"A Unique Approach to Providing Quality of
By John Herd
Something very unique has been
taking place in the chronic fatigue syndrome (CFS/ME) community and it reached a
magnificent crescendo in September.
For a lucky group of
people who have CFS/ME the isolation that the illness can impose has been
lessened by an idea Alison Petty had two years ago. She created an Internet
based organization and web site called the Brainfog Association (
) - the name
reflecting the cognitive problems so common to this illness. The site is a place
where those afflicted with CFS/ME can partake in fun socialization and friendly
support - sharing aspects of life that can feel out of reach when partially or
completely homebound. Though members may be hundreds or thousands of miles apart
very meaningful friendships abound in the Brainfog Internet community - it feels
like a warm on-line living room.
The words "fun" and "socialization" are
both central components of the on-line community's driving philosophy. Unlike
many CFS/ME web sites that encompass discussion of research, treatment and
political matters, often leading to divergent views and sometimes discord, the
Brainfog.org site has always had a wonderful atmosphere because of its pure
socialization and support orientation.
This year Ally and a group of volunteers brought her
brainchild to the next stage of its metamorphosis by arranging a large gathering
of Brainfog members at the base of Mount
"gathering" does not come close to describing how very unique the Snowdon event
was in the history of CFS/ME or how magnificently wonderful it was for
participants. The Snowdon gathering was planned to be an
extension of what has been created as the Brainfog community, a stripping away
of the thousands of miles of computer and phone cables.
As far as I know,
never before in the history of CFS/ME has a large group, especially such a large
group, approximately 60 people, come together for purely a socially sharing. It
was a celebration of living, friendships and sharing the feeling of grasping
some of the living that can feel so out of reach when one has CFS/ME.
entire Youth Hostel facility called Bryn Gwynant which is situated at the base
obtained for the gathering. A more magnificent setting could not have been
selected. The hostel arrangements and activities were all planned so members
could pace themselves, participating at their own levels of
Prior to the gathering most couldn't help having thoughts of
"How could I even get there?" and "How could I survive all those days with so
many people?" It worked though and it worked wonderfully. Most came with
caregivers or partners to help them and share in the experience. Many traveled
with other members. Getting there and sharing in the experience was very much an
"all for one and one for all" type of experience in which everyone was looking
out for and helping each other. When anyone needed help with anything there
always was someone there to help.
Each time another Brianfogger arrived
at the hostel it was absolutely surreal. Though many had already forged
friendships via cyber text and possibly phone calls, most had not previously
met. They had not shared the real hugs or seen each other's smiles. Seeing that
happen and sharing in it was spectacular. All the arrivals lacked was French
horns, but the repeated waves of excitement and joy with each new arrival was
the stuff of life long memories.
As an observer and participant one of the most thrilling
things to see were all the individuals' satisfaction and joy from just being
able to be there partaking in the experience. How different this kind of quality
living felt compared to the survival mode type of living that the CFS/ME usually
imposes. "Absolutely brilliant" would be an understatement.
the days participants gathered in small groups in the Hostel building and
grounds. People could usually be seen napping on couches or heading off to their
rooms for some quiet time while others socialized and went off for excursions
into the surrounding area. At meal times some had the provided meals while
others either made their own meals due to specialized diets or had assistance in
doing so from caregivers or other members. Planned activities during the
gathering ranged from a welcoming and cookout to a raffled, arts and crafts
activities and a train ride that enabled participants to get to the top of
Being all together atop
Snowdon was a tremendously inspiring
iconic kind of experience. It was entirely different from the usual CFS/ME
living experience. Standing at 3,500 feet in the wind and beauty felt as if it
was a huge accomplishment, a milestone in participants lives. But most exciting
was watching those who were more strongly effected by CFS/ME. What they were
feeling could be seen in their sparkling eyes and tremendous smiles - all smiled
for them and with them. It was a truly liberating and empowering experience for
both the Brainfog members and their caregivers.
On the last day of the
gathering a soap bubbles blowing ceremony was held overlooking the nearby lake
and the Snowdon mountain range. Each bubble blown was a
heart felt remembrance of all those Brainfog members who were unable to attend,
and everyone worldwide who is living with this illness.
organizations have provided invaluable support groups, information resources and
conducted advocacy efforts over the years. The Brainfog Association is the first
though to focus solely upon giving patients back a bit of the social lives and
fun that may have been lost due to the direct and indirect impacts of CFS/ME.
Due to the enormous success of the Brainfog website and of the Brainfog Snowdon
gathering I suspect and hope that this most humanitarian of services will become
a growing movement. It is the very best of people helping people and a glowing
glimpse of how even when life has become very difficult there can still be
quality of life.
To reach the Brainfog Association website go to
To begin the photo scrapbook of John's trip visit
Copyright John Herd, 10/03
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