Archive for the 25% ME Group Category

RSM “Medicine and Me” event: ME and CFS

Posted in 25% ME Group, AfME/Action for ME, AYME, CBT/GET, ME Association, Royal Society of Medicine, Sir Peter Spencer, The Young ME Sufferers Trust on May 6, 2009 by meagenda

Royal Society of Medicine event in the “Medicine and Me” series

http://www.roysocmed.ac.uk/academ/x2g106.php

Medicine and Me: ME and CFS – Hearing the patient’s voice

Saturday 11 July 2009

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

organised by the Royal Society of Medicine and The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes Trust

‘Medicine and Me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition.

This ‘Medicine and Me: ME and CFS’ conference is organised jointly by the Royal Society of Medicine, The ME Association, Action for ME, AYME, The 25% ME Group and The Tymes Trust.

‘Medicine and Me’ meetings aim to provide a forum in which patients’ concerns about their illness are given top priority. The meetings provide an opportunity for patients and their families to share experiences, to hear about the latest research and treatment, to discuss treatment choices and access to treatment, and to question the experts on a wide range of issues.

This meeting will focus on the difficulties and delays in diagnosis, ME and CFS in children and adolescents, the existing range of treatments, and the latest research and its impact on the development of new, disease-modifying treatments.

The audience at ‘Medicine and Me’ meetings typically comprises patients, their families, carers and advocates, representing at least 70% of those present; and clinicians and researchers, representing not more than 30%. Clinicians will include doctors, specialist nurses and all other health professionals involved in the treatment and care of patients with ME and CFS.

This meeting will be suitable for all those affected by ME and CFS

Registration Details:
Fellow: £50
Associate: £30
Trainee – Fellow: £30
Retired Fellow: £30
Student Members: £20
Non-Fellow: £70
Allied Health Professional: £35
Nurse: £35
Trainee – Non-Fellow: £35
Student: £25
Patient: £10
Carer: £10
CPD: 3 credits

[Registration button]

Agenda:

12.15 pm

Registration and coffee

1.00 pm

Welcome address
Dr David Misselbrook, Dean, RSM & Ms Jane Colby, Executive Director, The Young ME Sufferers Trust

Session One
Chair: Dr Charles Shepherd, ME Association

1.10 pm
Diagnosis: the patient’s perspective
Mr Jez Harding, Jez Harding Consulting Ltd, London

1.25 pm
Patient videos

1.35 pm
A rational, efficient and practical approach to diagnosis

Dr Abhijit Chaudhuri, Essex Centre for Neurosciences

1.50 pm
Questions

1.55 pm
ME in children and adolescents: the patient’s perspective
Miss Shannen Dabson

2.10 pm
Addressing the educational impact of ME

Mr Hardip Begol, Department for Children, Schools and Families, London

2.25 pm
Questions

2.30 pm
Treatment: the patient’s perspective

Ms Annette Barclay

2.50 pm
Treatment- evidence based and pragmatic approaches
Professor Anthony Pinching, Peninsula Medical School

3.05 pm
Questions

3.10 pm
Tea break

Session Two
Chair: Sir Peter Spencer, Action for ME

3.35 pm
Research: what do patients want and why isn’t it happening?

Dr Neil Abbot, ME Research UK and University of Dundee

3.50 pm
ME: a research orphan for too long
Professor Stephen Holgate, University of Southampton

Session Three
Chair: David Misselbrook, Dean, RSM

4.05 pm
Panel discussion
All speakers and Dr Nigel Speight, adviser to ME Association and Professionals Referral Panel, The Young ME Sufferers Trust

4.55 pm
Closing remarks
Mrs Mary-Jane Willows, Association for Young People with ME

Mr Simon Lawrence, The 25% ME Group

Dr David Misselbrook, Dean RSM

5.00 pm
Close of meeting

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Documents, NICE CFS/ME Judicial Review: M Williams

Posted in 25% ME Group, CBT/GET, Judicial Review, ME Association, ME in the media, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, UNUM on October 31, 2008 by meagenda

Margaret Williams has issued a series of documents created specifically for the NICE Judicial Review. These are being circulated by Stephen Ralph and are also available from the MEActionUK website.

Stephen Ralph has created a page for all Judicial Review documents and this can be found on a button at the top of the main page of www.meactionuk.org.uk

Alternatively you can find the page directly by clicking on this link:

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

Please note that there is some duplication of documents already published.

