Category Archives: Health Issues

Solve ME/CFS Initiative Takes Part in #MillionsMissing Protest

 

Solve ME/CFS Initiative President Carol Head said that following last year’s Institute of Medicine report, there is no reason for the federal government to drag its feet on aggressively funding research on the disease.

“It is the role of NIH and CDC to care for the health of their citizens, and the health of those citizens is currently being funded by ourselves for ourselves,” Head said.

The protest included a series of demonstrations by ME/CFS patients and their loved ones at locations around the country and across the world, including: Washington, D.C., San Francisco, Philadelphia, London, Melbourne, Seattle, Atlanta, Boston, Dallas, Raleigh, Canada, the Netherlands and Belfast. Protesters in D.C. assembled outside the Department of Health and Human Services (HHS) headquarters. Other U.S. protesters assembled outside the regional HHS offices.

seattle netherlands canada

Millions Missing demonstration in Washington, DC.  (Photo by Mary F. Calvert)

#MillionsMissing demonstration in Washington, DC. (Photo by Mary F. Calvert)

The shoes represent the active lives lost by the owners of those shoes due to being stricken with this devastating disease.

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[Video and photos from Solve ME/CFS Initiative]

Discrimination By Insurance Companies Against The Chronically Ill

 

Despite the Affordable Care Act (ACA), commonly called “Obamacare,” and its requirement that medical insurance companies accept those with pre-existing conditions, insurance companies have found ways to deny services while keeping their eyes on the bottom line at the expense of those patients who are the most vulnerable.

An article by Angela Ostrom, published in Newsweek, points to the denial of quality coverage to patients with epilepsy, cancer and a host of other chronic conditions.  New and creative ways are found in which medical insurance companies could “skirt around” the lawful charge and focus of the ACA.

“One common strategy is to design plans so that medications for conditions like epilepsy, cancer [ME, fibromyalgia, lyme disease and others] and HIV/AIDS are all but unaffordable.”

“Federal rule makers are set to change that. They’re attempting to prevent insurance companies from denying quality coverage to patients with epilepsy, cancer and a host of other chronic conditions.  If they succeed, they’ll have, at long last, achieved one of the ACA’s most important goals:  ending discrimination against sicker patients.”

It is widely known that Big Pharma is getting rich upon the backs of unfortunate sufferers of chronic and/or serious and life-threatening illnesses.  These patients have huge medical and prescription costs – a greater percentage than those of us who are blessed with good health.  The more ill the patient is, the higher their cost of medical care, of course; however, the more ill the patient, the less income.  A paradoxical situation, but that’s the truth of it.

“The ACA bans insurers from outright refusing to cover people with pre-existing conditions. Unfortunately, that provision didn’t actually stop insurance companies from turning away chronically ill patients—it just forced them to find new and creative ways to do so.

Cutting back on prescription medication.  It's too expensive.

Cutting back on prescription medication. It’s too expensive.

“Insurers place many or all medications for a particular condition on the highest “tier” of their drug formularies—the lists of medicines patients are allowed to take, or off the formulary altogether. For medications in the highest tier, individuals are often required to cover 40 percent—or more—of the total cost.”

“Sadly, this technique for raising the cost of essential and often lifesaving therapies is now standard.”

There are other tactics that medical insurance companies use in order to make it more difficult for very ill patients to get the medication and care they need.  Too many patients don’t buy the medication they need.  It’s too costly.  Many patients cut back on their dosage of medication, trying to make it last longer, but while doing this, they render the medication useless as it then has no beneficial effect.

On another note:

Assistance from governments – state and/or federal – is like trying to trudge through a mud slide several feet deep, while going against the slide’s direction of movement.  Not a good picture.

Social Security Disability applications go through an automatic first denial.  One applicant’s application was denied along with the explanation for denial that had totally nothing to do with the applicant’s reason for applying for financial relief.  It was evident that the federal employee didn’t take the time to actually read the application and accompanying documentation.  Or, he/she was under orders to automatically deny.  This tactic sounds more reasonable, since Social Security Administration keeps complaining about its bottom line.

As with too many federal agencies, the weakest keep getting pushed “under the rug.”

[Pill box image from bingdotcom]

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Meet Rik Carlson – ME Patient From Vermont

 

Imagine what it’s like to be so sick you cannot function.
Imagine there is no known pathology for your illness, only symptoms.

Imagine you are too weak to find your own voice… and because you are silent and confused, your physician says, “It’s all in your head.”

Imagine.

Because your illness is invisible, you disappear.

