Archive for the ME videos Category

NICE CFS/ME Judicial Review: new YouTube

Posted in CBT/GET, Judicial Review, ME in the media, ME videos, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely on January 6, 2009 by meagenda

The NICE M.E. Guidelines Judicial Review new YouTube video

http://www.youtube.com/watch?v=uojoJ07OktE

“Annette Barclay talks about the impending legal challenge to the NICE guidelines on M.E.”

8.17 mins

by GBCOne

Added 4 January 2008

****************************************************

For information about the Judicial Review and copies of NICE JR related documents by Margaret Williams go to:

http://www.meactionuk.org.uk/nicejr.htm

For a document setting out what a Judicial Review is, what it is not, and how it works see:

http://meagenda.wordpress.com/2008/06/18/judicial-review-judgement-guidance

Supporters’ website:

An unoffical site has been set up for supporters of the NICE CFS/ME Judicial Review, for information and updates for those planning to attend the hearing and for those able to offer assistance with arrangements and publicity. The site can be found at:

http://www.nicemecourt.co.uk/

Please note that ME agenda site and Suzy Chapman have no connection with either of the two legal cases involved in the Judicial Review or with the supporters’ website.  All enquiries about this Judicial Review, including media enquiries, should be directed to the legal firms concerned or to the High Court, as appropriate.  Members of the ME community and their advocates planning to attend the Court hearing or who are able to offer assistance should direct enquiries about arrangements for what is currently scheduled for at least a two day hearing, to the web master of the NICE CFS/ME Judicial Review Supporters’ website.

Previous postings around the NICE Judicial Review are archived under Judicial Review in the Categories list in the left hand sidebar of ME agenda site.

Back to Home page

RSM Protest video from GBCOne

Posted in AfME/Action for ME, CBT/GET, ME videos, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on May 12, 2008 by meagenda

RSM Protest video

http://www.youtube.com/watch?v=OLFGPc_fZ7A  

From: GBCOne

Added: May 11, 2008, Category: Nonprofits & Activism

The Royal Society of Medicine in London held a conference on “Chronic Fatigue Syndrome” in April 2008. Due to the strong presence of speakers from the field of mental health, some consternation was caused amongst people diagnosed with M.E.

M.E. has been categorised as a NEUROLOGICAL disorder by the World Health Organisation since 1969.

The two open letters presented to the RSM can be found at:
https://readmeukevents.wordpress.com 

here:  Open letter to the President of the RSM from the RSM Protest Group

and

here:  Open letter to Dean of the RSM from Mrs Sheila Barry

 

Back to Home page

Final call for the RSM Protest

Posted in AfME/Action for ME, CBT/GET, ME Association, ME videos, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on April 27, 2008 by meagenda

From RSM Protest organiser, Gus Ryan

When is it?

Monday 28th April 2008 – 1pm to 6pm

Where is it?

On the corner of Wimpole Street and Henrietta Street in London:

Location

The members entrance is in Henrietta Street.
The public entrance is in Wimpole Street.

What’s happening?

Two letters will be presented to the RSM – one on behalf of the RSM CFS conference protestors and one from Sheila Barry – possibly soon after 1pm. The RSM have agreed to accept the letters.

I will be bringing a video camera to record people’s stories for broadcast on YouTube. I have reason to believe that at least another two people will be attending with video cameras – one of them hoping to record footage for a documentary about problems people with M.E. have with getting the illness recognised as a physiological condition.

People have emailed me saying that they will be bringing placards and handouts.

If at all possible, could you please bring a photo (if you’re a carer) and a camera. Placards and handouts would be very much appreciated as long as they are about the mental health bias in M.E. treatment.

At the risk of stating the obvious, it would help if the banners/placards were easy enough for the uninitiate members of the public to understand the issue.

Banners/placards and handouts would also have to be inoffensive. My contact at the Met police told me that offensive material would not be welcome so even though you may intensely dislike the proceedings in the RSM and especially dislike the participants (!), you’d do us all a favour by not getting us into trouble.

Why should I attend?

Is a reminder necessary?

Merely in the last few weeks, a psychiatrically-biased conference has been planned about something that has been classed as a neurological disorder for nearly four decades. It has then been defended by the Chief Executive of the RSM.

