Holiday Inn

An ME Conference was held in Belfast on

Saturday 15/09/07 organised by
Derek Peters from NI ME Campaign.

Well Done Derek!!!

Presentations where

given by Vance Spence of ME Reasearch UK,
and Professor Malcolm Hooper.

Vance updated us on current
and future biomedical research projects and

Malcolm looked at the legal end of things.
In attendance were patients and carers.


Frances and Eoin O'Brien travelled all the
way from Dublin.
Really enjoyed your company and thank you
for giving me a little bit of hope!!



























Joan Mc Parland who has been a true friend
to me since last year.
Nice to meet you and  your mum May all the
way from Newry.

Well done to them for making such
a huge effort,
as both Owen and Joan have ME.

It was also very nice to meet up with some
old cyber friends,
in particular Ian Mc llroy who had expended
alot of time and energy
to research and provide some information
for me
with regards to my son David.

It was very much appreciated.

It was unfortunate that time was limited
and we did not get to catch up with the
others in the group.

However we did spend a lovely evening with
Frances and Eoin
who we had for dinner at the Devenish Arms
(not literally, i may add).


A special thank you to Vance
(you are a gentleman),
for making the effort to attend
the conference
and for taking the time
after the conference to
speak to me about my son David.

It was nice to get to know you
a little better and finally
get to meet you in person.

I look forward to seeing
you in October.!!!!

Fundraising Event Winner at FRUIT OF THE VINE

This weeks winner Chris McCotter, Belfast.






FRUIT OF THE VINE have made us their designated charity for the year. We held ballots in their shop, Blacks Road, Belfast and have raised a grand total so far of £480 for ME Research.

Special thanks once again to all the patrons who bought ballots or donated money for our cause.

Many thanks to Anto and Jackie for supplying the hampers.

Don't Give up

A few of us are having a bit of a rough this DD Don’t give up Don’t give up searching for a descent night’s sleep, When dreams & disturbed sleep with bad dreams is all you get, When your body aches right through into your bones, Then you just lay there freezing cold, With the other symptoms here I have not told. Don’t give up dreaming of a normal life, Just because after ever little thing left feeling wiped, The invisible marks that feel like life’s stripes, Wanting to do the things that did not because you pain, Or feeling so tired when hoping to gain that ‘normal’ feeling again. Don’t give up searching for these things, Because some where inside the possibility begins, With medical science, a cure, a hope, When Money for research is available, This Illness is not is not just an imaginary one sick joke. Don’t give up when people scorn or say how we feel is not true, You are not the only-one this has happened to, My lord on the cross felt all our pain, Jesus was not believed time & time again. Don’t give up, just because others may want us or discourage us to do, We know how each of us feels & I believe my lord does to, Hope is alive in each one of us & in this strength I do trust, Don’t give up is a prayer each day & with this hope & faith I will stay. Words given to Robin, 28 March ‘06.
With Peace & Hope to all. From Robin ME sufferer age 45

The Thief of Many Lives

In reply to the Thief of Many lives, What you call yourself is not important, I don't really care how many names you call yourself.

There is something in my so called life that you are not capable of destroying and that is HOPE!!

Yes, you have entered our lives and stripped my innocent child of his normal ability to function at any level above minimal.

But I am here I am my child's VOICE and you cannot take that from me either.

I will fight you with all the energy I have, I will tell as many people as possible about you.

YOU WILL NOT ESCAPE ME WATCH OUT!!!

I will give my child all the constant care that you say I won't.
This is because I LOVE and CHERISH every minute I have with him.
This is because I am a MOTHER!!

Yes, when you steal his nights from my child and do not let him sleep, and cause him so much pain. I am there by his side.

As for his friends who are still climbing the ladder of normality, YOU WILL NOT CATCH THEM, I WON'T LET YOU.

SO you have a fight on your hands, not an easy one I agree.

I am going to WIN not you!!

I will fight you, the government and anyone else who gets in my way along this very difficult journey,I will not let you let us live a life of just existing.

We are going to fight back!!

Just a wee comment to you the Thief
Yes you have taken a lot from my son and our family and all the things you have mentioned sleep reversal,Isolation,loneliness,
despair,concentration and memory difficulties, most of all Pain amongst many many more symptoms.

So I call for anybody reading this PLEASE PLEASE reply DO_NOT let this Thief STEAL OUR LIVES, EVERYBODY HAS A RIGHT TO LIVE LIFE TO THE FULL.
I will find you and I am pleading with people to support me and help me raise funds and awareness of this terrible debilitating illness
I call ME.

I am walking the walk and talking the talk, but I need HELP!!

STRENGTH IN NUMBERS!!

11 September 2007 12:57

GET in shape

Most people with chronic illnesses, such as chronic fatigue syndrome (CFS),
fibromyalgia (FM), and multiple chemical sensitivities (MCS), have been
offered well meaning advice, such as joining a club, getting some exercise,
and getting out more. These infuriating, but well meaning, suggestions often
leave the chronically ill individual feeling misunderstood. After all, would
it be appropriate to tell an paraplegic to have fun by going dancing? Of
course not!

Well meaning friends often believe that chronic illness is psychological and
victims just need to get out and have fun. Or, they may believe that the
victim would not be tired if they got in shape. Or worse, they think the
illness is affecting the chronically ill person at a psychological level and
believe that to be the reason why the ill person does want to go out more
often. In reality, those with chronic illness are quite adept at pacing
themselves to avoid exhaustion. What friends fail to realize is that
exertion is exertion, regardless of work or play. Now science has stepped in
to provide evidence of this.

Researchers in Japan noted that patients with chronic fatigue syndrome
(CFS) report substantial symptom worsening after exercise and took an
interest in the specific time course of the worsening. They investigated the
influence of exercise on the subjective symptoms and cognitive function of 9
female CFS patients and compared them with 9 healthy women. An exercise test
was conducted and monitoring of vital signs, cognitive function, and
psychological status was performed from one week prior to exercise until two
weeks after exercise.

Physical symptoms in the CFS patients did get worse on the fifth day.
However cognitive and psychological status remained constant. There was no
cognitive or psychological benefit to the exercise, yet patients became more
fatigued and suffered physical decline.

Regardless of pleasure or pain, exertion is exertion. Pleasurable exertion
holds the same fatiguing capability for the chronically ill as unpleasurable
exertion. And there are no psychological benefits to boot. The next time we
recommend to a CFS patient to get out more, have fun, and exercise, it might
be best to think twice and opt for a quite home movie that won't make the
person sicker and more discouraged instead.

This post is copyrighted (c) 2007 Lourdes Salvador
http://www.americanchronicle.com/articles/viewArticle.asp?articleID=36333
"Reprinted with Permission"

27th October

Hi everybody, just giving you an update on my Fundraising night in the Devenish Arms.

60 tables have been sold already, don't miss out what is sure to be a fab night all for £6 a ticket or sponsor a table of 10 people for £50.