Tuesday, March 10, 2009

Exciting Breakthrough in CFIDS (CFS/ME) research

I had heard that researchers were getting close to finding a biomarker for this illness, which would carry with it all sorts of implications, such as a diagnostic blood test, carrying with it credibility of the illness and incentive to do more research into understanding and treating it. I've lost almost 19 years to this disease. I've dealt with doctors who've laughed in my face, who've told me it's 'all in my head'. Having this illness is hard enough. Being subject to redicule and doubt only compounds the problem. I'm fortunate in later years to have found doctors who do believe I'm ill, who treat me with dignity, and try their best with limited options to help.

I'm copying parts of the article from THIS LINK and hope those of you with CFIDS or who know someone with this illness will read it. Pass it on to anyone in your own lives who have this illness and may be as discouraged and frightened as I was for the first years after it hit me.

What if you woke up dizzy, disoriented, limp, confused, then turned to the profession that you always thought would help you, or try to at least, only to be told nothing was wrong with you? What if this went on for years and years until you finally knew you were on your own, that friends who'd disappeared would never come back, that you were bound to your home by the symptoms 90 percent of the time, that your life as you knew it was over? We finally adapt, like we do to most major events and losses in our lives. We cope. The thought that help may be on the horizon makes a huge difference, though.

copy paste:
International Press Release:

Noted Scientist Reports Real Progress in ME/CFS Research

Reported February 23,2009
by Dan Moricoli

"A biomarker for ME/CFS may be less than two years away." According to Dr.Nancy Klimas one of the pre-eminent, research scientists in the world on ME/CFS (also known as chronic fatigue syndrome or myalgic encephalomyelitis). We are closing in on being able to identify the root causes of a diseasewhich afflicts millions of people around the world. One that is poorly
understood and treated by the medical community."

Understand," she went on to say, the excitement rising in her voice, "that physicians practice, or at least strive to practice, evidence based medicine. The demands on a physician are so overwhelming that they are virtually forced to concentrate their efforts only on those medical conditions which can be clearly and objectively identified.

That is simply not yet the case with ME/CFS." She added with emphasis.

"Just think for a moment, what it would mean to the millions of sufferers of ME/CFS if any doctor could run a test which would clearly, indisputablyidentify the patient as having the disease, EVERYTHING CHANGES." Again,adding emphasis to her words as she spoke with great passion and concern.

"Drug companies will add untold millions in research in their rush to develop medicines to treat the disease. In short order, local physicians will finally be able to begin to identify, understand and treat their patients properly. No longer will those afflicted be dismissed by the medical community and, all too often, by their own family and friends as having that 'yuppie thing'."

Dr. Klimas shifted in her chair and with the precision and determination of a research scientist in both her eyes and voice went on to say. "There are at least three, perhaps even seven, sub-groups of what we call ME/CFS that are currently under intense research focus. They may be thought of as three to seven different conditions with closely related symptoms. As we identify and conduct more focused research on each of the sub-groups even more bio-markers will be identified and treatments developed over time."

ME/CFS is world wide problem that afflicts at least 28,000,000
people, perhaps many more than that.


mister jim said...

Anything solid in any way
is good news! Remember how long
ulcers dragged on, and even
killed with the stomach cancer.
And it was H.Pylori all along:
just a few weeks of antibiotics.
If it's some "proteomic" disorder
(the operating conditions somewhere)
there might be a straightforward
help for it.

Pris said...

Jim, I know. After years of nothing very substantial happening with research into the illness, to have a possible breakthrough is almost too much to hope for. And so true, narrow down the problem and maybe treatment options will follow!!! I can only hope..dream...wish.

colleen said...

I thought they had already found a bio-marker but if so I noticed nothing changed. This sounds hopeful.

My mother just got shingles and was exhausted by it. She finally got to see what I go through as far as metering out my activities and I was teaching her how to manage fatigue and not to expect a linear progression of healing.

Pris said...

Hi Colleen,
No, they haven't found a testable one. They're talking about a test for it that will show up via bloodwork. Yes, that is indeed hopeful.

Sorry about your mother's condition . Yes, it takes having a similar problem to truly understand.

cfswarrior said...

I haven't been online long enough these days to catch up on blogs and things. This is great news!


Brian Campbell said...

I second it, Pris. It's great news.

Pris said...

Hi Terri and Brian
This is probably the biggest potential breakthrough we've had to date.

Jozephine said...

A test for CFS would change everything. I'm just trying to get my head around the enormity of it.

Pris said...

Indeed it would. I hope it really does happen in my lifetime. Imagine not having to always 'prove' something's wrong when everything is SO wrong.