Again, this is after nearly four decades.
Do you find that acceptable?

As a PWME, how do you see your immediate future?

There is a danger that people might assume that they don’t have to attend the protest because somebody else will.

There are no guarantees that people will attend the protest.

Please don’t take that risk.

A very public demonstration of opposition is surely a more effective and eye-catching method than many others.

RSM protest basics:

YouTube video
enquiries: Email Protest Organiser Gus Ryan

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The Read ME UK Events site, the “On a Postcard, Please” Campaign and the “Squeeze” graphic are initiatives independent of the RSM Protest on 28 April. All enquiries from demo attendees and the media regarding Monday’s demonstration should be addressed to the Organiser, Gus Ryan, and not to Read ME UK Events.

Response from Ian Balmer, CE of RSM to John Greensmith

Posted in AfME/Action for ME, CBT/GET, ME Association, ME videos, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on April 18, 2008 by meagenda

Dr John Greensmith has received a response on the This is North Devon website from Mr Ian Balmer, Chief Executive of the Royal Society of Medicine.  Comments, which may be selected for publication in the paper edition, can be left on the website.

From John Greensmith

18 April 2008

My letter about the forthcoming Royal Society of Medicine (RSM) Conference, ‘Chronic fatigue syndrome’, on 28 April 2008 (copy below my signature), has elicited this reply from Mr Ian Balmer, Chief Executive of the Royal Society of Medicine:

Reply to letter, Sufferers of ME need support, Dr John H Greensmith
published in North Devon Journal, 17 April 2008

I write in response to Dr John Greensmith’s letter (North Devon Journal, 17 April 2008) criticising the Royal Society of Medicine over supposed bias of a forthcoming conference on Chronic Fatigue Syndrome.

The RSM holds over 400 meetings a year as part of its programme of medical education for doctors. A small number of these are aimed at the general public but our conference on CFS is not such a meeting.

It has been set up to contribute to health practitioners’ understanding of this debilitating and distressing condition.

The causes of CFS are not clear and our agenda was drawn up to reflect current thinking on its diagnosis an treatment, as outlined in the National Institute for Health and Clinical Excellence (NICE) guidelines.

We are aware that Dr John Greensmith and some sufferers of the condition are unhappy that psychiatrists will be giving presentations at the meeting. This has nothing to do with distortion, nor is it immoral or unscientific. The content of the meeting is, instead, well-grounded in evidence-based medicine and has been planned by a broad-based academic planning group.

Dr Greensmith does not make clear what he means by censorship and selective editing but his accusation of inappropriate association with an insurance company is completely untrue. No representative from any insurance company was invited to speak nor involved in the programme planning. Nor has any insurance company contributed any sponsorship to the meeting.

There are many groups aimed at sufferers of ME/CFS and their carers. There is no way that our conference – aimed at doctors – could include representatives from so many organisations. We will be holding a meeting for sufferers of CFS as part of our Medicine and Me series, which aim to bring together patients, carers, researchers, doctors and other health practitioners to discuss care and research issues in a particular condition.

Yours sincerely
Ian Balmer
Chief Executive
Royal Society of Medicine
1 Wimpole Street
London W1G 0AE

John writes:

May I suggest, for truly representative coverage of the strength of feeling about this conference that as man individuals and ME spport groups, from around the World, as can manage, reply to Ian Balmer, Chief Executive:

(1) either in writing, addressed to the Royal Society of Medicine, 1 Wimpole Street, London W1G 0AE or by e-mail to ian.balmer@rsm.ac.uk all lower case ian dot balmer at sign rsm dot ac dot uk)

(2) copy it to (or rework it to suit) the letters page of the North Devon Journal, where this reply appeared. e-mail address: letters@northdevonjournal.co.uk (all lower case, no spaces letters at sign northdevonjournal dot co dot uk)

(3) copy it to us at ME Free For All. org with permission to post it on our website with the other letters on the same subject.

I know how much energy it takes to do these things, especially when you are not feeling well but I urge you not to miss this opportunity.

I, also, remind ME sufferers who live abroad that, although this conference is to be held in the UK, its agend affects people with ME in all parts of the world and I hope that you will want to have your say too.

