Archive for April, 2008

Observations on the RSM protest: Joan Crawford

Posted in AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer, Uncategorized on April 30, 2008 by meagenda

A copy of the leaflet handed out by Joan and her husband can be downloaded by clicking on this link

RSM Conference leaflet 

The leaflet was printed off on both sides of an A4 sheet, folded to A5 – hence the pagination layout which should be read in the order:

Page 4    Page 1

Page 2    Page 3

Observations on the RSM protest

by Joan Crawford

My husband (Dewi) and I handed out leaflets to as many people as possible entering the RSM conference between 9 and 10am. We handed out more than 120 and we know they were read…

When we arrived at Wimpole Street about 8.30am we had a coffee across from the 1 Wimpole Street entrance and as were getting ourselves organised but who should walk into the cafe for coffee – the one and only [Professor] Simon Wessely – and he looked VERY SHAKY and WARY – He looked like a man on the run…………………….. He then went into the RSM at 8.55am at the Wimpole Street entrance.

The RSM sent out 3 people to speak with my husband and I in the morning. All of them being polite and reasonable – of course they had nothing to be unreasonable about. We said nothing much other than handed them our leaflets. They came back out later on to ask for a two more leaflets – wonder what they did with these!

Two doctors came out after reading our leaflet and commented on not knowing about the biomedical evidence and wasn’t it good that this was now available for doctors to help their patients. Another medic was called away and asked me if I’d like to take his place at the conference. Unfortunately, I was not free to take up his offer. I saw other doctors leaving the RSM with our leaflet still in their hands – so it was not being binned…….. hurrah.

At the same time as the CFS conference there was a press association conference and we chatted to a few of them about what were doing.

Also, my husband spoke to a guy from the press who had been inside to speak to the RSM over breakfast. His daughter has ME. We didn’t get his name, unfortunately.

Curiously, the RSM had shut the doors on Henrietta Place, which actually made it easier for my husband and I to leaflet one door, rather than two. They had also closed 3 of the 4 glass doors at the 1 Wimpole Street entrance. It was clearly not normal practice as the admin workers kept nearly walking into the locked doors in the middle….. There were 2 securing guards opening and closing the one open door and vetting folks as they came it…….. What exactly were they expecting? Petrol bombs?

Anyway, we returned later on in the afternoon to lend our support to the guys and gals outside the RSM. What troopers. It was freezing cold out of the sun. The RSM were so embarrassed that they were bringing out cups of tea and coffee…

So well done to EVERYONE for getting to the RSM yesterday. It has and will make a difference to PWME.

Joan Crawford
29 April 2008

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Changing attitudes: RSM Conference leaflet

Posted in AfME/Action for ME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on April 29, 2008 by meagenda

Changing attitudes: RSM Conference leaflet

In addition to the demonstration held in the afternoon, Joan Crawford and her husband handed out leaflets to as many people as possible entering the RSM CFS Conference, between 9.00 and 10.00am in the morning.  More than 120 leaflets were handed out. 

Joan has very kindly given permission for a copy of the leaflet to be made available from Read ME UK Events.

The leaflet was printed off on both sides of an A4 sheet, folded to A5 – hence the pagination layout which should be read in the order:

Page 4    Page 1

Page 2    Page 3

Click here  RSM Conference leaflet for ME Conference leaflet in Word format

 

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RSM Conference Protest: brief report from organiser

Posted in AfME/Action for ME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer, Uncategorized on April 29, 2008 by meagenda

A brief report following the RSM CFS Conference from protest organiser, Gus Ryan

I arrived with Ciaran Farrell, author of the RSM protest group letter, at about 11am.

Immediately upon arrival we noticed that the Henrietta Street entrance was shut and two guards were inside the RSM’s Wimpole Street entrance.

Annette Barclay, one of the people who signed the RSM letter, arrived at about 12:30pm.

The presentation of the two letters took place outside the Wimpole Street entrance at just after 1pm. Jo Parkinson of the RSM accepted the letter on behalf of the RSM protest group and the letter from Sheila Barry.

Copies of the RSM protest letter were handed out to anyone who was willing to accept it and placards hopefully told the public why people were not very happy with the conference.

Faces that were recognised attending the conference were Tony Britton and Sir Peter Spencer. One person said she saw Simon Wessely in the morning and a number of us thought we spotted him in the afternoon. Tony Britton spoke to some of the group but Sir Peter Spencer hurried past us.

Oddly enough, none of us saw Wessely leave. However when heading home, Ciaran and me spotted the Henrietta Street entrance open – the members entrance.

All in all, about fifteen people attended the protest but there were no more than about ten present at any one given time.

During the afternoon and quite unexpectedly, the RSM sent out a trolly laden with tea, coffee and biscuits for the protestors.

A number of people stopped and looked at the placards and a few chatted to the protestors. I talked with a student attending the RSM about the controversy over the role of mental health in M.E. He seemed very understanding. However I did enter into a slightly heated discussion with someone else attending the conference who was extolling the virtues of CBT. I pointed out to him that despite having a diagnosis of M.E., I also had a psychiatrist’s letter stating I didn’t have mental health problems. He didn’t really give me an answer. In the process, he asked for my video camera to be switched off.

