GM FORECASTS RADICAL CHANGE - The Founder
GM FORECASTS RADICAL CHANGE - The Founder
GM FORECASTS RADICAL CHANGE - The Founder
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thefounder Monday 29 January 2007<br />
Myalgic Encephalomyelitis<br />
does not kill:<br />
its effects are much<br />
worse. It robs sufferers<br />
of their energy, their independence.<br />
You lose your ability to<br />
perform day-to-day tasks. Things<br />
that we would think commonplace,<br />
like reading a book, even having a<br />
conversation on the phone, can be<br />
distressing and tiring.<br />
ME: what is it?<br />
Until fairly recently, such a<br />
debilitating condition was thought<br />
by some members of the medical<br />
profession to be a figment of the<br />
patient’s imagination; some doctors<br />
even suggested that ME sufferers<br />
were just malingering. ME used to<br />
be known as CFS - Chronic Fatigue<br />
Syndrome - because tiredness was<br />
thought to be the primary symptom.<br />
<strong>The</strong> fatigue an ME patient suffers,<br />
though, is not the fatigue we have<br />
with lack of sleep. <strong>The</strong>ir fatigue is a<br />
physical exhaustion. In fact, some<br />
ME patients have been known to<br />
pass out after low-level exertion,<br />
such as taking a brisk walk. Being<br />
wheelchair bound is an everyday<br />
reality a sufferer will have to face.<br />
According to the latest report<br />
form a Canadian research panel,<br />
more people suffer with ME than<br />
AIDS or even lung cancer. A recent<br />
Department of Health report<br />
estimates anything between 100,000<br />
and 250,000 sufferers in the UK<br />
alone. Yet what do we actually know<br />
about it? <strong>The</strong> answer is saddening:<br />
very little.<br />
New findings<br />
<strong>The</strong> latest, cutting-edge research<br />
published in the Canadian<br />
Consensus Report points to common<br />
physical symptoms that might help<br />
to further understand the condition.<br />
Many of the patients examined by<br />
the researchers showed markedly<br />
decreased respiration levels across<br />
the body. In other words, their body<br />
is unable to process nutrients into<br />
energy as effectively as a normal,<br />
healthy person, leading to sluggish<br />
organ and brain activity and fatigue.<br />
MRI scans of the cerebral cortex,<br />
the part of the brain responsible<br />
for conscious thought and learning,<br />
correlate this theory. <strong>The</strong> risk is that<br />
organs will fail and patients could<br />
die of they over-exert themselves.<br />
New research is slowly starting to<br />
uncover more about the symptoms,<br />
but there is still no known cause.<br />
Diagnosis, however, is still by means<br />
of a checklist; there are no definitive<br />
tests or imaging technologies which<br />
enable a doctor to accurately say yes<br />
or no.<br />
A viral link is a possibility -<br />
many people seem to develop<br />
ME after a viral infection, but the<br />
virus itself cannot be responsible,<br />
since patients have reported many<br />
different illnesses prior to ME. What<br />
is more likely is that the patient had<br />
increased susceptibility and ME is<br />
EDITORIAL & OPINION<br />
<strong>The</strong> unknown disease silently crippling lives<br />
Investigating the latest research in ME<br />
y Adam D’Souza<br />
It is an utter disgrace that we<br />
students are being asked to<br />
pay for a TV Licence if we<br />
wish to keep a television in<br />
the kitchen, as this room is<br />
apparently under its own address<br />
and therefore is not covered by the<br />
six to eight others living in the flat.<br />
When I agreed to pay £100 a week<br />
for my accommodation in Runneymede,<br />
I assumed that meant I<br />
was paying for use of the kitchen as<br />
well.<br />
So not only are the BBC taking<br />
over £700 per flat from us poor students,<br />
they are now charging another<br />
£130 on top of it. This rule needs<br />
to be changed, if students want to<br />
move a TV set into the kitchen occasionally<br />
(in our flat we are partial<br />
to a mass karaoke session with the<br />
TV) then this should be allowed.<br />
<strong>The</strong> University needs to specify<br />
to the licensing board that nobody<br />
the body’s terrible ‘shock’ reaction.<br />
<strong>The</strong> Consensus Report hints that<br />
some patients might have a genetic<br />
predisposition to the illness, though<br />
this is not proven.<br />
Hurdles:<br />
ignorance and<br />
isolation<br />
You might think that with all of<br />
this research the outlook for an ME<br />
sufferer is positive. Unfortunately,<br />
this is far from the truth. <strong>The</strong>re is<br />
still an attitude among key members<br />
of the medical profession that ME is<br />
an ‘imaginary’ condition, despite<br />
the World Health Organisation<br />
categorising it as a neurological<br />
condition alongside Alzheimer’s<br />
and Parkinson’s, for example.<br />
<strong>The</strong> Medical Research Council<br />
has turned down many valuable<br />
projects, including one developing<br />
MRI technology to accurately image<br />
respiration levels in the cortex, on<br />
the grounds that thy ‘did not meet<br />
criteria’. According to charity Action<br />
for ME, the disease costs the UK £3.5<br />
billion per year; surely investing just<br />
a fraction of this amount in research<br />
would help Britain as a whole?<br />
Many ME sufferers are young.<br />
In fact, the group most at risk<br />
from the condition are females<br />
aged 10-25. As a result, one of the<br />
