Category Archives: Health & Human Services

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.”

 

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#MillionsMissing Protest Coverage

 

Sept. 27th was a day of national and international protesting and recognition of #millionsmissingME, myalgic encephalomyelitis, is a greatly disabling, debilitating disease.

ME has been pushed to the sidelines for several decades by the HHS, CDC, NIH and governments around the world, as a figment of the patients’ imaginations.  The patients have been insulted with taunts and accusations that they are not really sick. Far from the truth.

We, advocates and patients who are able, must continue to make our voices heard.  We need more research and granting of funds by National Institutes of Health to continue and advance the research that has already been started by non-profit organizations with private donations.

We have lots to do to catch up and make up for the time lost and the lives lost along the way.  Millions are counting on the world to wake up and recognize ME as a devastating disease to the patients and families.

Please take a look at the site below to familiarize yourself with ME and what is being done to bring it to the forefront in the eyes of the world.

Protest Coverage

 

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The Election Isn’t The Only Thing On My Mind

 

At the top of my priority list is my daughter.

It was about 25 years ago, that she started noticing symptoms of loss of stamina, unusual tiredness, lots of pain, and seemed to be fighting low-grade flu-like symptoms every so often.  They were the types of feelings that we all just dismiss (was I really feeling so bad?) and go on with our lives, hoping those body signals of something “just not right” will go away.  And, to a point, they did, and no more thought was given.

But, every so often, they were there again.  Most times, they were almost unnoticed; other times, enough to force her to go about her daily activities of caring for her children, working full time, being a thoughtful, responsible person, by “pushing through” those symptoms, and then just falling into bed, exhausted.

This went on for so many years until about 15 years ago, when she was already living close by in Florida.  She came over for dinner one Sunday, with her then husband and her two daughters.  They arrived in late afternoon, before dinner time, and she told me she needed to lie down.  She was completely exhausted and just had to go to bed.  It was like an emergency, and I hurriedly prepared the guest room bed for her, and she practically fell into it as I closed the blinds.  She couldn’t move; and slept very soundly for hours.  When she got up, she didn’t feel refreshed, but she was able to dine with us and then they went home right afterwards.  It was from that point, that the symptoms would become more frequent and noticeable.

Going to work was and is not an option as of this past January 2016.  She really should have stopped work at least a year before.  Looking back, she kept up her pace with great difficulty because she was a single mom and her younger daughter was totally dependent on her, and she worried about finances.  She was living a physical, mental, stressful nightmare.

My daughter suffers with the disease that is the reason for the letter below which is circulating in the House of Representatives on behalf of MillionsMissing (a global movement for health equality) and is addressed to Dr. Francis Collins, Director of the National Institutes of Health.

Francis Collins, Director
National Institutes of Health
1 Center Drive, Room B1-126
Bethesda, Maryland 20892-0001

Dear Dr. Collins:

We write to thank you for your attention to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and encourage you to continue to strengthen the National Institutes of Health’s (NIH) efforts in ME/CFS biomedical research.

As you know, ME/CFS is a complex, debilitating, and chronic disease afflicting 1 to 2.5 million Americans. It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually. Yet, as the Institute of Medicine noted in its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness,” there has been “remarkably little research funding” to date to discover its cause or possible treatments.

A number of us sent you a letter in March of 2014 to express support for ME/CFS research and are heartened by your commitment to advance diagnosis, treatment, and a cure for ME/CFS through a reinvigorated Trans-NIH ME/CFS Working Group (Working Group) housed within the National Institute of Neurological Disorders and Stroke (NINDS), and new intramural and extramural research programs that will bring new investigators into the field.

We encourage the Working Group to consider in a timely manner the input received through its recent Request for Information (RFI) regarding emerging needs, opportunities, and strategies for ME/CFS research and research training. We also ask that you provide us with the current status of this planning effort and the specific intramural and extramural activities planned for the rest of FY 2016, 2017, and 2018.

Thank you for your attention to these critical issues. We look forward to your response.

Sincerely,

Zoe Lofgren                           Anna G. Eshoo
Member of Congress           Member of Congress

The U.S. House of Representatives is currently circulating the letter asking the NIH to strengthen ME/CFS biomedical research efforts. NOW, is the time to contact your representative to ask him or her to sign the letter.  Representatives have only until Wed., Aug. 31 to agree to sign the letter so action must be fast.

Here is a “Prevalence of Well-Known Diseases” comparison chart by state, which compares the number of people in each state that suffers from ME, HIV/AIDS, Parkinson’s (PD), and Multiple Sclerosis MS).  Myalgic Encephalomyelitis (ME) is quite short-changed as far as NIH funding, research and timeliness is concerned.

