Friday, November 4, 2011

Click here, then share widely

This is CNN's website. If they get enough hits, maybe they will do a real story on us.
 
Excruciating Disease is Spreading world wide-17 Million people have it, you may be next, please read 
I am a M.E patient who suffers from a chronic and cruel disease, this disease will not go away and neither will my severe pain . 17 Million people suffer from this illness worldwide and the numb....
 
 

Wednesday, November 2, 2011

Reminder

 
Stuff gets posted to the blog that doesn't get posted to the YahooGroup and/or Facebook (and vice versa) -- to make sure you're seeing all the relevant stuff be sure you periodically check all three.
 
 
 

Financial Struggles And Losses When Diagnosed With A Chronic Illness

 
My being reduced to part-time work will cost me over $1,000,000 in salary alone over my lifetime, plus the cost of lost benefits (i.e., from my lower income I had to pay my own health insurance premiums), and lower retirement income (no more employer pension plan, less income to put into an IRA, and paying less into Social Security).
 
To anyone who accuses a patient of "faking" for the financial benefits, get out the calculator to see how much those "munificent" sums we receive from Disability REALLY cost us in the long run, and then tell us we're "doing it for the money".
 
I want my old life (and income level) back!
 
 

Check out Nevada Newsmakers Annette Whittemore Interview–Transcript | CFS Unt

Tuesday, November 1, 2011

Dr. Cheney makes corrections to "heart failure" statements

In case you misssed this....

Included is a video link and incorrect statements made about what
Dr. Cheney says in the video, with corrections to the narrative by
Dr. Cheney.

Dr. Paul Cheney has given me permission to post his comments about a you-tube video that was made about his poster presentation at the recent XMRV Workshop at the U.S. NIH.. It's O.K. to repost these comments, so long as they are attributed to Dr. Cheney.

Rich Van Konynenburg, Ph.D.
richvank@aol.com

"A poster presentation by me made at the 1st International XMRV meetings held at the NIH in early September, 2010 was partially summarized by a U-tube video (the video has been removed but I thought you would like the comments by Dr. Cheney). While the video was in many respects very well done and brings needed attention to CFS and its link to XMRV, there are several errors and misrepresentations made about the poster and what it actually said or implied.

"My biggest problem with this U-tube video was the emphasis on "heart failure" as opposed to heart dysfunction or "LV diastolic dysfunction" which predisposes to orthostatic intolerance rather than death by heart failure which is very rare in my select cohort. My poster never said heart failure was associated with CFS. However, we do know that broadly defined diastolic heart failure does not typically occur until age 72 or later so what will happen to my patients when they get into their 70's is up in the air, assuming they are not treated with things like CSF's before then. There is also the semantic question of how heart failure is defined. If it is defined by organ failure and usually death within 5 years, I don't see this and is likely very rare in the age brackets I see with CFS with an average age of 49. If it is defined by organ dysfunction including heart, GI tract, exercise intolerance, heat intolerance and brain problems etc. produced by low cardiac output then you could use the term heart failure due to diastolic dysfunction in much of my practice. Death by such a functional definition is, however, rare compared to the heart failure patients admitted to hospitals with normal ejections fractions and deemed diastolic heart failure. Such a diagnosis is very lethal over the next five years with only a third alive after five years and virtually all are quite disabled and will remain so.

"Another problem is the "8 of 16 family members" positive for XMRV. The poster actually says 50% of healthy family controls or exposure controls (N=8) were positive. The U-tube video assumed that there were 8 positives when in fact 8 were tested and 4 were positive. 6 of 8 were healthy family members of CFS cases and 2 of 8 were CFS exposure controls and not family members. However, when we get the serology data back, I think the number of family members infected will be higher than 50% and the N value will climb well beyond 16 so this correction may soon be mute.

"I think the U-tube video misses the very important point that the cancer rate is much higher (47%) in the non-CFS, first order family members than in the CFS cases themselves. This will be the big story going forward as to how you answer the question of why this is so. Is CFS a compensatory response to reduce serious disease and early death? I will say that Dr. Jason's assertion (or perhaps it is only the U-tube's assertion) that death occurs 25 years before they should have died is a fallacy as that number is drawn from the average age of all those who actually "died" and not a large group of CFS cases. In addition, perhaps a third of deaths occur by suicide in the young CFS cases and that will skew that number of 25 years before their time.

