SECOND OPINION | CHRONIC FATIGUE SYNDROME| BCBS | Full Episode


>>ANNOUNCER: “SECOND OPINION” IS BROUGHT
TO YOU BY BLUE CROSS BLUE SHIELD, ACCEPTED IN ALL 50 STATES. BLUE CROSS BLUE SHIELD – LIVE FEARLESS.>>ANNOUNCER: “SECOND OPINION” IS PRODUCED
IN CONJUNCTION WITH UR MEDICINE, PART OF UNIVERSITY OF ROCHESTER MEDICAL CENTER, ROCHESTER, NEW
YORK.>>DR. PETER SALGO: THIS IS “SECOND OPINION,” AND
I’M YOUR HOST, DR. PETER SALGO. THIS WEEK, “MYTH OR MEDICINE”…>>RALPH JOZEFOWICZ: IS CHRONIC FATIGUE SYNDROME
A PSYCHIATRIC DISORDER? FIND OUT THIS WEEK ON “MYTH OR MEDICINE.”>>DR. PETER SALGO: AND SPECIAL GUESTS DANIELLE AND
TYRONE WARNER. WHAT STARTED WITH WHAT SHE THOUGHT WAS THE
FLU LEFT DANIELLE BEDRIDDEN FOR MONTHS.>>DANIELLE WARNER: IT WAS REALLY A DIFFICULT
TIME, BECAUSE THERE WERE TIMES WHEN I COULDN’T EVEN LIFT A PIECE OF FOOD TO MY MOUTH. HE HAD TO EVEN FEED ME.>>DR. PETER SALGO: IT HAS TAKEN EVERY BIT OF HER
ENERGY TO COME HERE TODAY FOR A SECOND OPINION. DR. PETER SALGO: THANKS SO MUCH FOR BEING HERE,
DANIELLE, TYRONE. WE’RE ALL ANXIOUS TO HEAR YOUR STORY, SO WANT
TO GET RIGHT TO WORK. AND FIRST, WHAT I’D LIKE TO DO IS INTRODUCE
YOU TO YOUR “SECOND OPINION” DOCTORS. THEY’LL BE HEARING YOUR STORY FOR THE FIRST
TIME. THEY’RE 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. EVERYBODY, WELCOME. LET’S GET RIGHT TO WORK. NOW, DANIELLE, WATCHING YOU WALK IN THE STUDIO
TODAY, I COULD SEE IT WAS A STRUGGLE. NOW, UH, I KNOW YOU’VE BEEN SUFFERING FOR
MORE THAN SIX YEARS, RIGHT?>>DANIELLE WARNER: MM-HMM.>>DR. PETER SALGO: AND, UH, THINGS WEREN’T ALWAYS
LIKE THIS, WERE THEY?>>DANIELLE WARNER: NO.>>DR. PETER SALGO: SO, WHY DON’T YOU TELL ME A LITTLE
BIT ABOUT WHAT YOUR LIFE WAS LIKE BEFORE YOU GOT SICK.>>DANIELLE WARNER: SURE. I WAS A HIGH-SCHOOL BIOLOGY TEACHER, AND I
LOVED MY JOB. I WAS SO PASSIONATE ABOUT IT. I FELT LIKE I WAS MAKING A REAL DIFFERENCE
EVERY DAY THAT I WENT TO WORK, AND I WORKED HARD AND LONG HOURS AND ALWAYS BUSY ON THE
WEEKENDS, JUST A REALLY SORT OF FAST-PACED AND VIBRANT LIFE LIVING DOWNTOWN IN THE CITY.>>DR. PETER SALGO: MM-HMM. AND THEN WHAT HAPPENED?>>DANIELLE WARNER: AND THEN, UM, ONE DAY,
I WAS FINE, AND THE NEXT DAY, I WOKE UP WITH WHAT I THOUGHT WAS A TERRIBLE FLU. BUT I JUST NEVER GOT BETTER.>>DR. PETER SALGO: AND YOU WERE HOW OLD?>>DANIELLE WARNER: I WAS 27 WHEN IT HAPPENED.>>DR. PETER SALGO: NOW, WHEN YOU SAY YOU NEVER GOT
BETTER, I WANT TO EXPLORE THAT A LITTLE BIT.>>DANIELLE WARNER: SURE.>>DR. PETER SALGO: YOU HAD THE FLU. TELL WHAT THAT FELT LIKE, FIRST OF ALL.>>DANIELLE WARNER: UM, WELL, IT WAS, AT THAT
POINT, QUITE SIMILAR TO ANY OTHER FLU I HAD EVER HAD. I HAD, UM, FEVER, HEADACHE, SORE THROAT, NAUSEA,
ALL THAT REALLY BAD BODY ACHES, UM, THAT YOU GET, AND JUST KIND OF FELT LIKE I HAD TO GO
TO BED.>>DR. PETER SALGO: OKAY.>>DANIELLE WARNER: SO, I SPENT A WEEK OFF
OF WORK IN BED. UM, BUT I HADN’T REALLY RECOVERED. BUT I FELT SORT OF AFRAID FOR MY JOB, SO I
MADE MYSELF GO BACK TO WORK, EVEN THOUGH I WAS NOT REALLY FUNCTIONAL AT THAT POINT.>>DR. PETER SALGO: OKAY.>>DANIELLE WARNER: AND I STAYED AT WORK UNTIL
I ACTUALLY FAINTED FROM THE ILLNESS, WHICH WAS NEARLY THREE WEEKS LATER.>>DR. PETER SALGO: THREE WEEKS LATER, YOU JUST — YOU
FELL OUT.>>DANIELLE WARNER: I COULDN’T DO IT ANYMORE. YEAH.>>DR. PETER SALGO: OKAY. AND THEN WHAT?>>DANIELLE WARNER: AND THEN I HAD A DOCTOR’S
APPOINTMENT THAT DAY, AND FROM THAT DAY ON, I WAS BEDRIDDEN FOR ABOUT THREE MONTHS.>>DR. PETER SALGO: THREE MONTHS?>>DANIELLE WARNER: YEAH.>>DR. PETER SALGO: AND WHO WAS TAKING CARE OF YOU?>>DANIELLE WARNER: MY HUSBAND, TYRONE, WAS
TAKING CARE OF ME. AND, UM, IT WAS REALLY A DIFFICULT TIME, BECAUSE THERE WERE TIMES
WHEN I COULDN’T EVEN LIFT A PIECE OF FOOD TO MY MOUTH. HE HAD TO EVEN FEED ME, AND I COULDN’T, UM,
PUT A PIECE OF TOAST IN THE TOASTER. LIKE, I WAS JUST SO, UM – JUST SO COMPLETELY
DESTROYED BY THE ILLNESS.>>DR. PETER SALGO: TYRONE, A LOT OF THE BURDEN FELL
ON YOU. THAT MUST HAVE BEEN A TERRIBLE TIME.>>TYRONE WARNER: IT WAS VERY DIFFICULT, AND
IT WAS SHOCKING TO SEE DANIELLE GO FROM, YOU KNOW, JUST LIKE ANYBODY ELSE TO TOTALLY INCAPACITATED.>>DR. PETER SALGO: HOW LONG HAD YOU BEEN MARRIED?>>TYRONE WARNER: UH, AT THAT POINT, MARRIED
FOR ABOUT, LIKE, FOUR YEARS — THREE OR FOUR YEARS.>>DR. PETER SALGO: ALL RIGHT, SO, THAT’S THE STORY
TO THAT POINT. NOW, LOU, YOU’RE A PRIMARY-CARE PHYSICIAN. THEY COME TO SEE YOU.>>DR. LOU PAPA: MM-HMM.>>DR. PETER SALGO: WHAT WOULD YOU BE ASKING? WHAT WOULD YOU BE THINKING ABOUT?>>DR. LOU PAPA: WELL, THAT DEGREE OF, UH, IMPAIRMENT
IS PRETTY SIGNIFICANT WHERE SHE’S BEDBOUND MOST OF THE TIME, SO I’D BE WORRIED ABOUT,
ACTUALLY, A NUMBER OF DIFFERENT THINGS. I’D BE LOOKING FOR ADDITIONAL SYMPTOMS THAT
COULD BE RELATED TO HER HEART, TO PULMONARY FUNCTION, ANY NEUROLOGIC DYSFUNCTIONS, IF
THERE’S BEEN ANY SIGNIFICANT BLEEDING, ANYTHING THAT WOULD GIVE ME A CLUE OF OTHER THINGS
