Chronic Fatigue Syndrome: 'Surrounded by uncertainty'
By James Gallagher Health reporter, BBC News
23 September 2011 Last updated at 23:22 ET
When it comes to controversy and heated debate, few illnesses come
close to Chronic Fatigue Syndrome, also known as Myalgic
Encephalomyelitis (ME).
There have been arguments about whether it exists, the cause, the best
treatments and even the name itself.
These disagreements have reached the level of abuse and death threats.
The disease itself, however, remains poorly understood - or as one
doctor put it: "The whole thing is surrounded by uncertainty".
Does it exist?
For a long time, the existence of CFS/ME was widely dismissed and
labelled as "yuppie flu". That opinion has largely been reversed in
the past decade.
In 2002, then chief medical officer Prof Sir Liam Donaldson described
it as a "disease in the wilderness". He was presenting a report which
said CFS/ME was a "genuine illness and imposes a substantial burden on
the health of the UK population".
It is thought to affect about a quarter of a million people in the UK.
The main symptom is severe fatigue, made worse by exertion, which does
not go away after resting. Muscle pains, headaches, memory problems
and depression can also be involved. In some cases it can be
completely debilitating, resulting in patients being unable to leave
their beds.
Understanding of the disease is largely led by those symptoms. There
is no test for CFS/ME, instead it is diagnosed by ruling out other
conditions which might produce the same symptoms.
The underlying cause, or indeed causes, have been more elusive.
Uncertain origins
One of the issues in the field is that there is an emerging consensus
that CFS/ME is not one illness.
Prof Stephen Holgate, chair of the Medical Research Council group on
CFS/ME, told the BBC: "I think the problem with it is the term is used
as a bit of a dustbin."
In children there are thought to be three sub-groups, and even more in
adults, all given the label CFS/ME.
Prof Peter White, of Barts and the London School of Medicine and
Density, said: "Most specialist doctors and scientists agree that it
is more than one illness. It may be three to five separate illnesses.
"Like kidney failure, it has lots of different causes, but looks the same."
There was a brief moment of hope and optimism that a specific virus -
XMRV - was the cause, however, that link has been largely discredited.
Viruses may have a role as a trigger for the illness, with many
patients reporting that their symptoms started after infection.
Yet this has further levels of complication, as Prof White argues: "If
glandular fever is a trigger but a patient has symptoms five years
later, then it is no longer the Epstein-Barr virus, its something
else."
While there have been suggestions that patients with CFS/ME have
differences in their immune systems, pain perception and hormones, it
is not known whether these are a cause or symptom of a chronic
condition.
There has also been suspicion of a genetic or family element.
In Nature Reviews Neuroscience, Prof Holgate argued: "One is left with
a strong sense that post-viral events are a common trigger of Chronic
Fatigue Syndrome, but how they lead to chronic persistent disease
remains unresolved."
The search for a cure
So far, a cure does not exist.
Prof Michael Sharpe, of the University of Oxford, said: "A pill that
made you better would be great." However, he added, medicine fell well
short of that: "The best shot right now is various forms of
rehabilitation."
The PACE trial, which published results earlier this year, attempted
to find out what the best therapies were.
It examined the use of both cognitive behavioural therapy, which
alters the way people think and cope with their symptoms, and graded
exercise therapy, a gradual and supervised increase in activity
levels.
The trial suggested that patients using these therapies showed lower
levels of fatigue and greater physical function.
Prof Holgate said: "Combining graded exercise therapy and cognitive
behavioural therapy has undoubted benefit.
"Yes you can improve, but it mustn't be confused with the underlying cause."
He said these therapies might only be treating secondary symptoms.
However, the study has generated controversy with patients' groups and
charities saying the findings were exaggerated and went against their
own evidence. In Action for ME's 2008 survey of patient experiences,
more than one in three said graded exercise therapy actually made them
worse. They prefer a method known as "pacing" - or learning to live
within limits - which the PACE trial concluded was not effective.
The ME Association's Dr Charles Shepherd said: "We consistently find
pacing is the most effective. I'm not convinced graded exercise
therapy is the answer to this disease, it is something more
fundamental which cannot be reversed, an overly simplistic solution to
an extremely complex problem."
Some people do, however, get much better.
Dr Ester Crawley, who specialises in children with the illness, said:
"The prognosis for adults is poor, but for children it is really good,
up to 94% get better."
She said the reason for this was unclear, but theories included
"neuronal plasticity" - as children's brains are not fully developed,
they can heal better - and "the adult lifestyle being predicated
against recovery".
It is easier to adjust a child's lifestyle, such as doing two hours of
school a day and gradually building it up, which is harder to do with
adults who are in work.
A deeper understanding of the illness is desired by all involved.
Delving into the sub-types of the condition may help in finding
causes, which could also have implications for treating each sub-type.
One hope is that the new biobank of blood samples of CFS/ME patients
being set up at London's Royal Free Hospital will help provide the
answers.
-
Too vague, too precise?
Should the illness be called CFS, ME or CFS/ME?
Doctors prefer the term CFS as the main symptom is fatigue, while ME
has a specific meaning related to inflammation of the brain and spinal
cord.
However, this is not popular with some patients' groups or charities,
which talk about ME as a specific disease, saying "fatigue" is too
broad a term.
Prof Michael Sharpe, of the University of Oxford, said: "The concepts
of CFS and ME have been conflated as CFS/ME. That may be right but it
may be a bit like an apple/banana - we need to be clearer what we are
talking about."
-
Case Study: Victoria Reeves
Victoria said she used to be a "mega-fit, mega-healthy" fell walker
with a job she loved, and was "incredibly happy".
She collapsed in 2005. Two years later a neurologist diagnosed her with ME.
"I just feel incredibly ill all the time, I have no strength to even
wash my face, I very rarely leave the house.
"I think people have a perception of what fatigue is, but not ME at this level."
She says she considers herself lucky that she can still get out of bed
and make a cup of tea.
"I literally cannot do anything, it's an illness that takes your life,
but it doesn't kill you."
-
Diagnosing CFS/ME
-The National Institute of Health and Clinical Excellence recommends
doctors consider diagnosing with CFS/ME when:
-Fatigue is new, persistent and/or recurrent, unexplained by other
conditions, [and] has resulted in a substantial reduction in activity
level characterised by post-exertional malaise
-And a least one of: difficulty with sleeping, muscle and/or joint
pain, headaches, sore throat, difficulty thinking, exertion makes the
symptoms worse, general "flu-like" symptoms or dizziness
-The symptoms have been present for at least four months in an adult
or three months in a child.
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