I hope to have a video ready within a few days.

Gus Ryan

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A message from Sophia’s mother

Posted in Royal Society of Medicine on April 28, 2008 by meagenda

May be reposted

A message from Sophia’s mother

Today, 9am, sees the launch of a website I have created in memory of my beautiful daughter who died of Myalgic Encephalomyelitis. It deliberately coincides with a conference being held by the Royal Society of Medicine on the subject of ME/CFS to which many psychiatrists and psychologists have been invited to speak. ME is a physical illness but the problem facing most ME patients is that a psychological causation of their symptoms is part of the dogma that has been foisted on them by a very small but highly influential group of psychiatrists who have established a niche market in what is a controversial but highly debilitating illness.

In June 2003 a warrant was granted through Brighton Magistrates Court that resulted in the sectioning of my daughter, Sophia Mirza, because she would not accept psychiatric treatment for her physical condition, Myalgic Encephalomyelitis (ME).

Despite our Solicitor being confident that there were no grounds for a warrant to be issued, a warrant was granted and my very ill daughter was sectioned against her will until a Tribunal sanctioned her release almost two weeks later.

My daughter never recovered from the shock of this incarceration and died in November 2005. The coroner’s verdict recorded that she died of CFS/ME.

Six doctors and a social worker were among the people who were involved in Sophia’s case.

I have tried, without success, to gain justice from the GMC and Social Services over the dreadful treatment my daughter received, but to no avail.

I have written to two Attorney Generals, numerous MPs and solicitors – again with no result. It seems that ordinary people like me and my daughter can be treated in the most appalling way and no-one is  accountable.

I have therefore decided to publish all letters and communications appertaining to my daughter’s ordeal at the hands of the authorities, in an effort to ensure that this should never happen again to someone suffering from ME.

I hope that the doctors and social workers involved in my daughter’s care will now reflect on what they did and learn from their mistakes and intransigence. I hope that other professionals will also learn lessons from what I have published and that no other person with ME will be treated so callously.

For more information see  www.sophiaandme.org.uk 

Criona Wilson

28th April 2008

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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

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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.

All good wishes for Monday’s demo

Posted in Royal Society of Medicine, Uncategorized on April 26, 2008 by meagenda

 

All good wishes to the RSM Protest Group for Monday’s demo

Demonstration | Royal Society of Medicine | 1.00pm to 6.00pm
1 Wimpole Street London W1G 0AE
Monday 28 April 2008

Graphic copyright meagenda

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Presentation letter from Mrs Sheila Barry to Dean, RSM

Posted in Royal Society of Medicine on April 26, 2008 by meagenda

Demonstration | Royal Society of Medicine | 1.00pm to 6.00pm

1 Wimpole Street London W1G 0AE

Monday 28 April 2008

A personal letter from Mrs Sheila Barry to the Dean, Royal Society of Medicine, will also be presented to the Royal Society at the demonstration on Monday, 28 April at 1.00pm.

 

Presentation letter from Mrs Sheila Barry

24th April 2008

Dr John Scadding, Dean
Royal College of Medicine
1 Wimpole Street
London WIG OAE
Dear Dr Scadding

RSM Conference 28th April 2008

You will have received many letters from ME sufferers, and their carers, expressing dismay at the unbalanced list of speakers at this conference.

I am writing on a more personal level. My daughter, my only child, was a long term ME sufferer. She died by her own choice on her 27th birthday. She walked out of her flat in the middle of the night, the first time she had been out alone for eight years and took an overdose. It was 9 days before her body was found behind a church, 250 yards from her flat. The police later admitted that they had failed to search there. It was 4 years later before an Inquest was heard and ME was not even mentioned as a cause of death. It was simply recorded as ‘she killed herself’. Nobody seemed interested as to why she took this action. It is impossible to ascertain just how many sufferers have taken such action as ME is not recorded on the Death Certificates. To my knowledge only two people in UK have had M.E. recorded as cause of death on their Death Certificates – Annabel Senior and Sophia Mirza, both of whom were long term sufferers and died in extremely tragic circumstances.

My daughter’s health was, in fact, considerably better than it had been for years but she was no way at a stage where she could return to work. She would soon have to complete yet another application for DLA if she wanted to be able to maintain her flat and independence. She felt alone, isolated and with little hope for the future. Appealing for Benefits with an ‘invisible’ illness puts sufferers in an impossible position. They are treated in such a horrendous manner by the Benefit Agency staff that my daughter said that she would never ever apply again. Her action meant that she never had to.

Her death has had a most devastating effect on our family. I have since discovered that she was the third ME sufferer in this area to take such action. I was contacted by hundreds of sufferers from all around the country who felt that they had little to continue to live for. They did not want to live for another 2 or 3 decades with such a cruel illness. Reading their e-mails was a most harrowing experience.

I believe that the actions of the psychiatric lobby to have ME classified as a psychiatric illness and to prevent research into the cause, and a diagnostic test were the major reason that my daughter chose to end her life

Yours faithfully

Sheila Barry

 

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