"Tired" doesn't even come close

Reply to article which emphasises that M.E. is just not fatigue or tiredness
(link below my signature).

Now is your chance to say that people with M.E. know this and wish that
others did too.

letters to the Editor e-mail address is david.hart@haverhillecho.com

Cheers
John
drjohngreensmith@mefreeforall.org

Haverhill Echo Letters

Not only has Karen Steel bagged the best title for an article about
M.E. (*Tired just doesn't come close to ME, Haverhill Echo, 17 April 2008*), she has, in telling the story of M.E. sufferer, Chris Aldis, given the most accurate
account of this dreadfully disabling illness I have ever seen in a newspaper
for general readers, who may not have experienced it before.

Chris meets all the diagnostic criteria for M.E. (*Myalgic Encephalomyelitis*): an overwhelming feeling of lassitude, which does not present like
fatigue usually does and is not refreshed by any number of hours of sleep;
very slow recovery after quite minuscule effort ("post-exertional malaise");
cognitive problems, dizziness and he is prone to relapse if he overdoes
things when feeling a little better. Although Chris says he was depressed,
he was probably more likely, understandably, fed up by being unemployed,
discriminated against, possibly disbelieved and at the lack of social
contact due to the illness, which seems to be have been fixed by a
sympathetic employer. M.E. sufferers, doctors and researchers will recognise
it and say this is exactly what M.E. is  and that it is not fatigue, nor a
psychiatric illness.

So, it would seem logical to publicly fund research, to understand the cause of what M.E is, with the aim of finding a cure and getting adults back to work and children back to school, thus saving on benefits and home tuition, rather than to waste money on what we already know M.E. is not.

Unfortunately, a report by NICE (National Institute for Health and Clinical
Excellence) published in August 2007, recommends the opposite approach. M.E.
sufferers are referred to one of a network of clinics, which cost £millions
to establish, for two treatments, one of which, Cognitive Behaviour Therapy
(CBT) - which was developed for psychiatric illnesses, such as anxiety and
depression - has no lasting benefit for people with M.E. and the other,
Graded Exercise treatment (GET), which leaves some irrecoverably worse after
it. Meanwhile, promising biomedical research projects are turned down by the
Medical Research Council (MRC) and have to rely on charity.

This policy, which leaves people with M.E. languishing ill and starves
research projects which may help them to get better, shows no signs of
changing.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org

http://www.haverhillecho.co.uk/news/Tired-just-doesn39t-come-close.3992758.jp

Tired just doesn't come close to ME
Haverhill Echo
Karen Steel, Deputy Editor
17 April 08

Imagine being so exhausted you sleep for 23 hours, only to wake up, make a
cup of tea and be so drained you need to go back to sleep again.

For some sufferers of ME (Myalgic Encephalomyelitis) or Chronic Fatigue
Syndrome that can be the reality, and as well as dealing with a debilitating
condition, they can face the stigma surrounding what has previously been
known as 'Yuppie flu'.

Now Haverhill man Chris Aldis is talking about his experience of the
condition in the hope it will raise awareness – and he's also hoping to
raise some money to support fellow sufferers by facing his phobia.

ME has traditionally attracted some controversy and confusion, because – as
yet – there is no single understanding of what causes or triggers it,
something backed up by Chris's own experience.

"It was around Christmas 2005, when I was working as a carer with the
elderly in Berkshire. I was really tired and run down, but I just assumed it
was the time of year.

"It got worse and, in February 2006, I collapsed at work and had to go into
hospital.

"I had a week off work, and after that, every time I tried to go back to
work, I relapsed."

Eventually he had to leave the job he loved, and it was at this time he was
sleeping up to 23 hours per day.

Simple actions such as making a cup of tea left him physically and mentally
exhausted, but doctors were unable to shed any light on the condition, and
being forced to give up on what he had planned to be a long-term career left
him depressed.

As well as the exhaustion – which goes far beyond the average person's
experience of 'tiredness' – Chris suffers constant muscle pain, for which he
must take painkillers.

While even the slightest exertion can exacerbate the condition, Chris
learned to manage his symptoms and recognise his limits.

In March 2007, he decided a change in scenery might be needed, and moved to
Haverhill, with the hope of finding work again.

But some potential employers paled at the idea of taking on a person with
ME, who - they possibly imagined - would need to take a lot of time off
work.

He said: "So many people, as soon as they found out I had ME, my application
went in the bin."

One might think the demands of excitable, adventurous and physically active
small children might be beyond the realms of someone with chronic fatigue
syndrome, but Chris applied for a job with Dizzy's Day Nursery, in Hollands
Road, Haverhill, (although he admits he nearly didn't send the application
in) and the nursery was keen to employ him – in fact Chris cannot speak
highly enough of the support they have offered him.

Chris said: "It's a very demanding job, but I work with very understanding
people and they know I'm not the one who's going to be able to go out in the
garden with the children."

Liz Jones, manager of Dizzy's, said: "Chris is a great asset to the nursery,
so if we hadn't employed him, we would have lost out.

He's a great member of the team, and I really don't think he has more time
off than anyone else."

Chris, of Vetch Walk, admits to some resentment towards the ME, because he
is unable to go clubbing like many people his age, but has learned coping
strategies such as waking himself up an hour earlier than he needs to get
up.

There is a support network for young people with ME, called AYME
(Association for Young People with ME) and Chris now wants to raise money
for the organisation by facing his fear of snakes.

He hopes to first be in a room with, and later handle, a snake, being taken
to the nursery on May 13.

Anyone who wishes to sponsor him should contact the nursery on 01440 706246.