Times: ME coverage 30 January 10

Media coverage 30 January 10

Shortlink: http://wp.me/p5foE-2Hh

Update @ 31 January

News of the World  |  Carole Malone  |  31 January 2010

Mother’s courage betrayed by law

BBC News: Poll ‘support for mercy killings’: http://news.bbc.co.uk/1/hi/uk/8489744.stm

There will be a ‘Panorama’ special on the Kay Gilderdale case tomorrow, Monday, 1 February.

Panorama

 

http://www.bbc.co.uk/programmes/b00qs930

I Helped My Daughter Die

Broadcasts

BBC One  |  Monday, 1 Feb 2010  20:30

Next on:  |  BBC News Channel  |  Thursday 4 Feb 2010  04:30

Synopsis

What drives a mother to help her child die? For almost a year, Panorama cameras have been following Kay Gilderdale – the woman at the centre of the recent Assisted Suicide trial – as she faced a possible life sentence over her part in the death of her daughter Lynn.

She talks exclusively to Jeremy Vine about the night she helped her bedridden daughter kill herself and explores whether the law should be changed with those on both sides of the debate, including Debbie Purdey and Baroness Campbell.

Update @ 31 January

Daily Mail  |  Anne Atkins  |  31 January 2010

ANNE ATKINS: I know the curse of ME well but I’m sorry, it was wrong to let Lynn die

Times  |  Dr Martyn Lobley: Commentary  |  30 January 2010

‘ME is a diagnosis only reached by excluding other possibilities’

Dr Martyn Lobley is a GP in southeast London

freefoto

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image above and archived in Categories under Gilderdale case. ME agenda is unable to respond to enquiries in connection with the case from members of the public or the media.

TimesSteve Bird  |  3o January 2010

They told dying daughter she was lying, says ME mother Criona Wilson

As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”

In the years that followed, Mrs Wilson, 66, a former midwife, dedicated her life to proving that her daughter’s condition was not a figment of imagination, nor one that merited her youngest child’s incarceration in a mental hospital.

Her battle saw her take on the medical profession and accepted thinking about the diagnosis and treatment of ME, also known as chronic fatigue syndrome. Eventually, in 2006, a coroner ruled that Sophia’s death was the result of myalgic encephalomyelitis — the first such ruling at an English inquest.

The fierce debate over ME has been highlighted once again by the case of Kay Gilderdale, who admitted assisting her daughter, Lynn, to kill herself after suffering from ME for 17 years. When she walked free from Lewes Crown Court on Monday, having been cleared of murder, Mrs Wilson was among those cheering her from the public gallery.

Related Links
No blood test to diagnose if a patient has ME
DPP defends murder charge against ME mother

“I had to be there,” said Mrs Wilson yesterday. “It was such an important case. And the verdict was a vote for common sense in a trial that highlighted what people suffering ME and their carers have to face.”

Her daughter, Sophia Mirza, was a talented and popular arts graduate living with her mother in Brighton in 1999 when she contracted ME at the age of 25. She became confined to her bedroom and, just as Miss Gilderdale had, needed round-the-clock care.

In 2003 she was visited by a psychiatrist, even though Miss Mirza complained only of physical discomfort. The psychiatrist told her that she was making up her symptoms and if she continued to pretend to be ill he would section her under the Mental Health Act. Mrs Wilson said: “I knew my daughter. There was no way she was mentally ill or pretending.”

When the dread knock on her door finally came in 2003, there was little she could do. A policeman forced the door open and the psychiatrist and a social worker locked themselves into Miss Mirza’s room to prepare her for her trip to a psychiatric ward.

Her condition took a dramatic turn for the worse. After 13 days she was released and taken back to the care of her mother. “That spell in a mental hospital set her back terribly. We lost all faith in medical professionals. We were alone,” said Mrs Wilson.

In 2005 Miss Mirza could barely muster the energy to speak, eat or drink. She and her mother had already agreed that no doctors should be called in case she would be sectioned again. On November 25, 2005, Miss Mirza died in her bed at home.

Wiping tears from her eyes, Mrs Wilson said: “We did everything we could.” Determined to get to the bottom of why her daughter’s treatment had been so bad, she got hold of her medical records. After being contacted by the 25 Per Cent ME Group, which campaigns for those with the most acute form of ME, she agreed to her daughter’s body being examined.

At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities. It was, the court heard, a clear physical manifestation of ME. The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”.

A year later, the National Institute of Clinical Excellence (NICE) issued its first guidelines on the diagnosis and treatment of the illness, describing it as “relatively common”, affecting up to 193,000 people in Britain. At the heart of that guidance is the need to take into account the opinions of the patients.Mrs Wilson is campaigning to get the Government to fund research into ME. “It’s not over yet.”

Charities concerned over changes to Mental Health Act in event of Swine Flu pandemic

The charities, Rethink and Mind, have issued concerns over proposed changes to the Mental Health Act in the event of a Swine Flu pandemic. Download Consultation document and link to opinion from FT.com.  Consultation ends 7 October!

Pandemic Influenza and the Mental Health Act 1983 Consultation document

PDF icon l

 

Open:  DH Consultation: Pandemic Influenza and the Mental Health Act

http://www.dh.gov.uk/en/Consultations/Liveconsultations/DH_103683

Pandemic influenza and the Mental Health Act 1983: consultation on proposed changes to the Mental Health Act 1983 and its associated secondary legislation

Launch date: 10 September 2009
Closing date: 7 October 2009
Creator/s: Department of Health
Copyright holder: Crown
Gateway number: 12268

You are invited to comment on proposals for temporary amendments to the Mental Health Act 1983 which may be required in the event of the severe staff shortages that may be expected during an influenza pandemic.

You are invited to say whether you think these proposals are likely to be helpful. Please let us know if there are any significant issues which you think we should have included, or if we have included anything unnecessary.

