Memorandum submitted by Neil Riley
I am the Chairman of the ME Association (Myalgic
Encephalopathy/Chronic Fatigue Syndrome).
The major problem our charity faces with getting
our members back into work is that ME is a fluctuating illness.
You never know from one day to the next how much energy you will
have. Planning to do any thing is an absolute nightmare.
How on earth can an employer provide for a person
with ME (PWME):
work that can be done at such
times as the employee is well enough to workthis might
be Thursday morning; Friday afternoon; then the following Tuesday
morningbut the next week it will be entirely different;
work that can be left, perhaps
for days or weeks, until the employee is well enough to work again.
I have not had a holiday in the last 20 years
in which I have been able to even "holiday" each day,
never mind work. I have become familiar with the interiors of
many hotel rooms where I have had to rest whilst the rest of the
family was off sightseeing. The treat of many holidays was just
to be well enough to eat a meal around a table in the hotel restaurant.
I managed to "work" voluntarily for
the CAB for three years. I attended the office Monday and Thursday
so I could rest in between. I did three hours work which left
me shattered. I missed some weeks because I was ill-so then my
colleagues had to step in, read all the files and handle my casework.
Eventually they got fed up with my unreliability and I was always
feeling guilty about letting them down. Not even voluntary organisations
can run their services properly if their volunteers cannot commit
to certain hours and certain days. It is ridiculous to expect
employers to take on PWME , unless those people are in recovery.
Sad to say, 25% of our members are bed-bound and less than 6%
will ever recover to anything like their normal lives.
Can I ask this of you? That any people you employ
to carry out a PCA (Personal Capability Assessment) on a PWME
is provided with training and the necessary literature on ME/CFS.
Our charity will be more than willing to supply a booklet, which
is already supplied to doctors, that contains all the necessary
information. Without detailed knowledge of the illness there will
be huge and unwarranted pressure placed on our members. This can
be avoided with forethought and the best information on the illness
that is available.