Document 1: http://www.meactionuk.org.uk/Background_Information_re_CBT.htm  

Background information and illustrations of evidence that CBT cannot improve ME/CFS which NICE disregarded

Margaret Williams 25 July 2008

Document 2: http://www.meactionuk.org.uk/Facts_re_GET.htm

Evidence that the Guideline Development Group that produced the NICE Guideline on CFS/ME (C53) failed to fulfil its remit

(particularly in relation to the potential dangers of graded exercise therapy)

Margaret Williams 7 July 2008

Document 3: http://www.meactionuk.org.uk/Cardiovascular.htm  

Evidence of cardiovascular problems in ME/CFS that NICE disregarded

Margaret Williams 4 August 2008

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Position on RSM Bristol conference: TYMES Trust, 25% M.E. Group

Posted in 25% ME Group, AfME/Action for ME, AYME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Royal Society of Medicine, Sir Peter Spencer, The Young ME Sufferers Trust on September 18, 2008 by meagenda

ME patient organisations’ positions on the RSM’s regional conference on “CFS”

In the weeks before the RSM’s controversial London “CFS” conference, four of our leading ME patient organisations had issued position statements in response to a statement published by Action for ME (AfME) in defence of Sir Peter Spencer’s participation in this event.

Yesterday, I approached The ME Association, The Young ME Sufferers Trust, The 25% M.E. Group and Invest in ME to enquire whether these organisations have issued or intend to issue position statements on the RSM’s CFS regional conference taking place in Bristol today or have made any arrangements for literature to be handed out to conference attendees. A week ago, I also contacted the Bristol ME Support Group for their position on this conference and to enquire what action they might be taking.

Simon Lawrence, Chair The 25% M.E. Group

Simon Lawrence says that unfortunately he only recently became aware of this conference through the grapevine and that this was probably mainly due to his own ill-health. The 25% Group have therefore no arrangements in place to make a statement concerning this and have been unable to campaign because of the lateness.

 

Jane Colby, Executive Director The Young ME Sufferers Trust

Jane Colby says that The Young ME Sufferers Trust has been liaising with the RSM about redressing the problem of these conferences in the future; that the Trust has made its position clear that the speakers who are taking part will need to be balanced by different speakers in another medical conference. With regard to the Bristol Conference, Ms Colby says that she had got the impression that another demo* was being organised but that it now seems that this may not be the case after all. However, the Trust’s position is the same as it was for the London conference, because the Trust expects the same messages to be expressed by these speakers.

*Ed No announcement had been made that a demonstration of any kind had been organised for Bristol. A notice had been circulated by Gus Ryan on some internet forums and e-lists asking for anyone interested or who knew of anyone who would be interested in organising/attending a gathering outside the conference to contact him.

I will be commenting on these responses after I have heard back from The ME Association and Invest in ME.

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Bristol RSM Conference: Where’s the action?

Posted in 25% ME Group, AfME/Action for ME, AYME, CBT/GET, Invest in ME, ME Association, NICE CFS/ME guideline, Prof Peter White, Royal College of Psychiatrists, Royal Society of Medicine, The Young ME Sufferers Trust on September 18, 2008 by meagenda

Bristol RSM Conference: Where’s the action?

Before the controversial RSM’s London CFS Conference had taken place in April, it was already known that a regional one day conference on CFS had been scheduled by the Royal Society of Medicine Wessex Region for Bristol, for 18 September.

This conference takes place today and once again is intended for medical and allied health professionals, only.

I had been alerted to this event by Neil Riley, Chair of the ME Association Board of Trustees, on 13 April.

I flagged up this regional conference in a posting on Read ME UK Events site on the same day; the site received just under 3000 hits during the month of April, alone.

Since then, I have flagged up this Bristol conference several times on both Read ME UK Events and ME agenda site.

I have also put out a copy of the Agenda for tomorrow’s conference on the Co-Cure mailing list together with the Agenda for a conference on Chronic Fatigue Syndrome in Children and Young People by the Royal College of Psychiatrists South West Division Training being held in Devon, on 24 October.

Dr Esther Crawley, who was a member of the NICE Guideline Development Group, will be presenting at both the RSM’s Bristol conference and the Royal College of Psychiatrists conference. 
Click here for Agendas for these meetings.

In the run up to the RSM’s London CFS Conference, I had launched a Postcard Campaign to help raise awareness of the conference itself and to encourage the ME community to write in to the RSM and express their concerns. This was just one of a number of initiatives around this conference.

I’ve already mentioned, here, that unfortunately due to personal circumstances I have not been in a position to undertake a Postcard Campaign for the Bristol CFS Conference.

Given the interest in the RSM’s London conference in April, the ME community and the organisations which represent our interests have been notably subdued about the conference taking place tomorrow.

Although this is a regional conference it has implications for all of us in the UK, and internationally. There are many of us who consider that the influence of Professor Peter Denton White is equal to that of Professor Simon Wessely, and Professor White is giving the same presentation in Bristol that he gave in London, in April. There is also a presentation on behalf of NICE.

