>>> CHRONIC FATIGUE SYNDROME AS WELL.
>>> CHRONIC CAN HAVE SEVERE NEL FATIGUE SYNDROME
CAN HAVE SEVERE NEUROLOGICAL EFFECTS, AND ZAP A PERSON'S
ENERGY TO THE POINT WHERE SIMPL TASKS COULD LEAVE A PERSON
BEDRIDDEN, BUT CHANCES ARE YOU'VE NEVER HEARD OF THIS COND
IT AFFECTS AS MANY AS 1.5 MILLION PEOPLE NATIONWIDE, AND
28,000 ALONE HERE IN MASSACHUSE CARRIE SALDO TALKS WITH LISA
HALL, A REGISTERED NURSE AT NORTHAMPTON INTEGRATIVE
MEDICINE, AND RIVKA SOLOMON TO LEARN MORE ABOUT IT.
>> SO FOR YEARS NOW IN THE UNITED STATES, THE
DISEASE HAS BEEN IGNORED, BELITTLED, DELEGITIMIZED,
FALSELY DELEGITIMIZED AND HAS NOT GOTTEN NEAR THE RESEARCH
FUNDING IT DESERVES ESPECIALLY SINCE THERE ARE ONE AND A HALF
AMERICANS WITH CFS.
RECENTLY THE TERM UNREST CAME OUT.
JENNBREA WAS SHORT-LIFTED FOR AN OSCAR FOR THIS DISEASE AND
IT HAS CATAPULTED THE DISEASE INTO AMERICAN CONSCIOUSNESS.
>> SHE TALKS ABOUT HOW SHE WAS QUITE HEALTHY AND THEN ALL OF
A SUDDEN BEDRIDDEN BY THIS DISEASE AND TALKS ABOUT THAT
VERY OPENLY.
LET'S TAKE A LOOK AT THE FILM.
♪ ♪ >> I WENT ONLINE AND FOUND
THOUSANDS OF OTHER PEOPLE JUST LIKE ME.
>> YEAH, I AM COMPLETELY BEDRIDDEN.
>> SPENT THE MAJORITY OF MY LIFE HERE.
>> I HAVE CFS, CHRONIC FATIGUE SYNDROME.
>> IT IS CALLED MANY THINGS HISTORICALLY.
>> YOU HAVE BEEN TREATING THIS IN THE REGION FOR QUITE A FEW
YEARS.
HOW DID YOU BECOME AWARE IT HAVE?
>> I WORKED IN THE INTEGRATIVE HEALTHCARE CLINIC AND WE HAVE
BEEN SEEING MECFS SINCE I STARTED WORKING THERE 17 YEARS
AGO.
WE HAVE MANY PATIENTS WITH THIS CONDITION.
AND WE TRIED SO MANY DIFFERENT APPROACHES TO HELP THEM
RECOVER AND WHILE WE CAN OFTEN GET SOME IMPROVEMENT, IT IS
VERY DIFFICULT AND ALMOST IMPOSSIBLE TO GET THEM TO
RECOVER.
>> WHAT ARE SOME OF THE SYMPTOMS THAT PEOPLE
EXPERIENCE?
YOU HAVE BEEN STRUGGLING WITH RIGHT?
>> YES, SO NOT UNLIKE JENN THAT YOU SEE IN THE FILM, MANY
OF US HAVE A SUDDEN ONSET OF THE DISEASE AND FOR ONE-THIRD
OF US, IT IS DUE TO SOME INFECTIOUS DISEASE OR VIRUS,
LIKE FOR ME, IT WAS MONONUCLEOSIS.
>> AND THEN YOU HAD THESE OTHER SYMPTOMS?
>> I GOT MONO AND THEN IT BASICALLY NEVER WENT AWAY.
THE DISEASE WAS CALLED CHRONIC MONO OR EPSTEIN-BARR VIRUS AND
NOW IT IS CHRONIC FATIGUE SYNDROME AND THAT IS WHAT THE
U.S. GOVERNMENT CALLS IT.
THE SYMPTOMS ARE PRETTY SEVERE ENERGY PRODUCTION DEPAIR.
M ENT.
SO YOU ARE LEFT SO DEPLETED THAT MAKING A SIMPLE PHONE
CALL, WALKING UP THE STAIRS, MAKING A SALAD CAN BE MORE
THAN YOU CAN HANDLE.
THERE ARE ALSO BRAIN IMPAIRMENTS.
OFTEN I AM FOGGY OR HAVE DIFFICULTY SPEAKING OR
COMPUTING.
EVEN JUST LAYING OUT A SENTENCE IN MY BRAIN AS TO
WHAT THE BEGINNING OF THE SENTENCE IS, WHAT THE END OF
THE SENTENCE WOULD BE, ALL THAT CAN GET MUDDLED AND THEN
I AM RIDDLED WITH A NUMBER OF VIRUSES.
I HAVE A NUMBER OF LIKE WE HAVE A COMPROMISED IMMUNE
SYSTEM AND OUR BODIES CAN BECOME RIDDLED WITH THESE
VIRUS AND OTHER BACTERIA.
>> SO GIVEN THE PEAKS AND VALLEYS THAT YOU EXPERIENCE,
HOW DO YOU GET PEOPLE TO UNDERSTAND WHAT THEY ARE
EXPERIENCING?
>> THE DIAGNOSTIC CRITERIA HAVE RECENTLY BEEN CLARIFIED.
IT USED TO BE A MEANS OF EXCLUSION, YOU DON'T HAVE
THIS, YOU DON'T HAVE THAT, IT MUST BE MECFS BUT NOW THERE IS
CLEAR CRITERIA, THE INABILITY TO FUNCTION, LOSS TO BE ABLE
TO DO WHAT YOU NEED TO DO.
