Tag Archives: awareness

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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What is ME/CFS?

The Open Medicine Foundation – Nonprofit fundraising and support for a cure for Neuro-Immune Disease, Chronic Fatigue Syndrome, ME, Lyme Disease, Fibromyalgia and engages patients in research.

Please click on link below to get the real, true story in Q & A form:

Source: What is ME/CFS?

 

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Why Is Big Pharma Fighting Legalizing Marijuana?

 

MJ

It’s obvious.

We all know by now that most prescribed pain killers (especially opioids) are addictive, and yet, our government bows down to Big Pharma and continues to allow clinicians to prescribe them indiscriminately.

Many, many committees, commissions, agencies , etc., have been holding meetings to discuss this problem.  Has anything been done?  Of course not.

All the “conclusions” of these “get-togethers” have amounted to: ZERO.

Now, we have something else to throw into the “pot.”

There’s a body of research showing that painkiller abuse and overdose are lower in states with medical marijuana laws. These studies have generally assumed that when medical marijuana is available, pain patients are increasingly choosing pot over powerful and deadly prescription narcotics. But that’s always been just an assumption.

Now a new study, released in the journal Health Affairs, validates these findings by providing clear evidence of a missing link in the causal chain running from medical marijuana to falling overdoses. Ashley and W. David Bradford, a daughter-father pair of researchers at the University of Georgia, scoured the database of all prescription drugs paid for under Medicare Part D from 2010 to 2013.

Medical marijuana is being used for medicinal purposes and not for “recreational” purposes.  There is this misconception held by very conservative groups:  medical marijuana will be used for recreational purposes or will lead to recreational marijuana use in order to get “high.”  Medical marijuana is used as medicine to relieve pain and other symptoms of chronic and/or serious medical conditions.

fewer pills

The graph above, published by Bradford and Bradford, Health Affairs, July 2016, sheds much light on the impact the use of medical marijuana has had and continues to have, on addictive drug use.

Let’s get on with it, elected officials!  Let the light shine through, and give our ill citizens availability to this plant that has many healing qualities, especially relief from many types of pain.  Some of your colleagues have seen the light and passed state laws allowing prescribing of medical marijuana.  Until the federal government passes a national law or properly amends the scheduling of marijuana, I hope more states will join the almost 30 states which have already passed marijuana laws.

Source:  Article in the The Washington Post by Christopher Ingraham

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One of #MillionsMissing

My daughter has ME – Myalgic Encephalomyelitis.  She’s one of those “#Millions Missing.”  On May 25th of this year, there was a world-wide campaign during which millions of pairs of shoes were placed in front of government buildings to show support for the millions of patients who are “missing” from participating in a “normal” life.  A life which they, against their wishes, were forced to leave, due to the debilitating nature of this horrible disease.

There is no known scientific diagnosis; no cure; and no recognized treatment.  Expert clinicians are still experimenting with medications, supplements, etc., while trying to find ways in which to help their patients.  Some things work – but not for long – to help relieve symptoms.  Each patient reacts differently to these “experiments.”  No such thing as “one size fits all.”

My daughter’s symptoms started approximately 25 years ago.  It was not a sudden onset like many other patients.

It occurred slowly over these many years.  The last two years were the worst.  She was still working, but truthfully, towards the end of 2014, I was positive she couldn’t continue with her job.  I don’t know how she did it, and looking back, she doesn’t, either.

She sort of set goals for herself.  Just another month, just another week.  She finally gave it up at the beginning of this January, when her body just gave up.

She cut her hair years ago.  She didn’t have the strength to take care of it anymore.  She used to have such beautiful, long hair.

There were many other activities of daily living (ADLs) she had to stop.  Frugally managing her time and energy allowed her to hold on for another year at the work site.

It wasn’t only the profound exhaustion.  There is the pain – in every part of her body.  She has told me that even her hair feels pain during the worst days.  The viral outbreaks.  The painful and debilitating chronic migraines which could last for days and keep her in bed, immobilized.  Did you ever hear of a migraine in the optic nerve?  Now, I have.

The “brain fog” and the constant wanting to put her head down and sleep.  Concentration was non-existent.  All these symptoms, put together as they were, forced her to bed.  Work was out of the question.  And she suffered all these and more, while trying so hard to keep her job and not appear to be sick at the office.  They frowned upon “being sick.”

She spends most of her days either lying on the couch or in bed.  It’s not where she would like to be.  She is forced to give up a “normal” life.

