Monday, October 17, 2011

Living with ME/CFS

http://www.bmj.com/content/342/bmj.d3836.extract

BMJ 2011; 342:d3836 doi: 10.1136/bmj.d3836 (Published 22 June 2011)
Cite this as: BMJ 2011; 342:d3836

Commentary: Living with CFS/ME
Ollie Cornes

During my career I have co-written several books on computer software,
worked as a software engineer, and set up and sold two small
technology businesses. But in April 1999 I developed tonsillitis with
its usual malaise and fatigue. I naturally assumed I would be back to
health fairly quickly, but, although the tonsillitis cleared, the
malaise and low energy levels persisted. I felt like I was running on
fumes. I had no idea why. Then my health deteriorated further.

Months passed, then a year, and now 12 years. I have occasional
periods when I'm bed bound, and I am often house bound. I'm always
exhausted. I often move around at home like a frail, unstable, elderly
man—at the age of 38. It's certainly made worse by my not knowing what
is causing it.

My general practitioner, and many books, suggested the illness was in
some way psychosomatic ("yuppie flu," not a proper illness). I knew in
myself this wasn't true, but there was a nagging doubt. Maybe they're
right? Am I making this up? Am I really sick?

To ensure the illness was not psychological, I worked extensively with
a psychotherapist. Rather than finding evidence of emotional issues that could cause my symptoms, the therapy suggested the opposite—that, given how sick I am, I have surprisingly good mental health. It delivered no improvement in my health. In fact the only things I have
found that help are to get lots of sleep; to eat a simple diet of
fish, vegetables, and pulses; and to almost entirely avoid meat and
junk food.

Imagine having the flu, being severely jetlagged, and having not slept
for two days but without the sinus and lung congestion—that's the
closest I've found to a description of what this illness is like, but
it understates it. Sickness has become the new normal for me—my "I'm fine, thanks" is probably the same as your "I feel like death, I need to go back to bed."

On a scale of 1-10, my energy levels typically range from three to
five. Since becoming ill I lack mental clarity; I mix up words, and I
have memory problems and trouble focusing. I have an enormous need for
sleep, which never refreshes. There is an overwhelming, permanent, and
intense malaise. Pushing my limits—for example, with aerobic
exercise—provokes a severe worsening.

But I'm actually one of the lucky ones; many are far sicker than me
and largely invisible. Doctors will usually see patients with chronic
fatigue syndrome/myalgic encephalomyelitis (CFS/ME) only on a "good"
day. Nancy Klimas treats both HIV/AIDS and CFS/ME patients at the
University of Miami. In 2009 she told the New York Times, "I split my
clinical time between the two illnesses, and I can tell you if I had
to choose between the two illnesses . . . I would rather have HIV."1

The Canadian consensus case definition criteria for CFS/ME clearly
distinguish it from the UK's broad, wastebasket CFS diagnosis. The
Canadian definition requires the classic symptom of CFS/ME: delayed,
post-exertional malaise and fatigue. Even Peter White, who led the
largest UK CFS study to date, said recently: "The PACE trial paper
refers to chronic fatigue syndrome (CFS) which is operationally
defined; it does not purport to be studying CFS/ME." I believe CFS/ME
is a specific, identifiable disease subset of the UK CFS definition.

Harvey Alter, of the National Institutes of Health, recently said,
"I'm absolutely convinced that when you define this disease by proper
criteria, this is a very serious and significant medical disease, and
not a psychological disease. It has the characteristics of a viral
disease."2

I'm not aware of any treatments offered by the NHS to patients like
me, only illness management (pacing, cognitive behavioural therapy,
and so forth). My view is that because the UK has used such a loose
illness definition we have ended up in this appalling situation where
the term CFS is used to group together people with severe depression
(or other emotional difficulty) with a group of patients who to the
untrained eye look pretty much the same but who have what seems to be
a distinct physical illness, particularly characterised by
post-exertional malaise. I have enormous sympathy with general
practitioners faced with patients who say, "I'm tired all the time. I
just can't get out of bed." How do they tell the difference? I'd like
to see the UK adopt the Canadian definition to encourage research and
new clinical approaches with what we may find is a treatable viral or
immune dysfunction condition.

Notes
Cite this as: BMJ 2011;342:d3836

Competing interests: The author has completed the ICJME unified
disclosure form at www.icmje.org/coi_disclosure.pdf (available on
request from the corresponding author) and declares no support from
any organisation for the submitted work; no financial relationships
with any organisation that might have an interest in the submitted
work in the previous three years; and no other relationships or
activities that could appear to have influenced the submitted work.

Provenance and peer review: Commissioned; not externally peer reviewed.

References
1.Readers ask: a virus linked to chronic fatigue syndrome. New York
Times 2009 Oct 15.
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/.
2.Alter HJ. Blood products advisory committee meeting transcript, 14
December 2010. www.investinme.org/InfoCentre%20Topics%20Dr%20Harvey%20Alter%20BPACM.htm.

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