Cheers
John
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All

SUFFERERS OF ME NEED SUPPORT
(North Devon Journal, 17 April 2008)

There is more than a little disquiet about the forthcoming Royal Society of Medicine Conference, “Chronic fatigue syndrome”, scheduled for April 28, because its agenda is wholly biased towards the mental health perspective of ME (Myalgic Encephalomyelitis) as an illness of psychiatric origin – for which there is no evidence, and completely away from its neurological classification – for which there is an abundance. If not wholesale schism, there is an unprecedented rift in the ME community because only one organisation has been invited to attend.

Whatever the motives for this, there is a higher priority put on self-interest than on ME.

There will be a peaceful protest outside the Wimpole Street and Henrietta Street entrances of the venue. Those who are too ill to participate are encouraged by the “On a postcard please” campaign to address their concerns to the Dean, Dr John Scadding, 1 Wimpole Street W1G 0AE.

The responses, so far, have not been from firebrand activists but from a cross section of people, whose live have been affected by this disabling illness, including doctors and researchers, of at least equal qualification and authority with the ones chosen to speak at this meeting, who have written of their uneasiness about professional conduct and ethics to national newspapers, the Dean of the RSM and even to the Queen suggesting removing Royal Patronage because of an inappropriate association with an insurance company. There is also a video on YouTube.com, which has been made to allow free expression of opinion.

This is possibly the shabbiest episode in ME history.

There are professionals imposing their speciality, as well as individuals and organisations, purporting to represent people with ME, who ought to consider their positions.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All

Back to Home page

RSM demo: Update from Organiser, Gus Ryan

Posted in ME videos, Royal Society of Medicine on April 8, 2008 by meagenda

Please note that all enquiries concerning the demo should be addressed to the Organiser, Gus Ryan Email: creamcrackereduk@yahoo.co.uk

RSM demo: Update from Organiser, Gus Ryan

8 April 08

I have been pleasantly surprised by the overwhelmingly positive reaction to the protest. I have received emails from the USA, Denmark and Australia and the YouTube video advertising the event:
http://uk.youtube.com/watch?v=IBRC9SzmKNk has had hits from countries as distant and diverse as Argentina, Israel, Morocco and Japan.

Thank you to everyone who has shown an interest.

May I take this opportunity to announce an initiative for the day?

It’s very simple.

If you are a carer, could you please bring a photograph of the PWME you are caring for. The event will be recorded on video and I would like to hear your stories for broadcast on YouTube.

Nothing more complicated than that!

Banners will be displayed, information sheets will be handed out and there will be an open letter
which I hope will be presented to the RSM.

It will also be a chance to meet others.

See you there!

Gus.

—————————————————

Where?

The Royal Society of Medicine
1 Wimpole Street
London W1G 0AE

http://www.rsm.ac.uk/
http://www.multimap.com/maps/?hloc=GB|W1G%200AE

There are two entrances/exits to the building:
Wimpole Street (general public)
Henrietta Street (members)

It is intended that a protest will occur outside both doors simultaneously.

Each gathering will have a steward.

The RSM building is just behind/north of House of Fraser in Oxford Street.

—————————————————

When?

Protest is 1 pm to 6 pm on Monday 28th April 2008

Conference is from 9:50 am to 5 pm

—————————————————-

How do I get there?

Tube:
Bond Street tube station is five minutes walk from
the RSM. Unfortunately, there is no wheelchair
access at Bond Street.

The station is on the Jubilee and Central lines
http://www.tfl.gov.uk/modalpages/2625.aspx

Bus:
3, 6, 7, 8, 10, 13, 15, 23, 25, 55, 73, 88, 94, 98, 113, 137, 139, 159, 176, 189, 390, 453, C2
are all within a 15 minute walk (approximately)

London bus map:
http://tinyurl.com/62pmkl

Car:
Parking in Harley Street and Cavendish Square
http://www.westminster.gov.uk/carparks/
http://tinyurl.com/5sfvsl
NCP in Welbeck Street
http://www.ncp.co.uk/

The RSM is within London’s Congestion Charge zone which operates between 07:00 and 18:00 Monday to Friday. The charge starts at £8.
http://www.tfl.gov.uk/roadusers/congestioncharging/

Blue badge holders are exempt.
http://tinyurl.com/4drwnt

Assisted transport:
http://tinyurl.com/3elnt6

—————————————————

Are there any amenities and facilities nearby?