Talking on the phone is exhausting, and many is the time I’ve told her to hang up because I can hear and feel the extreme effort in her voice as it slows and gets slurry.

ME patients ARE NOT LAZY; THEY ARE NOT MALINGERERS.  Too many patients have lost their families and friends and even doctors.  These people refuse to believe the patient is REALLY SICK and they crossed the patients off their “list.”  They walked away.  That may be the most debilitating and greatest loss of all.

I’ve touched on only a very small amount of her symptoms.  The general public will find it impossible to understand that which patients go through in trying to manage from day to day; hour to hour.

Each day is different.  She never can expect that the next day will be better.  Too many times, it is worse.  There really is no such thing as “better.”  Sometimes she knows she has over-spent whatever energy (spoons) she had on the day before, and her body lets her know about it, for sure, during the next few days at least.

Myalgic Encephalomyelitis is a multi-symptom chronic disease.  All patients do not suffer in the exact same way; however, they do share most of the known symptoms.  As I said above, “each day is different” for each patient.

Sweetheart, if you are reading this, remember I love you so very much.  Words are not enough.  You know.  It is there in the depths of my being.

This post is my ode to you.  You are the most inspiring person I’ve ever known.  And you happen to be my daughter! 🙂

 

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A Short Update From Younger Labs On This International Awareness Day for M.E.

 

Today is the International Awareness Day for Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Fibromyalgia, Lyme disease, and Gulf War Illness.  Dr. Younger posted a short YouTube video (link below) about some of the exciting things that are happening now in the world of chronic pain and fatigue research.  He knows of many strong initiatives to cure these diseases, and thinks we will be making some major advances in the near future.

 

 

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Study: Students With Disabilities More Often Suspended At Charter Schools

Continuing the discoveries of discrimination suffered by children, students, and adults with disabilities:

In a first-of-its-kind report, authored by Shaun Heasley, in “DisabilityScoop,” a study shows students in charter schools, who are suffering some disability, are being suspended at a rate higher than typical children in public schools.

When discipline records in nearly 5,000 schools were studied at the University of California, it was found that there are great disparities in all grades, according to a report from the Center for Civil Rights Remedies at the Civil Rights Project.

“It’s disturbing to see so many of these schools still reporting such high suspension rates because that indicates charter leaders continue to pursue ‘broken windows,’ ‘no excuses’ and other forms of ‘zero tolerance’ discipline,” said Daniel Losen, the study’s lead author. “And we know from decades of research that frequently suspending children from school is counterproductive.”

“The high-suspending charters need not look very far to find much lower suspending charter schools,” Losen said. “So these findings elevate the need for oversight of charter schools and a continuing review for possible civil rights violations. There should be no excuses for charter schools that fail to comply with civil rights laws.”

It is a sad commentary on our educational system and indeed, our social structure, when children and adults have to be faced with, and suffer, the prejudice and ignorance of citizens who should know better.

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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]

 

 

At This Time Of Year

 

hands

Remember to reach out to those living with illness and pain especially during this time of the year.  It can be a very lonely and isolated time for them. Give them a call, a smile, a hand, a hug and an encouraging word that shows you care.

I doubt there is no one who could use an extra dose of caring from a friend, a relative and yes, even from a stranger.

Speaking personally, the month of December has proven to be a very difficult month every year.  It is the month when I lost both my husbands who I deeply loved.  December anniversaries and events keep running through my mind.

I don’t look forward to this time of year and wish it would hurry along, so that the new year may begin with feelings of freshness and hope for a better year.

 

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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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The Scientifically Challenged UK Media Strikes Back

A must read. The Telegraph in the UK featured an article written by Sarah Knapton. Ms. Knapton goes many steps further to malign sufferers of ME than the PACE trial report did, in her report of a follow-up study.

Utting-Wolff Spouts

When I first heard The Telegraph had featured an article concerning a follow-up study of the notorious PACE trial I was inclined to ignore it1. I’ve long become used to the appalling coverage of ME by the British media2 and felt I didn’t need to read any more disinformation disseminated via the Science Media Centre. However, I cracked and had the misfortune to read an article written by Sarah Knapton that is the worst I have seen in the thirty years I have been ill with this disease, which considering the competition is an impressive achievement1.

The article clearly implies ME is a non-illness, the suggestion in the headline that a bit of positivity and exercise could cure sufferers merits no other interpretation. One wonders what spin was put on the latest study by the SMC, as the results of this research bear no similarity…

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