The following websites will be helpful if you had or will contact your U.S. Representatives:

http://www.meaction.net/wp-con tent/uploads/2016/08/Script- and-How-To-1.pdf

https://drive.google.com/file/ d/0B8cZyk4UDCJkQkhfWHJRbU1BZlU /view?usp=sharing

https://docs.google.com/forms/ d/e/1FAIpQLSd3mTxetR874PxJjDA1 AwLDPna9fSNcaKoIx- YnldwGxEerCA/viewform?c=0&w=1

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Are We Getting Closer To A Myalgic Encephalomyelitis Biomarker?

 

In #MEAction‘s latest announcement, we’ve learned that the National Institute of Allergy and Infection Diseases (NIAID) of NIH recently funded Dr. Derya Unutmaz’s latest grant application.  Dr. Unutmaz is the renowned immunologist at the Jackson Laboratory for Genomic Medicine.

[Dr. Unutmaz’s] research focuses on defining the optimal immune response and what happens during infection and chronic disease.

A few years ago Suzanne D. Vernon, PhD was introduced to Dr. Unutmaz, and knew his research focus was a very good fit for ME/CFS.  Dr. Unutmaz became intrigued with ME and the ongoing research to uncover its mysteries.  He decided to apply to the NIH for funding to expand the numbers of patient samples and types of quantitative analyses on the blood.

The National Institute of Allergy and Infection Diseases (NIAID) of NIH recently funded Dr. Unutmaz’s grant application. He will receive five years of funding – totaling $3,281,515 from the National Institute of Allergy and Infectious Diseases — to find better ways to diagnose and treat ME/CFS. Dr. Lucinda Bateman and Suzanne D. Vernon, PhD are Co-Investigators on this project and the Bateman Horne Center will provide the required blood samples and correlating clinical information for the participating samples.

alien

We need Myalgic Encephalomyelitis information taught in medical schools and information disseminated to all doctors.

For too long, research in ME/CFS has been lean and under-funded for several reasons, including the shortage of accurately diagnosed patients available for research studies. The Bateman Horne Center – a clinic specializing in ME/CFS/FM and with a large number of patients who have been carefully and accurately diagnosed, and continue to be treated effectively – will partner with Dr. Unutmaz so that a Research Ready Army of well qualified patients can participate in this exciting research.

Source:  $3.28 million awarded for ME/cfs biomarker study.

See also:  Bateman Horne Center

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[Alien image from bingdotcom]

 

The FDA Has Finally Unveiled The New Nutrition Facts Label

The FDA has finalized the new Nutrition Facts label on packaged foods with changes that will make it easier for consumers to make informed choices about what they’re eating.

What is new on these labels?

  • Servings:  Larger, bolder type
  • Serving sizes updated
  • Calories:  Larger type
  • Updated Daily Values (%)
  • New:  Added Sugar
  • Change in Nutrients – Required
  • Actual amounts of nutrients – Declared
  • New footnote

fda-nutrition-facts-label

It’s about time!!!

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HHS awards $94 million to health centers to help treat the prescription opioid abuse and heroin epidemic in America

In this post, I am addressing opioid addiction even though the article addresses heroin addiction as well.

Today, Health and Human Services (HHS) Secretary Sylvia M. Burwell announced $94 million in Affordable Care Act funding to 271 health centers in 45 states, the District of Columbia, and Puerto Rico to improve and expand the delivery of substance abuse services in health centers, with a specific focus on treatment of opioid use disorders in under-served populations.

Source: HHS awards $94 million to health centers to help treat the prescription opioid abuse and heroin epidemic in America

In my opinion, this may well be a waste of much of this money.  What kind of oversight will there be?

This $94 million investment is expected to help awardees hire approximately 800 providers to treat nearly 124,000 new patients.

124,000 new patients is just a drop in the bucket of the amount of opioid addicts, thanks to Big Pharma and the indiscriminate prescribing by doctors.  This lovely bundle of cash will result in lots of nepotism and greed; it’s almost guaranteed.

Medical marijuana is the answer, in my opinion, for pain relief.  It pummels my brain to see opioid addiction resulting from the “pill-pushing” medical community, and marijuana is still a Schedule 1 inhabitant.

Another huge waste of taxpayers’ money.  I pray that I’m wrong with this assumption because there are hundreds of thousands, if not millions, of people who are addicted due to the easy way out by the doctors who supposedly were “helping” their patients.