Download consultation document (PDF, 193K)
http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_103756.pdf

Responding to the consultation
Comments on the content of the consultation document should be sent by Wednesday 7 October 2009 to

Contact: Mental Health Legislation Team
Address: Department of Health
Wellington House
133-155 Waterloo Road
London SE1 8UG

Email:
pandemicandmentalhealth@dh.gsi.gov.uk

Opinion from FT.com

Swine flu sparks mental health law change  By Andrew Jack and Clive Cookson

Published: September 10 2009 19:33

…The plans could have wide-ranging implications for thousands of patients with suspected psychosis, depression and psychiatric problems who are “sectioned” against their will under the 1983 mental health act…

“To take away just about all the safeguards seems a serious step which removes the protections for patients and professionals. This is a much softer standard than we have now” Dr Tony Zigmond, Royal College of Psychiatrists

Read full article on FT.com here
——————–

Swine flu: Charities concerned over Mental Health Act plans

Community Care   “For everyone in social care”

In an editorial, on 11 September 2009, Jeremy Dunning reported:

Rethink and Mind issue warning over plans to alter sectioning safeguards in light of pandemic

Mental health charities have outlined concerns on proposed temporary changes to the detention of patients under the Mental Health Act in the event of a pandemic flu outbreak.

Rethink and Mind warned that patient safeguards could be compromised after the Department of Health yesterday issued consultative proposals to ensure Mental Health Act functions could be maintained should a flu outbreak trigger severe staff shortages.

The consultation, which is unusually short, closes on 7 October and would lead to the introduction of emergency legislation in the early autumn.

Proposed changes

The proposed amendments fall into three areas:-

  • Reducing from two to one the number of doctors required to comply with a number of actions under the act, including detention for assessment or treatment if the approved mental health professional making the application believes there would otherwise be an undesirable delay.
  • Extending or suspending time limits that apply to certain provisions – for instance suspending the requirement for a second opinion appointed doctor (SOAD) to approve giving a patient medication without consent if they have been in hospital for three months or more.
  • Allowing certain additional people to be approved to undertake some specific functions – for example some recently retired approved social workers may be temporarily approved to undertake the role of the approved mental health professional…

Read full editorial here

A brief article on Wednesday 23 September 2009, in Management in Practice reports:

Swine flu prompts changes to Mental Health Act

The government plans to rush through measures allowing people with suspected mental health issues to be quickly detained because of fears over staff shortages in any forthcoming swine flu outbreak, it has been revealed.

The temporary changes to the Mental Health Act, as laid out in an unusually short consultation lasting just one month, would mean it would only take one doctor, rather than two, to have a person sectioned and put on medication without their consent.

The measures could have a serious effect on the thousands of patients with psychiatric issues who currently live outside state care, meaning many could be detained against their will on the word of just one health professional.

With very little information on the proposed changes published, many mental health experts have warned the government that they risk side-lining an already vulnerable community and have called on it to spell-out the full raft of changes proposed in the consultation.  Source: Management in Practice

Invest in ME: Statement and letter to Prime Minister (e-petition)

Invest in ME: Statement and letter to Prime Minister (e-petition)

Statement from Invest in ME

6 July 2009

Invest in ME are profoundly disappointed by the continuing indifference to ME which the response to the e-petition from the Prime Minister’s office has shown.

The perfunctory response provides further confirmation that the current government has no intention of taking seriously the plight of people affected by ME.

The lack of attention which the government continues to display toward ME is evident in the uninformed and superficial response.

From the tardiness of the reply (provided over a month after the IiME ME/CFS conference in London was held) to the lack of any real policy being evident toward ME the Prime Minister’s office has demonstrated that the government has no interest in engaging with the patient community and is devoid of ideas as to how ME can be treated.

Invest in ME have responded to the Prime Minister. Our letter has been emailed and sent via Post to the Prime Minister.

A copy of our letter can be found below via the links provided.

Invest in ME have requested a meeting with the Prime Minister and are willing to organise a representation to visit him at any time.

We have also offered to arrange for the Prime Minister to visit a severely affected person with ME in the hope that he would see for himself the desperate needs of people with ME in this country.

We invite all friends of IiME to contact the Prime Minister’s office and voice their opinion.

Meanwhile Invest in ME have had a response from the Chief Medical Officer to our letter to him on ME Awareness Day. We hope to be setting up a meeting with his policy team in the near future.

The response from Invest in ME to the Prime Minister is available here –

http://www.investinme.org/Article-315%20PM%20July%202009.htm

PDF here

The Rt. Hon Gordon Brown MP
10 Downing Street
London SW1A 2AA
United Kingdom

5 July 2009

Subject: Response to the E-Petition to Attend the IiME ME/CFS Conference 2009

Dear Mr. Brown,

In March of this year an e-petition was raised (http://petitions.number10.gov.uk/AttendIiME2009/#detail ) asking the “Minister of Health, Medical Research Council delegates and the Chief Medical Officer to attend the INVEST in ME Conference 29th May 2009 London”. The petition was raised in March 2009 to allow enough time for the question to be raised to the relevant parties before the conference date of 29th May 2009.

On 1st July 2009 (over three months after the petition was raised and two months after the petition was closed) your office replied (http://www.number10.gov.uk/Page19853 ).

Invest in ME are profoundly disappointed by the continuing indifference to ME which the perfunctory response from your office has shown – and yet we hoped that perhaps we could expect more from our Prime Minister.

The petition was a genuine attempt to engage your government and the organizations/officials which you fund with public money. It was an endeavour to provoke some understanding of the issues involved in the current policies toward ME research. By attending the foremost biomedical research conference on ME in Europe your officials would be better equipped to understand the possibilities and the potential available in treating this debilitating illness.

The reply from your office is insulting in its complete lack of engagement of the proposal and of the underlying issues associated with this request.

It gives no joy for us to pronounce that your government is failing a large section of the UK population – people who are chronically ill and who are hoping for leadership and vision from the person who has the power to change things for the better.

Your office states that

“Ministers and the Chief Medical Officer receive a large number of invitations from stakeholders, pressure groups and individuals to attend meetings and events” and “it is not possible to attend the vast majority of these events”.

This was Invest in ME’s fourth annual international conference held in Westminster. We have been asking for the government and the CMO to attend in each of the last four years. The Department of Health has not sent one representative in all of that time.

