Tag Archives: advocacy

The Physically Disabled in the US Are Overlooked by Colleges

dis clip art

Psychology students in U.S. colleges are educated about the minority group of the disabled, the least.  Oh yes, the mental illnesses are the main focus, but according to a study published by the “Society of the Teaching of Psychology,” and authored by Kathleen Bogart, an assistant professor of psychology at Oregon State University:

“We are not properly preparing students to interact with this group.”

“Overall, the study found that all of the colleges in the analysis offered classes on psychiatric disabilities, but just eight had courses focusing on physical disabilities though such issues are more common.”

“Courses tended to take a medical approach, focusing on diagnosis, treatment and cures rather than looking at social issues like coping, acceptance, prejudice and policy implications.”

When a disabled person seeks to join the mainstream of life, he/she does so with the expectation of being accepted for what he/she can do, not for what they cannot.  Unfortunately, whether the disability is obvious or not (hidden – “you don’t look sick”), the majority of the “normal” population is sidelined and doesn’t know how to react to people who are considered “different.”

Not all disabled persons are outwardly disabled – they don’t wear a sign saying, “I am disabled.”  There are many diseases that humans suffer that cannot be discerned just by looking at the patients.

When the disability is found out, a series of circumstances or occurrences can begin to happen.  People will stare; they will be afraid to have conversation; they will ignore; they will assume the disabled person cannot behave or converse in a “normal” way; they lose trust and confidence in the person’s ability to perform the tasks.  The worst part is that the disabled person can be made to feel like a pariah; a person who is unworthy; a person who is not a person at all.

Many disabled persons seek the assistance of psychologists, or “counselors” or “therapists” in order to discover ways to deal with their disappointment, and the prejudice, the discrimination, and yes, the open hostility.

If psychologists are not taught how to counsel people with physical and medical disabilities, in addition to mental problems, when confronted with the above reactions to their disabilities, how can help be forthcoming?

There are many areas lacking attention in the U.S. universities’ educational programs, and more attention and a proactive approach by the psychology and medical advocacy communities should be given to this problem.

[Header image from:  http://www.freewebheaders.com]

[Disability clip art from:  bingdotcom]

 

 

Assuring Quality and Standards in the Cannabis Laboratory

Question:  How can a medicinal marijuana patient or a recreational user have assurances that the cannabis product he/she is purchasing is safe and is actually the one prescribed or desired, no matter in which state the product is purchased?

Answer:  A cannabis chemistry committee was established last year and has now become a subdivision of the American Chemical Society (the largest chemical society in the world).  Of course, this will take work and time in order to establish central cannabis laboratory regulations,  creating precise standards which, hopefully, would eventually require adherence to by all laboratories.

cannabis

According to an article in Culture Magazine, there are no standardized procedures at the present time and this has created a safety concern throughout the cannabis industry as well as for the users of the cannabis products.  Standard methods of production and screening for pesticides is a great concern.  The formation of this subdivision, under the jurisdiction of the Chemical Health and Safety division, is a progressive step in the direction of safety for the cannabis industry.

 

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.

View original post 134 more words

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.

[Image from bingdotcom]

[ Header image from http://www.freewebheaders.com ]

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.

[ Header image from http://www.freewebheaders.com ]

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.

 

[ Header image from http://www.freewebheaders.com ]

 

Valentina, The Whale, Is Saved

I came across a wonderful video of the saving of a whale!  The rescuers were members of The Great Whale Conservancy.  While boating in the Sea of Cortez, they happened upon a young female humpback whale that they thought was dead.  There was no movement.

When they got closer, the whale blew air out of her blow hole.  She evidently was signalling she was in distress.

I was so glued to the 8-minute video, that I was almost holding my breath while watching the heroic efforts on the part of the boaters.

Michael Fishback, one of the founders of the Conservancy, narrates the encounter.  It was discovered that that poor whale was grossly entangled in a fishing net, which prevented her from moving.

Their website is http://www.greatwhaleconservancy.org and please join them in helping to save these magnificent animals.

[ Header image from http://www.freewebheaders.com ]

 

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.

 

[ header image from http://www.freewebheaders.com ]

 

267% Price Increase for Ampligen

Ampligen’s manufacturer really doesn’t want the clinical trials to continue; otherwise, why would they slap on a 267% price increase? From $15,600 to $41,600 per year? It may be impossible for trial participants, who have uprooted their lives and their families’ lives, and moved to where the trials are being held, to continue.

Please read the following letter that Jeannette Burmeister wrote to Dr. Janet Woodcock, the FDA’s Director of the Center for Drug Evaluation and Research. asking for reasons and answers about this unbelievable price increase by the manufacturer, Hemispherx Biopharma, Inc.’s (“HEB”).

Thoughts About M.E.

I just sent the following message regarding Hemispherx’s extraordinary 267% price increase for Ampligen to Dr. Janet Woodcock, the FDA’s Director of the Center for Drug Evaluation and Research:

Dear Dr. Woodcock,

I am writing to you regarding a matter of grave concern for the patients in Hemispherx Biopharma, Inc.’s (“HEB”) AMP-511 open-label clinical trial for Ampligen, a drug highly effective for many ME (or as the FDA calls it “ME/CFS”) patients. I have testified at the Ampligen Advisory Committee meeting and other federal committee meetings in favor of FDA approval of the drug and I remain convinced that this drug should be approved by the FDA without further delay because many patients would benefit from it and because there are no other FDA-approved pharmaceutical interventions for ME.

I have been a study participant for over three years. Last night, I learned through ME Action’s blog (http://www.meaction.net/2015/08/10/ampligen-price-increases-substantially-available-soon-in-europe/) that the…

View original post 545 more words

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]

[Header image from http://www.freewebheaders.com ]