Monday 16 February 2009
Belfast Marathon May 4th 2009
Friday 6 February 2009
ME Association
Please Repost
http://www.meassociation.org. uk/content/ view/781/ 161/
ME Association fully supports legal challenge to the NICE Guideline on
ME/CFS
The ME Association will be fully supporting the two people with ME - Douglas
Fraser and Kevin
Short - who have succeeded in achieving a Judicial Review into the 2007 NICE
Guideline on ME/CFS.
The Judicial Review, which could result in the NICE guideline being
withdrawn, is taking place at the Royal Courts of Justice in The Strand,
London on 11 and 12 February.
The four key reasons why the MEA believes the NICE guideline on diagnosis
and management of ME/CFS is unfit for purpose are as follows:
* NICE has broadened the diagnostic criteria as to what can be
diagnosed as ME/CFS.
* NICE advocates a "two sizes fits all" approach to management in that
far too much emphasis is being placed on the role of cognitive behaviour
therapy (CBT) and graded exercise therapy (GET) - treatments that
significant numbers of people with ME/CFS consistently report to be either
ineffective or even harmful in the case of graded exercise.
* NICE has failed to provide adequate information on symptomatic
relief, particularly in the area of pain control.
* NICE has failed to properly address, or not addressed at all, many
of the important non-drug aspects of management such as benefit provision;
diet and nutrition; and occupational health.
The MEA believes that our decision to classify the ME/CFS guideline as
'unfit for purpose' has widespread support from our membership. In an
on-line survey of public opinion carried out via the MEA website in
December, 91% of those who took part supported the MEA position, only 6% did
not.
The current online poll on NHS service provision also suggests that
following implementation of the NICE guideline in August 2007, people with
ME/CFS do not believe that they are receiving the sort of management advice
that should be available from both general practice and hospital based
services. Current ratings for NHS service provision being: 47% - very poor;
22% - poor; 15% - no longer use the NHS; 8% - average; 6% - good and 2% -
excellent.
More information on the practicalities of attending the Judicial Review can
be found by clicking <http://www.nicemeco urt.co.uk/> HERE.
Note to Editors:
For more details about the ME Association' s position, please contact:
Tony Britton, Publicity Manager, The ME Association
Tel: 01406 370293 Mob: 07880 502927 Email
Thursday 5 February 2009
Judicial Review – Needs YOU
Permission to Repost
Judicial
Review – Needs YOU
Yes
it certainly does and the questions as to what you can do may be many, so based
on what I’ve read on the mails let’s see if I can allay any fears
Venue:
Court-Room 76 The Royal Courts of Justice, The Strand, London
Dates: 11 & 12 Feb. Times: 10:00/10.30 start 13:00- 14:00 Lunch 16:30/17:00 End
So
how can you help?
Court
Room 96 holds over 100 people and doesn’t include counsel. It has a speaker
system, the seats are movable and light. More space can be made and spaces for
wheelchair. Extra seats can be got from the court next door if needed.
Outside the court there is some seating in recesses around a small lobby and
then 2 quiet rooms for people attending the court. Disabled loos on the same
floor.
The ushers and they understand that people will be attending who need water
during the day and people with low blood sugar, who may need to eat a small
biscuit every now and then. It was the same as other disabled groups who have
attended cases there. So anyone coming can bring their own little survival pack
and quietly use these rooms.
For public
conveniences outside the Royal Courts of Justice on The Strand.
There is
one (for men and for women) located in a traffic "island" in the
middle of the Road just outside and opposite the RCJ.
What is
needed in my opinion is, as many as possible to come even if it is for a
short period, if you are a morning person or an afternoon person, come when you
can and when you gotta go, you gotta go. The fact of a changing audience is three
fold. If the Judge sees the transition of the audience.
1. It shows there are more with the
illness.
2.
It shows its
severity and unpredictability.
3. It shows that there is support
from those who matter, the rank and file.
I’ll be
there, how about you? Or should I say “yes I bloody well will”.
Trev
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