THE RESTORATIVE SLEEP AND COGNITIVE DYSFUNCTION,
SOMETIMES ORTHOSTATIC HYPERTENSION WHICH MEANS YOU
CAN'T STAND UP WITHOUT GETTING DIZZY, WHEN YOU START TO
FEELING LIKE YOU HAVE TO PUSH THROUGH, DON'T DO IT.
BECAUSE IF YOU PUSH THROUGH THAT BARRIER, OH, LET ME JUST
FINISH THIS TODAY, LET ME HURRY UP SO I WON'T BE LATE.
THAT IS ENOUGH TO THROW A PERSON WITH THIS CONDITION
INTO AN EXACERBATION WHERE THEY ARE SO WORSE AND IT CAN
TAKE WEEKS, MONTHS, YEARS, TO GET BACK TO WHERE THEY WERE
BEFORE.
>> SO HOW ARE YOU WORKED TO NAVIGATE BECAUSE AS YOU SAY,
YOU ARE HERE, SPEAKING VERY CLEARLY, VERY ALERT.
DO YOU KNOW WHEN YOU ARE GOING TO HAVE A GOOD DAY OR A BAD
DAY?
>> NO, THERE IS ABSOLUTELY NO WAY TO PREDICT THIS.
THE ENERGY OUTPUT THAT IS REQUIRING TO BE HERE, I MAY GO
HOME AND HAVE THAT POST-EXERTIONAL CRASH, UNABLE
TO WALK TO THE BATHROOM, AS SIMPLE AS THAT, FOR DAYS,
WEEKS OR MONTHS.
ONE NEVER KNOWS WHEN YOU WILL BE PASSING THAT THRESHOLD OF
YOU PUSHED TOO HARD.
AND THIS IS A CELLULAR ENERGY PRODUCTION IMPAIRMENT SO
SOMETHING THAT IS HAPPENING ON THE CELLULAR LEVEL.
BUT THERE HAS NOT BEEN ENOUGH RESEARCH DEDICATED TO THE
DISEASE SO MULTIPLE SCLEROSIS WHICH IS A TERRIBE
NEUROIMMUNE DISEASE, UNLIKE MECFS HAS HALF AS MANY
PATIENTS AND GETS ALMOST 100 MILLION A YEAR.
AND WE HAVE TWICE AS MANY PATIENTS AND GET $5 MILLION A
YEAR.
RECENTLY LAST YEAR, THE NIH INCREASED THAT BUT ONLY TO
17 MILLION.
>> LISA, DO WE KNOW, THIS IS A CONDITION THAT PREDOMINANTLY
AFFECTS WOMEN.
DO WE KNOW WHY?
>> WE DON'T.
THIS IS WHY THERE NEEDS TO BE MORE RESEARCH.
BECAUSE NOT ONLY DO WE NOT KNOW WHAT CAUSES IT, IT MEANS
WE ALSO DON'T KNOW HOW TO TREAT IT.
THERE ARE MANY THINGS WE CAN TREAT THAT WOULD BE SOMEWHAT
HELPFUL FOR PATIENTS WITH THIS CONDITION BUT REALLY WE DON'T
KNOW HOW TO GET TO THE CORE, DEEP PROBLEM AND MAKE IT
BETTER.
>> SO WHAT ARE SOME OF THE WAYS PEOPLE ARE BEING TREATED
NOW?
>> THE IMPORTANT THING IS TO LOOK AT ALL THE THINGS THAT
COULD BE AFFECTING ENERGY AND THE ABILITY TO FUNCTION.
SO THYROID IS VERY IMPORTANT.
NUTRITION, LOOKING AT ALL THE INFECTIONS THAT COULD BE A
PART OF THE PICTURE.
LOOKING AT SLEEP, ARE THEY GETTING GOOD SLEEP, IS THERE
ANYTHING WE CAN DO TO IMPROVE THEIR SLEEP.
ANOTHER AREA THAT HAS RECENTLY COME UP IS ALL THE TICK-BORNE
DISEASES, ARE THEY STRUGGLING WITH ONE OF THOSE.
THESE ARE ALL THINGS WE CAN TREAT.
WE CAN TEST FOR THEM, WE CAN TREAT THEM.
THE HYPOSTATIC TENSION, THE LOW BLOOD PRESSURE, WE CAN
TREAT THAT.
AND IF YOU ARE ABLE TO FIND ALL THE THINGS THAT AFFECT
THEM AND TREAT THEM, YOU WILL GET A 10, 20 PERCENT
IMPROVEMENT IN THEIR FUNCTIONING.
YOU WILL NOT MAKE THEM BETTER BUT AT LEAST YOU CAN HELP.
>> YOU ARE A PATIENT ADVOCATE AND WHY IS IT WORTH IT FOR YOU
WITH THE EFFECTS OF YOUR HEALTH.
>> I JUST WORK A DAY A WEEK BECAUSE I DON'T HAVE THE
ENERGY TO DO MORE BUT IF WE DON'T ADVOCATE FOR THIS, IT
WILL REMAY BE HIDDEN.
THE MAIN REASON WHY PEOPLE DON'T KNOW ABOUT MECFS IS FOR
30 YEARS, PATIENTS HAVE BEEN TOO SICK TO ADVOCATE FOR
THEMSELVES, FAMILY MEMBERS HAVE NOT BEEN AS INVOLVED AS
WE WOULD LIKE BECAUSE MANY OF THEM HAVE BOUGHT THE LINE THAT
IT IS ALL IN OUR HEADS, NOT REAL AND NOT COMING TO THE
RESCUE OF THE FAMILY MEMBERS WHO HAVE THE DISEASE.
SO UNLESS WE STEP UP AND RAISE AWARENESS, NOTHING IS GOING
TO CHANGE.