As you know, CHROME has been working very closely with PRIME for well over a year now to ensure that as much as possible of the very valuable data we have collected over the years can be made available to researchers via the PRIME web site. As you all also know, Chris Richards set up CHROME in order to bring the problem of those suffering with severe ME into the light of day. Since that beginning she has been anxious that the information collected should reach those who could sift through it in order to find suggestions as to causes and cures. The small CHROME research group has done some analysis but not enough. Now the PRIME web site gives us the ideal vehicle for presenting this information to researchers.
First, before any data is put on the web site it has to be anonymised. All names of participants, doctors, hospitals and localities are being removed so that no one involved can be identified. An illustration of how this data might appear is attached.Second, before we can go forward, your written permission - or that of your parent or guardian where appropriate - is needed for your data to appear. You will find a reply slip below and we would appreciate it if you could ALL complete and return it in the enclosed stamped addressed envelope. It is essential that ALL forms are returned so that we have a record of who has received this newsletter. We are so grateful that you are all so good at returning your questionnaires and we are sure you will not fail us with this return.
I agree/do not
agree* that the data provided to CHROME for
research into ME in respect of …………………………………………………………………..… may be made
available via the PRIME web site for further research and analysis. I
understand that CHROME and PRIME will take all reasonable measures to
remove
data which identifies individual participants.
(signed)
…………………………………………….. (participant/carer/parent/guardian)*
Full
name ……………………………………………… Date
-----/--------------/2006
* delete as
appropriate
Morphine
resistance
We
have learned recently, from a search of the CHROME data prompted by the
painful
experience of a friend of a trustee, that there is a rare condition
known as
morphine resistance. This means that a person gets little or no relief
from
pain when taking morphine though other pain killers may work better.
Dr
Charles
Shepherd, medical adviser to the ME Association, has taken an interest
in our
data. He has been investigating further the prevalence of this
condition in a
wider population and it’s significance and recently issued this comment
and
advice which we are pleased to be able to pass on to you.
“My conclusion from the
information so far
is that morphine resistance, possibly genetically determined, is
something that
clearly requires further investigation. I will therefore take this
forward with
a pharmacologist and some of my other medical colleagues who are
interested in
drug sensitivity in ME/CFS.
In the meantime I think the
most important
lesson to be learned, and one that some doctors do not appear to be
even aware
of, is that morphine resistance does occasionally occur. And so if
someone with
ME/CFS is being prescribed morphine for severe pain, and doesn't appear
to
benefit, then serious consideration must be given to the possibility of
morphine resistance before simply moving on to trying higher and higher
doses.
Dr Charles Shepherd
Medical Adviser, ME Association”
We would be interested to hear
if any CHROME participants
obtain better relief from pain after changing from morphine to another
medication.
Trustees
Ray Gibbons BSc,
Inge Heinrich PhD MSc,
Geoffrey Jackson PhD, Colin Parratt BSc, Chris Richards PhD, , Mary
Simmonds,
Rev
Ken Street MA
Advisors
Professor Peter O
Behan MD DSc FACP
FRCP, Dr E G Dowsett MB
ChB Dip Bact, Dr Derek Pheby BSc MBBS
MPhil LL.M MFPHM,
CHROME 3 Britannia
Road, London SW6
2HJ phone & fax: 0171 736 3511 e-mail: secretary@chromesw6.co.uk
I think possibly because I pushed myself to go back too soon each time. The first time I had it, was just before I went to interview at London University for a place on a teaching course. I packed in my job because we wanted to have a family and to see if that would make a difference, and then I got a bug and I was a bit slow getting better from that, but I made myself go to the interview.
When
I was in
the United States in 1972, I had a bug and quite a nasty flu but I was
only
there temporarily and I was earning and they didn’t pay any sick pay,
so the
first day I could manage to sit in a chair, I went into work because my
administration work meant that you could sit at your desk, so I don’t
know
whether that sort of brings down your immune system a bit, that was in
1972.
The next one was 1982 and then once I was teaching administration,
because it
was so difficult to get a replacement, without letting the students
down if you
didn’t go in. I did go in and teach,
which may have contributed to all this.
I think possibly because I pushed myself to go back too soon each time. The first time I had it, was just before I went to interview at (university) for a place on the (subject) course. I packed in my job because we wanted to have a family and to see if that would make a difference, and then I got a bug and I was a bit slow getting better from that but I made myself go to the interview.
When I was in (country) in 1972 I had a bug and quite a nasty flu but I was only there temporarily and I was earning and they didn’t pay any sick pay, so the first day I could manage to sit in a chair, I went into work because my (job name) work meant that you could sit at your desk, so I don’t know whether that sort of brings down your immune system a bit, that was in 1972. The next one was 1982 and then once I was (job name), because it was so difficult to get a replacement, without letting the (colleagues) down if you didn’t go in. I did go in and (job name), which may have contributed to all this.