THAT COULD BE CAUSING THIS DEGREE OF PROFOUND –>>DR. PETER SALGO: ALL RIGHT. THIS IS 21ST CENTURY MEDICINE. TESTS ARE THE ANSWER TO EVERYTHING.>>DANIELLE WARNER: [ LAUGHS ]>>DR. PETER SALGO: GO AHEAD AND ORDER AWAY. WHAT DO YOU WANT?>>DR. LOU PAPA: WELL, TESTS ARE THE ANSWER, BUT
ESPECIALLY WHEN IT COMES TO SYMPTOMS LIKE THIS WITH FATIGUE AND — YOU REALLY NEED TO
GET A GOOD HISTORY. THAT’S REALLY IMPORTANT TO POINT YOU IN A
DIRECTION, BUT HAVING SAID THAT, YES. I WOULD BE LOOKING TO SEE IF SHE’S SEVERELY
ANEMIC. I WOULD LOOK TO SEE IF THERE’S ANY SIGNIFICANT
ELECTROLYTE ABNORMALITIES, CERTAIN THINGS LIKE HYPONATREMIA, KIDNEY DYSFUNCTION, HYPERCALCEMIA
— THAT CAN DO THIS — CHECK HER THYROID FUNCTION, CHECK HER HEART FUNCTION, CHECK HER NEUROLOGIC
EXAMINATION. A NUMBER OF THINGS TO MAKE SURE.>>DR. PETER SALGO: YOU SEE THE SMILE OVER THERE? THEY DID ALL THOSE, DIDN’T THEY?>>DANIELLE WARNER: YEAH, DEFINITELY.>>DR. PETER SALGO: AND WHAT WERE THE RESULTS? WHAT DID THEY TEST YOU FOR?>>DANIELLE WARNER: UM, WELL, INITIALLY, MY
DOCTOR — SHE’S MY FAMILY DOCTOR. I’VE ACTUALLY SEEN HER SINCE I WAS EIGHT YEARS
OLD, SO I FEEL REALLY FORTUNATE. I HAVE A GREAT RELATIONSHIP WITH HER, SO A
LOT OF THE HISTORY, SHE ALREADY KNEW, WHICH IS REALLY GREAT. BUT SHE JUST DID SORT OF A GENERAL SCAN OF
BLOOD WORK, SIMILAR TO THINGS THAT YOU SAID — THYROID — AND LOOKING FOR INFLAMMATION
OR ANY SIGN OF CANCERS OR ANYTHING LIKE THAT. AND SHE DID A MONO TEST, AS WELL.>>DR. PETER SALGO: ANYTHING TURN UP POSITIVE?>>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.>>DR. PETER SALGO: MY GUESS IS YOU WERE ALMOST HOPING
FOR SOMETHING TO BE POSITIVE.>>DANIELLE WARNER: EVERY BLOOD TEST THAT
I GET, I HOPE FOR SOMETHING TO BE POSITIVE, AS BAD AS IT SOUNDS, JUST SO THAT I COULD
HAVE AN ANSWER.>>DR. PETER SALGO: WERE THERE DAYS THAT YOU WERE
BETTER, DAYS THAT YOU WERE WORSE?>>DANIELLE WARNER: THE THING ABOUT THIS ILLNESS
IS THAT IT IS UNRELENTING. [ VOICE BREAKING ] IT IS, UM — THERE’S NEVER
A BREAK. THERE’S NEVER ANY REST. IT’S EVERY DAY. SORRY.>>DR. PETER SALGO: IT’S INTERESTING, BECAUSE YOU’RE
SAYING YOU’RE FATIGUED, BONE TIRED, BUT THERE’S NO REST. AND I WANT TO GET BACK TO THAT. DR. ENLANDER, WHAT ARE YOU THINKING?>>DR. DEREK ENLANDER: THIS IS ACTUALLY QUITE A TYPICAL
PRESENTATION FOR THIS DISEASE.>>DR. PETER SALGO: WHICH DISEASE?>>DR. DEREK ENLANDER: UM, IT’S CALLED, ACTUALLY,
IN BRITAIN, WHERE IT WAS FIRST DISCOVERED IN 1955, MYALGIC ENCEPHALOMYELITIS, M.E.>>DR. PETER SALGO: OKAY, BUT THERE’S ANOTHER COMMON
NAME, RIGHT?>>DR. DEREK ENLANDER: CHRONIC FATIGUE SYNDROME.>>DR. PETER SALGO: SO, WHAT YOU’RE TELLING ME IS
THAT, AFTER HEARING THIS STORY AND HEARING ABOUT THE BLOOD TESTS COMING BACK PRETTY MUCH
NEGATIVE, YOU CAN TELL FROM SITTING HERE, BASED ON THIS, THAT IT’S CHRONIC FATIGUE SYNDROME.>>DR. DEREK ENLANDER: NO.>>DANIELLE WARNER: [ CHUCKLES ]>>DR. PETER SALGO: OKAY, SO WHY NOT?>>DR. DEREK ENLANDER: AS LOU SAID, ACTUALLY, ONE
HAS GOT TO TAKE A VERY COMPREHENSIVE HISTORY. WE HAVE TO FULLY EXAMINE THE PATIENT, ACTUALLY,
TO RULE OUT THE POSSIBILITY OF ANY SIMPLE OR COMPLEX DISEASE ENTITY THAT CAN CAUSE FATIGUE. THERE ARE MANY DISEASES THAT CAN ACTUALLY
CAUSE FATIGUE, AS LOU SAID, FROM SIMPLE ANEMIA, THYROID DISEASE, LIVER DISEASE, UH, LUNG DISEASE,
CARDIAC DISEASE, EVEN MULTIPLE SCLEROSIS CAN ACTUALLY PRESENT AS FATIGUE.>>DANIELLE WARNER: YES. I WAS TESTED FOR THAT, ACTUALLY, ON SEVERAL
— SEVERAL LEVELS OF TESTING, BECAUSE I HAD COGNITIVE AND NEUROLOGICAL SYMPTOMS, AS WELL.>>DR. PETER SALGO: I’M GETTING FATIGUED HEARING
THE LIST OF THINGS THAT IT ISN’T.>>DANIELLE WARNER: [ LAUGHS ]>>DR. PETER SALGO: BUT WHEN THEY FINALLY TOLD YOU
YOUR DIAGNOSIS, WHAT PHRASE DID THEY USE?>>DANIELLE WARNER: UM, WELL, I WAS FORTUNATE
TO SEE A DOCTOR IN TORONTO WHO DOES SEE A LOT OF PATIENTS WITH ME/CFS, SO SHE USED ME/CFS
WHEN SHE GAVE ME THE OFFICIAL DIAGNOSIS, ACCORDING TO THE CANADIAN CRITERIA.>>DR. PETER SALGO: WHEN YOU HEARD THE NAME CHRONIC
FATIGUE SYNDROME, WHAT WAS THE FIRST THING YOU THOUGHT?>>DANIELLE WARNER: I WAS VERY, VERY UPSET. I’M EMBARRASSED TO ADMIT THAT I HAD A REALLY
NEGATIVE PERCEPTION OF THE ILLNESS BEFORE I GOT IT.>>DR. PETER SALGO: WELL, YOU’RE NOT ALONE, RIGHT?>>DANIELLE WARNER: YES.>>DR. PETER SALGO: I MEAN, THERE’S A STIGMA, SOMETIMES,
WITH THE NAME.>>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. PETER SALGO: WELL, IF WE’RE GONNA TALK ABOUT
CHRONIC FATIGUE SYNDROME, WHY DON’T YOU GIVE US A DEFINITION?>>DR. DEREK ENLANDER: THE CANADIAN CONSENSUS CRITERIA
IS BASICALLY THE CRITERIA THAT ARE USED, ACTUALLY, TO DIAGNOSE THIS CONDITION BY PEOPLE, ACTUALLY,
WHO ARE FAMILIAR WITH THIS DISEASE. AND IT BASICALLY STATES THAT THE FATIGUE SHOULD
BE SIX MONTHS OR MORE IN DURATION. AND THIS, ACTUALLY, IS ACCOMPANIED BY SEVERAL
SECONDARY SYMPTOMS. INSOMNIA IS ACTUALLY AN IMPORTANT SYMPTOM
THAT ACTUALLY IS SEEN FREQUENTLY.>>DR. PETER SALGO: WHICH IS PARADOXICAL, RIGHT? INSOMNIA IN SOMEBODY WHO’S BONE TIRED AND
NEEDS SLEEP.>>DR. DEREK ENLANDER: YES. ISN’T THAT PECULIAR? AND THE LAST, ACTUALLY, CRITERIA IN THE CANADIAN
CRITERIA — CONSENSUS CRITERIA WAS, ACTUALLY, WHEN ONE EXERCISES, ONE HAS GOT A MALAISE,
