Category Archives: Illness

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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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.”

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Dr. Collins Testified Before The Senate Appropriations Subcommittee

 

Dr. Francis Collins, Director of the NIH (National Institutes of Health), in his testimony, outlined what he intends to do with the very generous funds for the NIH that have been included in President Obama’s budget.

One of the major concerns he spoke about was the strides made in the treatment of cancer.  The quote below brought to my mind, “Why couldn’t this same research be applied to ME (Myalgic Encephalomyelitis)?  According to Dr. Collins, researchers have discovered a way to prevent the cancer cells from getting through the body’s natural immune system.

Our immune system has T-cells to stop and reject foreign cells; however, these same cells need to be told when not to go into overdrive when the cancer cells get through the body’s defenses.

Immune dysfunction is one of the major symptoms from which ME patients suffer.  Dr. Collins’ testimony regarding research which allows the normal immune response to be re-activated seems to hit the nail on the head, not only for cancer, but for ME as well.  The immune system in ME patients seems to give up:  it can’t seem to fight off the invading viruses’ strong hold in their bodies.

Please read the quote, and you will see what I’m zeroing in on:

“Researchers have long been puzzled by the uncanny ability of cancer cells to evade the immune response. What stops the body from waging its own “war on cancer?” As it turns out, our bodies have important built-in checkpoints to prevent our immune systems from running amok and killing healthy cells. Certain white blood cells called T-cells—the armed soldiers of the immune system—are designed to go after foreign invaders, but they also need a stop signal to prevent going into overdrive. One way to do this is through a receptor on the T-cell called CTLA-4 that inhibits its function. Tumor cells have figured out how to take advantage of this pathway by up-regulating CTLA-4; the result is to put the brakes on the immune system, giving the green light for the cancer to grow.

NIH-funded researchers have discovered a way to release the brakes by introducing a monoclonal antibody against CTLA-4, allowing the normal immune response to be re-activated. Dr. James Allison, who led the basic science efforts that led to these insights, was just honored with the receipt of the Lasker Award, the “American Nobel Prize.” Promising results in patients with metastatic melanoma and lung cancer are making this and other immunotherapies the breakthrough treatment of the future. After President Carter was diagnosed with stage 4 metastatic melanoma, he received immunotherapy as part of his treatment.”

Of course, I’m just a lay person.  I haven’t had medical training; however, my mind usually works in an organized way, and of course, I may be completely wrong about my idea above.  I welcome any opinions.  Anyone out there in the blogosphere?

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My Bucket List of Gratitude – By Lisa Gastaldo

When help is needed, good friends come through without being asked.

Kindness Blog

bucket listI’m creating my own kind of bucket list. Not the usual listing of things I wish to do before I leave this earth, but an accounting of the gracious drops of kindness that have filled my pail to the brim.

Whether the contribution was a single drip from an eyedropper or gallons upon gallons of generosity, all have buoyed my soul, washed away hours of pain, and carried me through turbulent trials.

And so I have decided to make a conscious effort to recognize these not-so-random acts. Some were as temporary as the morning dew, but equaling as cooling. Others have been like IVs, injecting nourishment continually. A few were summer storms: electrifying, powerful, and brief. Whether their perpetrators knew it or not, each and every one made a significant impact. They quenched my drought in spirit and left me flooded with gratitude.

Item Number 1: Clean House – Warm…

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#ME Where Are We?

 

During the first half of this year, there was much going on in the Health and Human Service (HHS) Department and regarding ME (Myalgic Encephalomyelitis):  we had the IOM’s (Institute of Medicine) outstanding, positive report (in my opinion) and then there was the P2P (Pathways to Progress) report.  The former was indicative of forward movement in the cause of ME and the latter, was not.

We’ve been ignored.

There were stand-offs, delays, and hidden refusals when the FOIA was used to obtain documents vital to the ME cause.

And where are we?  After all the hullabaloo and interviews of patients including Laura Hillenbrand, author of “Seabiscuit,” Jen Brea, co-developer of a movie, “Canary in a Coal Mine,” I ask again:

Where are we?

It looked like we had some strong headway for a while, in getting ME recognized as a VERY SERIOUS disease (which it is of course), and as such, needed MUCH MORE grant money from the NIH (National Institutes of Health) for some serious and more timely research.

As far as I can see, we are not much further along in our battle – yes, I said, “battle” – to get concrete help for our ME patients – in order to get them out of the greatest “funk” – in the world.  My choice of word – being polite.  I am totally frustrated, angered, impatient, sad, screaming inside.

People running and doing walks, making videos, giving speeches, begging Congress, growing gofundmes on the Internet, writing articles in popular newspapers and magazines, yada, yada.

Still, I ask, “Where are we?

 

 

 

Another Well-Known Talented Person Is Ill With ME

 

It’s been awhile since I’ve written a post as an advocate for ME (Myalgic Encephalomyelitis).  There are so many posts, tweets, google +, etc., reports of research and trials going around on the Internet, and many duplicates also.  It’s heartening to see the continuance of support and awareness.  The disheartening thing is that it all seems to do nothing to move and stir the huge grant pot of the NIH.

Today, I came across an article that got my attention.  It’s a blog by Brian Vastag, veteran and former science writer for The Washington Post.  It is addressed to Francis Collins, NIH Director.

