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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

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