biggest hurdles the ME community<br />
is having to overcome is the lack<br />
of access to education. Some ME<br />
sufferers are fortunate enough to<br />
ROBBERY BONITA NORRIS<br />
TV Licence? Stick it up your...<br />
lives in the kitchen, numerous people<br />
own the kitchen, and therefore<br />
no one is responsible for a TV Licence.<br />
“not only are the<br />
BBC taking £700<br />
per flat from us<br />
poor students, they<br />
are now charging<br />
another £130 on<br />
top of it”<br />
I say ignore this bizarre and downright<br />
rude attempt to squeeze our<br />
flaccid student wallets dry and use<br />
your TV as you like. After all, there<br />
is the age old ‘it’s not mine!’ retort to<br />
fall back on should you find yourself<br />
caught red-handed.<br />
Have any horror<br />
stories about TV<br />
Licences?<br />
What are your<br />
thoughts on the<br />
whole matter?<br />
What if you don’t<br />
watch the BBC,<br />
why should you<br />
pay?<br />
Email John at:<br />
john@thefounder.co.uk<br />
be able to continue their studies in<br />
mainstream education. However<br />
, these are in the minority. Many,<br />
many more have to pull outleaving<br />
them lonely, isolated and<br />
lacking the formal qualifications<br />
the modern world needs. This is a<br />
doubly crippling blow: my personal,<br />
anecdotal experience of ME sufferers<br />
(I have known several people with<br />
the condition) is that ME usually<br />
hits people with above-average<br />
intelligence. Wild speculation,<br />
perhaps, but maybe there is a<br />
physical link between the brain’s<br />
makeup and the risk of developing<br />
ME? <strong>The</strong>re’s excellent potential for a<br />
PhD thesis there, methinks.<br />
Consider the case of my friend,<br />
B. She is my age and would love to<br />
attend university - she is a passionate<br />
scientist, easily devouring anything<br />
from Gray’s Anatomy to Hawking.<br />
Her school was ignorant about ME<br />
and many of the staff believed she<br />
was lazy. Somerset County Council<br />
kept shifting the goalposts regarding<br />
her care provision, leaving her and<br />
her family depressed and isolated.<br />
Virtually no funding exists for<br />
ME provision; the small amount<br />
allocated for special needs education<br />
is quickly snapped up by local<br />
authority special schools, which<br />
focus more on teaching individuals<br />
with severe learning difficulties<br />
basic skills. But this is of little use to<br />
the young ME sufferer who requires<br />
a personal, tailored education to<br />
fast track them towards higher<br />
education.<br />
In fact, until recently, there was<br />
no support organisation focused<br />
7<br />
on providing education for the<br />
considerable number of young ME<br />
sufferers up and down the country.<br />
Falcon Academy was set up by B’s<br />
mother, a former special needs<br />
teacher and education consultant,<br />
to provide tailored courses via the<br />
internet and video conferencing<br />
direct to the home. Harnessing<br />
Academy hopes to link ME patients<br />
up, empowering them with the<br />
knowledge that they are not alone,<br />
that there are others like them.<br />
However, there are still challenges<br />
for the Academy to face, such as<br />
has ringfenced £8.5 million to<br />
establish 21 new treatment centres<br />
chair by MP, Dr Ian Gibson. This<br />
is not enough, though. <strong>The</strong> report<br />
recommends a further £11 million<br />
should be spent on investigating<br />
the root of the disease. <strong>The</strong> report is<br />
good news for patients: it provides<br />
official acknowledgment from the<br />
government that that their condition<br />
is taken seriously. Gibson writes, ‘It<br />
is an illness whose time has come’.<br />
For now, though, B and the rest of<br />
the ME community must sit quietly,<br />
alone at home, and wonder what the<br />
this new technology, Falcon<br />
securing public-sector funding.<br />
Moving forward?<br />
<strong>The</strong> Department of Health<br />
nationwide, following a report<br />
future holds.<br />
B remains anonymous for privacy<br />
reasons. If you have been affected<br />
by the issues in this article, contact<br />
Adam (a.dsouza@rhul.ac.uk)<br />
or <strong>The</strong> <strong>Founder</strong> (john@thefounder.<br />
co.uk) with your responses.<br />
Content with RCS?<br />
How happy are you with the food at <strong>Founder</strong>s Dining Hall? What do<br />
you think of the prices in the Hub and the College Shop? Are you<br />
impressed with the service you receive in Café Jules? And how far<br />
have College gone to earn your Halls rent? Following a number of<br />
requests from students all over campus, <strong>The</strong> Students’ Union is focusing<br />
its campaigning resources on RCS for the remainder of the year,<br />
and we need your help.<br />
To make sure we are targeting areas of College Services that you are<br />
not happy with, we would like you to tell us about your experiences.<br />
We want to hear the good, the bad and the ugly- all your best experiences<br />
and all your worst. It’s important that when we talk to college<br />
we are talking specifics, or we will get nowhere. So do your part and<br />
contact the Campaigns Officer, Joff Manning, and make your voice<br />
heard.<br />
Joff can be contacted by email: campaigns@su.rhul.ac.uk<br />
Or you can join the inevitable Facebook group (RCS campaign) and<br />
take part in active discussion about the pros and cons of RCS.<br />
SURHUL Campaigns Committee