Tuesday, March 29, 2016

Breakthrough? Or another detour?


Chronic fatigue breakthrough offers hope for millions

02 July 2015
Magazine issue 3028

Misunderstood and neglected for more than 25 years, there is suddenly
new hope for people diagnosed with what was once cruelly called "yuppy

HAVING a condition that no one understands is bad enough. Having one
that many also doubt the existence of is worse. Yet that has been the
unenviable fate of millions of people diagnosed with chronic fatigue

CFS first entered the medical lexicon in 1988 to describe a cluster of
symptoms without an obvious cause that doctors were seeing in the Lake
Tahoe area of Nevada. The principal symptom was debilitating
tiredness, but people also complained of sore throats, headaches,
muscle pain and various other manifestations of general malaise.

The lack of a clear biological cause, the fuzziness of the symptoms
and the fact that many of the people diagnosed were young
professionals opened the door to a smear campaign. The media were
quick to dub CFS "yuppie flu".

Although it has shaken off some of its more pejorative nicknames in
recent years, CFS has struggled to lose the stigma. People with the
syndrome still say they are not taken seriously, blamed for their
illness, or accused of malingering. Treatments are often psychiatric,
which are a great help to many but unintentionally add weight to the
idea that CFS has no physical cause.

Over the years, medical groups have launched campaigns to have CFS
taken more seriously. The latest was in February, when the US
Institute of Medicine proposed making a clean break with the past by
renaming it systemic exertion intolerance disease. This has not caught
on as yet.

The unsatisfactory state of affairs is largely a reflection of the
fact that we do not have a good biological explanation for CFS. That
has not been for lack of trying, but even here the disease seems to be
a magnet for controversy. A paper published in 2009 in Science claimed
to have found an association between CFS and a mouse virus. The paper
was later retracted after other teams failed to replicate the result.

Now there is hope of a breakthrough. Researchers in Norway have been
trialling a drug normally used to knock out white blood cells in
people with lymphoma and rheumatoid arthritis. Two thirds of the
people who took it experienced major remission of CFS symptoms,
essentially returning to normal life, with bursts of vitality
unthinkable while they were ill (see "Antibody wipeout relieves
symptoms of chronic fatigue syndrome").

The discovery – which sprang from a serendipitous observation – offers
more than just the promise of a much-needed treatment. It also
suggests that the symptoms are somehow caused by antibodies originally
produced to fight off an infection. The researchers speculate that
they might disrupt blood flow, leaving muscles drained of energy.

If correct, this brings the scientific story full circle. CFS was
initially suspected to be a "post-viral" syndrome – the lingering
after-effects of an infection with Epstein-Barr. More importantly, it
could offer people diagnosed with CFS both physical relief and
psychological closure.

There are wider implications too. Pain and fatigue without an obvious
cause account for a large percentage of visits to the doctor, and
usually have an unsatisfactory outcome. On top of that, there are many
other conditions – Morgellons, for example – that struggle for
credibility. If the CFS mystery is finally solved, that offers hope to
countless others struggling with unexplained symptoms. It may take
another serendipitous discovery, but science is good at those.

This article appeared in print under the headline "Revitalised"

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