Category Archives: Centers for Disease Control and Prevention

20th Anniversary Celebration of Osler’s Web

 

This 20th anniversary celebration of Hillary Johnson’s “Osler’s Web,” garnered dozens of media outlets’ coverage and comments by prominent people. Osler’s Web is Johnson’s documentary of the discovery of, and subsequent governmental treatment of, those terribly suffering patients with ME – myalgic encephalomyelitis, a multi-faceted symptom disease (also known as “chronic fatigue syndrome” (CFS) which is a misnomer and mistakenly gives the impression of a simple fatigue – which ME is not!). It is not an easy read but, to read it, will give you a real understanding about this greatly disabling disease and why it is so easily dismissed by those ignorant of, and unwilling to accept, its severity.

The following comment by a spokesman for the CDC (part of the NIH), government agency that is prominently mentioned in Osler’s Web), requires a looksee because it shows the historic illegal, harmful, negative and dismissive attitude of the CDC (Centers for Disease Control and Prevention} :

“Tom Skinner, a spokesman for the CDC, said his agency has gotten numerous inquiries about the allegations raised in Ms. Johnson’s book but is neither investigating them nor commenting on them. ‘We have not reviewed her book, and will not comment on her book and are not going to,’ Skinner said.”
— Dave Parks, Birmingham News

From the New York Times Book Review:  “Ms. Johnson’s book describes an important piece of recent medical history that might never have been recorded if it weren’t for her efforts.  Her carefully researched tale leaves us pondering the progress of medicine.”

Michael Kenney, Boston Globe:  “…a compelling, valuable story that takes the reader into the petty, back-stabbing world of high-stakes medical research… In Johnson’s hands, (the) cast of doctors and researchers, heroes and villains, takes on distinct personalities, and it is the interaction among them that moves the story unflaggingly along.”

Sam Husseini, In These Times:  “Ultimately, Osler’s Web tells the story not of one particular ailment and the havoc it wreaks on the human immune system, but rather the defects in our national immune system—the CDC and the NIH—which the world looks to for leadership.”

There are many more reviews at “Osler’s Web.”

 

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

 

Advertisements

The DEA Is At War With Chronically Ill Patients – Again

An article on Forbes.com, written by David Kroll, caught my attention.

kratom plant

The Kratom Plant

First, it was and still is, Cannabis.  Now, it’s another plant.  A natural medicine – not artificially-produced, addictive, pain killers and human killers, known as “opioids,” by Big Pharma.

The U.S. Drug Enforcement Agency has filed a notice of intent (PDF) to place the southeast Asian plant called kratom to the most restrictive classification of the Controlled Substances Act. The plant, Mitragyna speciosa, and its two primary constituents, mitragynine and 7-hydroxymitragynine, will be temporarily placed onto Schedule I on September 30, according to a filing by the DEA today.

Mr. Kroll also states:

Various forms of kratom and teas made from the plant’s leaves are sold in cafes and on the internet. Their primary effect is to provide a short-lived peaceful and calm feeling that is described as pleasant. Consistent with this effect being opioid-like, anecdotal reports indicate that some users have used kratom to successfully recover from physical and psychological dependence on prescription opioids and heroin. Comments on my last report on kratom have also indicated the successful use of teas made from the plant in managing chronic pain without the side effects and addictive potential of prescription opioids like oxycodone, hydrocodone and morphine.

Research has shown why kratom might be a useful and safer alternative to prescription opioids:  its inherent alkaloids, metabolite and an oxidation product in the plant, minimize the opioid receptors in the body.  If the opioid receptors in the body’s cells were not reduced by not consuming kratom, you would have normal body’s “tolerance and dose escalation commonly seen with prescription opioids.”

Thank the CDC (Centers for Disease Control and Prevention – Its main goal is to protect public health and safety through the control and prevention of disease, injury, and disability) for “protecting public health” in this case; (as in the case of Cannabis – Marijuana) as well.

