Tag Archives: MS

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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MS vs ME/CFS: A “Fatigue” Disorder No More?

I subscribe to Cort Johnson’s “Health Rising” blog.  He has taken up the cause of those suffering with ME/CFS for a long time (he is one of the millions of patients).  As in one of my recent posts, the plight of sufferers of Myalgic Encephalomyelitis (ME) has been taking up space in headlines of top newspapers.

The current post on Cort’s blog, speaks to the similarities between MS (Multiple Sclerosis) and CFS (Chronic Fatigue Syndrome).  CFS is a misnomer for ME (Myalgic Encephalomyelitis); however, CFS seems to be a more recognizable name, since its coining by the CDC many years ago.

The issue that Cort addresses in this latest post is the “fatigue” suffered by patients who have the two diseases:  MS and ME/CFS.

He states:

Multiple sclerosis (MS) ranks amongst the most fatiguing disorders known.  Both ME/CFS and MS are fatiguing disorders – but is their fatigue similar?

 It is a major topic for research:  there have been 10 research studies in the last 5 months into illnesses with “fatigue” in their titles or because they are known to create abnormal, exhausting fatigue in the patients!

 

Cort goes on to describe the differences and similarities between MS and ME/CFS regarding:

  • Severity;
  • At what stage in development of disease does fatigue start to occur;
  • Types of fatigue;
  • What causes the fatigue to appear at different times of day;
  • Does weather cause changes in severity of fatigue;
  • How does exercise regimens affect patients’ fatigue;
  • How does exercise affect pain experienced by patients;
  • What other actions contribute to fatigue?

The word “fatigue” is a word that really doesn’t properly describe the bone- muscle- nerve-deep total exhaustion (and pain) experienced by ME/CFS patients; and yet, it is used offhandedly by the medical community, some scientists, the governmental agencies who are charged with caring for the health of their citizens, and others who are incapable of understanding the type of “fatigue” meant.

As part of his conclusion, Cort states:

Despite both disorders being associated with high rates of fatigue, people [with] ME/CFS and multiple sclerosis had very different responses to exercise – and display very different types of fatigue. The fatigue in MS is omnipresent, but is not greatly affected by exercise. The fatigue in ME/CFS is..

 

Spreading the Message About M.E. (Myalgic Encephalomyelitis)

Most of the world’s population – and pointedly – most of the medical community of the world, still does not know what M.E. (Myalgic Encephalomyelitis) is; if they have heard about it, they don’t know much about it.  It is the “invisible illness.”  All the “bad” things are going on, beneath the skin, in the body of those afflicted, and, when looking at the patients, all you can say or think is, “You don’t look sick.”  This is why the medical and governmental communities of most countries prefer to consider M.E. as a psychosomatic illness, rather than the severe physical illness that it is.

Points to ponder:  HIV/AIDS and MS victims “don’t look sick” either, in the early stages; however, the medical community does not consider these patients as having “psychosomatic” illnesses, because the well-funded research for these has uncovered the cause and the detectable tests for them and thus, treatment, if not cures, has come forth.  So it is with M.E., except for the fact that our government has not seen fit to put the research funds needed into the hands of the dedicated scientists who are willing to continue research into the cause – or causes – of M.E.

The video (Sleepydust) below, uploaded onto Youtube on November 30th, 2006, aims to help the friends and families of M.E. and Post Viral Fatigue Syndrome sufferers to understand the illness and what their loved ones are going through.  Even though this video is almost 8 years old, almost all of the information contained in it is still relevant.  This means that there has not been sufficient research from 2006 till now, for cause; or for proper treatment of symptoms; or better yet, a cure.

Myalgic Encephalomyelitis is extremely debilitating; many become housebound; some even become bedridden; and there are those whose bodies cannot fight anymore, and they die.  Advocacy for these terribly afflicted patients is all important.  Please take the time to view the short 9-minute video and help to spread the message.

 

 

Volunteering Has Its Own Rewards

When I was in high school, I decided that I was going to be a nurse because I always wanted to “take care of people who needed help and to bring some happiness into their lives.”  At that time, I hadn’t realized what a noble calling that was.

One of my nursing instructors looked just like this!

One of my nursing instructors looked just like this!

But I thought that perhaps I should “test” myself and see how I would feel and react to a hospital setting and experiencing being with people who were ill and/or disabled.  I was totally lacking in that sort of experience.

So, during my Junior year, and during the summer, I volunteered in the “Jewish Hospital for Chronic Diseases,” in Brooklyn, NY, a hospital/nursing home for chronically-ill and disabled patients, with room for hundreds.  (I don’t think it exists anymore.)  The setup was in very large wards, containing approximately 20-30 beds.  No private rooms.  This was a hospital for indigent patients.

The hospital building looked somewhat like this - really old.

The hospital building looked somewhat like this – really old.

Those who were able, participated in a patient-controlled and staff-approved social club, and they managed to arrange for their own entertainment.  They were making the best of their situation – some would be there for the rest of their lives (many were young people).  In all the time I spent in that facility, I hardly ever saw visitors for the patients, but they seemed to have accepted their lot in life and they seemed happy and joyous and capable of, yes, excitement.  (Remember, I’m thinking back to the time I was a young teenager, and trying to experience again, my feelings and perceptions.)

There was an organizer/leader – his name was Manny, and he had his “secretary” and “treasurer.”  Manny was the most social person you could ever imagine.  He was wheel-chair bound and was one of the most intelligent, jovial, thoughtful people I think I had ever, and have ever, met in my life.  He was suffering from MS.

man in wheelchair

If the patients smiled and laughed any harder, I swear their faces would split apart.

Manny immediately put me at ease and welcomed me so warmly.  I told him I was there as a volunteer and had scheduled myself to give at least 10 hours during the week and some on the weekend as well.  I made his day and many more.  During the summer, I devoted more.  Visitors were a treasured commodity.

I found myself feeling that I found a second home.  The best thing for me was the feeling of great joy that I felt, in the giving.  Yes, volunteering had its own, unexpected, rewards.

Volunteering is more than it's cracked up to be.

Volunteering is much more than it’s cracked up to be.

[All images from bingdotcom]