Your office states that “The Medical Research Council is an independent organisation and it would therefore not be appropriate for the Prime Minister to instruct it.”

The MRC is a publicly-funded organisation “dedicated to improving human health”. It should be accountable to the public. The MRC receives annual ‘grant-in-aid’ funding from Parliament through the Department for Innovation, Universities and Skills and its council members are appointed by the Secretary of State for Science and Innovation.

It is entirely appropriate for the Prime Minister to intervene when there is deliberate bias being operated by this “independent” body which is, nevertheless, supposedly accountable to a government department.

The MRC has provided a total investment of £3,180,900 in funding research projects concerning ME – this money going to psychiatric therapies such as the PACE and FINE trials. Both of these trials are considered meaningless by ME patients and are ridiculed for their lack of scientific rigour in identifying true ME patients. Even those who have participated have criticised these trials. Your government officially recognizes ME as a neurological illness, as does the World Health Organization, yet you allow this “independent” body to avoid funding any biomedical research into ME and instead it supports vested interests who instead use this funding to pursue their own agenda of research into their own chosen fields of psychiatry. The latest ploy by the MRC of creating a panel intent on tying both biomedical and psychosocial factions together will be a liability for future research into ME and we have no faith or belief in their seriousness in looking for appropriate treatments for this illness.

It is a scandal that the MRC causes the prolongation of such an appalling waste of life and scarce resources; that it seems to lack any accountability for its actions (or lack of action); that it does not serve the patient community; that it is systemically flawed with a refereeing system for research proposals that is neither transparent nor fair; and that it ignores requests to attend a conference providing the latest information on biomedical research which is being held on its doorstep and which could lead to improvement in human health.

We cannot comprehend why you and your ministers feel it “inappropriate” to intervene to understand why the MRC policy toward research into ME is a failure.

The crass referral to the UK Clinical Research Network of the National Institute for Health web page in your reply to the petition indicates that there is nobody in your office who really understands anything about ME. We found just two references on that site regarding research for ME (the PACE Trial and the FINE Trial) – using the term chronic fatigue or chronic fatigue syndrome rather than myalgic encephalomyelitis.

The one-size fits all approach of your government, of NICE and of the MRC in supporting only Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) for people with ME – therapies rejected by the ME community – is testament to the lack of ideas and the lack of commitment by your government. We know of no patient groups who welcome studies into CBT and GET apart from two organisations who accept money from your government to support your policies.

NICE was taken to judicial review by ME patients due to their unsatisfactory guidelines for ME. Yet your government does nothing to recognize the dissatisfaction with your and their policies.

Your reply states that –

“some recent findings about a genetic basis of CFS/ME that are providing extremely valuable insights into the causes of, and possible therapies for, the condition these are early research findings that at present have no direct relevance to any predictive or diagnostic gene test for these conditions. However, the Department of Health continues to keep such developments under review and there are well-established mechanisms to evaluate new genetic findings and ensure their proper implementation across the NHS.”

This is a pitiful response which is condemnable by its lack of up-to-date information and patent spin. It is symptomatic of a government which doesn’t understand, doesn’t bother to verify, and cannot be bothered to do anything.

Your “independent” MRC refused to fund world-class research from Dr Jonathan Kerr which is clearly seen by others abroad to be state of the art. Why is public funding for this valuable gene research being constantly refused? It has been funded entirely by small charities and many individuals donate from their benefits because they are so desperate for proper treatments being developed instead of being offered only CBT and/or GET.

If any of your government ministers or officials had bothered to find the time to walk a few hundred metres to the conference venue on 29th May this year then they would have been able to judge for themselves how fatuous the response from your office is.

There is substantial evidence now of effective treatments for some sub-groups of ME. Antivirals are one example yet no funding has been made available for performing clinical trials and PCTs do not allow patients to be given these drugs. Yet how hypocritical the situation is when your Chief Medical Officer allows antivirals to be made freely available to any person suspected of contracting swine flu despite fewer people suffering from this flu variant than ME.

ME is the largest cause of long term absence from school through sickness for pupils and staff yet your CMO refuses to make ME a notifiable illness in schools.

Yet one case of swine flu frequently closes a whole school for weeks!

The DoH is not reviewing the treatments which are available for ME.

The CMO is not recommending research trials be carried out on promising treatments which privately funded research has identified.

Even the most basic and obvious action which should be required – an epidemiological study of ME in the UK – has not been performed by your government.

The use of a current and sound set of clinical guidelines for ME has not yet been standardized. The Canadian Guidelines document – held by most ME advocates as the best of the guidelines for diagnosis – is not advocated yet by the NHS or DoH despite it now becoming the de facto standard across the world.

Quite simply your government’s policy towards ME is non-existent and its attitude toward people with ME and their families is nothing short of scandalous.

Invest in ME has, in its four years of existence, attempted to educate healthcare staff, the media and the public about the real situation with ME, and show the biomedical research which is being carried out and which holds the promise of effective treatments and cures. Consistently your government has refused to acknowledge any of this.

And yet how easy it would be to change this with a clearly defined strategy of biomedical research which could be funded by public and private funding, if there was a will to do so.

Invest in ME began distribution of the book “Lost Voices from a Hidden Illness” earlier this year. Once delivery began we took the liberty of sending a complimentary copy to your wife, Sarah, who is global patron of the White Ribbon Alliance for Safe Motherhood and co-chair of the High-Level Leadership Group on Maternal Mortality convened by the Global Leadership Network.

ME is more prevalent in women, affecting up to four times as many women as men according to some studies. Many women with ME will never be mothers as they have fallen ill as teenagers and spend decades being bedbound. Many mothers have to watch their children’s suffering for years on end without any help from the health services.

Lost Voices is probably the best book ever about ME which shows the true picture of the effect of ME on suffers and families.

We have received neither acknowledgment of receipt of the book nor any indication that the book has been read.

If only one of your ministers would read Lost Voices then there would be no need for any further debate. The very basic compassionate instinct of most human beings would demand immediate action.