Brian

Brian became ill with ME three years ago and is asking the NIH if it can “spare a few dimes.”  His blog is compelling, to say the least.

He starts off his letter to Dr. Collins with:

Dear Dr. Collins,

You might recall the last time we spoke. It was January 2013, and I was working as a science reporter at The Washington Post. Your people arranged an early call for you to announce that the N.I.H. had decided to retire most of its research chimpanzees. We spoke for about 20 minutes, and I typed up a 600-word story. It wasn’t very good.

http://www.lastwordonnothing.com/2015/07/14/dear-dr-collins-im-disabled-can-the-n-i-h-spare-a-few-dimes/

See also:

http://www.washingtonpost.com/people/brian-vastag

 

Chilli ME Challenge

 

Do you remember the “Ice Bucket ALS Challenge” of last year?  Well, now, we have the “Chilli ME Challenge.”

Awareness for ME/CFS/SEID/CFIDS needs to be addressed and put forth in all media.  The need for research is dire.  There are many brilliant and talented scientists who are ready to continue their intense and costly experiments and “all we need” is more money from our government’s NIH (National Institutes of Health).

Although the number of sufferers of ME/CFS/SEID outnumber the combined number of patients who have MS, Lupus and HIV/AIDS, the amount of grants for ME/CFS/SEID research is only $5 million as opposed to $250 million for the other diseases named above.

ME symptoms

Below is a short video of one woman’s (Simone) acceptance of the challenge.  Before she eats the hot chilli, she gives a quick summation of most of the symptoms that people worldwide suffer with this disease.

 

Science versus history: a snapshot of Invest in ME’s 10th annual conference

A most enlightening personal report of the Invest in ME’s 10th annual conference.

valerieeliotsmith

Introduction

On Friday 29 May 2015, the British charity, Invest in ME, held its 10th annual conference at the Institution of Mechanical Engineers in central London. It followed on from the two-day Biomedical Research Colloquium on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The scientists who were speaking at the Conference had already had the benefit of the Colloquium in which to discuss recent research developments and foster burgeoning relationships within the international ME/CFS scientific community.

I have lived with this illness for thirty-five years. A conservative estimate puts the number of ME/CFS patients worldwide at twenty million, although diagnostic uncertainty means that this figure could be wildly inaccurate. Despite having been well-known and documented for eighty years, the disease is still not widely recognised. There is no effective diagnostic pathway or treatment. Patients are still routinely neglected and abused; this results from the disproportionate power of the psychiatric lobby (especially in the UK) which continues to trumpet the highly inappropriate psychosocial model…

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Watch Cancer Cells Being Killed In New Video from National Institutes of Health-Amazing!

Have you ever wondered how cancer cells are killed in our bodies?  In this video, you can actually see this taking place.

First Person Accounts About What It’s Like To Live With M.E.

Well-known law prof battles stigma of chronic fatigue syndrome by going public

For many who suffer from chronic fatigue syndrome, stigma is the worst aspect of the illness.

People suffering from the syndrome, also known as myalgic encephalomyelitis [M.E.], have been treated as malingerers and met with disbelief, according to Northwestern University law professor Steven Lubet. Many have been referred to psychiatrists.

“I am often essentially immobile, with other debilitating symptoms as well,” Lubet writes. “On days when no one sees or hears from me, it is most likely because I am housebound or bedbound. Sometimes it is impossible to manage the keyboard.”

All my fellow bloggers who follow this blog, are aware that I advocate for M.E. (Myalgic Encephalomyelitis).  When I come across, in my internet wanderings, some information that I believe will help others to understand what life is like when suffering with this chronic illness, I am forced to share it.

blue ribbon for me

I was struck by the “true-to-life” commentary by an M.E. patient, known as “Carol.”  She tells what her life is like since she came down with Myalgic Encephalomyelitis (M.E.).  After reading her comment at the bottom of the article, I decided to post it here.  It shows what the quality of life (QOL) is like when a patient lives with M.E. and includes family and friend relationships:

It is appreciated when anyone with a higher profile [Prof. Lubet] speaks out in regard to their experience with me/cfs. I so relate to the point about not being seen for a day or so because of being bedridden or homebound. It’s a delicate balance of coping, energy reserving, and prioritizing. I too acquired this illness in 2006, diagnosed by Dr. Bruce Carruthers in 2007. Up until now I have reserved most of my energy to work a week on week off jobshare but it is becoming more and more difficult. I see my house becoming more and more cluttered as I no longer have any energy to do even the important ( to me) tasks around the house. We eat out more often and I am less and less motivated to find something different to wear to work or make sure my nails are “done”. To the general public or unenlightened physicians this may seem like symptoms of depression, however I know that it really is just a lack of energy. Does anyone else have mental desires to do things but just cannot physically do them ? Support is always lacking, some friends and family have been pretty good, others that think you should be cured by now.. but there are some family that think I just don’t look after myself and that I suffer from depression. Very frustrating when I try to explain the difference as they claim to have read up about me/cfs and declare that I am just making excuses for not seeking a psychologist/medication to treat my “depression”. One of my children has chosen to “detach” from me because they just find me too negative ( because there are things I cannot do ) and an excuse maker. That my sometimes garbled words or poor memory just make me unlovable “until” I choose to seek help for my “problem”.

 

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