NICE Guidelines Judicial Review: update for supporters

Here are two notices requesting assistance from supporters of the forthcoming NICE CFS/ME Guidelines Judicial Review.  ME agenda has no involvement with the JR cases and all enquiries about these arrangements and suggestions should be directed to the webmaster of the site using the email address given below.

All other enquiries should be directed to the legal firms representing the individuals involved in these cases or to the High Court, as appropriate.

UK Judicial review at the High Court – the NICE Guidelines on CFS/ME

Update for supporters

from Annette Barclay 
9 October 2008

I’ve been in communication with the UK Court Services again. Trying to arrange facilities for the PWME and carers/supporters who intend to come on one of the two or three days of the hearing.

The court will be open to the public and the hours will be roughly from 10am to 5pm each day with a break at around 1pm. The start time may be a little before or a little after 10am.

We don’t have a DATE for the hearing and we don’t have a courtroom assigned.

October is looking unlikely now as time ticks on. November is looming.

Once the date is known things could move very quickly indeed. There may only be a few weeks for us to organise coming to London once we know the date. It all depends on if deadlines are met or extensions given. Then on judges, counsel and witnesses being available at the same time.

It could be weeks or months.

Groups could be pre-planning now. How many people have contacted their group leaders to see what  help they need to organise people coming to London?

Why do we need to come? Well, on the initial hearing it was obvious that the Judge saw the people in  the packed, uncomfortable room and understood that this was a issue that a lot of people cared about and one that was not going to go away.

What can people do? Pre plan so that local groups can go to London and show that Judge that we mean business.

Show the Judge and the media that we are badly disabled & terribly sick BUT that we will fight the NICE Guidelines regardless.

Group leaders and others in the groups need to join together and make this happen. Use whatever means of communication there is open to you. Newsletters, telephone trees, coffee mornings?

The organisers of the Judicial Review can’t do this. They are working day and night with the legal team meeting deadlines for the case. We, supporters need to do this.

By the time the actual court DATE is know it may be to late to do much of the planning. You may be too sick to do the things needed.

Who has spoken to their Group Leader and whose what plans are in place? It needs to be done NOW. Organise a special meeting of your local group.

Who has quotes for a mini-bus to take their group to London for a day or several days?

Who has looked at London hostels and hotels to see if your group can stay cheaply there?

Who has spoken to family and friends in London and asked them to attend?

Who has thought about local publicity and found a contact in the local paper (or TV) to record your group as they set off to London?

I’m slowly adding things to the website but I know you’ll understand what a hard job this all is. People are sending emails of support, volunteering for different jobs and offering beds for the night. Thank you.

Have a look at the Website under volunteer and then get your GROUP organised to come to London. I’m just a volunteer and most days I can’t even find the right words.

Email  with your progress.

If you can’t come to London then VOLUNTEER to organise your local group or VOLUNTEER for one of the jobs on the Website.

We need your HELP to make the Judicial Review of the NICE Guidelines on CFS/ME a success.


The Judical Review – Volunteer needed – PARKING

10 October 2008


Anyone live in London (or around London) and want to help out for the hearing?

Someone is needed to check out the disabled and other parking around the High Court on the Strand. This is pre-planning for the Judicial Review that we still have no date for.

There are several ways to do this. An on-line database exists with maps and information on designated blue-badge parking paces. Then the local councils website can be checked to see what restrictions they place. Blue badge parking is restricted in some parts of London.

There is also parking to the side of the High Court and I have been in discussion with them.

Then there are parking buildings.

We need to know where individuals can park safely and where hired buses can stop to let down disabled PWME. You might like to visit the area and take some photos or make a video.

Then write this up for the website. We can also post photos or a links to a video, map or websites as needed.

If this sounds like something you can do. Please email the webmaster at

Annette Barclay
(Unofficial volunteer)

Please be aware that this is an UNOFFICIAL request and the organisers of the Judicial Review have not approved this and anything I write is my own responsibility entirely.


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