Your government fails its citizens, refuses to take any action, ignores the effort of two and a half thousand people who petition you to help them, looks the other way to the plight of the hundreds thousands of citizens affected by this terrible neurological illness and concentrates on spin and ignorance as the cornerstone of your policy toward ME.

A year ago you gave a speech in which you stated that –

“The NHS of the future will do more than just provide the best technologies to cure: it will also – as our population ages and long-term conditions become more prevalent – be an NHS that emphasises care too.”

“It will not be the NHS of the passive patient – the NHS of the future will be one of patient power, patients engaged and taking greater control over their own health and their healthcare too.”

“With cutting-edge techniques from genetics to stem cell therapy – and life-saving drugs to prevent, alleviate or cure conditions ……”

“So if we are to prevent as much suffering and save as many lives as possible, it is clear that utilising these new technologies must continue to be at the heart of any progressive health policy.”

In the last year Invest in ME are aware of people dying from ME, as has happened over the last decades.

We are aware of a family where the mother suffered from ME and where the pain was so great that she was taken to Switzerland to perform an assisted suicide.

We know of a recent case of one mother who has been charged with assisting her daughter in taking her life after she had suffered from severe ME for almost two decades – the pain being unbearable to endure.

We know of patients in the heart of London who suffer for years from ME and receive absolutely no medical treatment – lost voices with no recourse to help from a government and a healthcare service which provide nothing.

We know only too well of children who lose their teenage years and become isolated and reduced to utter dependency on parents who themselves struggle to find any help from the NHS, from the educational establishment or from ministers.

It is easier for people in the UK with ME to get help to die than it is for them to get help to live – thanks to your government’s policies.

Your government’s health ministers have consistently avoided taking any action, continued to answer the petitions and letters from people with ME and their families by using outdated information, template paragraphs containing multiple inaccuracies and an indifference to the plight of chronically ill people.

The cursory response to a valid plea from people with ME and their families shames your government and gives the lie to the sentiment that you really care for what happens to citizens in this country.

In this letter to you we have only concentrated on healthcare provision. We have not even begun to mention the effect of the policies of your government which force chronically ill people with ME to be denied benefits or to spend all their energy on battling to regain benefits taken away by your government departments.

So what are ME patients and their families to do now having received this appalling response from your office?

Despite no epidemiological study being recommended by your government or insisted upon by the health service we can suspect, from studies performed by responsible researchers, that there are between 120,000 and 240,000 people affected by ME in the UK.

Many of these can be expected to have some family and these, in turn, can be expected to have immediate friends and relatives.

It would be no exaggeration to assume, then, that upwards of two million people will be directly affected by the lack of healthcare provision for people with ME – either as direct sufferers of the illness, direct relations or friends of those affected. This figure could be a very conservative figure.

Although Invest in ME does not hold party political views it is an obvious corollary that two million citizens, or more, make up a substantial number of voters who cannot be ignored and who may decide with their votes what they think of the Labour governments’ policies toward ME over the last decade.

It may be that ME organizations can mobilize enough of a protest to make a difference in the forthcoming election and that would, indeed, provide an irony where, to use your own words, the “future will be one of patient power“.

Before we contemplate that action we would ask that you yourself make an hour or two of your time available and devote it to the cause of people with ME.

We ask you to accept a party of individuals organized by Invest in ME to visit you and explain clearly what is required and how your government’s lack of action is destroying lives – or let us take you to a chronically ill patient with ME so you yourself can see the utterly appalling situation which exists for people in this country who are denied treatments (which exist) due to the ignorance of the healthcare service, government ministers and establishment organizations responsible for deciding on which research is given funding.

Letters, petitions, emails and the deaths of people with ME have not moved your government to act.

Will you now see the desperate need for action, meet with us and let us try one last time to make you understand what is really happening?

Show us that, as Prime Minister, you and your government have not abandoned basic ideals of justice and humanity being directed towards its own citizens.

Time is passing not just for your government – more importantly it is also passing for another generation of sufferers from this illness.

Yours Sincerely,

The Chairman and Trustees of Invest in ME

Invest in ME
Registered UK Charity Nr. 1114035

www.investinme.org

Next meeting of the APPG on ME

Compiled by Suzy Chapman | 23 January 2009

Next meeting of the APPG on ME

The last meeting of the All Party Parliamentary Group on ME took place on 8 October. The Minutes of that meeting can be read here

The next meeting had been scheduled for December, subject to availability of a speaker.

It had been proposed by Ms Diane Newman (The M.E. Society, formerly Peterborough ME and CFS Self-Help Group) that a representative of the Mental Health Alliance should be invited to attend the APPG to discuss how new Mental Health legislation will affect people with ME and how it is being implemented. It is understood that the secretariat had been waiting on Ms Newman to suggest potential speakers.

Since the issue of speakers from the area of Mental Health remained unresolved, the December meeting was postponed.  The focus of the next meeting appears to have shifted away from new Mental Health legislation and an alternative speaker is now being sought.

I am advised that Jonathan Shaw MP, new Minister for Disabled People at the DWP, has been invited to attend a meeting proposed for February.

The Minister has been offered dates in early February, that is, prior to the NICE Judicial Review on 11th and 12th and the Parliamentary Half Term Recess (12th to 23rd February) but has also been offered alternative dates towards the end of the month.

So the date of the next meeting has still not been finalised – which is unfortunate as some regular attendees of APPG meetings will be planning to also attend one or both of the scheduled Court hearings for the NICE Judicial Review and some are going to need to book travel and escort arrangements for both these events.

As soon as a date had been firmed up and the agenda available, I will publish a copy here.

Tony Britton, Press and PR for the ME Association, has stepped down from his role as minute taker, a duty alternating between himself and Action for ME’s Heather Walker. It is not known whether the MEA intends to furnish a replacement for Mr Britton or whether the drawing up of agendas and the taking of minutes will be undertaken at future meetings only by a representative for Action for ME.

———————–

Proposed APPG inquiry into NHS service provision

With no meeting of the APPG scheduled until February (possible even later, depending on availability of a speaker) this means that there will have been no opportunity to discuss publicly the proposed APPG inquiry into NHS service provision for people with ME/CFS for well over four months.

