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CFS/ME MYTHS
Misinformation can be as harmful as a misdiagnosis. The following are a few of the myths
about Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and the facts.
1. CFS/ME is a disease defined just by a group of symptoms. There are no objective
abnormalities.
Many published studies1-8
report abnormalities of the central nervous system, autonomic nervous system, and
immune system in patients with CFS/ME, abnormalities not present in comparison groups
who are healthy or have other fatiguing illnesses.
2. People with CFS/ME who think they are suffering from a physical illness have a
worse prognosis, which just goes to show that it is their perception of a
physical cause for their illness that is keeping them from functioning normally.
It is more likely that people who think they are suffering from a physical illness have
a worse prognosis9
because they are correct in recognizing that they have a physical
illness, one that doctors do not yet have effective treatments for.
3. Whenever one research group finds a biological abnormality in patients with
CFS/ME, another research group can't find it.
With research on virtually all illnesses, there are always some reports in the
research literature that conflict. The question with CFS/ME or any illness is: Counting
all of the published reports10,11
, and the numbers of patients in all of these reports, do the
great majority of reports involving the great majority of patients find
objective biological abnormalities? The answer for CFS/ME, with regard to studies of
the nervous system and immune system, is yes.
4. CFS/ME only affects white and higher income individuals, and is a relatively rare
disorder.
Recent evidence from community prevalence studies12,13
indicates that CFS/ME is not a YUPPIE disease, and in fact,
it occurs more often among Latino and African-American minority groups and those with
lower incomes. CFS/ME affects from 800,000 to one million individuals in the US, and
thus represents one of the more common chronic health conditions.
5. Cognitive behavior therapy interventions can cure CFS/ME.
Cognitive behavior therapy is widely used to help people cope with chronic illnesses,
both "physical" illnesses and psychological illnesses. While these types of
psychological interventions can help patients with CFS/ME cope better with their symptoms
and deal with the consequences of having a chronic health problem, these types of
intervention do not cure the illness.
14
6. Patients with CFS/ME are either lazy or malingering.
There is no truth to this statement, and many patients with this condition would
like nothing better than to have their old lifestyle back. They are very motivated and
often go to many physicians to find a way of getting better.
15
7. All cases of CFS/ME are caused by the Epstein-Barr Virus (EBV).
These are common misconceptions among primary care providers. The onset of CFS/ME
is sometimes but not always linked with the recent presence of an infection. CFS/ME has
been reported as following acute mononucleosis (a viral infection like EBV), Lyme disease
(a bacterial infection) and Q fever (an infection with a different type of infectious
agent).16
8. Patients with CFS/ME can be cured by exercise.
It is a myth that patients with CFS/ME can be cured by exercise, but it is also a myth
that no one with CFS/ME can ever benefit from some physical activity. For some patients,
a carefully monitored program incorporating paced and non-fatiguing activity can be used
to strengthen and condition muscles. But it is worth noting that Black, O'Connor, and
McCully (2005)17 recently
found that with an average 28% increase over baseline levels of
daily physical activity over for a four week period, patients with CFS/ME indicated they
had worsening overall mood, muscle pain intensity and time spent each day with fatigue.
18
9. CFS/ME is difficult to diagnose.
Actually it is pretty straightforward to diagnose when familiar with the case definition.
It is, however, important to determine whether the Fukuda et al. (1994)
19 or the
Canadian case definition of CFS/ME is being used (Caruthers et al., 2003).
20
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