A POST-EXERTIONAL MALAISE, P.E.M., 24, 36, OR 48 HOURS AFTER THE EXERCISE.>>DANIELLE WARNER: MM-HMM.>>DR. DEREK ENLANDER: WHICH IS COMPLETELY, ACTUALLY,
PECULIAR TO ANY OTHER TYPE OF EXERCISE. IF YOU OR I EXERCISED, WE WOULD BE TIRED IMMEDIATELY
AFTER THE EXERCISE.>>DR. PETER SALGO: RIGHT.>>DR. DEREK ENLANDER: WE WOULD NOT EXPECT TO BE
TIRED A DAY OR TWO DAYS LATER. AND THEN, ACTUALLY, THE WORST THING, ACTUALLY,
IS, AND DANIELLE AND TYRONE AND I WERE TALKING ABOUT IT, ACTUALLY, EARLIER, IS THAT THE GENERAL
POPULATION WILL SAY TO DANIELLE, “OH, DANIELLE, BUT YOU LOOK TERRIFIC.”>>DANIELLE WARNER: [ CHUCKLES ]>>DR. DEREK ENLANDER: THAT IS PROBABLY THE MOST
DEVASTATING THING ONE CAN HEAR.>>DANIELLE WARNER: [ CHUCKLES ]>>DR. PETER SALGO: I MEAN, YOU DO LOOK TERRIFIC. BUT WHY IS THAT SO DEVASTATING?>>DANIELLE WARNER: WELL, LIKE DR. ENLANDER WAS SAYING, IT COMPLETELY INVALIDATES
THE ILLNESS. BECAUSE IT’S AN INVISIBLE CONDITION, IT MAKES
IT SO DIFFICULT FOR PEOPLE TO UNDERSTAND HOW DEVASTATING AND DEBILITATING IT IS. THERE’S NO VISIBLE SIGN ON MY BODY THAT I’M
SUFFERING. AND SO, WHEN I TELL PEOPLE HOW I FEEL AND
THEY SAY, “OH, BUT HOW CAN YOU FEEL THAT WAY? YOU LOOK SO GREAT,” IT JUST — IT’S LIKE THEY’RE
JUST INVALIDATING –>>DR. DEREK ENLANDER: THEY DON’T BELIEVE DANIELLE.>>DANIELLE WARNER: IT FEELS LIKE THEY DON’T
BELIEVE.>>DR. LOU PAPA: THERE’S A NUMBER OF CONDITIONS LIKE
THAT, RIGHT? CHRONIC FATIGUE SYNDROME, DEPRESSION, I.B.S.,
FIBROMYALGIA ARE ALL CONDITIONS THAT ARE DIAGNOSES OF EXCLUSION, AND THERE’S NOT A GOLD-STANDARD
TEST FOR THEM.>>DR. PETER SALGO: DIAGNOSIS OF EXCLUSION.>>DR. LOU PAPA: RIGHT.>>DR. PETER SALGO: THAT’S A MEDICAL TERM THAT DOCTORS
HATE TO HEAR.>>DR. LOU PAPA: HATE IT.>>DR. PETER SALGO: WHICH IS “IT’S NOT THIS, IT’S
NOT THIS, IT’S NOT THIS. ALL THAT’S LEFT IS THIS. THAT’S WHAT YOU’VE GOT. CONGRATULATIONS.”>>DANIELLE WARNER: DEFINITELY.>>DR. PETER SALGO: SO, IS THERE A TEST? IS THERE ONE TEST HER DOCTORS DIDN’T RUN THAT
SAYS, “THIS IS IT”? IT LIGHTS UP. “YOU’VE GOT C.F.S.” OR WHATEVER YOU’D LIKE TO CALL IT.>>DR. DEREK ENLANDER: GLAD TO TELL YOU THAT RESEARCH
HAS SHOWN, ACTUALLY, THAT THERE ARE SEVERAL TESTS THAT ARE SPECIFIC.>>DR. PETER SALGO: REALLY?>>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. PETER SALGO: THESE ARE ALL IMMUNE-SYSTEM MODULATING
CELLS AND CHEMICALS.>>DR. DEREK ENLANDER: AND WE NOW BELIEVE, ACTUALLY,
THAT THIS IS AN IMMUNE-SYSTEM DYSFUNCTION. AN IMMUNE-SYSTEM DYSFUNCTION IS WHAT’S CAUSING
THE SYMPTOMS.>>DR. PETER SALGO: AND, DANIELLE, BEFORE WE GO TO
BREAK, I JUST HAVE ONE QUESTION.>>DANIELLE WARNER: SURE. YES.>>DR. PETER SALGO: IS THERE EVER A TIME THAT YOU
DON’T FEEL FATIGUED AT ALL?>>DANIELLE WARNER: NO. UM, I’VE — I NEVER WAKE UP FEELING REFRESHED. I NEVER, UM, FEEL NORMAL. I NEVER HAVE A MOMENT WHERE I DON’T FEEL FATIGUED. IT’S CONSTANT ALL THE TIME.>>DR. PETER SALGO: ALL RIGHT. THIS IS A REAL DISEASE.>>DANIELLE WARNER: MM-HMM.>>DR. PETER SALGO: THIS IS A REAL PROBLEM.>>DANIELLE WARNER: IT IS.>>DR. PETER SALGO: AND WITH THAT, I WANT YOU ALL
TO SIT RIGHT HERE, BECAUSE WE’RE GONNA BE RIGHT BACK AND HEAR YOUR SECOND OPINION. BUT FIRST, WE HAVE TO GO TO THIS WEEK’S “MYTH
OR MEDICINE.”>>ANNOUNCER: CHRONIC FATIGUE SYNDROME IS
A COMPLICATED DISORDER THAT IS HARD TO DIAGNOSE. PATIENTS OFTEN FEEL THAT THEIR SYMPTOMS ARE
TRIVIALIZED AND THAT THEY ARE MADE TO FEEL THAT THEIR ILLNESS IS ALL IN THEIR HEAD. COULD THIS BE TRUE? IS CHRONIC FATIGUE SYNDROME A PSYCHIATRIC
DISORDER? IS THIS MYTH OR MEDICINE?>>RALPH JOZEFOWICZ: “CHRONIC FATIGUE SYNDROME
IS A PSYCHIATRIC DISORDER.” THAT IS A LITTLE BIT MYTH AND A LITTLE BIT
MEDICINE, AND I’LL TELL YOU WHY. I’M RALPH JOZEFOWICZ, AND I’M A PROFESSOR
OF NEUROLOGY AND MEDICINE AT THE UNIVERSITY OF ROCHESTER MEDICAL CENTER. CHRONIC FATIGUE SYNDROME IS A COLLECTION OF
SYMPTOMS THAT CAN HAVE MANY CAUSES. THE KEY SYMPTOMS INCLUDE OVERWHELMING FATIGUE,
WORSENED BY EXERTION, DIFFICULTY SLEEPING, MEMORY DIFFICULTY, AND DIZZINESS WHEN STANDING
UP. MANY OTHER DISORDERS CAN CAUSE THESE SYMPTOMS,
INCLUDING CERTAIN INFECTIONS, IMMUNE DISORDERS, ENDOCRINE DISORDERS SUCH AS THYROID DISEASE,
SLEEP DISORDERS, AND DEPRESSION. DEPRESSION IS A CHARGED ISSUE THAT MANY PATIENTS
PREFER TO DISMISS BECAUSE OF THE PERSONAL AND SOCIETAL STIGMA ATTACHED TO PSYCHIATRIC
DIAGNOSES. THE PATIENT IS NOT MALINGERING, AND THE SYMPTOMS
ARE REAL. THAT SAID, THERE IS NO KNOWN CAUSE AND NO
SPECIFIC CURE. CHRONIC FATIGUE SYNDROME IS NOT PURELY A PSYCHIATRIC
DISORDER, BUT DEPRESSION CAN CERTAINLY PLAY A ROLE IN PERSISTENCE OF SYMPTOMS, AND TALK
THERAPY CAN HELP MAKE THE PATIENT GET BETTER. AND THAT’S MEDICINE.>>ANNOUNCER: NOT SURE IF IT’S MYTH OR MEDICINE? CONNECT WITH US ONLINE. WE’LL GET TO WORK AND GET YOU A SECOND OPINION.>>DR. PETER SALGO: AND WE’RE BACK WITH DANIELLE
AND TYRONE WARNER. NICE OF YOU TO STAY WITH US ACROSS THE BREAK. MORE THAN SIX YEARS AGO NOW, DANIELLE, YOU
WERE SUDDENLY STRUCK DOWN. AND YOU ARE STILL ILL…>>DANIELLE WARNER: YES.>>DR. PETER SALGO: …WITH A DISEASE WHICH TOOK