We were given to understand that some form of patient questionnaire was to be issued before Christmas as part of a call for Written Submissions. This questionnaire has not materialised and no call for Written Submissions, deadlines for submissions or dates for Oral Hearings have been issued, either.

A revised and agreed Terms of Reference has not been published and no announcement has been made setting out the position on source(s) of funding for this project or whether an administrator for the project and admin resources have been secured. It had been mooted by Dr Des Turner, MP (Chair, APPG on ME), in October, that the inquiry might seek to obtain the necessary admin resources via Lord Darzi’s Office.

When the draft Terms of Reference were published in October, there were concerns that many of the processes and procedures through which this proposed inquiry would be undertaken remained undecided, that its aims and objectives remained undefined, and it was questioned whether the Terms of Reference, as they stood, could properly represent the voice of the ME community, in general, and the severely affected, in particular.

One view was that it would have been far better if some of the overall policies, practices and procedures had been thought through, worked out and incorporated into the terms of reference as a means of achieving the inquiry’s aims and objectives and then the matter put out to consultation with the ME community, with a reasonable timescale for people to respond within, and with a far better idea of what the inquiry plans to do and how it intends to carry out its plans.

It is not even known whether Dr Turner has been able to pull together a panel to undertake this inquiry.

So the progress of this project is left hanging.

———————–

Status of the ME Alliance

On 20 November 2008, I raised a number of questions in relation to the current status of the existing ME Alliance.

Sir Peter Spencer was identified as the representative who would be taking responsibility for responding to these queries on behalf of the Alliance. To date I have received no response from Sir Peter to this request for clarification.

Since it is now over nine weeks since this request was first made, and since a number of reminders have since been sent, I can only assume that the issue of the status of the existing ME Alliance is not something about which Action for ME is prepared to be transparent.  

See previous posting  Countess of Mar group Forward-ME website

YouTube: What happened to Sophia Mirza who died from ME/CFS

What happened to Sophia Mirza who died from ME/CFS

Comments can be left at: http://www.youtube.com/watch?v=7mZMpvtD3rg

From  MaverickMiracle 7.48 mins
Date added: 14 January 2009

Criona Wilson, mother of the late Sophia Mirza, tells how her daughter suffered unnecessarily.

Read Sophia’s documented story at SOPHIA AND M.E.

http://www.sophiaandme.org.uk/

———————

Criona addressed the All Party Parliamentary Group on ME’s July 2007 meeting where she spoke about the events leading up to her daughter’s death in 2003.

In June 2006, a commentary on the inquest of Sophia Mirza was published by Margaret Williams and Eileen Marshall:

Download document: Inquest Implications from the 25% M.E. Group website

( http://www.25megroup.org/Campaigning/Awareness%202006/Sophia’s%20story/Inquest%20Implications.doc )

Media coverage of Sophia’s story at:

http://uk.youtube.com/watch?v=dJvFwhW3FUY

http://uk.youtube.com/watch?v=mOqX0MPVYpE

http://uk.youtube.com/watch?v=0Y_T5ylWUv4

25% ME Group: Statement on the death of Lynn Gilderdale

freefoto

Image Freefoto.com  [Previous postings on ME agenda for media coverage of the death of Lynn Gilderdale are identified by the image above.]

25% ME Group

Statement: Tragic Death of Lynn Gilderdale

The 25% ME Group – support group for severe ME sufferers, would like to offer our sincere condolences to all the family of Lynn Gilderdale.

She was an extremely ill person, who suffered many complications due to having Myalgic Encephalomyelitis (ME).

Lynn had been a member of our national charity for many years and in fact volunteered to head up our poster campaign several years ago, which contributed greatly to raising awareness of the illness.

It is a fact of life that many continue to suffer with this devastating disease often in silence and completely alone and isolated. Certain areas of the medical profession have been responsible in the past for belittling the condition, but it is a reality that neurological ME, causes a great deal of pain and suffering for the patient, some of whom die from the disease as was the case with Sophia Mirza a few years ago. We also had a member who died from complications of ME, earlier this year.

I know personally that Lynn wanted to make a difference and to raise awareness of ME and we thank her, for what she did.

Our love, support and prayers will continue for Lynn’s mother, Kay, and all the family at this tragic and deeply sad time.

Yours sincerely
Simon Lawrence
Chairman
25% ME Group

Letter to The Editor: published by the Times, print edition 11 December,  from Hayley Klinger on behalf of the 25% ME Group

Sir,

Lynn Gilderdale was a valued member of the 25% ME Group and we are all heartbroken by her death, especially as we are fully aware of her mother’s total devotion to her. We represent ME sufferers who are totally bedridden, some of whom are tube fed and dependent on carers and others who are lucky enough to be able to leave home in a wheelchair occasionally; two other members of our group have recently died with ME on their death certificates.

Despite thousands of medical research papers showing immunological, neurological, endocrine, cardiac and gene expression involvement in ME, it is thought of as an illness of fatigue and even called Chronic Fatigue Syndrome by the media and some doctors. Our members in reality have to deal every day with truly debilitating, frightening and overwhelming symptoms, and they also have to cope with the loss of anything resembling normal life. Lack of knowledge from the medical profession and lack of understanding from a society which has been told for years that ME is merely fatigue can make this awful situation truly intolerable. Lynn’s mother made the point that ME is greatly misunderstood and Lynn suffered the stigma as well as bravely fighting such severe illness.

ME sufferers need to have their suffering recognised, and biomedical research funded if more deaths are to be avoided.

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Who are we?

The 25% ME Group is a unique nationwide charitable organisation managed entirely by volunteers (most of whom are severely affected by ME) and was set up to offer support services to those severely affected by ME (Myalgic Encephalomyelitis), and their carers. The group is also supported by two part-time admin staff. We provide a wide range of services to people affected by severe ME many of whom are virtually housebound and/or bedbound. (Please refer to the About Us section for more service details and how to join the group).

http://www.25megroup.org/about%20Us/about%20us.htm

A NICE DILEMMA? by Margaret Williams, Part One

The important paper, below, is published by Margaret Williams in relation to the forthcoming Judicial Review in the High Court in February ’09. 