Rik Carlson was afflicted with a sudden onset case of Myalgic Encephalomyelitis on January 2, 1995 and 18 months later was passed the baton to form the VT CFIDS Association, now ImmuneDysfunction.org. He wrote the book We’re Not in Kansas Anymore: Chronic Fatigue Syndrome and the Politics of Disease and has written numerous essays about Chronic Fatigue Syndrome. In 2006 he testified before the Chronic Fatigue Syndrome Advisory Committee in Washington D.C. In 2009 he was part of the published Obama Biden Transition Team report on Health Care in America. In conjunction with Michael Thurston, Rik directed the film Invisible. He lives in Burlington with his wife Barbara, and their cats. Their son, David, is a Marine Corps Veteran and works with Veteran’s Services at the University of Vermont.

The movie, “INVISIBLE” gives voice to a select group of Vermonters who are gravely ill, and until now, have been out of sight. You will hear first person accounts from your Vermont neighbors as they talk about living their lives with Chronic Fatigue Syndrome, CFIDS, Fibromyalgia, or Myalgic Encephalomyelitis, the disease with a thousand names and no known cause or cure.

Please click on the link below and you will be taken to a new window to view the video.

https://www.cctv.org/stream-player-build?nid=118058

[ Source:  http://immunedysfunction.org/invisible.html ]

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My Truth About Invisaligns and A New-Fangled Container

 

For the last 2 years and 3 months, I’ve had to wear “Invisaligns” to correct a mistake a former dentist made with a “night guard” (NG).

Without going into gross details, suffice it to say that my whole bite became misaligned, and my mouth was reduced to a very bad bite which affected my ability to chew properly as well as rendering some teeth to become crooked.

Finally, two weeks ago today, I had impressions taken for “retainers” and a week ago, I picked them up.

FREEDOM!!  Now, I could go a whole day without worrying about making sure I wore the Invisaligns 19 – 20 hours a day for them to be effective.  Now, I could even have a piece of fruit during the afternoon in peace, without removing the Invisaligns, brushing and replacing them.

(I’ve seen many commercials on TV for Invisaligns.  They misrepresent them by omitting the fact that sure, you can eat anything, but you have to take them out in order to eat.  Misrepresentation by omission!)

I returned home with my new retainers safely residing in the container in which the orthodontist placed them.  I got comfortable, relaxed, and enjoyed the company of Patches and Rusty.

A thought occurred to me:  The container looked kind of strange – reminded me of one of those intergalactic transports from Star Trek.  I got up and took a good look at it.

container

I couldn’t figure out how to open it!!  It truly was strange.  I pulled, pushed, looked for a place to put my fingers to open it, but there wasn’t any visible way to get it open.  I tried prying it open with a pointed knife (not a good idea).  Nothing I did made it move in the slightest.  I was ready to take a hammer to it.  How was I supposed to put the retainers in my mouth for the night, if I couldn’t open the damned thing?  I was getting frustrated.

I called the orthodontist’s office.  Fortunately, they were still there.  I complained about this new-fangled thing, and what was wrong with the old style?  That certainly was easy to use.

The woman put me on hold for a minute.  She came back and holding one of those containers, she proceeded to instruct me as to how to open it.  I followed her instructions, et voila!  Success.  It popped open.  It was as simple as could be.  Just a push in the front released the hooks that kept it closed.

I suggested in future, they should have an instructions sheet to go along with the container.  The woman told me that they were having complaints.  Duh!

Sometimes, these new inventions that are considered “progress” should have never been invented.

Moral:  It was probably cheaper than the original ones.

 

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Interview With Linda Tannenbaum – Open Medicine Foundation

 

Very informative interview of Linda Tannenbaum by Llewellyn King.  Linda’s daughter has severe ME.  It was the searching in 2006 for an answer from more than 20 doctors and finding none, that brought Linda to decide to start the OMF.

The video is 18 minutes long.

Thanks to Corinne Himmelman for posting this on Google+.

 

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Rapid response for inflammation control in songbirds’ brains could lead to therapies in humans

 

A biological process in the brains of zebra finches shows that the songbirds respond quickly to trauma and are capable of controlling the natural inflammation that occurs to protect the brain from injury. Understanding the process well enough could lead to therapies in humans to control inflammation and hasten recovery from brain injury such as stroke, says American University neuroscientist Colin Saldanha.

Chronic inflammation causes cell damage and the loss of important neurons that regulate memory, mood and movement. Being able to control and limit inflammation in an injured brain may preserve vital brain function.

This information may lead us to believe that possibly the scientific community will expand research on this important development that may affect patients suffering with Alzheimer’s, Parkinson’s disease, strokes and inflammatory diseases, such as M.E. (myalgic encephalomyelitis).

