Monday, October 19, 2015

Dr. Bell on Understanding Orthostatic Intolerance in CFS

 
Fainting is called 'syncope', and the stage just before fainting is called 'pre-syncope'. One attractive theory about ME is that it is a constant state of pre-syncope.

... However, despite the discomfort, they continue standing, sometimes when their pulse and blood pressure predict that they could not be standing. Seeing a patient whose pulse is 140 or blood pressure falling toward zero yet they are still standing is a mark of how often this happens to them – they are used to it. Ignorant physicians say that ME patients are wimps, yet [most people] would not be able to stand in these circumstances.
 
 
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It's telling that my co-workers would look at me and say "you look awful", but then I'd go to the doctor, feeling just as sick, and he would swear that he saw nothing amiss.  I'd go back to the office with the report of "nothing wrong" and they'd question "is he blind?"

They see what they want to see, and doctors don't want to see that you look like you're sick, wobbly, pre-syncope, if their working diagnosis is "all in her head" or "too lazy to work."  To admit you have orthostatic intolerance would require them to do testing and try to find a reason for it.  Much easier for their brains to deny what their eyes see, and continue to insist you're faking, exaggerating, etc.
 

Sunday, October 18, 2015

Chronic Fatigue Syndrome (Transcript) | Second Opinion

 
RALPH JOZEFOWICZ: IS CHRONIC FATIGUE SYNDROME A PSYCHIATRIC DISORDER? FIND OUT THIS WEEK ON "MYTH OR MEDICINE."
 
DR. DEREK ENLANDER FROM MOUNT SINAI HOSPITAL AND THE NEW YORK ME/CFS CENTER AND DR. LOU PAPA, OUR "SECOND OPINION" PRIMARY-CARE PHYSICIAN FROM THE UNIVERSITY OF ROCHESTER MEDICAL CENTER. 
 
 
 

>> DANIELLE WARNER: EVERYTHING WAS NORMAL, EVEN MY WHITE-BLOOD-CELL, RED-BLOOD-CELL COUNTS WERE NORMAL.

>> DR. PETER SALGO: GOOD GRIEF. HERE YOU ARE REALLY SICK...

>> DANIELLE WARNER: IT WAS SO FRUSTRATING.

 

>> DANIELLE WARNER: THERE'S A VERY HUGE STIGMA. I-I PERSONALLY HATE SAYING THE NAME CHRONIC FATIGUE SYNDROME, BECAUSE THERE'S SO MUCH STIGMA ASSOCIATED WITH IT. AND I THOUGHT THAT MYSELF BEFORE I GOT IT. I THOUGHT, "HOW CAN I HAVE THIS ILLNESS? IT'S NOT EVEN A REAL ILLNESS." UM, BUT NOW I KNOW, OBVIOUSLY, IT'S VERY REAL.

 

>> DR. DEREK ENLANDER: NATURAL KILLER CELLS IN THE IMMUNE SYSTEM ARE SPECIFICALLY DECREASED IN THIS DISEASE. CD4, CD8 CELLS, T CELLS IN THE IMMUNE SYSTEM ARE ACTUALLY DECREASED. CYTOKINES -- IL-2, IL-6, IL-10 -- ARE ABNORMAL.

 

>> DR. DEREK ENLANDER: IT'S NOW THOUGHT, ACTUALLY, THAT MAYBE IT MIGHT BE OF A VIRAL ORIGIN. WHEN MELVIN RAMSAY ACTUALLY FIRST DESCRIBED THIS DISEASE, WHEN HE CALLED IT MYALGIC ENCEPHALOMYELITIS, HE ALSO HAD PREVIOUSLY CALLED IT POST-VIRAL FATIGUE, THINKING THAT IT WAS COXSACKIE B VIRUS. 

 

>> DR. LOU PAPA: INSTITUTE OF MEDICINE -- A VERY RESPECTED ORGANIZATION IN THE U.S. -- THEY'RE THINKERS AND LEADERS IN MEDICINE -- RELEASED A DOCUMENT THAT SAID, "THIS IS REAL. AND WE REALLY NEED TO PUT SOME TIME, WE REALLY NEED TO PUT SOME ATTENTION, AND MOST IMPORTANTLY, WE NEED TO PUT SOME MONEY BEHIND IT TO TRY TO FIGURE OUT WHAT'S GOING ON."

 

>> DR. LISA HARRIS: HELLO. I'M DR. LISA HARRIS, AND I AM HERE TO TELL YOU FIVE THINGS ABOUT CHRONIC FATIGUE SYNDROME. THE FIRST THING TO KNOW IS THAT CHRONIC FATIGUE SYNDROME IS A REAL ILLNESS. IT IS NOT ALL IN YOUR HEAD OR DUE TO A MENTAL DISORDER SUCH AS DEPRESSION. HOWEVER, MANY PATIENTS WITH THIS CHRONIC CONDITION MAY SECONDARILY DEVELOP A PROBLEM SUCH AS ANXIETY OR DEPRESSION. THE NEXT THING TO KNOW IS THAT THERE IS NO SPECIFIC TEST FOR CHRONIC FATIGUE SYNDROME. THE SYMPTOMS ARE NON-SPECIFIC. THIS IS WHY CHRONIC FATIGUE SYNDROME IS OFTEN MISDIAGNOSED. IT MIMICS SO MANY OTHER COMMON CONDITIONS. IT MAY TAKE A LONG TIME TO ARRIVE AT A DIAGNOSIS, AND OTHER, MORE COMMON CONDITIONS WILL FIRST NEED TO BE RULED OUT. ANOTHER THING TO KNOW IS THAT CHRONIC FATIGUE SYNDROME IS MUCH MORE THAN JUST FEELING TIRED. IT IS A CHRONIC DISORDER OF MORE THAN SIX MONTHS OF OVERWHELMING FATIGUE THAT DOES NOT IMPROVE WITH REST. YOU MAY ALSO EXPERIENCE BRAIN FOG AND CHRONIC PAIN. THESE SYMPTOMS MAY WAX AND WANE, BUT OVERALL, PATIENTS DO NOT WORSEN. THE FOURTH THING IS THAT SOME FEEL THAT THE CAUSE OF CHRONIC FATIGUE SYNDROME MAY BE DUE TO AN INFECTION. THE TRUE ETIOLOGY HAS NOT YET BEEN DETERMINED. WE DO KNOW THAT IT IS A DISORDER OF IMMUNE DYSREGULATION. WHILE THERE IS NO CURE AS OF YET, THERE ARE TREATMENTS AVAILABLE. AND LASTLY, IF YOU FIND THAT YOU HAVE CHRONIC UNRELENTING FATIGUE, PERSISTENT MUSCLE OR JOINT PAIN, DIFFICULTY WITH MEMORY OR CLARITY OF THOUGHT, AND HEADACHE, YOU MAY HAVE CHRONIC FATIGUE SYNDROME. AND THAT'S YOUR "SECOND OPINION 5."