Last month, the CDC came out with a report that kratom “can be abused and that poison control centers have received over 660 calls between 2010 and 2015 regarding kratom intoxication.”  The report stated the plant kratom, had a “stimulant effect” and was “an opioid substitute.”  Opioids are suppressants.  How can kratom be an “opioid substitute” when it has a “stimulant effect”?  How can a plant be an opioid substitute when it actually lessens the effect of an opioid?  The plant lessens the dependency on opioids.

No scientific testing was done.  The DEA has acted only on CDC’s reports of use of kratom which showed:

  • Medical outcomes associated with kratom exposure were reported as: minor (minimal signs or symptoms, which resolved rapidly with no residual disability) for 162 (24.5%) exposures;
  • Moderate (non-life threatening, with no residual disability, but requiring some form of treatment) for 275 (41.7%) exposures; and
  • Major (life-threatening signs or symptoms, with some residual disability) for 49 (7.4%) exposures;
  • For 173 (26.2%) exposure calls, no effects were reported, or poison center staff members were unable to follow up again regarding effects.
  • One death was reported in a person who was exposed to the medications paroxetine (an antidepressant) and lamotrigine (an anticonvulsant and mood stabilizer) in addition to kratom.

The Drug Enforcement Administration includes kratom on its Drugs of Concern list (substances that are not currently regulated by the Controlled Substances Act, but that pose risks to persons who abuse them), and the National Institute of Drug Abuse has identified kratom as an emerging drug of abuse.

Among calls reporting use of kratom in combination with other substances (multiple exposures), the most commonly reported other substances were ethanol, other botanicals, benzodiazepines, narcotics, and acetaminophen.

Aspirin is a drug that could be abused; Tylenol (acetaminophen), Naproxen and Ibuprofen are drugs that could be abused.  Anything taken in huge doses, which are now “safe drugs” could turn into abusive drugs.  If a person’s intent is to inflict harm, it can be accomplished.

The last sentences of the CDC report are:

Kratom use appears to be increasing in the United States, and the reported medical outcomes and health effects suggest an emerging public health threat. Members of the public and health care providers should be aware that the use of kratom can lead to severe adverse effects, especially when consumed in combination with alcohol or other drugs.

The CDC report was based on 660 reports between 2010 and 2015 across the 50 states; more than half of which showed no harm or very little harm to those who consumed kratom.  I believe this is going “a little” overboard.

It is plain to me that the DEA and CDC are doing everything they can, to protect Big Pharma, even when it makes sense to only the DEA and CDC, for which we, with our tax dollars, are paying through the nose.  Again.  Yet.  Still.

Source:  Article by Forbes contributor, David Kroll

[Image of Kratom plant from Forbes.com]

[ 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 ]

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 ]

Simply Looking At The Differences Between AIDS and ME

Today, I came across an interesting article, dated January 12th, 2012, written by Vincent Racaniello, at the time Professor of Microbiology and Immunology at Columbia University.  In preface, I have always wondered why the AIDS epidemic drew such huge attention in the public, media, scientific and governmental areas, and ME/CFS was pushed under the rug, so to speak.

Of course, I can’t dismiss the fact that the AIDS epidemic caught the attention of the show business community, since it was in this venue that the infection became a highlighted problem.  Big names in Hollywood and other celebrities, took up the cause to raise funds for research in the 1980s, and the government was caught up in the hurricane-like fanfare.

Acknowledging that the HIV infection was extremely contagious to others, and that, in the beginning of the outbreak in the US, almost half of the patients died rather quickly; patients with Myalgic Encephalomyelitis and/or Chronic Fatigue Syndrome (a misnomer and huge insult to patients) are not contagious to other people.  IMHO, ME sufferers are contagious to their own bodies; bodies that are losing the raging battle within.

But, I digress.  The article, part of which is quoted below, states very clearly, the differences between AIDS and ME/CFS as diseases, and how the scientific community and the US government departments (mostly the CDC in the beginning) did not take the seriousness of ME/CFS to heart.  At the same time as the outbreak of AIDS in the 1980s, the CDC diagnosed ME/CFS as a psychological illness, dubbed it “CFS,” and diverted research funds to other areas.  Until then, it was correctly called ME – Myalgic Encephalomyelitis, by the World Health Organization (WHO).