For more than a decade, National Institutes of Health has funded Saldanha’s research because of the implications it has for treating neurodegenerative conditions.

Source: Rapid response for inflammation control in songbirds’ brains could lead to therapies in humans 

 

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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.

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[Disability clip art from:  bingdotcom]

 

 

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.

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Myalgic Encephalomyelitis Is Now A Real Disease!

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A guest blogger (Rivka Solomon) posted on Erica Verrillo’s blog, “Onward Through the Fog,” (both women are patients suffering with ME/CFS) and she tells her story of 25 years with this disease, and about her raised hopes upon learning that Dr. Francis Collins, Director of the NIH, has announced IT IS A DISEASE and deserves government research.  The U.S. government’s (at long last) recognition of this debilitating disease, has given hope to all sufferers, their families and friends.

There is one thing, upon reading Rivka’s post, that I hadn’t known before; that is, this disease has grown so widely, that there are past and current NIH employees who are ill with it, and also, employees working for and with the NIH who have family members who are greatly debilitated by the disease.

Again, it is not only what you know; it’s WHO YOU KNOW, that will make inroads possible.  A fact of life.

A popular saying I’ve heard many times:  Cancer is such a popular disease, that there isn’t one family which hasn’t been affected by it.  It seems to me, that, as Myalgic Encephalomyelitis is growing here and around the world, there may come a time when that saying will apply to this disease.

Our NIH researchers better move quickly and make up for all the thirty years of wasted time.

DO YOU HEAR THAT, DR. COLLINS??

 

[Image from bingdotcom]

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Social Security Disability is Nearing Insolvency

Yes, it’s true.

disability

Here are the main reasons for this disastrous event in the near future, if Congress does nothing to fix it:

  • There have been an increasing number of people receiving SSDI while there is less revenue in payroll taxes coming in.
  • The aging Baby Boomers reaching the prime disability age (70% of disabled workers are age 50+) , and the increase of the number of women in the workforce (and therefore being covered by this program), have caused 1/3 of the increase.
  • People living longer (therefore staying on the rolls instead of dying), and the increase in the age of retirement (shifting more people onto SSDI than retirement) have also contributed.
  • An additional factor is the new disease guidelines implemented in 1984, allowing disability payments for mental illness and musculoskeletal illness (back pain, depression and fibromyalgia are three often mentioned diseases in this category).  While heart attack and stroke have remained steady, the incidence in these new diseases has increased, accounting for a whopping 50% of the increase.
  • Also, there are myalgic encephalomyelitis (ME) patients who also suffer with fibromyalgia.
  • A loss of revenue from payroll taxes. On the demographic side, the Baby Boomers had less children, so there are less workers paying into the system. Where there used to be 17 workers contributing for every recipient, there are now only 3.
  • The increasing income inequality has also contributed to the problem. There is a cap for workers at wages of $118,000 a year. Those making more do not pay more into the system. As more people are making over this amount, revenue has decreased.
  • There is the issue of fraud in the system.  While nobody wants to deny deserving applicants benefits, fraud must be held in check so that funds are available for the truly disabled.

The subject of Social Security Disability application denial or acceptance is a hot one.  The fear of fraudulent claims has pushed our government to deny too great a percentage of applications that are truly deserving.  Nearly 65% of disability claims are denied by judges.

denied

In order to understand how the Social Security Disability funds are allocated, it is important to note that the program is made up of two divisions:  a smaller one for disability; and a larger one for old age retirement.  Payroll taxes collected from those currently working are divided into two streams:  one for SSDI; and one for the retirement fund (also called the Old-Age and Survivors Insurance or OASI).

A little history:  Since the 1970s, funds have been reallocated 11 times from SSDI to OASI, and vice versa, when either fund was in need. This worked fine when overall, there was enough money to fully fund both. However, due to demographic and other factors, the overall program is projected to become insolvent in 2033. This is 18 years from now – not as far off as it might sound, given the time it takes our government to roll out reforms.

Many Senators stated that while nobody wants to cut funding for the disabled, they will not let a reallocation go through unless there are also reforms to the SSDI program (and possibly OASI) to either cut costs or bring in more revenue or both.

My advice:  Contact your Representatives and Senators to fix this before we have a very serious problem on our hands.  Our disabled citizens need the continuing support they deserve, and they are dependent upon our healthy, working Americans to help.  Those, who are healthy and can work, need to appreciate something they might not think about:  They could find themselves in the same situation one day, and then need the help of Social Security Disability.

[Images from bingdotcom]

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