YOU FROM BEING A LIVELY, ENERGETIC 27-YEAR-OLD WOMAN TO SOMEONE WHO’S BEEN BEDRIDDEN WITH
AN INCAPACITATING ILLNESS. BY THE WAY, I UNDERSTAND THAT JUST TO BE ON
OUR SHOW TODAY, YOU CAME IN, WHAT, TWO DAYS EARLY?>>DANIELLE WARNER: YES. [ CHUCKLES ]>>DR. PETER SALGO: TO REST SO THAT YOU HAD ENOUGH
ENERGY TO BE WITH US.>>DANIELLE WARNER: YES.>>DR. PETER SALGO: BY THE WAY, I WANT TO TELL YOU
HOW MUCH WE ALL APPRECIATE THAT.>>DANIELLE WARNER: THANK YOU. I APPRECIATE THE CHANCE TO BE HERE, ALSO TO
FEEL — I FEEL REALLY GREAT THAT IT’S AN OPPORTUNITY FOR PEOPLE TO MAYBE UNDERSTAND A LITTLE BIT
MORE ABOUT WHAT ME/CFS IS REALLY ABOUT. YEAH. THANK YOU.>>DR. PETER SALGO: THIS IS — AND I’M GOING TO USE
THE TERM CHRONIC FATIGUE SYNDROME FOR A REASON. THIS HAS CARRIED A STIGMA WITH IT FOR MANY,
MANY YEARS, AND EVEN AMONG THE MEDICAL PROFESSION.>>DR. LOU PAPA: ABSOLUTELY.>>DR. PETER SALGO: THERE ARE DOCTORS, I SUSPECT
TO THIS DAY, WHO DON’T BELIEVE THAT THIS IS A REAL PROBLEM AND THAT MOST PEOPLE ARE PSYCHOSOMATIC. “IT ISN’T REAL. YOU’RE IMAGINING THIS. YOU’RE FAKING THIS FOR SOME SECONDARY GAIN.” WHEN YOU HEAR THAT, HOW DOES THAT MAKE YOU
FEEL?>>TYRONE WARNER: IT’S REALLY FRUSTRATING
AND IT’S REALLY HARD. YOU KNOW, SOMETHING ELSE THAT I HEAR THAT,
YOU KNOW, OTHER PEOPLE SAY IS LIKE, “SURE. I UNDERSTAND THAT. I GET FATIGUED ALL THE TIME.”>>DANIELLE WARNER: YEAH.>>TYRONE WARNER: IT’S REALLY DIFFICULT AND
FRUSTRATING.>>DANIELLE WARNER: YEAH.>>DR. PETER SALGO: LOU, WE ALL GET TIRED, RIGHT?>>DR. LOU PAPA: RIGHT.>>DR. PETER SALGO: YOU’RE A BUSY DOCTOR. YOU’RE TIRED ALL THE TIME. DO YOU UNDERSTAND THIS DIFFERENCE?>>DR. LOU PAPA: ABSOLUTELY. I MEAN, YOU HEAR THAT KIND OF IMPAIRMENT,
YOU KNOW, WHERE SHE WAS BEDRIDDEN FOR MONTHS AT A TIME. THIS ISN’T JUST KIND OF LIKE USUAL FATIGUE. AND I THINK FOR A LOT OF PHYSICIANS, ESPECIALLY
FATIGUE IS A DIFFICULT SYMPTOM, ‘CAUSE IT JUST ABOUT CAN BE ANY DISEASE.>>DR. PETER SALGO: NOW, YOU SAID THAT THERE MAY
BE SOME HOPE ON THE HORIZON FOR SOME SPECIFIC DIAGNOSTIC TESTS OR AT LEAST SOME — SOME
TESTS THAT CAN POINT YOU IN THE RIGHT DIRECTION. THAT BEING SAID, WE COME TO THE NEXT QUESTION. WHAT CAUSES THIS DISEASE? IF YOU CAN TEST FOR IT, WHAT DOES THAT IMPLY
ABOUT WHAT CAUSES IT?>>DR. DEREK ENLANDER: WE DON’T KNOW. WE REALLY DON’T KNOW. BUT CERTAIN ANTIGENS AND CERTAIN INFECTIOUS
AGENTS HAVE BEEN SUSPECTED.>>DR. PETER SALGO: SUCH AS?>>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. BUT UNFORTUNATELY, THERE WERE THEN PATIENTS,
ACTUALLY, WHO APPEARED WHO DIDN’T HAVE COXSACKIE B. SO, THE IDEA OF POST-VIRAL, ACTUALLY, WAS
SORT OF KEPT AND ABANDONED.>>DR. PETER SALGO: SO, WE’RE KIND OF IN LIMBO HERE.>>DR. DEREK ENLANDER: SO, THERE ARE OTHER VIRUSES
WHICH HAVE BEEN SUSPECTED IN THE PAST. EPSTEIN-BARR VIRUS HAS BEEN, ACTUALLY, ONE
OF THE “CULPRITS.” HHV-6 — HUMAN HERPES VIRUS 6. CYTOMEGALO INCLUSION VIRUS. PARVOVIRUS — PARVO 19. THESE VIRUSES, ACTUALLY, HAVE BEEN THOUGHT
TO HAVE CAUSED AN EFFECT, PERHAPS IN THE METHYLATION CYCLE IN THE IMMUNE SYSTEM.>>DR. PETER SALGO: THAT BEING SAID, WITHOUT A SPECIFIC
VIRUS, AND OUR HISTORY OF TREATING VIRAL INFECTIONS IS NOT GREAT…>>DR. DEREK ENLANDER: RIGHT.>>DR. PETER SALGO: …WHAT ARE THE TREATMENTS THAT
YOU’RE RECOMMENDING RIGHT NOW FOR PEOPLE WITH THIS?>>DR. DEREK ENLANDER: IT DEPENDS ON THE BLOOD TESTS. FOR EXAMPLE, JOSE MONTOYA AT STANFORD THINKS,
ACTUALLY, THAT IF THE PATIENT HAS GOT A TITER, WHICH IS BASICALLY A LEVEL OF VIRAL EXPOSURE,
OF MORE THAN 640, THAT THE PATIENT ACTUALLY SHOULD BE TREATED WITH VALGANCICLOVIR, VALCYTE.>>DR. PETER SALGO: MM-HMM.>>DR. DEREK ENLANDER: AND THIS HAS SHOWN, IN SOME
PATIENTS, ACTUALLY, TO BE VERY HELPFUL.>>DR. PETER SALGO: WITH ALL OF THESE EXPERIMENTAL
TREATMENTS AND INTERESTING THEORIES ABOUT THE DISEASE, WHAT TREATMENT ARE YOU GETTING?>>DANIELLE WARNER: [ LAUGHS ] WELL, I HAVE
AN AMAZING NATUROPATH THAT I SEE IN TORONTO. SHE’S HELPED ME A LOT IN JUST ALLEVIATING
SECONDARY SYMPTOMS. BUT I’M NOT CURRENTLY RECEIVING ANY TREATMENT
WITHIN THE MEDICAL SYSTEM. I SEE MY G.P. REGULARLY, BUT SHE JUST SAYS TO CARRY ON AND
KEEP RESTING.>>DR. PETER SALGO: THERE MAY BE SOME SPECIFICS HERE
THAT YOU’RE NOT GETTING.>>DANIELLE WARNER: YES.>>DR. PETER SALGO: AND IN THE MEANTIME, YOUR LIFE,
AS YOU SAW IT PRIOR TO THIS, IS NOW GONE.>>DANIELLE WARNER: YES.>>DR. PETER SALGO: WHAT’S YOUR VIEW OF ALL THAT?>>DANIELLE WARNER: WELL, UM, IT’S VERY DIFFICULT
TO THINK ABOUT THAT. I-I — EVEN THOUGH THIS DISEASE ISN’T FATAL,
WHICH I THINK IS WHAT LEADS A LOT OF PEOPLE TO MAYBE SEE IT AS LESS SERIOUS, IT IS A DISEASE
THAT STEALS THE LIVES OF PEOPLE WHO HAVE IT AND OF THE PEOPLE CLOSE TO THEM. [ VOICE BREAKING ] I KNOW MY HUSBAND AND I
HAVE BOTH HAD TO GIVE UP ON ALL THE DREAMS THAT WE HAD FOR OUR FUTURE TOGETHER, AND,
UM — SORRY. THE LIFE THAT WE HAD PLANNED TO BUILD — WE
CAN’T HAVE A FAMILY OR, UM, SAVE FOR A HOUSE OR TRAVEL BECAUSE ALL OF THE MONEY THAT TYRONE
MAKES AS OUR SOLE INCOME GOES TO MY MEDICAL TREATMENT. SO, IT’S — IT’S VERY DIFFICULT TO THINK ABOUT
