International Awareness Day for Chronic Immunological and Neurological Diseases

A long-time friend of the Agency has informed us that May 12th is INTERNATIONAL AWARENESS DAY FOR CHRONIC IMMUNOLOGICAL AND NEUROLOGICAL DISEASES (CIND).  That date was chosen as it was the birthday of battlefield nurse and "founder of modern nursing" Florence Nightingale, who was thought to have ME/CFS, one of the CIND.  As it is the ailment of our friend's spouse, and is "the most prevalent disease you've never heard of", we will concentrate on ME/CFS.

 

ONLY RECENTLY TAKEN SERIOUSLY, ME/CFS CAN DESTROY YOUR LIFE

 

Myalgic Encephalomyelitis (ME) – also known as Chronic Fatigue Syndrome (CFS) - is a devastating multi-system disease that causes energy depletion on a cellular level and severe physical and cognitive limitations. 

 

After decades of disparagement as ‘Yuppie Flu’, [as it was first seen with frequency in working women], in 2018, the first comprehensive study by the National Academy of Medicine’s Institute of Medicine concluded:

  • ME/CFS is a serious physiological disease – NOT any form of mental health condition;
  • Remarkably little research funding is allocated to ME/CFS – less than the amount to study hay fever!
  • Women are 4 times as likely as men to have ME/CFS, which may relate to the under-funding;
  • US economic burden is $17-$24 billion in medical expenses and lost productivity;
  • Up to 69% of people with ME/CFS are unemployed and up to 89% lost their job due to ME/CFS;
  • 25% of people with ME/CFS are so severe they are bed-bound and unable to eat or shower on their own;
  • PEOPLE WITH ME/CFS HAVE THE LOWEST QUALITY OF LIFE SCORES OF ANY DISEASE TESTED. LOWER THAN STROKE, HEART ATTACK, LUNG CANCER, AND RENAL FAILURE.

 

More information is available on the website of the Solve ME/CFS Initiative; copy www.solvecfs.org into your browser.

 

Reference:  "Beyond Myalgic Encephalomyelitis / Chronic Fatigue Syndrome:  Redefining an Illness."  To read, copy this URL into your browser: https://www.nap.edu/read/19012/chapter/1

 

ME/CFS WARNING SIGNS

 

Here is a simple five-question test to see if you should consider ME/CFS as a diagnosis:

1. Are you experiencing profound fatigue that substantially decreases your ability to function?

2. Has your profound fatigue persisted for more than six months?

3. After physical or mental exertion or even normal daily activities are you exhausted and unable to recover for an extended time?

4. Do you experience un-refreshing sleep – waking up exhausted like you never sleep even though you did?

5. Are you experiencing cognitive impairments such as memory problems, attention deficits, or trouble with skills when thinking and movement are combined?

 

YOU DON'T HAVE TO WAIT FOR THE MOVIE

 

The Sundance Film Festival winner “UNREST” shows the daily struggles of Jen Brea and her husband as they deal with this illness that most doctors still do not recognize.  Copy this URL into your browser:

https://vimeo.com/ondemand/unrest

 

 

NEW YORK STATE DOH TRIED TO GET THE WORD OUT

 

In May 2017, the New York State Department of Health released a medical bulletin that includes a summary of ME/CFS.  It is SUPPOSED to be read by all physicians, but we still have many residents going from doctor to doctor for months and years before they get a proper diagnosis.  So, print and share a copy with your primary physician or any specialist that you see.  A URL for your browser:

https://drive.google.com/file/d/0B37JHmPXER6JZkZRd0hIalA2bUE/view

 

The NYS Department of Health now also maintains a website on ME/CFS:

https://www.health.ny.gov/diseases/conditions/me-cfs/ 

 

 

KIDS ARE NOT EXEMPT

 

Unfortunately, ME/CFS strikes people of all ages including children.  Dr. Peter Rowe published a summary of important information for parents that you can access here:

https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

 

MORE INFORMATION from the global grassroots effort #ME/ACTION on their website:  www.meaction.net

 

PASS ALONG TO A FRIEND: BECOME ME/CFS AWARE BY MAY12th!