Welcome to the Invest in ME Newsletter for
Invest in ME has now
been operating, officially, for six months - with the web site
beginning from November 2005. It's been getting ever more busier as
the months have rolled on. Invest in ME have hosted talks from
Malcolm Hooper; the successful Have a Cuppa For ME
events were initiated and a new round is set to be announced; our
London conference has been arranged and we are pleased to have
announced that, since our last January newsletter, Dr. Jonathan Kerr has
agreed to present at the conference and give news of his exciting
work. We have also been working in the background with submissions
to the Gibson Inquiry into ME, an idea for a Google Doodle and ME Awareness
Month plus we have been working on one or two other ideas which are likely to be announced
over the following months, if we are lucky.
Education is one of the areas we have
to improve regarding ME - and education can take many forms. So we
are concentrating on that topic this month. Beginning with
treatments. This month we continue the expose of how severely affected people with ME
are treated in the UK in 2006. Did anyone think the Meridian ITV
Expose was unique?
We begin our promised section of the site
looking at ME and vaccines and antibiotics.
Please contact us with your thoughts and experiences.
We would also like to hear from you
with any experience you have. What is your story? What are your
thoughts about ME, how it is being treated? What opportunities do
you feel there are in your locality for raising awareness of ME and,
possibly for raising funds for biomedical research into ME? Use our
Ideas Factory to work with us on new possibilities.
Education + publicity = lobbying power.
Lobbying power = biomedical research funding.
We made it to Dawn’s party
yesterday, We have only ever met Dawn’s Mum, Jo once before.
When we first met Jo, Dawn was being tube fed & weighed five stone. Someone there mentioned yesterday that she no longer has the tube & it was
obvious she weighed more now. Jo took us in to Dawn’s darkened room to meet her, this gorgeous girl was lying
perfectly still on a hospital type bed. She whispered hello but couldn't raise her hand to accept a present, she
whispered "not lying" & Jo explained, "Dawn thinks people must think Jo lies about having a daughter as
no one ever see hers". That was it; the poor kid closed her eyes so we came out.
From a friend of a family with a young girl
with ME. Did anyone think that the Meridian ITV story which Invest in ME
publicised in January was unique. Another shocking story. In Ceausescu's
Rumania? In a poor African state? No - it's the UK in 2006 - welcome to
There are still places left at the
conference and we are particularly interested in getting healthcare
professionals to come along and hear form the selection of distinguished
speakers. Since the last newsletter we have now been able to add
Dr. Jonathan Kerr to the list of presenters.
Dr. Kerr is likely to deliver some exciting information for the
Once again we ask those who can to
urge their GPs, or paediatricians or local PCT staff to attend and
listen to the latest on clinical diagnoses, research trends and
educational considerations from the people best placed to know.
We have a line-up of honorary guests invited also so this will be a
great chance for the ME community to get the message across.
The venue is One Birdcage Walk,
Westminster, London, and a registration form (online or
downloadable) is available
here along with more details on
the conference and presenters. More news related to the conference will
be coming out in April.
A reminder again about our events database is available for all groups and organisations and individuals
(around the world) who are interested in fund-raising for biomedical research into ME.
We are introducing a new format for May 2006 to make it easier to
assist in planning. If you know of events planned to
support education on ME or fund-raising for biomedical research then please
with any news or information. Look in the Events page - see
And get your
another Have a Cuppa for ME campaign is underway for ME Awareness
Gibson announced the make-up of his committee for the impending
review of ME in the UK. These members will begin examining the
evidence submitted and we await calls for interviewing of interested parties. See
here for news on the inquiry.
IiME wrote to the ME All Part
Parliamentary Group Chairman,
Mr. Des Turner MP. After two reminders from our own MP this
response was produced from Mr. Turner-
"I apologise for
the delay in responding to your letter. I should
be grateful if you could tell your constituent
that the All Party Group on ME is not interested
in sponsoring any particular model of ME, but is
concerned to promote any relevant research into
ME and to development of appropriate services.
The fact there are currently no particular
neurologically based interventions is a sad
reflection of the fact that the knowledge base
is insufficient for curative therapies to have
been developed and consequently at the moment
therapy tends to concentrate on, as it were,
living with the disease rather than curing it.
ME is a very
difficult, complex area with a very insecure
knowledge base with the consequence of the many
problems which ME suffers have to bear."
As we stated earlier education is one
of the areas we have to improve regarding ME!
An update on where we are. We have now reached
over 60 UK Members
of Parliament with our ME and MY MP campaign. Our aim is
to get in touch with all MPs by the time of the ME Conference in London in
May. Recent successes have included Scottish Nationalist MP Alex Salmond
signing up to EDM 260. We have also secured support, via the Friends of
IiME, for MPs Rudi Viz, Stephen Dorrell and Paul Farrelly as well as having contacted many
more MPs on the subject of ME. At the time of writing the status of the EDM
260/260A in parliament stood at 223/20. Our
is updated regularly and allows one to find an MP and their status. Our template letter
has been used by several friends already.
are still collecting stories in the run up to ME Awareness Month. It
doesn't have to be your own story if you are suffering from ME. Get
someone else to write it and share their experiences of the effects
of ME. The two categories - persons with ME (pwme) and
carers/parents of pwme - are able to carry any story. The more we publish your
experiences the more we educate.
If you would like to share your experiences then please
and let us know about you
The gallery of stories for
here. The gallery of pwme parents/carers is
and here is one we heard of earlier....
Thanks to Douglas for providing
us with more experiences - this time from treatment at his local ME
Centre (this one in West Sussex).
doctor tried to extol the virtues of GET, at
which point I pointed out that he was concerned
about my heart rate, and yet he was asking me to
increase it through exercise!."
One area of investigation has been the
role of vaccines and antibiotics in the cases of people with ME. It
is a subject that needs more investigation so we have started a
section on this subject. This is such a wide area that we wouldn't
be able to cover it all. But we have started by looking at some
research from over 10 years ago - and it is interesting to see what
hasn't changed. Doris Jones and Jane Colby published these articles
so many years ago and we return to them as a prelude to giving more
space to current research and information, as well as people's
stories where links to vaccines/antibiotics are suspected.
And, as we go to press, news is coming
in of a story from Norway linking vaccination against meningitis
from the 1980s with at least 70 persons who developed ME. What is
really interesting is that ME patients are being advised to put in a
compensation claim whilst the Norwegian health service makes a
year-long research study into this. We have translated this story
and added it to the other information in this section
People working for, and with, Invest
in ME are voluntary workers. There are no salaried staff in IiME.
All profits from events go toward promoting and funding biomedical
research into ME. We are happy to announce this month that two
cheques have recently been forwarded to MERGE - one for £350 and one from
Friend of IiME - Anne Taylor - from a village fete event (for £1035). And,
more poignantly, this from IiME's regional contact Flora -
mother of Samantha's godfather died in
January. The family asked for donations
instead of flowers and, because Dora
(deceased) was very close to Samantha since
birth, they donated £100 to Merge for
research in memory of a lovely lady. They
received a lovely letter from Merge thanking
them. Yet another way, albeit a sad way, to
get funding. We are grateful to Chris and
Mike for kindly thinking of M.E. sufferers."
Thanks to everyone for their support - also to those who take the
time to write to us with messages - it all helps.
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