THE LIFE THAT WE HAD AND WANTED VERSUS THE LIFE THAT WE HAVE NOW.>>DR. PETER SALGO: TYRONE?>>TYRONE WARNER: YEAH. AND I THINK THE OTHER DIFFICULTY IS IT FEELS
LIKE LIFE IN A QUAGMIRE. YOU KNOW, WE DON’T REALLY KNOW WHAT CAUSED
THIS DISEASE. WE DON’T KNOW HOW TO TREAT IT. WE DON’T KNOW IF SHE’S GONNA GET BETTER. YOU KNOW, WE DON’T KNOW WHERE TO TURN TO NEXT.>>DANIELLE WARNER: MM-HMM.>>TYRONE WARNER: YOU KNOW, AND IT FEELS LIKE
“GROUNDHOG DAY” EVERY DAY.>>DANIELLE WARNER: YEAH, YEAH.>>TYRONE WARNER: DANIELLE’S VERY COURAGEOUS
IN THE WAY THAT SHE, YOU KNOW, ATTACKS THIS HEAD ON. I KNOW A LOT OF PEOPLE — OR I’VE READ ABOUT
PEOPLE WHO SUFFER FROM CHRONIC FATIGUE AND, YOU KNOW, THEY — THEY SUCCUMB TO DEPRESSION. THEY GIVE UP.>>DANIELLE WARNER: UNDERSTANDABLY.>>TYRONE WARNER: YEAH. DEFINITELY UNDERSTANDABLY.>>DR. DEREK ENLANDER: THIS DEPRESSION IS SECONDARY
DEPRESSION.>>DANIELLE WARNER: AND IF I COULD SAY SOMETHING
ON THAT, WHERE A LOT OF PEOPLE THINK CHRONIC FATIGUE SYNDROME, “OH, YOU’RE TIRED ALL THE
TIME,” BUT ACTUALLY, FATIGUE IS ONLY ONE SMALL FACET OF THE ILLNESS. DR. ENLANDER MENTIONED SOME OF THE THINGS EARLIER
— THE POST-EXERTIONAL MALAISE — BUT THERE’S CONSTANT PAIN, HEADACHES, MUSCLE ACHES, NAUSEA,
LOSS OF APPETITE, COGNITIVE EFFECTS, WHICH IS, FOR ME, THE MOST DIFFICULT PART. I CAN’T READ OR WRITE OR LEARN NEW THINGS,
SO…>>DR. DEREK ENLANDER: PATIENTS HAVE A DIFFICULTY
ACTUALLY EXPRESSING.>>DANIELLE WARNER: YES.>>DR. DEREK ENLANDER: THEY ACTUALLY THINK OF A WORD
OR THINK OF A SENTENCE, AND THEY CANNOT EXPRESS THAT SENTENCE. OR THEY ACTUALLY CANNOT REMEMBER. THERE’S COGNITIVE EFFECTS THAT THEY HAVE GOT
— SHORT-TERM MEMORY LOSS. THEY CAN’T REMEMBER. BUT THERE IS TREATMENT. AND THERE ARE EXPERIMENTAL PROTOCOLS BEING
ACTUALLY LOOKED AT.>>DR. LOU PAPA: FOR THAT PERCENTAGE OF THE POPULATION
THAT’S AFFECTED, YOU KNOW, YOU’RE IN A LARGE CITY, WHICH IS GREAT, BUT IF YOU GET INTO
SMALLER TOWNS, YOU DON’T HAVE THE ACCESS TO THAT.>>DR. DEREK ENLANDER: RIGHT.>>DR. LOU PAPA: AND WITH A DISEASE LIKE THIS WHERE
THE TREATMENTS ARE LIMITED, I CAN GUARANTEE — GUARANTEE, BECAUSE YOUR PRIMARY-CARE DOCTOR
KNOWS YOU SO WELL — IT’S KILLING HER AS MUCH AS IT’S KILLING YOU THAT SHE CAN’T HELP YOU.>>DANIELLE WARNER: I KNOW THAT. I KNOW THAT. YEAH. SHE’S TOLD ME THAT.>>DR. LOU PAPA: IT’S VERY FRUSTRATING.>>DANIELLE WARNER: SHE WANTS NOTHING MORE
THAN FOR ME TO BE WELL, AND SHE SAYS IT EVERY TIME THAT I SEE HER. SO…>>DR. PETER SALGO: WELL, NOW WE’VE COME TO THE PORTION
OF THE BROADCAST WHERE I PROMISED YOU WOULD GET CENTER STAGE. WE’VE GOT THESE WONDERFUL EXPERTS HERE. AND IF YOU WANT ANYTHING ANSWERED, THIS IS
A MOMENT FOR YOU TO GET YOUR SECOND OPINION. SO FIRE AWAY.>>TYRONE WARNER: SO, MY QUESTION WOULD BE,
YOU KNOW, IS THERE HOPE?>>DR. DEREK ENLANDER: YES, THERE IS HOPE. UM, ONE OF THE POINTS IN THIS DISEASE — THAT
STRESS DOES ACTUALLY MAKE THE CONDITION WORSE. BUT THERE ARE, ACTUALLY, SEVERAL PROTOCOLS,
SOME RESEARCH PROTOCOLS AND SOME, ACTUALLY, NON-RESEARCH. SO, THERE ARE SEVERAL POINTS OF ACTION WHERE
THIS DISEASE IS BEING EXPLORED AND BEING TREATED.>>DR. PETER SALGO: THIS IS EXCITING NEWS. THIS IS ALL 21ST-CENTURY MEDICINE. AND IT’S ALL, YOU KNOW, MODULATING STUFF. IT’S FASCINATING, ISN’T IT?>>DR. DEREK ENLANDER: IT’S ACTUALLY VERY, VERY,
VERY HOPEFUL.>>DR. PETER SALGO: THAT’S GREAT.>>DR. LOU PAPA: I THINK THE THING THAT REALLY HELPS
— AND DEREK AND I WERE TALKING A LITTLE BIT ABOUT THIS BEFOREHAND — AT LEAST FOR PRIMARY-CARE
DOCTORS, THE IOM REPORT, AND YOU CAN, YOU KNOW, ARGUE ABOUT THE SPECIFICS –>>DR. PETER SALGO: THAT’S THE INSTITUTE OF MEDICINE.>>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. PETER SALGO: WELL, DANIELLE, TYRONE, I WANT
TO THANK BOTH OF YOU FOR SHARING YOUR STORY WITH US. I KNOW YOU HAD TO BUDGET YOUR TIME AND SET
ASIDE SOME TIME SO YOU HAD ENOUGH ENERGY TO BE WITH US TODAY, AND WE’RE SO GLAD YOU DID. THIS COULDN’T HAVE BEEN AN EASY SACRIFICE
FOR YOU TO MAKE, AND WE’RE DELIGHTED YOU WERE HERE. PANEL, DELIGHTED YOU, TOO, WERE HERE, AS WELL. I’D LIKE TO KNOW WHAT YOU THINK ABOUT TODAY’S
DISCUSSION AND DANIELLE’S SECOND OPINION BY TWEETING US OR BY COMMENTING ON OUR FACEBOOK
PAGE. AND NOW, HERE’S THIS WEEK’S “SECOND OPINION
5.”>>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.”>>DR. PETER SALGO: THANK YOU SO MUCH FOR WATCHING. AND REMEMBER — YOU CAN GET MORE “SECOND OPINIONS”
AND PATIENT STORIES AT OUR WEBSITE AT SECONDOPINION-TV.ORG. YOU CAN ALSO SEND US YOUR SHOW IDEAS AND SHARE
YOUR OWN HEALTH STORY. MAYBE WE’LL INVITE YOU TO BE ON THE SHOW WITH
US. YOU CAN CONTINUE THIS CONVERSATION ON FACEBOOK
AND ON TWITTER, WHERE WE’RE LIVE EVERY DAY WITH BREAKING HEALTH NEWS. I’M DR. PETER SALGO, AND I’LL SEE YOU NEXT TIME FOR
ANOTHER “SECOND OPINION.”>>ANNOUNCER: “SECOND OPINION” IS BROUGHT
TO YOU BY BLUE CROSS BLUE SHIELD, ACCEPTED IN ALL 50 STATES. BLUE CROSS BLUE SHIELD – LIVE FEARLESS.>>ANNOUNCER: “SECOND OPINION” IS PRODUCED
IN CONJUNCTION WITH UR MEDICINE, PART OF UNIVERSITY OF ROCHESTER MEDICAL CENTER, ROCHESTER, NEW
YORK.