Cavendish Square has a garden for relaxation and the nearest public toilet is in James Street.

Department stores House of Fraser and John Lewis both have toilets with disabled facilities.

Both stores also have places to eat:
HoF: Cafe Zest and Cafe Nero
http://tinyurl.com/5bg6h9
JL: The Place to Eat, The Brasserie, The Bistro
and The Coffee Shop
http://www.johnlewis.com/Shops/DSTemplate.aspx?Id=388

JL also has its foodhall, courtesy of Waitrose.
http://www.johnlewis.com/Shops/DSTemplate.aspx?Id=531

——————————————————–

For greater detail, please visit the sites.

Enquiries about the protest to: creamcrackereduk@yahoo.co.uk

Back to Home page

Serious concerns about RSM Conference from M.E. sufferers by John Greensmith

Posted in AfME/Action for ME, CBT/GET, ME Association, ME videos, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on April 6, 2008 by meagenda

Serious concerns about Royal Society of Medicine Conference from M.E. sufferers

5 April 2008

by Dr John Greensmith

I suspect that, unless we make a special effort to publicise it, the majority of people with M.E. out there will not be aware that this conference is taking place, nor of the controversy surrounding it and, therefore, will be denied the opportunity to express their opinion.

If you are able to write to your regular national and/or local newspaper, I’m sure it would help some of us to get published. If you don’t know the e-mail address to write to, which will be published in your paper, or available on its website, or by doing a search at www.google.com, send us an e-mail and we’ll find it for you.

Although this conference is taking place in the UK, M.E. doesn’t stop at borders or this side of oceans, so I hope you will write too, wherever you live. Again, we’ll help you with e-mail addresses if you need it.

Best wishes
John
drjohngreensmith@mefreeforall.org

Letters

There is more than a little disquiet about the forthcoming Royal Society of Medicine Conference, “Chronic fatigue syndrome”, scheduled for 28 April 2008 because its agenda is wholly biased towards the mental health perspective of M.E. (Myalgic Encephalomyelitis) as an illness of psychiatric origin, for which there is no evidence and completely away from its neurological classification, for which there is an abundance.

If not a wholesale schism, there is an unprecedented rift in the M.E. Community because only one organisation has been invited to attend, while others have been told to stay away.

Whatever the motives for this distortion – corporate interest of private medical and insurance companies, academic promotion, increased publication count, personal wealth or reputation, for example – a higher priority is put of self-interest than on M.E.

There will be a peaceful protest outside the Wimpole Street and Henrietta Street entrances of the venue. Those who are too ill to participate are encouraged by the “On a postcard please” campaign to address their concerns to the Dean, Dr John Scadding, 1 Wimpole Street W1G 0AE.

The responses, so far, have not been from firebrand activists but from a cross section of people, whose lives have been affected by this dreadfully disabling illness, including doctors and researchers, of at least equal qualification and authority with the ones chosen to speak at this meeting, who have written of their uneasiness about professional conduct and ethics to national newspapers, the Dean of the RSM and even to the Queen suggesting removing Royal Patronage because of an inappropriate association with an insurance company. There is also a video on YouTube.com which has been made to allow free expression of opinion, in order to counter the censorship and selective editing which has, regrettably and disgracefully, occurred.

This is possibly the shabbiest episode in M.E. history, immoral and unscientific.

There are professionals imposing their speciality, as well as individuals and organisations, purporting to represent people with M.E., who ought to consider their positions.

Yours sincerely
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All. org
36a North Street
Downend
Bristol
BS16 5SW
United Kingdom
+44 (0) 117 956 0150

Back to Home page

YouTube video from GBCOne: Sweet charity?

Posted in 25% ME Group, AfME/Action for ME, ME Association, ME videos, The Young ME Sufferers Trust on April 1, 2008 by meagenda

AfME’s CEO, Sir Peter Spencer is a speaker at the forthcoming RSM Conference.  Read The ONE CLICK AfME Dossier

YouTube: GBCOne: Sweet charity?

http://uk.youtube.com/watch?v=sJlTfLk9St8

1 April 08

10 mins

Ciaran Farrell explains why he’s unhappy with M.E. charities in the U.K.

 

Back to Home page