"The U-tube's final assertion that XMRV is a killer is somewhat exaggerated, at least in CFS. It certainly can be a killer but the U-tube video paints the death rate as much higher than it really is in CFS. In their defense, XMRV is a killer but more-so in the non-CFS but infected cohort which I think will be much larger than CFS itself and drives many cancers to be very aggressive with much higher death rates than would otherwise occur (see Singh et al, PNAS, 2009). XMRV may also be driving the epidemic of diastolic heart failure now seen in those over 70 and most die quickly within five years once admitted to hospitals for heart failure (see Owan et al, NEJM, 2006). XMRV may well be a killer, but the paradox is that not as much a killer in CFS unless perhaps they reach age 72 or above but that is near our present human life expectancy. The most interesting question of all is how did they live that long with such a killer virus and with such severe disability comparable to heart failure?"

Paul Cheney, M.D.

Monday, October 31, 2011

6 Ways to Live Successfully With Aphasia - CNN

 
Many CFS patients have word-finding problems (aphasia)

Interesting concept....

 
"There is now evidence that depression is an inflammatory disorder"

Sunday, October 30, 2011

Fibro hurts, but we rock!

 
One of the more insidious difficulties of Fibromyalgia is dealing with friends and family members who refuse to believe there is anything wrong with you. They can't "see" Fibromyalgia and they certainly can't "feel" it. So why would a rational person look at a syndrome with credibility that even many doctors don't? Adding confusion to the matter, those who do bother to investigate find information, research and con-artists claiming wildly differing theories on the cause.
I actually sympathize with family and friends who are in this position. It's not their fault. And for those of us who believe that description alone constitutes a sufficient method of conveyance, we are wasting our time. People have no reference for pain unless they can physically feel it. So, with that said, here are some new and inventive ways to help your family and friends "feel" your pain.

The Sneak Attack:
Wait until your partner is sleeping in his favorite chair. Then get a letter opener, sneak up on them and stab them in the leg just above the knee (someone actually did this to her brother). When they jump up in pain, screaming in blinding agony…grab your bullhorn and announce: THAT'S HOW I FEEL. (Note: I can never stress enough the importance of bullhorn ownership for the Fibromyalgia patient)

The Spoon Pop
Take a wooden spoon and smack a family member in the back of the head once in a while to remind them of those blinding headaches you get. If you're lucky, and I mean really lucky, they just might stick. Try this on other members of your family as well. Especially that visiting mother-in-law (who's a 50 cent cab-ride-away from being buried alive in your back yard).

Sleepy Time
When your family complains about your naps, start drugging them right before school and work. Let them discover the joys of battling fatigue. Some might consider this a risky proposition, but most Fibromyalgia patients have the proper narcotics and a layman's degree in pharmacology.

The Pickering
When you're out shopping with that insensitive friend, grab a stick pin and randomly poke them in various parts of their body. Make sure that you treat them as if they are imagining the whole thing. You wouldn't want to give them the impression that you are actually buying into their weakness. Be sure to use that term too. "Weakness".

The Indoctrination Theory
If you want to really change the world, start with the children. During the summer tell your kids they are going to play a game. Tell them they are going to play "Mummy" or "Daddy". Don them in leg and wrist weights, which they must wear 24/7. Only allow them 4 hours of sleep per night, however, they still have to be in their beds for 10 hours. They must spend at least 1 hour per day on the toilet. Give them at least ten tic tacs per day (although they must swallow them, not chew) so they understand the concept of medication and how much you take. Pinch them at various times of the day. All the while, keep telling them that this is what Mommy or Daddy lives with. Be understanding and soothing, but torture them nonetheless. Believe me, after three days, they'll eat their own father.

Turning the Table
In dealing with the misunderstanding concerning "good days and bad days" with fibro patients, your family will often think you're faking. For this, you will have to "lay-in-wait". The next time someone in your family has a cold, make them get out of bed. Be sure to taunt them relentlessly. Accuse them of making it up. When they claim they have a fever, simply tell them "you didn't have one yesterday". Tell them it's just the fever making their body think it's sick and if they don't believe their sick, they won't be. Use their exact words against them. Hey…payback's a bitch.

Pain should no longer be ignored by public health community

 
Estimates suggest that 20% of adults suffer from pain globally and 10% are newly diagnosed with chronic pain each year

Check out CFS Central: Rituximab, Genentech, Tony Fauci and Pertinent Pop Cul

Chronic-Intractable Pain And You - A Chronic Pain Advocacy Site