrated and angry with these legislative shenanigans while their ill family members of all ages are crying out for relief from their debilitating, painful symptoms.

Will we ever see a medical marijuana bill coming out of the Florida legislature?  Last year’s legislature passed that 2014 bill, hoping to have the “topic” done with. The passage was timed to take place before the last mid-term election.  They believed there was a great possibility that the voters would pass the amendment to the Florida constitution.  As it turned out, the voters missed out on that passage by approximately 2% of the required 60%.

There is a difference between passing a bill into law, and having the voters pass an amendment to the state’s Constitution.  A big difference!  A law can be changed at the whim of the state’s legislature at any time; however, an amendment needs to be added by the state’s voters.  The Florida legislature would rather keep control of the medical marijuana “problem,” and be able to change at will.  That’s why that legislative body wanted so desperately, to be able to pass a law and not wait for a possible state constitutional change.

Things are looking very good for the passage of an amendment in next year’s election.  More on that in another post.

 

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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.

[Images from bingdotcom]

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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?

 

 

 

Out Of The Mouth Of A Marijuana User

 

Cyd Maura, is a responsible woman, a marijuana user, well educated, and no one would ever think she was a “stoner.”

Her short video explains her experiences and beliefs:

 

14 Wonderful, Unique and Funny Ways Kids Have Explained Disability

My granddaughter has Asperger’s on the Autism Spectrum. This post is a celebration of her and all the other kids who have what are known as “disabilities.” But, these kids DO NOT believe they are disabled. You will laugh at their senses of humor! 🙂

kraftycatcreations

-Fern

**************************************************************************

http://themighty.com

At The Mighty, we know that sometimes kids can offer us a brand new perspective on the world. So, we decided to ask our readers who are parents to share some of the wonderful, unique and funny things their kids have said about their disability.

These were your answers:

1. “‘I’m not Autistic, I’m Cara.’ My now 9-year-old daughter said that when someone called her autistic instead of saying she had autism. Well played, baby girl. Well, played.” – Kim Vivanco

2. “My cousin says she has ‘Up syndrome’ because she’s happy, not sad.” – Cassie Collins

3. “My oldest son is in fourth grade…

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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