But as a regional conference, it has particular relevance to residents of the Bristol area for it is their medical professionals – their local GPs, medical trainees and allied health professionals – whose bums will be on the seats at UBHT Education Centre, tomorrow.

To the best of my knowledge no position statement has been issued by the Bristol ME Support Group whose members are amongst those for whom this conference has most relevance. On Saturday, I contacted the Bristol ME Support Group to ask what the Group’s position on this conference is, whether they had issued a position statement and whether the group were taking any action or had written to the media or to the RSM?

I’ve received no response so far on behalf of the group.

In March/April, AfME had issued a statement about Sir Peter Spencer’s participation in the London RSM Conference and this was followed by responses in the form of position statements from the ME Association, The 25% ME Group, The Young ME Sufferers Trust and Invest in ME. Full copies of all these positions statements were posted on both blogs and extracts were included in the “On a Postcard, please” Campaign Flyer. Paul Davis of RiME also provided a brief position statement specifically for inclusion in the Flyer.

Our patient organisations have also been notably muted on the issue of this Bristol conference.

Yesterday I contacted the ME Association, The Young ME Sufferers Trust, The 25% ME Group and Invest in ME to enquire whether any of these organisations have issued or intend to issue position statements on the Bristol conference or have made any arrangements for material to be handed out to conference attendees.

I will post any responses I receive as they come in.

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Thanks to M.E. Support – Norfolk

Posted in 25% ME Group, AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer, The Young ME Sufferers Trust, UNUM on June 18, 2008 by meagenda

Thanks to M.E. Support – Norfolk

M.E. Support – Norfolk group mails out an A5 monthly newsletter called MEMO to its membership.

I’d like to thank John Sayer, Editor of MEMO and Chair of M.E. Support – Norfolk’s committee for the coverage given to two initiatives associated with the Royal Society of Medicine “CFS” Conference which took place, in London, on 28 April 2008.

The first four pages of the April edition of MEMO were given over to the promotion of the Royal Society of Medicine demonstration – the RSM Protest, which included an introduction by Suzy Chapman, a full copy of the position statements issued by The 25% M.E. Group and Jane Colby on behalf of The Young M.E. Sufferers Trust, and the RSM Protest notice issued by RSM Protest Organiser, Gus Ryan.

The following edition of MEMO devoted an additional four pages to the promotion of the RSM Postcard Campaign launched by Suzy Chapman in the run up to the “CFS” conference.

It was very much appreciated that M.E. Support – Norfolk committee and MEMO editorial gave over so much space in two consecutive newsletters to help promote these initiatives launched in protest against the RSM Conference and to help raise awareness of the considerable concerns surrounding this line-up and agenda for this conference and I should like to thank John Sayer and his committee for their support.

Suzy Chapman,
“On a Postcard, please” Campaign Co-ordinator
https://readmeukevents.wordpress.com
http://meagenda.wordpress.com

A copy of this notice also appears on ME agenda site.

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25% ME Group Press Release: RSM CFS Conference

Posted in 25% ME Group, AfME/Action for ME, CBT/GET, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, Royal Society of Medicine, Sir Peter Spencer on May 10, 2008 by meagenda

In April, the 25% ME Group issued a Press Release in respect of their position on the Royal Society of Medicine’s “CFS” Conference, which was held on 28 April.  This Press Release has only just come to my attention and although the RSM’s conference has come and gone I am posting it, here, for the sake of completeness.

A Word doc of the Press Release can be downloaded from the 25% ME Group website here

For links to copies of the 25% ME Group’s position statement on the RSM “CFS” Conference and for position statements from Action for ME, the ME Association, The Young ME Sufferers Trust, Invest in ME and RiME click here

25% ME Group (Support for Severe ME Sufferers)

PRESS RELEASE

The Royal Society of Medicine Conference on “CFS” April 28th, London

Why is there an international outcry from patients suffering from Myalgic Encephalomyelitis (ME)?

It is because the Royal Society of Medicine is holding what should be an impartial conference in London, on Chronic Fatigue Syndrome (CFS), [often equated with Myalgic Encephalomyelitis (ME)]. Unfortunately it is only including information on psychiatric models of causation and treatment.

Sufferers in the UK have had to endure an unrelenting campaign by certain psychiatrists , some with connections to the medical insurance industry, to try to downgrade their World Health Organisation recognized neurological disease, to a psychosomatic disorder ; Chronic Fatigue,

Recent research by the 25% Group uncovered a shocking picture of severely ill ME sufferers being labeled as psychiatric patients, being treated with contempt by many GP’s, doctors and nurses, being locked in secure units and shut in AIDS wards, being refused food and being forced to participate in inappropriate graded exercise and behavioural therapy, designed to convince them there is nothing seriously wrong with them.

