*ME: more sufferers, more support (Eastbourne Herald, 25 October 2007)*
How a local man used his own experience to bring chronic fatigue syndrome
patients together to talk
Oliver Rooke was 19 when he was struck down by glandular fever.
The Seaford resident was studying at Kent University when he first became
He said, "I went to the university doctor and did some tests and they came
through positive for glandular fever. She said to rest for about four - six
weeks and it would just pass."
But Oliver, now 31, was so ill that a couple of months later he had to leave
his course because he was suffering continuously from mental tiredness.
A year later he was diagnosed with Chronic Fatigue Syndrome (CFS).
Oliver said, "The unique thing about CFS is it's an umbrella term for lots
of things which may have different causes. Mine was triggered by glandular
fever and it can be triggered by stress or trauma."
The illness, which is also known as ME (Myalgic Encephalomyelitis) and can
affect anyone of any age, meant he was unable to return to university.
It is estimated that around 250,000 in Britain are affected by this illness
of unknown cause, which has many different names and symptoms.
Oliver said, "It's a case of managing the symptoms, managing day to day and
trying to live with the illness.
"They set up a clinic in Haywards Heath a couple of years ago that is seeing
patients who have been referred by GPs because they recognise the cases are
Oliver's illness has affected him in that he sometimes has difficulty with
concentration, for example, reading a book, watching a TV programme or
playing a board game can be challenging for him. But other sufferers find
they are physically tired rather than affected mentally and may even
struggle to get out of bed.
Oliver says the best way forward is to keep positive and pace yourself when
doing various activities.
He is currently kept busy with running the Defenders of the Ouse Valley and
Estuary (DOVE) website and is a volunteer for Newhaven Community Employment
Partnership (NewCEP), which aims to assist local people to access work,
learning and volunteering opportunities.
Because of his illness Oliver decided to set up a local branch for fellow
sufferers two-and-a-half-years ago.
He said, "There were groups in existence in the area through the Sussex
ME/CFS Society (a registered charity). There were groups in Lewes and
Eastbourne and I went to a few of these and I thought I would try to start a
local group operating in Seaford to see what the reaction would be.
"In the early days it was quite small but as time has gone on it has
gradually grown and is now quite popular."
The group, which meets once a month at Nott's Coffee House in the town, chat
to each other about their symptoms and how they have been coping.
"It's general support, having someone to listen to and talk to.
"It's good for people because often others they speak to do not thoroughly
understand the illness and how it affects them."
Oliver, who is hoping to eventually work full-time in a job that is
computer-related, has been referred to the clinic in Haywards Heath where
various activities he does are being assessed.
The aim is to build up activities to a level he can manage without
He added, "I think awareness is better now and this is particularly down to
the numbers of sufferers, more and more people are starting to suffer with
it and seeing their doctors and talking to their friends about it. There are
more people who know someone with ME or who have ME.
"I have to try and look at things, things could be worse and so I have got
to try and look at the positive and think of what I can do rather than what
I can't do.
"There are some people who can't get out of bed and are worse off than me."
Anyone who would like more information can call the information line on
01273 674828 or visit the website www.measussex.org.uk Or you can contact Oliver direct on 01323 896741 or e-mail him firstname.lastname@example.org
It is illogical to consider M.E. (Myalgic Encephalomyelitis ) as, both,
synonymous with Chronic Fatigue Syndrome (CFS) and, at the same time, as an
illness subsumed under its umbrella; it can't be both. In fact, it is
neither. M.E. is a discrete neurological illness and trying to treat them
the same is doing nobody any good. It is because chronic fatigue patients
are being added to M.E. sufferers and them all being thought of as people
with M.E . that the number is, erroneously, thought to be increasing (ME:
more sufferers, more support, Eastbourne Herald, 25 October 2007).
It is widely known and agreed that M.E. is frequently preceded by a virus,
such as glandular fever, or, sometimes, by a vaccination, such as for TB or
Hepatitis or, perhaps, by chemical poisoning, though it is not certain
whether any of these is the "trigger" or cause. But, since there are no
figures for each of the suspected culprits, of which I am aware, it is
worrying that Oliver Rooke - and he is not alone in doing this - so confidently ascribes it to stress and trauma when, in 19 years, this Research Psychologist and M.E. sufferer has not known of a single one and believes that there is no evidence for any greater incidence of psychiatric history amongst M.E. patients than in the general population. This is a wild assertion that needs either backing with evidence or - as I believe - withdrawing as a myth that is very unhelpful for research and treatment of M.E.
* * *
Again, the flawed notion of stress and emotional illness is allowed to shout down the patients' own reports of "it started with a virus". Evidence that there is no history of psychiatric problems in the majority of CFS/ME sufferers counts for nothing to the many "experts" who, in actuality, have no clue what they're talking about.
As my own experience demonstrates, if the doctor reads off a long enough list of potential stressors, he will eventually find something to blame your illness on. Something as common as taking a vacation or changing jobs can be a source of stress; next time you get a cold, you should blame the vacation you took two months ago, and not a virus ... that's what these "experts" want CFS patients to do!
Yet, this Research Psychologist, who certainly knows more about psychological problems than the average MD, states confidently that he knows of NOT A SINGLE CASE of True ME/CFS that had a psychiatric origin. There are psychiatricproblems which have fatigue as a symptom, but despite the prevailing notion that CFS and depression are identical, the fact is, there are many symptoms of CFS that are simply unheard of in depression, and a cortisol test can quickly prove which of the two a patient is suffering from. If the patient does not improve when given anti-depressants, then it is quite clear which of the two the patient has ... anti-depressants have repeatedly been proven absolutely useless against CFS/ME. They will work for someone who has depression who was given an erroneous CFS diagnosis, but not for someone who has that post-viral thing that used to be called Myalgic Encephalomyelitis and was renamed CFS.
If you're talking about the type of CFS that I have, the type of CFS that occurred in Incline Village which formed the basis of the original diagnostic criteria, then there is absolutely no proof whatsoever that stress is a "cause". As with any illness, stress can make an existing health condition worse, but a stressor that occurs months later clearly is not a "cause" of the initial health problem.
And the big laugh is that while my doctors were telling me to "avoid stress", they were contributing to my stress by refusing to sign the application for disability benefits that would have reduced my financial stress substantially. They couldn't bring themselves to practice what they were preaching.