Today, with four weeks to go before the Royal Society of Medicine “CFS” conference, I am launching the
http://readmeukevents.wordpress.com/2008/03/29/on-a-post-card-please-campaign/
or
http://rsmcfspostcards.notlong.com
Today, the ME Association has issued a revision to an earlier statement which confirms the Royal Society of Medicine’s volte-face regarding the organisation’s request to have a stand at the CFS Conference on 28 April. The MEA is aware that the Planning Committee for this conference included Professor Peter White, Professor Simon Wessley, Professor Kam Bhui and Professor Matthew Hotopf – so it isn’t too difficult to understand why there is such a predominance of speakers from a psychiatric/psychological background.
The RSM has said “The RSM went through a process of establishing a planning group to discuss the content of this conference well over a year ago. The programme is now fixed and speakers have been engaged for some considerable time and it is too late to change the programme.”
It would be interesting to know whose initiative this conference was and who was responsible for the drawing up and selection of the members of the conference Planning Committee. Dr John Scadding Chairs the Planning Committee.
25 March 2008
The ME Association fully shares the concerns of a growing number of our members who have been contacting us about the strong psychiatric/psychological bias to the presentations that will be given to a meeting on CFS at the Royal Society of Medicine (RSM) on April 28.
When we were first contacted about this meeting by the RSM we included details on our website and in our magazine ‘Events Diary’ – as we believe everyone should be made aware of meetings and conferences that may be of interest to both people with ME/CFS and to health professionals.
We then asked the RSM if it would be possible for the MEA to have a stand at the conference in order to provide some balanced information. Our request for a stand, for which we were willing to pay, was initially turned down by the RSM.
We have just been informed that the RSM has changed its mind and that we shall now be able to provide information to attendees at this Conference. The trustees thought long and hard about whether, by attending this meeting, we were in any way endorsing it. Let me assure you, that is not our intention. Our judgement is that it is better to be at this meeting and provide balanced information to the attendees than to leave them to hear the overwhelmingly psychiatric / psychological views of the speakers at this meeting.
We shall provide information and offer discussion on:
It is hard to understand why the RSM has failed to grasp the opportunity to put on a meeting that really does take a broad look at an illness that is classified as neurological by the World Health Organisation. Our attendance at the meeting is an opportunity to redress the balance.
Neil Riley
Chairman of the ME Association
A PDF copy of the RSM CFS Conference Programme which contains some additional information to that posted on the RSM’s website can be accessed at:
http://readmeukevents.wordpress.com/2008/03/23/rsm-cfs-conference-programme/
As well as a reference to the NICE CFS/ME Guideline, the PDF also lists the members of the CFS conference planning committee:
“Planning Committee: Dr John Scadding (Chair), Miss Bina Arpino*, Professor Peter White, Professor Simon Wessley, Professor Kam Bhui, Professor Matthew Hotopf.”
Few surprises, there, then.
*Ms Bina Arpino is a member of the RSM’s event admin staff; other members of the CFS Conference Planning Committee are presenters at the conference or session chairs.
13 March 2008
The 25% Group have recently put out a statement which we are supporting as follows:
The Young ME Sufferers Trust supports the 25% ME Group on its stance over the RSM May* conference.
The Trust does not consider that involvement with such a conference can do other than lend further credibility to those who already have undue influence on treatment for children with ME.
Families tell us that their children’s condition is either not being helped, or is being harmed by such dogma.
Jane Colby
Executive Director
The Young ME Sufferers Trust
PO Box 4347
Stock Ingatestone
Essex CM4 9TE
Tel 0845 003 9002
www.tymestrust.org
*28 April 2008
Demonstration
Royal Society of Medicine | Monday 28th April 2008
Wimpole Street and Henrietta Street | 1pm to 6pm
Enquiries to organiser Gus Ryan creamcrackereduk@yahoo.co.uk
Information http://readmeukevents.wordpress.com
Yesterday, I posted commentary on Read ME UK Events from Dr Alastair Miller on the RSM CFS Conference:
“The reality right now is that we do not have any evidenced based approaches other than CBT and GET to help our patients and these techniques are helpful to many of our patients – not everyone and I do accept that in some cases they may worsen the situation but that is true of many conditions and many therapeutic interventions. Equally we know that CBT may help symptoms in many other situations – for example, it is of benefit in some patients with cancer and nobody would claim that cancer is a psychological condition.”
Dr Alastair Miller, Royal Liverpool University Hospital, speaker at the forthcoming Royal Society of Medicine CFS Conference
and here we go again, in today’s Financial Times…
“This troubles me, because Nice’s recommendation doesn’t imply this at all; psychological or behavioural treatments can, for example, be used to improve the quality of life of people who have diabetes, asthma, or cancer.”
Financial Times Weekend columnist Dr Margaret McCartney
By Margaret McCartney
Published: March 22 2008 02:55
“Medically unexplained conditions are common and frequently contentious. Conditions such as myalgic encephalitis (also ME or chronic fatigue syndrome), fibromyalgia (a disorder where pain is felt at various points in the body), repetitive strain injury and irritable bowel syndrome are comparable in that they do not have a diagnostic test, and are usually diagnosed by a process of exclusion. Additionally, none has a clear pathological or biochemical abnormality…”
Read rest of article here
From: DEnlander@aol.com
Letter to Editor
Daily Telegraph
London
21 Mar 2008
Sir,
Your article this week on Gene research in Myalgic Encephalomyelitis by Dr Jonathan Kerr in St George’s Hospital was a breath of fresh air in the stale atmosphere of UK government funded research. Myalgic Encephalomyelitis and Chronic Fatigue syndrome are commonly referred to as M.E. and C.F.S.