Here is the quote:

In contrast to their excellent work on AIDS, the CDC has stumbled when tackling CFS. The CDC has dismissed evidence that CFS is an organic disease, and spent funds on investigating psychiatric and trauma-related causes, rather than infectious origins. The agency also diverted funds designated for CFS to other programs. These and other missteps alienated the CFS patient community—the opposite of what the agency accomplished with the AIDS community.

CDC

In part due to the standardized case definition of AIDS, identification of a candidate virus was relatively rapid. Determining its role in the disease was facilitated by the development of a blood test, which could be used to prove that HIV-1 caused AIDS. The relationship between HIV and AIDS was further confirmed by the development of antiviral drugs that inhibited viral replication and helped alleviate the symptoms of the disease.
Why have investigators failed to identify a virus behind CFS? (It is not due to the lack of appropriate technology; this has improved substantially since the 1980s with the development of polymerase chain reaction and rapid DNA sequencing.) One explanation for this dilemma is that an infectious agent does not cause CFS. However, there is plausible evidence for an infectious etiology, including observations that the disease is known to occur in outbreaks. Furthermore, in many cases the onset of symptoms appears to begin with a flu-like illness. Additionally, CFS is a heterogeneous disease, and may be caused by several different agents or a combination of viruses and non-infectious conditions. Another possibility is that an infection initiates an immune response that spirals out of control, leading to CFS symptoms. This scenario implies that at least some CFS patients have underlying deficits in immune regulation. If that’s true, it will be very difficult to identify the virus involved because it will likely have been eliminated from patients’ systems by the time CFS symptoms become apparent.
In retrospect, it is clear that the properties of AIDS made it an easy disease to understand. While the path to understanding CFS has been clouded by non-scientific issues, in the end the main reason why we do not understand this disease is because it is extraordinarily complex. But that never stopped a good scientist.
The only thing that stops a good scientist is the lack of funding.

Brain Scans Yield Clues to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Findings might help doctors diagnose the baffling condition.

 

It’s not a secret that ME/CFS is a very difficult illness to diagnose.  Patients presenting multi-symptom complaints are often misdiagnosed or labeled as hypochondriacs.

There are clear differences in the brains of people with ME/CFS and the brains of healthy people, new research indicates.  One of the many symptoms is inflammation of the brain, shown by MRIs.

ME/CFS affects up to 4 million people in the United States alone.  This assessment (updated from a year ago’s 1 million) is reported by the U.S. Centers for Disease Control and Prevention (CDC).

The History of M.E (Myalgic Encephalomyelitis)

The History and Present of M.E (Myalgic Encephalomyelitis)

[Myalgic Encephalomyelitis]/ Chronic Fatigue Syndrome is one of the greatest scientific and medical challenges of our time,” said the study’s senior author, Dr. Jose Montoya, professor of infectious diseases and geographic medicine, in a Stanford report.

ME/CFS patients in the U.S. number more than MS and AIDS patients added together, yet, government funding for MS and AIDS research has been 4 times that of ME/CFS in recent years!

Despite the HHS, CDC, NIH et al’s negative and misguided attitudes of the last several years, and particularly the problems with IOM (Institute of Medicine) and P2P (Pathways to Prevention) Workshop, I have the distinct impression that there is more focus on finding a solution to the problems of ME/CFS than ever before.

Research in Nevada, and California is getting ramped up through mostly private funding.  If we depended upon the HHS’s funding up to now, nothing would be progressing in the necessary research; in fact, HHS has been doing everything it can to prevent progression in research.  My past posts on M.E. Advocacy will shed light on that.

The very active WordPress, Blogspot (Google) blogs and Twitter accounts of ME/CFS patients and advocates that I find, proves that we (ME/CFS patients and advocates) are not sitting on our hands in this fight.