“I have had severe ME for almost a decade and a half and all that time have been severely disabled as well as chronically and constantly ill.” says Linda Crowhurst. “To my dismay and outrage, the situation which was dreadful when I first got ill has indeed worsened as the psychiatric lobby has got itself firmly embedded into the politics, culture and ‘treatment’ of ME.”

Calls from ME patients for a proper biomedical service continue to go unheeded, vital medical evidence is either ignored or suppressed and sufferers, many as ill as an AIDS patient close to death, are given a psychiatric label.

The upcoming RSM Conference is yet another example of how multi-billion dollar vested interests and corporate industry have managed to infiltrate almost all major institutions with the arrogant pursuit of a psychiatric construct for this serious life-threatening disease.

The Chairman of the 25% ME Group says: “The existing evidence from surveys of over 3,000 patients suggests that such regimes (e.g. Cognitive Behavioural Therapy/Graded Exercise Therapy), which are being discussed at the RSM Conference, are of limited value and at worst are harmful, leading to increased illness and disablement”.

The 25% ME Group stands uncompromisingly for the truth that ME is a World Health Organization classified neurological (ICD10:G93.3) multisystem, physical disease, not a subgroup of any fatigue syndrome. We cannot support any organisation that promotes or endorses the inappropriate and dangerous psychosocial model of M.E”.

Notes to Editors :

There is still much confusion and a lack of accurate knowledge about severe ME/CFS in the medical profession, leaving many patients dismissed and abandoned without support.

Variants of the term “M.E.” were first used following a series of repeating epidemics starting in May 1955 at the Royal Free Hospital, London. Recognised as a specific disease entity by The Royal Society of Medicine in 1978 and by the World Health Organisation since 1969 as an organic neurological disease, ME/CFS is currently classified under ICD code G93.3.

ME ranks second only to HIV as the cause of serious, long-term illness in the USA.

The following is a quote from Dr Marc Loveless under oath in testimony before Congress in 1995.

“I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”

Cycles of severe relapse are common, as are further symptoms developing over time. Around 30% of cases are progressive and degenerative and sometimes ME/CFS is fatal. Two recent reviews have concluded that, “Substantial improvement is uncommon and is less than 6%”; and, “Full recovery… is rare.” According to the Chief Medical Officer, people with severe ME/CFS in the UK currently receive “seriously inadequate health care.”

25% ME Group (Support for Severe ME Sufferers)

21 Church Street
Troon
Ayrshire
KA10 6HT

Email: enquiry@25megroup.org

Website: www.25megroup.org

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RiME issues position statement on RSM

Posted in 25% ME Group, AfME/Action for ME, CBT/GET, ME Association, NICE CFS/ME guideline, Prof Peter White, Prof Simon Wessely, RiME, Royal Society of Medicine, Sir Peter Spencer, The Young ME Sufferers Trust on April 7, 2008 by meagenda

Paul Davis of RiME has provided me with the following position statement on the RSM CFS Conference for inclusion in the “On a Postcard, please” Campaign Flyer.

Campaigning for Research into ME (RiME)

RSM Meeting 28/4/08

RiME disassociates itself from the above meeting. This type of forum is not only unhelpful but harmful in that it enmeshes a neuro-immune-endocrine-vascular disease (ME) with a range of other conditions, some of which might respond to psychiatric / psychological models of treatment. That an organisation which purports to represent ME patients’ interests would participate shows the depths to which it has sunk. Instead of fighting the ME patient’s corner, it cosies up to the establishment. I wonder why? Shame on it.

Paul Davis
6 April 08

Position statements issued by the following national ME patient organisations can be found here:

AfME (First statement)

https://readmeukevents.wordpress.com/2008/03/12/afmes-statement-re-the-rsm-chronic-fatigue-syndrome-conference/

AfME (Second statement)

https://readmeukevents.wordpress.com/2008/03/14/further-statement-from-action-for-me-on-rsm-conference-14-march-2008/

ME Association

https://readmeukevents.wordpress.com/2008/03/25/me-association-issues-revised-statement-on-rsm-conference/

25% M.E. Group

https://readmeukevents.wordpress.com/2008/03/21/25-me-group-position-statement-on-the-rsm-cfs-conference/

The Young ME Sufferers Trust

https://readmeukevents.wordpress.com/2008/03/22/the-young-me-sufferers-trust-statement-on-rsm-cfs-conference/

Invest in ME

https://readmeukevents.wordpress.com/2008/03/30/invest-in-me-issues-statement-on-rsm-cfs-conference/

Graphic copyright meagenda

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