 

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Cannabis And Opioids From Canada To HHS To Florida

Canada seems to be progressive where cannabis is concerned; whereas, Florida is trying very hard(?) to get out of the dark ages – maybe not hard enough, in my estimation.  And in between, we have our Health and Human Services (HHS).

pot-708x350@2x

The Weed Blog, so aptly managed by Johnny Green, is a wealth of current informative articles about cannabis, as well as about cannabis books, testing, growing, recipes and strain reviews.

The article that recently caught my eye was “Canadian Researchers: Use Medical Marijuana Instead of Opioids For Neuropathic Pain.”  In this blog post, Johnny states:

Using opiods for pain is a hard thing for many people. Sure, the painkillers provide temporary relief from pain, but the side effects can be horrific. They tear up your organs, and often times lead to a level of addiction that ruins lives. If only there was another medicine out there that was effective that didn’t come with all of the problems.

And, he goes on to say:

Medical marijuana is a proven form of treatment for pain, specifically neuropathic pain.

Recently researchers in Canada started pushing for Canadian doctors to substitute opioid based painkillers [with] medical marijuana.

Now, doesn’t that make sense?  Thanks, Johnny.

If anyone is interested in knowing about some of the possibly addictive prescription drugs that medical marijuana could replace, click on this link.

In contrast, our own HHS, under the “leadership” of Sylvia Burwell, is “Taking New Steps To Combat Opioid Use Disorder.”  In Secretary Burwell’s first sentence she states:

Blair [Hubbard] fought back from an addiction to heroin and prescription opioids that nearly took her life.

And Burwell goes on to say:

Blair struggled for many years with her addiction, and today, families and communities across our nation are struggling. And too many Americans who have watched a friend or loved one struggle with opioid use disorder have witnessed the toll of this epidemic. [disorder?]

OK, Blair was addicted to heroin.  That’s one thing.  We don’t know which came first but, the point is, she was also addicted to opioids.  Prescriptions were obtained from doctors who kept prescribing ad infinitum, until she was at risk of being  “overdosed.”

Of course, now, if someone is at risk of being  “overdosed” on opioids, there is help!  A fantastic solution:  Another prescription is available for a drug called “naloxone.”

Secretary Burwell informs us that:

A drug called naloxone has been proven to reverse opioid overdose, and save lives.

Naloxone could be a dangerous drug itself.  There are caveats for its use.  Click here to find out about it.

This whole thing is so ridiculous, that I’m not going to continue talking about opioids and her anymore.  In my mind, she is a total “negative.”  This is “Sunshinebright blog” and I refuse to be negative.

Now, about Florida:

The medical marijuana law that was passed in 2014 has been in a state of flux.  The Florida State Legislature ended their session in the Spring without any further action in that regard.  It’s in the hands of the Florida State Supreme Court.

Perhaps and hopefully, in the 2016 election, we will be able to pass a Constitutional Amendment for Medical Marijuana.  Supporters of the Amendment are working hard – collecting petitions and money – to make sure it will be on the ballot next year.  The law that is now languishing is probably going to continue in that position forever.  Just sayin’.

If you live in Florida, and haven’t yet signed the petition to put the Medical Marijuana Amendment on the 2016 ballot, click here to download and print the blank petition from a pdf file.  Instructions about where to mail it are on the document.

Ending this post with a positive attitude:

“Smile, even if you don’t feel like it, and your world will appear brighter.”

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The Haze Around Our Bodies – Germophobes Beware!

 

I subscribe to a myriad of newsletters as many do – among them are those that are aimed at health issues.

One article that I read today, issued by HHS, caught my attention.  Did you know that our bodies emit bacteria into our surroundings, whether we are stationary or moving?  And that they can be detected and identify us from among other people?  We emit a “microbial cloud.”  Who knows?  Fingerprints may be a thing of the past in crime investigations!

bacteria

A University of Oregon study found that people emit some of their microbiome in a kind of haze around themselves.

In the study, author James Meadow’s team tested the air around 11 different people while they were each placed alone in a sealed, sanitized chamber. (Bold added)

The researchers found that the presence of most of the people could be sequenced and identified within four hours of leaving the chamber — just by the cloud of bacteria in the air they had left behind. (Bold added)

Different combinations of several groups of bacteria commonly found on and in humans are the key to distinguishing individuals, the research team said. Key species were Streptococcus, usually found in the mouth, and skin germs such as Propionibacterium and Corynebacterium.  (Bold added)

Our results confirm that an occupied space is microbially distinct from an unoccupied one,” Meadow said, and “demonstrate for the first time that individuals release their own personalized microbial cloud.”  (Bold added)

The findings may help improve understanding of how infectious diseases are spread in buildings, or even offer new ways to identify crime suspects, the researchers said.  (Bold added)

 

[Bacteria image from bingdotcom]

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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]

[Image is from bingdotcom]

#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?