Comments 59

  • Thank you for raising awareness and hope by shining a light on this extremely debilitating illness.

  • I really liked the show . But didn't think the extra little movies were correct . Mentioning that depression can play a role in persistence of symptoms . Which really incorrect . ME/CFS is not fatigue but a problem of recovery that takes days weeks or months after the smallest exertion . It's called Post Exertional Malaise ( PEM) . That has nothing to do with depression. You can get depressed and that should be treated but that won't improve your PEM. Not with talk therapy . Heck many patients are not even capable of talking ……
    The second movie at the end didn't even mention PEM the hallmark of this illness which had been the biggest symptom in the Institute of Medicine Report .

    Otherwise the show was perfect . And want to thank you for the support for this terrible illness.

  • Thank you for helping to get this horrible disease out to the public and physicians out there. I have never felt so humiliated and frustrated in all of my life. They appear to look down their nose at me in disbelief, I can read their smirky expressions on their faces with the disbelief they have of me, they appear to believe that I am a hypochondriac, so they pay no attention to what I am trying so hard to tell them. I have most of the symptoms of ME/CFS, so many symptoms that I have to keep them written down to remember them all with my brain fog I have to deal with.
    This disease appears to be turning into an epidemic around the world. But, it does give me a little comfort in knowing I am not alone. I am left on my own to try and find a good doctor that specializes in ME/CFS because my M.D.admittedly knows nothing about it and knows of any physicians that specializes in this field. I live approximately 40 miles East of Birmingham, Alabama and if you happen to know of a good doctor in this direction, I would be so grateful if you would take a moment to let me know.
    I can be reached by my email address and please put in the subject line MECFS DOCTOR RECOMMENDATION or it may be captured by my scam folder. [email protected]
    Thank you in advance for all of your help!!!Debra Wright

  • Dr. Jose Montoya's work is mentioned. Awesome! They're also linking Visual Snow and CFS as well.

  • If it's a Psych issue (which I don't believe) then why does the American Red Cross make it a point to add to their website and Blood Drive paperwork, on Dec 3, 2010…" in the interest of patient and donor safety, the American Red Cross will defer indefinitely any donor who reveals during the donor interview that they have been diagnosed with CFS."?

  • The interview is great, but the breaks, are insulting. First, before I complain about that , THANK YOU for creating awareness for us! ….Dr in the break said"Talk therapy can make the person better"??? Can I slap that guy???? WOW!!! So, talk therapy can make my swollen painful lymph nodes, spleen, and fever go away? hmmm, that was  what he called medicine, quack! Sure we can be depressed from this, but we don't go to a Dr. for that, that's for our therapist if chosen. What we want is Dr.s to start being Dr.s instead of their nurse typing symptoms into a computer, having the possibilities pre-calculated for them, then testing for that, when negative, they shrug their shoulders, say its in your head and kick you out. Dr.s want the easy money today. REAL dr.s like the one on here who said there is actually tests, where can we find them? This is sponsored by BCBS? I have that insurance, but the only Dr.s here that test for CFS etc are functional medicine Dr.s who don't take insurance so even with BCBS, I am up a creak without a paddle. I have slowly recovered a bit thanks to Toby Morrison's program, determination, and alternative/at home treatment, but all Dr.s have done is thrown pharmaceuticals at me that made me sicker or shoved me out the door…. very hard illness to deal with, and as another commenter said, becoming an epidemic. Even my children have chronic low grade fevers and are homeschooled dut to being ill too often. Can you imagine? a single mom with fibro/CFS also homeschooling….. geez, if I can do this, Dr.s can think outside the box!

  • I wish they would have concentrated more on the treatments they said were available, or are on the horizon. What are they and where can we find a doctor who is working on them?

  • Depression complicates many – maybe most – chronic illnesses; anyone who doesn't know this could try imagining what it would be like to be sick (to feel sick) for years – and to know you might never feel better. Despite this, you'd never hear a doctor suggest cognitive-behavioural therapy (CBT) as "first-line treatment" for Crohn's disease, rheumatoid arthritis, diabetes, lupus, multiple sclerosis, or any other chronic illness – except, of course, fibromyalgia, which is a likewise stigmatized illness.

    Of course, CBT might be a useful adjunct to any person with a chronic illness, in helping them to cope with the realities of their new life. For a physician to recommend talk-therapy as "first-line treatment" for CFS, however, speaks volumes to how many doctors see the disorder – as wholly (or mostly) "in your head." Doctors even have a "code word" for it – supratentorial – which sounds impressive, but is simply shop-talk for "neurotic." This attitude is profoundly insulting, and explains why patients seek-out alternative practitioners who are less-likely to dismiss them as simply "depressed."

  • I will be starting Dr. Enlander protocol next week.

  • It's all complete bullshit, they are just lazy as fuck. You don't find Mrs Mbabane in Sudan that has to walk two miles to get clean water struck down with it. It's only middle class people that know they can get away with chilling in bed all day.

  • I hope those of us who suffer from this physical illness, not psychological, will still be alive when these experts apologize for adding insult to injury. I am finding meditation helps to deal with the depression that naturally comes when you ARE sick and seemingly no one understands. Because not much effort, comparatively, no money is put into finding the medical reasons, it will probably be our ancestors who see the apologies. They will stumble on solution as they research other "real" illnesses.

  • Suggesting SEID/MECFS can be a psychiatric problem shows the ineffectiveness of CONVENTIONAL MEDICINE and the lack of understanding of same to this neurological DISEASE. This is a disease of mitochondrial non-energy production. Performing basic duties that everyone takes for granted on a dead non-charging battery is the problem . This is not just 'fatigue' that ordinary people experience. This is not being able to recharge one's battery and trying to run almost on nothing permanently – so one blacks out, as in a blown fuse that you're unable to reset. High time research produces a cure. Problem with CONVENTIONAL MEDICINE is that it looks at the symptoms and not the cause which could be things like influenza viruses infiltrating the cell and changing the DNA; or perhaps immunization e.g. flu vaccine, which gets into the cell and mutates the DNA causing non-energy production. This disease can be so bad that people become disabled and are not able to hold down their regular job and eventually have to give it up because it's hard to look after yourself on 10% of your previous ability.Their lives – are devastated. The disease affects the brain – brain fog & memory and like the patient in this video says…eventually you're unable to read… or function. An autoimmune disease…debilitating!

  • I just saw this show broadcast this morning – April 2017 – and agree with some of the comments about the mischaractrizations – especially the doctor in the short film who says "CBT helps people get better". Give me a break! I've had ME CFS for 6 years and the symptoms are as the young lady described – but, even though fatigue is deeper and more profound fatigue than a non-patient can know, fatigue as a symptom is stressed too much. The other symptoms of almost constant headache, cognitive disfunction, flu like feelings and post exertional symptom exacerbation are usually worse than the bone deep fatigue. While there is no known cure, patients can find symptom management protocols and links to many other resources at the web sites of Health Rising, Phoenix Rising, Simmaron Research and Dr. Bruce Campbell's CFIDS Self Help. Good luck and hang in there.