It is available as a formatted document at MEActionUK website and also as a plain text document from the Co-Cure website list archive.  It has been circulated by Stephen Ralph of MEActionUK and by Jan van Roijen via the Help ME Circle list.   Queries in relation to this commentary should be referred directly to Margaret Williams, via Stephen Ralph.

The original formatted document was published as a single document and is lengthy.  For ease of reference and access, the document has been split across three postings: 

A NICE DILEMMA? by Margaret Williams, Part One

https://meagenda.wordpress.com/2008/12/19/a-nice-dilemma-by-margaret-williams-part-one/

A NICE DILEMMA? by Margaret Williams, Part Two

https://meagenda.wordpress.com/2008/12/19/a-nice-dilemma-by-margaret-williams-part-two/ 

A NICE DILEMMA? by Margaret Williams, Part Three

https://meagenda.wordpress.com/2008/12/19/a-nice-dilemma-by-margaret-williams-part-three/

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A NICE DILEMMA?  by Margaret Williams

15 December 2008

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

 

ME/CFS in the US

In the Summer 2008 issue of The CFIDS Chronicle published by The CFIDS Association of America, Anthony Komaroff, Professor of Medicine at Harvard, editor-in-chief of Harvard Health Publications and senior physician at Brigham and Womens’ Hospital, Boston (who has published more than 230 research papers on ME/CFS) wrote an article listing the top ten biomedical research findings in ME/CFS.

These are summarised at  http://www.prohealth.com/library/showarticle.cfm?libid=14063  and include evidence that

(1) many patients with ME/CFS have no diagnosable psychiatric disorder and that ME/CFS is not a form of depression;

(2) there is a state of chronic, low-grade immune activation, with evidence of activated T cells and evidence of genes reflecting immune activation, as well as evidence of increased levels of cytokines;

(3) there is substantial evidence of poorly-functioning NK cells (white blood cells that are important in fighting viral infections);

(4) there is evidence of white and grey matter abnormalities in the brain;

(5) there is evidence of abnormalities in brain metabolism (and evidence of dysfunction of energy metabolism in the mitochondria);

(6) there is evidence of abnormalities in the neuroendocrine system, particularly in the HPA axis but also in the hypothalamic-prolactin axis and in the hypothalamic-growth hormone axis;

(7) there is evidence of cognitive difficulties, especially with information processing, memory and/or attention;

(8)  there is evidence of abnormalities in the autonomic nervous system (including a failure to maintain blood pressure, abnormal responses of the heart rate, and unusual pooling of blood in the legs, as well as low levels of blood volume);

(9) there is evidence of disordered gene expression, especially in those genes that are important in energy metabolism and in genes connected to HPA axis activity, to the sympathetic nervous system and to the immune system;

(10) there is evidence of frequent infection with viruses, especially herpesvirus and enteroviruses.

Former top ME/CFS researcher at the US Centres for Disease Control (CDC), Dr Suzanne Vernon, stated on 5th December 2008 that there are now more than 5,000 peer-reviewed articles in the biomedical literature that tell us a lot about the disrupted biology of ME/CFS, about what happens to the immune and endocrine systems and to the autonomic and central nervous systems

( http://www.prohealth.com/library/showArticle.cfm?libid=14167  ).

When asked why this information had not been harnessed, her reply was that there is no good reason why it has not been translated to the medical community, saying: “no-one is filling that gap between the bench research and the bedside”. She noted that ME/CFS is “ultimately described as immune dysregulation and neuroendocrine disturbance”. Dr Vernon stated that “infection is the key to initiating/triggering ME/CFS and the immune system is central to sustaining (it). Hormones are critical in modulating the immune response. A unifying theme is disturbed cell signalling and cell metabolism. We know that low cortisol occurs in some patients with ME/CFS. Cortisol is a critical molecule for regulating the HPA axis and is essential for modulating the immune response”.

The results of a new study by Courjaret et al are unambiguous and straightforward: “no direct relationship between the chronic fatigue syndrome and personality disorders was shown” (J Psychosom Res 2009:66:13-20).

ME/CFS in the UK

The Courjaret study will doubtless cut no ice with those who are committed ME/CFS deniers: on 12th March 2008, one such denier (Frank Furedi), in an item entitled “The seven deadly personality disorders” stated: “Sloth has been medicalised, too. The creation of such conditions as chronic fatigue syndrome invites people to make sense of their lassitude through a medical label”

(  http://www.spiked-online.com/index.php?/site/article/4862/  ) .

As customary, when any biomedical aspects of ME/CFS are highlighted internationally, they fall on deaf ears in the UK, a case in point being the current issue of PULSE, which publishes the views of psychiatrist Dr Christopher Bass under the heading: “Need to know – somatoform disorders”.  In his article, Bass specifically includes “CFS” as a somatoform disorder. PULSE is a medical trade magazine widely distributed throughout the NHS and Dr Bass is a liaison psychiatrist who, with Simon Wessely, worked at Kings College Hospital before moving to Oxford (another hotbed of ME denial, where psychiatrist Michael Sharpe worked before he moved to Edinburgh).

Bass makes unsubstantiated claims and he repeats, vacuously, the Wessely School mantra, for example: “A cognitive behavioural therapy approach is helpful in patients with somatoform disorders because it addresses the predisposing, precipitating and perpetuating factors. CBT has been shown in many (sic) trials to be helpful in patients with medically unexplained symptoms such as chronic fatigue syndrome. Most patients with medically unexplained symptoms lasting for more than six months will have a somatoform disorder. Psychiatrists tend to use terms such as somatoform disorders while GPs and non-psychiatrist physicians use terms like chronic fatigue syndrome. The official diagnostic criteria for somatoform disorders-which include hypochondriasis, recently renamed as health anxiety to reduce stigma — include symptoms that are caused or maintained by psychosocial factors”.

