Welcome to the
Invest in ME Newsletter
for November 2006.
November is a critical month for the ME community.
With Dr. Ian Gibson publishing his Inquiry into ME at this time and
the final date for submissions for the NICE guidelines on CFS/ME being 24th
November then the implications for people with ME and their carers could be
optimistic or devastating.
International ME Conference
Sponsor a GP
Guidelines - IiME Response
ME and CMO
Have a Cuppa
Sophia - A
delivered our IiME response to the NICE guidelines. We have been appalled at
the lack of precision, the lack of quality, the lack of accuracy and frequent inconsistency
in the document.
These guidelines cannot be endorsed as they are. At the same time
there appears an associated publication which has been published by
NHS Plus service in the UK (see
here) under the euphemistically named title
"Evidence-based guidelines". This one NHS document has spawned three
other pamphlets - all obviously connected with the NICE guidelines
in an effort to indoctrinate healthcare staff and the media into
believing that psychiatric paradigms are the way forward.
We hope to review these documents fully and lobby accordingly as
they look to be even more nonsensical than the NICE guidelines.
Written by psychiatrists they have no place in the treatment of
people with ME.
On the bright side ME Research UK have announced their conference and
it will compliment the IiME International ME/CFS Conference in
London on 2nd May - all of which will promote ME
Awareness Month 2007.
And the success of the Have a Cuppa For ME idea
is proven with a great story from an IiME friend.
Just a reminder that the Gibson Inquiry into ME is scheduled to publish its long-awaited report on
23rd November - see
For anyone in the UK whose MP may not yet have
heard of ME feel free to spread the word - join our ME & My MP campaign to make
your MP familiar with the illness - see
ME AWARENESS MONTH MAY
Invest in ME is working to
promote ME Awareness Month 2007 - which we hope will see a month of activity to
raise awareness of myalgic encephalomyelitis in the media, the public and
especially with healthcare professionals.
ME Awareness Month should be the one time that all ME Support
groups can work together - and not just in the UK but across the world.
IiME will happily publicise events being held anywhere to
support the cause of ME awareness and funding for biomedical research into ME.
Please let us know of any events planned across the world. Our
events diary will be updated accordingly - see here.
UK conference is now arranged and we hope that this conference will start the ME
Awareness Month events on a high note. We welcome support from all of the ME
IiME International ME/CFS Conference 2007
The IiME International ME/CFS Conference 2007 will be in London on 2nd
May 2007. This will be open to all and includes a range of ME experts giving
presentations on subjects ranging from epidemiology, diagnosis, treatments,
protocols, research, and experiences.
All of the pages for the
ME/CFS Conference 2007 have now been set up -
see here. Use our mailbox for more information - ME Conference 2007.
Use the buttons below for going direct to specific conference pages
In addition to the speakers announced previously we also welcome
Dr. Leonard Jason of de Paul university in Chicago. Dr. Jason is an
expert on ME with regard to epidemiology and sub-grouping.
Pre-Conference Day - 1st May
We also plan on holding a pre-conference day on 1st May for support groups and
pwme which will be attached to the main conference day. This will be
a less formal event with a core set of subjects being discussed. With the
speakers at the main conference day also present on the
pre-conference day this will be an opportunity for ME groups and
pwme to work together with the speakers to discuss a range of
important topics. An agenda for this day is being formed now by
IiME. Please join us for both conference days. Healthcare staff are
A discounted rate for the main conference day is available for
those who also attend the pre-conference day.
Here is an appeal to ME Support groups. Please help us to get more GPs,
paediatricians and other healthcare staff to the ME Conference 2007. IiME are
offering a discounted rate to healthcare professionals who are being sponsored
by a ME support group or charity. We wish for as many professionals to listen to
the information being presented by the world-renowned speakers who will be
attending the conference. Bring them along to the Pre-Conference Day also, if
you can, where there should be more time to speak with the ME experts presenting
at the conference.
Our response to the full version of the National Institute for Health and Clinical
Excellence (NICE) draft document for
clinical guidelines has been made.
It is available for downloading
from the page of information on the NICE guidelines - see
We have also added the Redefining CBT article byMargaret Williams which she kindly sent to IiME -
Invest in ME opened a page for your comments on the NICE
guidelines. An example of the comments received -
"Your comments are straight to the point and make
short shift of the mumbo jumbo written by NICE.
I agree wholeheartedly with IiME on every point that you make."
Our efforts to speak to the UK's Chief Medical officer are being ignored. Our
current page shows the status of our efforts -
see here. It is amazing that the
CMO refuses to speak with ME support groups and charities despite the prevalence
of ME in the UK running at 5 times the level of HIV/AIDS patients.
Likewise the Secretary of State for Health, and
her deputy minister, have no time to come to the IiME International ME/CFS
Conference next May.
We haven't given up,
though. This is the other part of the scandal in the UK with regard to treatment
of ME. Even the officials who are responsible for healthcare are apathetic.
Help us change this -
join the ME & My MP Campaign (here)
and get your MP interested.
Likewise, with our
international friends, if you have made contact with parliamentarians, senators
or congressmen - let us know their views.
Ok - this is an idea we have stolen from ME
Research UK. By using Every Click (www.everyclick.com)
and making IiME your charity of your choice then you can earn money for IiME.
But, as we've stolen the idea, then if you don't wish to use help IiME then
please choose ME Research UK as your charity (charity number SC036942) or CFS
Research Foundation (charity number 1011900). Either way it's an easy way to
assist funding of biomedical research.
From Our gallery of Friends
last a group that seems to be telling it as it
really is, and able to bring the right people
together so that we can change how this horrible
illness is treated & perceived.
I can't do much to help, housebound most of the
time. But will gladly subscribe & support any
way I can.
A voice of sanity in the mess of ME politics."
are doing a great job, I wish there were more
like you out there. The work you are doing to
fight for proper research into ME is greatly
appreciated, I am sure by many ME sufferers, and
definitely by me, please keep up the good work."
Thanks to all for the kind feedback. The following from Brigitte shows why we
need to keep going -
I am already so long so ill and it is just
getting worse, I don't think I am going to
survive until they find someday (for example in
20 years) a medication to really treat CFS.
Medicine does not go that fast and research also
not. That is how I see it. But at least, we can
fight for the children!! And the ones that come
after us! So that they don't need to go through
all this... ."
Jan Kelsall organised her own Have a Cuppa event. After
spending some time bed bound Jan has made an enormous
effort to help biomedical research by organising her
event in Staffordshire. Jan has raised £200 for IiME and
we shall be passing that on toward biomedical research.
It is a year ago since the IiME web site was first
opened. One of the earliest pages we made was in support
of the Young Hearts remembrance set up by Jane Colby.
There's little positive to say about ME and the way it is
treated in the UK. One of the positive points has to be
the amazing resilience and determination of young people
who have ME. We happily give space again this year to
remember again - see
One of those young hearts taken has been that of Sophia Mirza. It is a poignant note to end this newsletter on that on
the day that NICE close their acceptance of submissions to their
draft guidelines for CFS/ME then it will
be one year to the day since Sophia
Mirza died from ME.
IiME wish to mark this with our web page made
for the day. Feel free to send this page on to others.
For those of us caring for pwme we can only imagine how hard it
is for Sophia's mother, Criona.
This newsletter gets sent to MPs, healthcare professionals as
well as ME support groups/PwME. For those of you reading this newsletter who have a chance to
affect the way ME is perceived or treated please work with us to
ensure we never get another story of a young life being taken in