As sick as so many patients and patient-advocates are, there is an inner strength (digging very deep down to find) that keeps everyone pushing to their limits and beyond.  And, they suffer physically for it for many days, weeks, months or even years.  More than 3 decades of being pushed aside and told “it’s all in your head and go see a psychiatrist for your depression” means it must stop.  NOW.

 

[Image from bingdotcom]

 

 

 

 

 

 

 

Invisible Chronic Illness Awareness Week – Sept 8-14

Today is the beginning of “Invisible Chronic Illness Awareness Week”

invisible

There are many “invisible illnesses.”  Chronic means the illness doesn’t go away.  The person suffers 24/7.  But, most times, if you look at the patient, you wouldn’t know that person had an illness.  “You don’t look sick.”

chronic

The Centers for Disease Control and Prevention states, “As a nation, 75% of our health care dollars goes to treatment of chronic diseases. These persistent conditions—the nation’s leading causes of death and disability—leave in their wake deaths that could have been prevented, lifelong disability, compromised quality of life, and burgeoning health care costs.”

Here are some “invisible chronic illnesses” that you probably recognize:

Anemia;  Asthma; Autism; Cancer; Celiac disease;  Crohn’s disease; Diabetes, types 1 and 2;  Fibromyalgia; Lupus; Lyme disease; M.E. (Myalgic Encephalomyelitis); Osteoarthritis; and RA (Rheumatoid Arthritis).

I have listed these particularly because they are the most “invisible.”

choose to find joy

Chronic illness is “life-altering.”  Without going into too much detail, here are ways in which patients have to make life changes:

Those who suffer from any of these illnesses, have to make changes in their daily lives; and those who are severely ill, in their “activities of daily living” (ADL), which means the usual, normal and simple activities that we who are not ill, take for granted.  For instance, showering or washing hands or face or toileting or standing or walking or brushing your teeth are difficult at best, or not possible at all due to body weakness.  These are the simple things that most of us, who are healthy, take for granted:  we get out of bed, walk to the bathroom, and, without thinking about it, take care of our daily hygiene necessities.  Changes in eating patterns; taking new medications; cessation of social activities, and even job loss, are just some other life-altering occurrences.

And these patients still “don’t look sick.”  It’s all within:  inside, where the internal havoc is zooming (varoom!) along like a souped-up Harley-Davidson in a ’round the world race, and when reaching the finish line, goes through it and starts all over again – non-stop.  There are no waving flags; no hurrahs; no congratulations and no back-slapping and no flashes of cameras taking photos for the global news.

These patients are the courageous heroines and heroes of a different order:  Invisible Chronic Illness.

invisible disabilities logo

New Video on M.E. (Myalgic Encephalomyelitis) Research by Prof. Jason of DePaul University

Tom Kindlon, based in Ireland, has been providing updates on various aspects of the study of M.E. (myalgic encephalomyelitis).  I follow him on Twitter.

Below is the latest video, which actually is the first in a new series.  It is mainly about the random-digit population study Prof. Leonard Jason did in the 1990s.  He found that M.E. was much more common than previously thought and affected all groups.  It wasn’t “Yuppie Flu.”

Prof. Jason, based in the DePaul University in Chicago, also makes a statement in this video regarding the “flawed” early CDC research, and its statement on its findings.  (This is one of at least 2 that I personally, just recently, have read about CDC’s problems with research and its deleting harmful (to the CDC’s reputation) reports from its data base.  Is this the organization that is supposed to be protecting the health of the citizens of the United States?)

In this webinar Prof. Jason presents himself and talks about his experience with ME by straightforwardly answering five questions put to him.  There are German sub-titles for German language speakers.

Here is the video (6 minutes 23 seconds):

Video questions:

0.37 How did you get involved in ME?
1.51 What kind of research did you do regarding ME?
2.58 What are the most important discoveries you made?
4.06 What research are you into currently?
5.01 Is your research psychological and/or physiological?