October 2, 20175:40 AM ET
Health organizations are emphasizing that myalgic
encephalomyelitis/chronic fatigue syndrome is a serious long-term illness, not
a psychological disorder, and that standard forms of exercise do not help.
Instead, they're acknowledging that exercise can make the disease much worse
unless doctors and patients are very careful.
The Centers for Disease
Control and Prevention has already revised its patient guidelines on ME/CFS and is
currently revising guidelines for physicians.
The action by the federal
agency is a significant shift in the years-long controversy over diagnosis and
management of the disease, which is characterized by months of incapacitating
fatigue, joint pain and cognitive problems.
And last week, the
National Health Services in the U.K. said it
would reassess its guidelines for ME/CFS recommending exercise, after 20
members of Parliament signed a petition urging a review.
Doctors and patient
advocates say the update by
the CDC is a major victory for people with ME/CFS, and that a
revision of British guidelines is sorely needed. They are hoping other major
medical sites will follow suit and revise their information on the disease,
which is thought to affect at least a million Americans.
Many websites have
outdated information that perpetuates a key misperception about CFS: "That
you can exercise your way out of this illness," says Dr. Nancy Klimas of
Nova Southeastern University in Miami, who has served on the ME/CFS advisory
committee for the Department of Health and Human Services and has treated
people with ME/CFS for 30 years. "That's just not true. You can exercise,
but you have to be extremely cautious. And it will not cure you."
Even just a small amount
of exercise or simple exertion can make some people much sicker, Klimas says.
"If a doctor sends a
patient to the gym to do endurance exercise, that's going to be a
disaster," Klimas says. "Doctors do that all the time, and these
patients get much, much worse."
In particular, she says,
the British guidelines, set by the National Institute for Health Care and
Excellence, have been harmful for patients.
"They are rooted in
a very controversial study, which suggests people do a much more vigorous and
much more dangerous form of exercise," Klimas says. "Those guidelines
have hurt a lot of people. And they were implemented all around the
world."
The controversial
recommendations on exercise can be tracked back to an influential but
erroneous paper published
in 1989, in which British doctors offered a "new approach" for
treating the disease.
In the paper, the doctors
largely dismissed the disease as psychological. They said the pain patients
felt after exercising was basically in patients' heads. And if they exercised
long enough, these symptoms would subside.
So to treat the disease, the authors presented two
recommendations: cognitive behavioral therapy combined with a gradual increase
in exercise — even if symptoms started to get worse. The therapy was supposed
to help people get over "maladaptive" avoidance of exercise after the
initial illness. "For example, if the patient admitted to thinking 'I feel
tired, I must have done too much,' " the authors wrote, "one might
ask the patient to look for alternative explanations, such as 'I may be tired
because I haven't being doing much lately.' "
Jump ahead 30 years, and
what is known about ME/CFS has greatly evolved, says biologist Mauren Hanson, who studies
ME/CFS at Cornell University.
Doctors now know that the
disease makes people incredibly sensitive to exertion. "There's some level
of exercise that makes your symptoms get worse," Hanson says.
In particular, anaerobic
exercise seems to cause the most problems, Hansen says. When your body doesn't
have enough oxygen to support exercise, lactic acid starts to build up in
muscles.
"This is when you
start feeling out of breath," Hanson says. "There are some expert
ME/CFS physicians who have had success with advising patients what heart rate
their anaerobic metabolism typically kicks in," Hanson explains. "And
then they advise those patients to keep their heart rate below that
level."
The problem is, this
threshold is different for each person. So blanket recommendations for general
exercise programs can be extremely harmful. "I've heard many anecdotal
cases of individuals who found themselves either bedbound or in wheelchairs
after they started exercise programs advised by their physicians," Hanson
says.
But the medical community
has been slow to come up to speed on ME/CFS, Hanson says. Many doctors aren't
aware of the dangers with exercising. Some still have the misperception the
disease is psychological. And you can still find the two original treatment
strategies promoted on major medical websites, such as the Mayo Clinic and WebMD.
The CDC's information
about ME/CFS has evolved over the past few decades. Back in 2006, their
webpages recommended specific types of exercises and even suggested the number
of reps to do. Some patients followed instructions like this and saw their
symptoms get worse.
"I did exactly what
the CDC told me," says Julie Rehmeyer, a science journalist in Santa Fe,
N.M., who wrote a book about
her experience with ME/CFS. "I started with a low level of exercise and
built up slowly. But if I pushed when I wasn't feeling very good, I found that
I would lose the entire next day. I wouldn't be able to walk, get of bed — even
move."
This past summer, the
agency removed the
last remnants of the two controversial recommendations. In particular, the
agency no longer lists cognitive behavioral therapy as a management tool for
ME/CFS. And it removed the phrase "graded exercise," which to many
doctors in the field referred to the controversial strategy promoted by the NHS
in England.
"We had heard from
patients that doctors were using this [guideline] as an excuse to tell
patients, 'you must do more and more exercise,' and that's not what it was
intended to reflect," says CDC spokesperson Jennifer McQuiston.
"We do not want to cause harm."
The new guidelines
emphasize the need for doctor supervision when it comes to exercise programs
for people with ME/CFS, McQuiston says. And doctors need to understand that
this program needs to be tailored specifically for each person.
"We're attempting to
caution health care providers, who may be looking at our website: When managing
a patient with ME/CFS, it can't be a one-size-fits-all program."
No comments:
Post a Comment