  • This is overall a great interview. However, the 'Myth or Medicine' segment states that "talk therapy can help make the patient get better." This is dead wrong! …I have had this invisible disease for over twenty years now, and I have started websites and support groups for the countless people with this disease. I can tell you without hesitation, talk therapy can be wonderful for emotional distress while coping with this illness, but it will not help this physical disease to improve. Talk therapy can help anyone dealing with illness to find peace emotionally, but talk therapy won't make diabetes or HIV, or MS or ME/CFS etc. 'get better' or go away. Stop telling people that MYTH please.

    Otherwise, thank you for helping to raise awareness about the horrors of this disease. BRAVO to everyone who survives with this invisible disease. Don't give up! And please keep telling your stories. You are not alone, my friends. LOVE to you ALL ~

  • Question: at the 18:00 mark, when Dr. Derek Enlander talks about measuring the titer, and having "a viral exposure of 640 or higher," which virus is he talking about? He's just named-off 6 viruses, but giving a specific number of 640 suggests that he's speaking about just one of them – but which one? Does anyone have any idea? Thanks.

  • I'm in the hospital now . after being bed ridden for the last two years and told I have me/CFS and my pain is what I can't handle the most …and the Dr says I'm depressed and has put me on anti depressants and anti psychotic meds and high doses of lyrica and I argue with him that this extream pain and weakness and many other symptoms I have is not depression and I need to see a specialist who deals with me/CFS but I'm from near Ottawa Ontario and don't know any place or how to go about getting help ….especially when my dr isn't listening to me….. I can't keep living this way …. two full years in bed …THAT is extreme.This pain is unbearable and the weakness makes me feel like I'm dying and wishing I was some nights as I lay alone cuz it's just too frustrating 🙁

  • biological warfare!!!

  • Marginalizing CFS as a psychological problem is pre-historic logic. Ignorance will not serve the illness, but delay possible treatments.

  • CFS/ME and Fibromyalgia are also key side effects of having taken a fluoroquinolone antibiotic (a broad-spectrum antibiotic).
    Researchers have to start looking at Fluoroquinolone use history. Cipro, Levaquin, Avelox, etc. Side effects are long-term, neurological, etc. and most of these long-term side effects don't usually show for 3 months through years after being "floxed". You can take Cipro, for example, many times over your life, but then that next one (1) pill, can flip you in the hospital. I know a young man, healthy never took antibiotics as an adult, got a UTI and the doctor gave him Levaquin. Within a week he was cramped up, curled up on the floor, and has been in a wheelchair every since. It has now been about 7 years for him. Terrible.

    RESEARCHERS: PLEASE ask about fluoroquinolone use in that patient's history. They can check with their pharmacy to look back over their history to check for the prescriptions. #nofluoroquinolones

  • It's been 15 years since my septicemia which left me with M.E./CFS and still waiting for some kind of constructive help.

  • NO mention made of epstein Barr. Virus. Which when blood tests are done always shows up with suspected .m.e.

  • She looks like a young version of Hillary Clinton.

  • this is a epidemic,, where is the funding? CDC reports one million have this,, big farma is fighting any cure, just treat symptoms for ever and never end there profits, Lyme research has been tooth and nail for all there advancements, the best part of this vid was he announce it is detectable in specialized blood testing,, so your doc cannot to a basic blood test and say your fine it is all in your head take these "depression meds".

  • What was the First opinion then? ALL you ignorant greedy deniers go straight to hell still conflating ME-CFS as any but the Neuro-Immune physical illness this. Please stop the ignorance, the pace trial harmed countless sufferers. Greed has outpaced ethical healthcare by a century. Its cruel to subject this sufferer to your relentless and stupid query which likely cost her weeks in bed. You are a bully to her.

  • These doctors don't have a clue. There are several CFS societies in the UK that are entirely staffed with former sufferers. They should ally with these and defer entirely.

  • As a matter of fact if you have not suffered this hellish affliction or at the very least had a child or mate with it you have no business even commenting on it here. Check out CFS Health or CFS Unravelled.

  • Good video but big nope on the depression thing. What’s depressing and traumatizing is being severely ill and being completely dismissed and even ridiculed by the people you are relying on for help. Having any chronic illness can have a side effect of depression. And of course people can have depression or any mental health condition along with and prior to ME/CFS, just like with literally any other disease or lack thereof. Things like intense and ongoing stress particularly in childhood can lead to a much higher incidence of diseases later on in life, but it isn’t the cause of it or the mechanism behind it; it simply weakens or damages systems within the body that make it more susceptible to the same conditions as those without a history of trauma.

    Otherwise, it’s very refreshing to see this horrific disease and its patients being treated with respect.

  • Sorry folks. Until there is a concrete and real that you can prove and measure, any rational person has to call BS on this. ‘Energy level’, ‘fatigue’… stuff you can’t prove or measure. The funny part is people keep saying ‘you were really sick but couldn’t find an answer’… what exactly makes you sick? Silly

  • I look at this young lady and see so many things in common with me. It has taken me to age 63 to get a bit of a handle on my health. My current diagnosis is Andersen Tawil syndrome with sensory overload and lidocaine resistance. Her facial features are very similar to many of us with this diagnosis. Our symptoms are not typical for a subset of us. We have the episodes of weakness but we also have the chronic fatigue impairment. We also have issues with autonomic function heat and cold intolerance and much more. A few of us who have managed to get our genetic data and in common some of us are finding mutations in atpase, ampd deficiency and even more. Even though my potassium levels are well within normal levels my body is actually potassium deficient. Potassium in not where it needs to be when it is needed. When you have a disorder thought to be so rare you often have to become your own research. For me Polg polymorphism, ampd1 mtrr mutation and more. Many of us have the overbite, retrognathic lower jaw, slightly joined second third and fourth toes. Perhaps she also has a curvature of her pinky finger. No one wants to look for the zebras. I bet she also has joint hypermobility. I only recently learned that there is an atypical type of Primary periodic paralysis that has a huge mitochondrial function tie. I will be trying ribose for ampd1 deficiency coq10 and pqq for mitochondrial function. Support this young woman with the right diet mitochondrial support and see her blossom. Do a genome study with emphasis on inborn errors of metabolism. Separately these deficiencies and issues are not considered life threatening but put them together in a person the devastation to life is horrendous.

  • If its all in the head perhaps they can explain why no one wants me to donate blood ! I must have depressed unhappy blood cells 🙂 They could also explain why VO2 max decreases after exercise with ME/CFS and doesn't recover for days or even weeks. Maybe if I just thought happy thoughts that would change…… NOT.

  • I found this to be one of the most informative interviews I've seen, but I wish they went into more detail about PEM, because well people do not understand this or how we are not merely "fatigued", we are totally exhausted. At the end of the segment, a woman doctor explains 5 things we need to know about CFS. At 24:24 minutes into it, she mentions our symptoms wax and wane but overall patients do not worsen. HELLO??? Lastly, Dr. Erlander thinks by now most doctors should believe it in it. Not from our experiences!

  • I suffer from the disease and my overall health had a lot to do with. Adrenal stress was the main trigger in my situation. It led to insomnia which added more stress. My mild fibromyalgia worsened. I developed Parkinsons to boot. It took me about 6 years before I was able to sleep for a couple.of hours each night. It’s now been another 5 years and I can now sleep two to three hours at a time consecutively. It really helps but I’m still suffering from the other problems, including metabolic syndrome and lower back arthritis and shoulder arthritis from an injury long ago. I’m tackling the problems with a lot supplements, natural herbs and mind saving nootropics.

  • I just tried D-Ribose today after ten years of chronic fatigue… it felt weird at first, like I was dizzy, nauseous had a headache, but in just the past hour that all went away and I feel amazing! I feel better then I have felt in ten years! I feel healthy and normal! I am so grateful! I hope everyone who has CFS can try Ribose and get well fast too! I’m so so so excited because I feel like I can finally have my life back and I didn’t think it was possible!

  • Not sure who was responsible for the 'Myth or Medicine' segment here, but it is unfortunately more myth than medicine, for a couple of reasons:

    Firstly, the main reason there is 'no known cause and no reliable treatments' for ME/CFS is NOT that it's been proven to be essentially some form of depression or other psychiatric condition (it hasn't), but because of the SHOCKING LACK OF BIO-MEDICAL RESEARCH FUNDING being directed to exploring the physical cause/s and finding effective treatments. It is probably the most underfunded and under-researched serious disease in terms of the number of people affected and the severity and functional impact it can have on people's lives.