In his PULSE article, Bass states that CBT has been shown to be helpful in “many” trials in patients with “CFS”, but even NICE itself in its now infamous Guideline on “CFS/ME” (CG53) could find only five such trials and it is not difficult to demonstrate that those five trials were methodologically flawed, a fact acknowledged by the team at the Centre for Reviews and Dissemination (CRD) at York who actually carried out the systematic review of the literature specifically to support the work of NICE on “CFS/ME”.

CBT/GET does not prevent death from ME/CFS

There have been a number of high profile deaths from ME/CFS in the UK. There can be few in the international ME community who have forgotten the harrowing death three years ago of 32 year old Sophia Mirza, who was forcibly but illegally detained under the Mental Health Act and who subsequently died from ME/CFS and whose autopsy revealed severe inflammation of the dorsal roots in her spinal cord. These are the sensory nerve roots, so she must have been in considerable pain for many years.

The most recent death is that of Lynn Gilderdale who died on 4th December 2008 aged 31, having suffered extremely severe ME from the age of 14. Lynn had been on a very potent combination of opioid and neuropathic pain medication via a subcutaneous pump and, sadly, her mother was arrested on suspicion of murder, so although Lynn had made a Will stating her wishes that her organs and tissues should be used after her death, her mother was in police custody and was unable to ensure that Lynn’s wishes were carried out at the time. The only organ that was retrieved immediately after Lynn’s death was the brain, and this was sent to Kings College Hospital, London (where Simon Wessely works). This exceptionally tragic case gained much media coverage, not only in the UK but also in countries including South America, the Czech Republic; Spain, Belgium, CNN Europe and Croatia.

Other recent deaths include that of Sue Firth from Yorkshire, who left two teenage sons, and Nicola McNougher from Bromsgrove, who also left two young sons. Like Lynn Gilderdale and Mrs Firth, Mrs McNougher suffered from severe ME; she was unable to tolerate the degree of pain and illness, so she went to Switzerland and chose to end her life there. Notably, Mrs McNougher was a psychotherapist; as such, she would, one imagines, have had the insight to practice cognitive behavioural techniques to her own advantage – if, that is, such techniques actually work. The evidence is that they do not work.

If CBT is so successful, where, then, was the involvement of the Wessely School psychiatrists, especially Professors Simon Wessely and Peter White, and even Professor Bass himself, in these tragic cases? Peter White is on record as affirming that CBT/GET can cure “CFS/ME” (“Is full recovery possible after CBT for CFS?”; Hans Knoop, Peter White et al; Psychotherapy & Psychosomatics 2007:76:171-176). Professor Michael Sharpe is also on record as asserting: “There is evidence that psychiatric treatment can reduce disability in CFS. In some cases, it can be curative” (“Psychiatric Management of Post Viral Fatigue Syndrome”; Michael Sharpe; British Medical Bulletin 1991:47:4:989-1005) and Simon Wessely himself is also on record as confirming that significantly more patients met the criteria for full recovery and that: “seven (23%) of the CBT patients were deemed completely recovered” (“Long term outcome of cognitive behavioural therapy versus relaxation therapy for chronic fatigue syndrome: a five-year follow up study”; Deale A, Chalder T, Wessely S et al; Am J Psychiat 2001:158:2038-2042). For the record, that same year (2001) Wessely is also on record as stating that CBT is not “remotely curative” (Editorial; JAMA 19th September 2001:286:11). Wessely does not clarify how the same intervention can result in complete recovery even though it is not remotely curative.

None of these trials, of course, included anyone who was severely affected by ME/CFS; indeed, it is entirely possible that there was not a single patient with ME/CFS in any of those studies, since most of the trials used the Oxford criteria and those criteria expressly exclude people with neurological disorders but do specifically include those with psychiatric disorders (which often have “fatigue” as a problematic symptom).

NICE “Guidelines” are to become legally enforceable in 2009

In an attempt to justify its reliance on those few (and methodologically flawed) RCTs in its Guideline on “CFS/ME”, it is anticipated that on 11th and 12th February 2009 NICE will have to explain its reasons for doing so before a High Court Judge, more particularly so given the recent announcement that “GPs will have to prove they follow NICE Guidelines or face the possibility of suspension, prosecution or the closure of their practice. Baroness Young, chair of the Care Quality Commission, revealed that guidance from NICE would become legally enforceable from 2009, with doctors to face tough annual checks on their compliance. Baroness Young told last week’s NICE annual conference that policing clinical guidance was set to be a key part of the CQC’s work, and admitted the commission had been handed ‘draconian’ powers by Ministers” (PULSE: “Threat of legal action if GPs fail to follow NICE”; Nigel Praities; 11th December 2008).

Before it can start wielding these draconian powers in relation to ME/CFS patients, NICE may be required to explain to the satisfaction of the Judge why it relied upon an evidence-base of just one systematic review that comprised only 18 clinical trials, not all of which were random controlled trials (RCTs), of which just five were RCTs of CBT and a further five were RCTs of graded exercise therapy, making a grand total of just 10 RCTs, all on a patient base of just 1,448 patients who may or may not have had ME/CFS.

This should be compared with NICE’s Clinical Guideline on multiple sclerosis (CG8), which had an evidence-base that contained 80 systematic reviews of approximately 1,107 RCTs on a patient base of 89,230 MS patients. It will be recalled that the Government states there are 240,000 with “CFS/ME” in the UK, which far exceeds the number of people with MS.

Clearly there was insufficient evidence upon which to predicate a national Guideline for “CFS/ME”, so – according to the rules – NICE should have chosen the OIR option (Only in Research), which would have been the correct procedure for the Guideline Development Group (GDG) to have followed. It chose not to do so, thereby fuelling the perception that the GDG was intent on recommending CBT/GET whatever the evidence or lack of it.

Some failures by NICE to adhere to its own Guideline Development Manual

It is anticipated that NICE will also be required to explain to the Judge why it failed to adhere to its own Guideline Development Manual in the production of its Clinical Guideline 53 on “CFS/ME” in numerous other important areas.

