Friday, March 4, 2016

Forgotten Plague

Beyond tired

March 10, Forgotten Plague

By  


This article was published on .

Chronic fatigue syndrome (myalgic encephalomyelitis) is not a well understood disease. It's much worse than the name suggests. This is not about simply feeling tired all the time. Rather, it embodies the inability to exert energy, muscle pain, unrefreshing sleep and even cognitive problems. Forgotten Plague is a documentary that explores this disease. It includes a combination of scientific data and anecdotes by those afflicted with it. Director Ryan Prior has experience with the subject—he was diagnosed with the disease in 2006. As such, he has a deep understanding of its intensity, and brings much of his own story to the film.$12; 6:30 p.m., Thursday, March 10, at the Tower Theatre, 2508 Land Park Drive,www.forgottenplague.com.

 

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Thursday, March 3, 2016

"I got sick; I did not get stupid"

 
I think we all need T-shirts that say "I got sick; I did not get stupid" to wear when dealing with new doctors.
 
I am self-aware.  If the problem really were depression, I would know that I lack motivation to start, not stamina to complete.  If the problem really were my marital status, then I would not have had the same symptoms 6 months before getting married, while married, and years after getting divorced.  A divorce which, incidentally, was my idea and I was thrilled to finally rid myself of the albatross, so no, I wasn't "depressed that he left me".   
 
Think about it -- if a patient has enough backbone to argue with a doctor, the problem cannot possibly be "self-esteem"... someone with no self-esteem would never think they know more than an educated doctor and would believe whatever the doctor says.
 
I know plenty of CFS patients who were successful professionals, well-educated, and therefore should not be dismissed by doctors as being too stupid to understand what's going on.  Some of us know more about the mechanics of this disease than our doctors do.
 
 
 
 
 

Tuesday, March 1, 2016

Check out graze | blog - 10 recipes to add more protein to your breakfast

 
PWCs should have extra protein to promote the body healing itself.

CFS Survey

Hello,
This is an online survey that will help the DePaul University ME and CFS team look at patient opinion.

The introduction explains how to complete the survey.

They are hoping to get at least one hundred people to respond. 

Thank you,

Pat

Monday, February 29, 2016

February 29 -- Rare Disease Day

Recognizing the medical conditions that don't have major funding and political visibility. They're real, too.
 
 
 
 

IS THERE TREATMENT FOR PPS?

Yes. Polio survivors need to ''conserve to preserve,'' conserve energy and stop overusing and abusing their bodies to preserve their abilities. Polio survivors must walk less, use needed assistive devices -- braces, canes, crutches, wheelchairs -- plan rest periods throughout the day and stop activities before symptoms start. Also, since many polio survivors are hypoglycemic, fatigue and muscle weakness decrease when they eat protein at breakfast and small, more frequent, low-fat / higher-protein meals during the day.

ISN'T EXERCISE THE ONLY WAY TO STRENGTHEN WEAK MUSCLES?

No. Muscle strengthening exercise adds to overuse. Pumping iron and ''feeling the burn'' means that poliodamaged neurons are burning out. Polio survivors typically can't do strenuous exercise to condition their hearts. Stretching can be helpful. But whatever the therapy, it must not trigger or increase PPS symptoms.

IS TREATMENT FOR PPS EFFECTIVE?

Yes. The worst case is that PPS symptoms plateau when polio survivors stop overuse abuse. Most polio survivors have significant decreases in fatigue, weakness and pain once they start taking care of themselves and any sleep disorders are treated. However, because of emotionally painful past experiences related to having a disability, many polio survivors have great difficulty caring for themselves, slowing down and especially with "looking disabled" by asking for help and using assistive devices.

 

CND: Chronic Fatigue Syndrome: A polio by another name

Jane Colby, What Doctors Don't Tell You, 6(9)

Research into Post-Polio syndrome and chronic fatigue has-made the astounding discovery that the virus that most often triggers CFS is closely related to the one that causes polio.

Dr. Elizabeth Dowsett, consultant microbiologist of the Southeast Essex NHS Trust who is in the forefront of British CFS research, explains that true CFS (as opposed to fatigue states with other etiologies) strikes one clinically as being polio-like, and it has often been diagnosed as a "non-paralytic polio." "These patients have weakness, pain down their spines and are systemically ill," she says.

 

But if CFS is a type of polio, why doesn't everyone exposed to the relevant viruses develop ME just as they did polio?

It has been forgotten that, as Dr. Thomas Stuttaford of The London Times explains, ". . only a small number of those infected with the polio virus became paralyzed; about 90 percent didn't even realize that they had annthing more threatening than a cold." With polio and CFS, the state of your immune system governs whether you will be susceptible.

 

 

Life as we know it: Dr. Bruno: Parallels in CFS/FMS/Polio

 

 

 

Chronic Fatigue Syndrome: A polio by another name

 

Jane Colby, What Doctors Don't Tell You, 6(9)

Research into Post-Polio syndrome and chronic fatigue has-made the astounding discovery that the virus that most often triggers CFS is closely related to the one that causes polio.

Sunday, February 28, 2016

People Prescribed Opioids Are Not Automatically 'Junkies' - NAIDW i

 
 
Let's look at some statistics in case my personal experience is not enough for you. A study in the American Journal of Psychiatry found that 78% of people addicted to opiates were not prescribed the drug for any medical reason. A study by the Partnership for Drug-Free Kids found that 9 in 10 chronic pain patients tried a non-opiate based treatment before relying on opiates. Oh, and my favorite statistic? 96 percent of chronic pain patients on opioids do not become addicted. That's right. Ninety-six percent.
Here's the issue at the heart of the misunderstanding: 100 million Americans are affected by chronic pain, more than those with heart disease, cancer, and diabetes combined. We are the ones suffering the most from people making light of our struggles. We are the ones being treated like addicts while our bodies attack us. We are the ones suffering. Would you say that someone living with cancer was drug seeking and looking for opiates to get high, not for pain relief? Why would that be okay to someone living with chronic pain?
 
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As a local pain management doctor says, we don't call diabetics "insulin addicts", so why call pain patients addicts when they take a prescription to remain functional?