    Secondly, psychological therapies such as CBT may (if done by experienced and ME/CFS-literate practitioners) be helpful for some people with ME/CFS, to help them manage the impact the illness has on them as effectively as possible, and deal with any secondary depression experienced as a result of the tremendous life losses associated with having this disease. This is no different from using it to help people with say, an MS, HIV or cancer diagnosis. It doesn't prove that MS, HIV, cancer or ME/CFS are therefore psychiatric diseases!

    So far, there's no empirical evidence that psychological or exercise therapies are a cure ME/CFS, despite serious government funding going into trying to prove they are (eg the UK's infamous 'PACE' Trials, which involved serious bias, included subjects who don't have ME/CFS, and whose claimed positive results were negated by multiple other research flaws, as attested to by over 100 ME/CFS experts, statisticians, medical researchers, clinicians and allied health professionals).

    That ME/CFS is a serious physical illness and is not psychological in origin is now fully acknowledged by the major public health agencies in the US, such as the NIH and CDC, as well as being made very clear in the recently published International Diagnostic Criteria, developed by leading international experts in the field.

    Otherwise a useful and well-presented programme – thank you.

  • I have been ill for almost nine years, had the ME diagnosis for seven years. There is NO way this is a psychological issue. I think that it is completely disrespectful and reckless for doctors to even suggest this to people who are as ill as we are. Of course, the mind is a part of the body and they affect each other. Emotional and mental stress will exacerbate my symptoms, but my physical symptoms are constant regardless. I have been in and out of crashes and been bedridden for months. The immense pain of living a life so unfulfilled and not being taken seriously will cause anyone to become depressed or down. The incompetence of previous doctors has caused my illness to worsen and I have progressively gotten less able to live my life. “push yourself, you’re not sick, there is nothing wrong with you”. when I push, I crash. with each crash I get worse overall.

  • The facilitator/host is so freaking annoying. Wish he'd shut the f– up and let people on the panel speak. We are not interested in hearing you, we want to hear the panel

  • The "Myth or Medicine" segment is in variance with the message of the rest of the show and will cause a great deal of confusion with viewers. The show should have never aired with that awful segment which could have been used to tell viewers that depression in M.E. patients is caused by the continual, constant and horrific suffering that we endure. Simply stated: M.E. is not depression. It is not caused by depression. But, it is almost impossible for one to be this ill for a long period of time with an incurable illness and no hope of a cure without becoming depressed. It's the same for many chronic conditions, not just M.E.

  • 7yrs of CFS from working in a building at MILLERCOORS Brewing CO with a documented 100,000sqft MOLD INFESTATION! https://goo.gl/Regswt

  • Viral Encephalomyelitis I believe is a precursor to later autoimmune. I developed this severe case in 1986 at the age of 26 which was diagnosed with a spinal tap that I had inflammation of the  brain and spinal cord. It was said at the time it was most likely either a flu virus or a mosquito bite. The numbness never fully resolved nor the overwhelming fatigue which overtime has gotten worse. In 1992 a severe case of measles was contracted.  Then in years to come multiple bouts of a-septic meningitis resolved into  Adult onset Asthma, Sjogrens Syndrome, Photophobia,  cutaneous Lupus and in 2016 a bout of Aseptic Meningitis didn't resolve and I was left with Small Fibre Neuropathy and Fibromyalgia whilst still having all the other issues.  Life is nothing like it used to be and it is merely an existence at best. Yes on odd days one can punch through the incredible discomfort and enjoy a social outing or a dinner party and with sheer determination get through a full days work out of the home. Not physical work but administration work.  I cannot commit to a full time job, nor to travel overseas as from one day to the next, I don't know how I will be.  It is heartbreaking to wake up each day and having to struggle through every little thing that normally wouldn't take a second thought. Misophonia is another likely suspected affliction as well however a mild form thankfully.

  • Great episode! Wish all docs were like this.

  • I applaud the husband for sticking with her. I'm so grateful for my partner that has stayed by my side while I've been in and out of the doctor and dealing with invisible illness. When you're dealing with these types of conditions, it can feel near impossible to do anything

  • It was good except for the myth portion! Horrible! Some people have depression for having lost their previous life! Can you blame them! It’s secondary! I’m lucky I can still laugh when being carried to the bathroom or spoon fed during severe crashes. Housebound /bedbound over 9 years now. I have EBV, HHV6 and low NK cells.

  • With ME/CFS you play=you pay. You wake up daily with a dead battery. It’s a living death sentence but we keep on fighting no matter what

  • I have suffered from this for 12 years now and I'm only 29 years old… It has taken 12 years to get a diagnosis. This disease needs to be taken more seriously! We need a cure!!!

  • I have had DFS since around 1973. It manifest itself immediately after recovering from mono. I was very ill with mono in the Navy and they gave me a shot of cortisone during one horrible bout with it and said I would be fine tomorrow. The next day I felt great but 30 days later the CFS started to manifest itself with headaches, cognitive problems and muscle fatigue. I was previously very wiry. I was slim but could easily outwork someone a lot larger. Suddenly climbing a set of stairs became painful. I own some land and I'll go out to trim trees. I work for a few minutes until my muscles cramp up and quit – then lay down on the ground in the shade till some strength comes back and repeat.

    While this illness does cause some cognitive problems, any doctor that calls it a psychiatric disorder or the result of a mental illness should be checked for webbed feet and feathers because they are a quack. If you come across such a person – run, not walk, away from them. They are dangerous.

  • I've lived with. Chronic fatigue n fibromyalgia since 1986.now my organs are breaking down .have seen about.10 diff Dr no help .quit 3 jobs over the years.can't work at all now.live on low level soc.sec.77 yrs .old

  • It is hard WORK just living with these diseases.

  • chronic fatigue is a neurological disorder therefore not any medicine or supplement can change that. I find that people who actually recover are ones who are extremely disciplined. Its a lifestyle change. Its eating like a health champ, minimizing stressors, living like a saint and doing whatever it takes relentlessly till you get better. The facts are, there are not a lot people in this world who have that kind of drive, much alone that have cfs too. Recovery is possible but you have to be open and willing to do the uncomfortable work.

  • Throughout the interview Danielle exhibits a less recognized symptom of ME/CFS, which is shortness of breath, or air hunger. If you watch carefully you will see that her speech is measured and includes periodic intake of a deeper breath, similar to what a normal person would do after the exertion of fast walking or rushing to answer the phone.

  • Danielle mistakenly states that no one dies of this disease. It affects different people differently. Some go into remission for a time, some live with a steady state of disability, waxing and waning within a fairly determinate range; but some become progressively worse and die.

    https://youtu.be/yrBAlKtroBw

  • People have died with it

  • The Myth or Medicine segment? He was an idiot.

  • Bit like trying to recharge a mobile phone that won't charge more than a little bit. Then using it once, then it needs to be recharged again. That's our energy level.

  • Yet again I hear symptoms but no real effective treatments. Colon hydrotherapy, acupuncture, Chinese herbs, massage vitamens, chiropractor, u name it I've tried no results have worked

  • I've suffered for 18 years from this illness. The dumb doctor in this video is in my hometown. It's criminal that anyone would think we can talk our way out of bed, with zero energy. I had a nice life, house and career. Now I can take a shower once a week, if I'm lucky. I don't want attention. I want to live life, like everyone else.

  • I'd like to know how Danielle is doing now. Has anyone helped her? Or is she still stuck in bed, hoping for a miracle or death like I am?

  • They are saying there are protocols? What are they?? My Dr could use this information!!! I'm too sick to travel, do I have to exercise? Is it diet? What is it? Can't these protocols be put on the CDC website so our drs can find them to administer these protocols to us? I've had this devastating disease for over 20 years. I actually get good days here and there, have had partial remissions even, just to have it come back full force. Willing to try anything that works.

  • As a sufferer for over 30 years, I can say that “unrelenting” is a good description. But “ fatigue” is not. This fatigue is excruciating and extreme. It is a complete depletion of energy. It is at times , death like. Impossible to understand unless you experience it. .

  • Please have a look at the Gupta program/Amygdala retraining.
    I went well with it and I was absolutely disabled.

    The cause for the condition is an abnormal function of a brain structure called the Amygdala and the Insula. You can retrain the brain with very special techniques.
    It's neurological and has nothing to do with psychological issues or depression.

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