For example, there was the unfortunate “misprint” in the printed version of the Questionnaire that respondent stakeholders were required to complete prior to the publication of the draft Guideline, a “misprint” that potentially skewed the answers to over one third of the questions in that the instructions were misleadingly worded and seemed deliberately ambiguous, even to a clear-thinking person, let alone an ME/CFS patients with cognitive difficulties. Perhaps expediently, the instructions for the following section (starting with question 62 and relating to “Behavioural Approaches”) changed – without guidance or notification – from choosing to tick “inappropriate” in the previous section to choosing to tick “appropriate” in that section.

Without having attention drawn to this important change, few people with cognitive problems such as are found in ME/CFS would have spotted this hurdle. When notified of this, respondents were given just two days by Nancy Turnbull to correct their responses (see email sent on 3rd May 2006 at 2.26pm from Nancy Turnbull to Participants), which was an impossibility, since many completed Questionnaires were likely to have been posted back by then. NICE did not seem concerned, but perhaps this was because the outcome was a forgone conclusion, so whatever information patients submitted was of little value to the GDG, who are on record as affirming that patients’ evidence was deemed to be “biased” (J Inf 2007: 55:6:569-571) and therefore of little value, which is in direct contradiction to the Expert Patient programme rolled out in 2001 by NICE’s own paymaster, the Department of Health, in which patients with long-term diseases are to be acknowledged as experts in their own conditions).

Then there was the curious matter of NICE quietly dropping the required second consultation on the draft Guideline; although NICE instituted a nominal “consultation” period (which for some reason was over the 2005/6 Christmas/New Year break) on their wish to drop the second consultation, many stakeholders were unaware of it, even though they were required to be notified of it by NICE. The Manual is unambiguous that Guidelines in preparation that were beyond a certain stage of development (as was the case with CG53) were to continue under the old rules (which stipulated not one but two consultations). This did not happen with CG53.

Click here for Part Two

https://meagenda.wordpress.com/2008/12/19/a-nice-dilemma-by-margaret-williams-part-two/ 

Introduction of “Consensus” for CG53

RCPsych welcomes IPCC report concerning the use of police custody as “place of safety” under Mental Health Act

Royal College of Psychiatrists Press release

http://www.rcpsych.ac.uk/pressparliament/pressreleases2008/bank2008/pripccreport.aspx

Royal College of Psychiatrists welcomes IPCC report concerning the use of police custody as a “place of safety” under the Mental Health Act

Embargoed until 10 September 2008

The Royal College of Psychiatrists welcomes the Independent Police Complaints Commission’s (IPCC) report which examines the role of the police in relation to the use of Section 136 of the Mental Health Act 1983.

Section 136 of the Mental Health Act enables the police to take someone who they believe is suffering from a mental disorder and in need of immediate care or control from a public place to a place of safety.

The IPCC report highlights the number of individuals who are taken to a police station as a place of safety. The College agrees that such an environment is poorly suited to managing vulnerable people who have medical problems or are at risk of harming themselves, and may also have the effect of criminalising them. The revised Code of Practice to the Mental Health Act makes clear that this should only now occur on an “exceptional basis”.

The Royal College of Psychiatrists has established a multi-agency group to develop a new set of standards on the use of Section 136. All relevant professional organisations and monitoring agencies were involved, including the IPCC. We are pleased that many of the IPCC’s recommendations relate to recommendations made in these new standards, which are due to be published on 29 September 2008.

Dr Michele Hampson, chair of the multi-agency group responsible for developing these new standards, said: “The IPCC research highlights the need to improve practice in relation to Section 136. However, we do not currently have reliable data on the number of people who are detained in this way.

“Detention under Section 136 is the only civil detention under the Mental Health Act for which no statutory form is required. The Royal College of Psychiatrists wants to see a single, nationally-agreed standard form introduced, and we are pleased that the IPCC has adopted this as one of its recommendations (Recommendation 13). Only then can we begin to improve standards of care for this vulnerable group of individuals”.

Dr Hampson also highlighted the urgent need for better staffing of Section 136 facilities. She said: “Although the Department of Health released £130 million for the development of Section 136 assessment facilities in mental health units in 2006, no funding was allocated for staff. Anecdotally, we have heard of new units which are unable to open for lack of staff, and others that expect the police to remain until the assessment has been completed. Sufficient staff must be available at short notice to enable these facilities to cope with all but the most disturbed individuals or those needing medical care. This must be given the priority it deserves.”

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For further information, please contact Liz Fox or Deborah Hart in the Communications Department. Telephone: 020 7235 2351 Extensions. 298 or 127 E-mail: efox@rcpsych.ac.uk  or dhart@rcpsych.ac.uk

References:

Docking M, Grace K and Bucke T (2008) Police Custody as a “Place of Safety”: Examining the Use of Section 136 of the Mental Health Act 1983. Independent Police Complaints Commission

Note to editors:

Section 136 of the Mental Health Act 1983 gives the police powers to remove a person who appears to be suffering from mental disorder and who is “in immediate need of care or control” from a public place to a place of safety. Removal may take place if a police officer believes it is necessary in the interests of that person, or for the protection of others. The purpose of removing a person to a place of safety is to enable them to be assessed by a doctor or interviewed by an allied mental health professional, so that the necessary arrangements can be made for their care and treatment. The Royal College of Psychiatrists will launch its Standards on the Use of Section 136 of the Mental Health Act 1983 on 29 September 2008. The Standards have been developed by a multi-agency group, led by the Royal College of Psychiatrists. Members include representatives from the Metropolitan Police, the Royal College of Nursing, the College of Emergency Medicine, the Faculty of Forensic and Legal Medicine, the Ambulance Association, the Healthcare Commission, Mental Health Act Commission, the National Institute for Mental Health in England and the IPCC. The Royal College of Psychiatrists is tackling the inequalities facing people with mental health problems through its new three-year Fair Deal campaign. Over the next three years the College will focus on eight priority areas: Funding, Access to Services, In-patient Services, Recovery & rehabilitation, Discrimination & stigma, Engagement with service users and carers, Availability of psychological therapies, Linking physical and mental health.

www.fairdeal4mentalhealth.co.uk