In 1955 Dr Melvin Ramsay reviewed a cohort of young doctors and nurses in the Royal Free Hospital in London and published a report relating to their massive debilitating fatigue. Over the years it has been shown to be a physical disease.
The cause is obscure, this obscurity has been masterfully used by psychiatrists to claim that the disease is a manifestation of a psychiatric condition, leading to an imagined problem. What arrogance !
The esteemed Royal Society of Medicine (RSM) plays to this theme by running a conference next month on ME / CFS. The speakers are dwelling mainly on psychiatry, rather peculiar for a Society of Medicine.
Most of the estimated 190,000 patients in the UK who suffer from this disease are appalled. A large number of them have applied for a demonstration permit outside the RSM to bring this wrongful thrust to the nation’s and RSM’s attention.
The following week, May 6th, a conference in ME / CFS will take place at Cambridge University where the latest methods of diagnosis and treatment will be defined. Dr Kerr will speak on the Genome in ME / CFS.
Dr Klimas, a noted researcher and clinician in Miami Florida, will speak on new developments and diagnostic methods and I will speak on the methods of treatment both in the UK and the USA.
As far as I know the RSM has not noted these physical aspects and has not altered its agenda in the April conference.
The government through NICE continues to waste money on proven bad methods of treatment, based on forced exercise therapy which, in a large number of cases, cause relapse.
Research on the physical basis of the disease has to be funded by private foundations, CFS Research Foundation, ME Research UK and patient money.
Surely, by now, the Government should be embarrassed.
Derek Enlander MD, M.R.C.S., L.R.C.P.
New York
Demonstration
Royal Society of Medicine | Monday 28th April 2008
Wimpole Street and Henrietta Street | 1pm to 6pm
Enquiries to organiser Gus Ryan creamcrackereduk@yahoo.co.uk
Information http://readmeukevents.wordpress.com
The 25% ME Group cannot condone the promotion of any psychosocial (CBT and/or GET) management regime as the primary intervention in cases of Myalgic Encephalomyelitis. (ME)
The existing evidence from surveys of over 3,000 patients suggests that such regimes 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 supports the inappropriate and dangerous psychosocial model of M.E.
As chairman of the 25% ME Group, I am very distressed to see any ME charity advertising, promoting and supporting the RSM April psychiatric conference on “CFS”. Furthermore I am concerned that they have not highlighted the important biomedical conferences to be held in London (Invest in ME) and Cambridge (ME Research UK), where leading researchers into Myalgic Encephalomyelitis will present new biomedical findings.
I also feel there is no justification for the CEO of AfME to be speaking at the RSM conference, as I believe it will not benefit patients with ME and implies patient-backed validity to psychiatric involvement in ME.
The 25% severe ME group once again calls for Government funding for urgent research into the biomedical underpinnings of ME. It is only by such research that the causes of – and hopefully the cure for this devastating disease will be found. There can be no compromise on this.
11/3/2008
21 Church Street
Troon
Ayrshire
KA10 6SQ
A few days ago, I wrote that AfME were censoring comments left on their YouTube video promotions for the “Ultimate Pillow Fight” campaign. AfME subsequently closed the comment facility. See Read ME UK Events
But Dr John Greensmith does it again in the Western Daily Press:
My “Pillow fight” letter in Western Daily Press (19 March 2008)
My concern is not just about this project, in particular but how we best draw attention to M.E. each year and not just in the UK.
If anyone wishes to make a comment – whatever shade of opinion – the e-mail address is wdletters@bepp.co.uk
Cheers
John
Choose suitable charity events
In the excitement engendered by a pillow fight in some of our principal cities for ME Awareness Week in May, I hope that onlookers will be aware which illness is being represented, and how devastating it is for at least 150,000 people in the UK.
At one time or another, 100 per cent of them will have been unable to lift their heads off a pillow, and many of the 25 per cent most severely affected people are still bedridden after years, even decades, while others are often housebound and more than 25,000 children have schooling disrupted due to its disabling effects.
It is incongruous that, year after year, charities representing illnesses with which sufferers have very low energy levels, such as ME, choose events to highlight their cause and raise funds which require above average levels of energy, such as cycling or rock climbing.
It may be trickier to think of something that requires only the limited energy an ME sufferer could spare (like watching paint dry!) and keep it interesting and educational for spectators, but I could start the suggestions rolling with a sponsored bed push, or show an empty football ground to indicate the number affected, or vacant desks in a classroom.
I am very concerned about any initiative which costs money to join, such as the £275 per team for the pillow fight, or for any other expenses if travelling or accommodation is involved, or the involvement of a professional PR company, before a penny piece goes towards ME research.
I don’t mean to pour cold water on any fundraising event for ME but I do think we should think about the appropriateness of any project and where the money is going to end up.
drjohngreensmith@mefreeforall.org
Dr John H Greensmith
ME Free For All
Read rest of item on Read ME UK Events blog
Demonstration
Royal Society of Medicine | Monday 28th April 2008
Wimpole Street and Henrietta Street | 1pm to 6pm
Enquiries to organiser Gus Ryan creamcrackereduk@yahoo.co.uk
Information http://readmeukevents.wordpress.com
Read rest of item on Read ME UK Events blog
Demonstration
Royal Society of Medicine | Monday 28th April 2008
Wimpole Street and Henrietta Street | 1pm to 6pm
Enquiries to organiser Gus Ryan creamcrackereduk@yahoo.co.uk
Information http://readmeukevents.wordpress.com
