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Royal Society of Medicine Demonstration

28 April 2008

Additional information and updates on this demo will be posted at:

http://readmeukevents.wordpress.com

On 28 April the Royal Society of Medicine is holding a conference on "Chronic fatigue syndrome" for members of the RSM and health care professionals. Go to http://www.rsm.ac.uk/academ/cfs.php for Registration information, Speakers and Conference Session details.

The RSM says:

"The aim of the meeting is to take a broad look at chronic fatigue syndrome, examining its nature and definition, pathophysiology, epidemiology, clinical assessment and diagnosis, the patient perspective, and various approaches to treatment. This is a scientific conference and there will be an emphasis on an evidence-based approach throughout."

The final programme says:

“Chronic fatigue syndrome is a common and debilitating illness which can persist for years. Despite extensive research, the nature and pathogenesis of the condition remain enigmatic. There is continuing uncertainty and controversy concerning the physical and psychological components that may contribute to the initiation and perpetuation of the symptoms of chronic fatigue syndrome.

“Those attending the meeting will gain understanding of the various aspects of CFS being discussed, and be better able to help people suffering from this disabling condition. The conference is intended for all health professionals who are involved in the assessment and treatment of those with CFS.”

Here's the line-up of speakers:

. Professor Peter White, Barts and the London Queen Mary School of Medicine and Dentistry (What is CFS?)

. Dr Anthony Cleare, Institute of Psychiatry, London (Pathophysiology)

. Professor Simon Wessely, King's College London (Epidemiology)

. Professor Chris Dowrick, Liverpool (Physician's approach)

. Professor Matthew Hotopf, Institute of Psychiatry, London (Psychiatrist's approach)

. Professor Richard Baker, Leicester University (NICE Guidelines)

. Professor Rona Moss-Morris, University of Southampton (CBT and GET)

. Dr Alastair Miller, Royal Liverpool University Hospital (What drugs can I use?)

and Session chairmen:

. Dr John Scadding, from the Royal Society of Medicine

. Professor Anthony Pinching, Peninsula Medical School, Cornwall

. Professor Mansel Aylward, Unum Provident Centre for Disability, Cardiff University

. Professor Kam Bhui, Department of Psychiatry, Queen Mary School of Medicine and Dentistry

... more psychs than you can shake a stick at.

A peaceful demonstration will be held on the afternoon of 28 April outside the Royal Society of Medicine.

London based event organiser, Gus Ryan writes:

"After notifying the Met Police, we have been given the go ahead for a demonstration outside the Royal Society of Medicine on Monday 28th April 2008. This will coincide with a meeting about “Chronic Fatigue Syndrome”. The meeting will be heavily attended by prominent people in the field of mental health.

"The demonstration will be static and will take place at the two entrances to the RSM, Wimpole Street and Henrietta Street between 1pm and 6pm. Go to http://tinyurl.com/2frjzm for Location map.

"A presentation, yet to be decided on, may take place at some point during the day and banners/placards will be allowed. Flyers/handouts will also be allowed.

"I have promised my liaison officer at the Met that we will be on our best behaviour and I trust that the day will pass peacefully.

"As organiser, I am in the process of appointing two stewards - one for each entrance - and will be overseeing the events for the day."

Enquiries should be directed to Gus Ryan creamcrackereduk(at)yahoo.co.uk

Launch video at http://tinyurl.com/3xaas4 or http://uk.youtube.com/watch?v=IBRC9SzmKNk

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

Suzy Chapman

http://readmeukevents.wordpress.com

On a postcard, please ...

The "On a Post Card, please" Campaign Flyer is now available at:

readmeukevents.wordpress.com

as a Read Only Word doc

Please note that the "On a Post Card, please" Campaign and the "Squeeze" graphic are initiatives independent of the RSM demonstration being organised by Gus Ryan.

All enquiries about the Post Card Campaign and Read ME UK Events site should be addressed to Suzy Chapman.

A copy of the Flyer can also be forwarded on request in electronic format (Word doc).

Suzy Chapman

me.agenda@virgin.net

readmeukevents.wordpress.com

meagenda.wordpress.com

Campaigning for Research into ME (RiME)

RiME Referendum: Latest

The above has been prepared and is ready to go to all 646 MPs. The top part of the page presents a few facts about ME and the current state of biomedical research in the UK. Then, lower down the page, MPs are invited to declare whether or not they think the British Government should be funding research into the underlying physical causes and disease process of ME.

In order to save on postage, the letters were going to be hand delivered to the House of Commons. However, shortly before Easter I learned that there would be a handling charge of 24p on each letter - meaning a total cost of around £160.

Having reflected on the matter, I have decided I will probably post the letters and, accordingly, put out a stamp appeal. I feel the best way of doing this is to ask people to pledge x number of 2nd Class stamps via email. If the greater number of stamps are pledged, I will then ask for the stamps in and the project will proceed.

Please help.

Best Wishes

Paul Davis

10 Carters Hill Close

Mottingham

London SE9 4RS

rimexx@tiscali.co.uk

www.erythos.com/RiME

NB I have considered doing this over the internet but decided against (1) I think one is likely to get a better response doing it through the post (2) I don't think it would mean any less work; it would involve keying in (and then deleting) 646 email addresses; I don't have a secretary to help.

ME Free For All.org supports this great initiative from RiME and suggests that you follow our example of putting as many 2nd class stamps as you can afford in an envelope and sending them to Paul. We are sure that he will achieve the target but he is always able to use stamps wisely, so be generous.

Benefits Petition

petitions.pm.gov.uk/DLA-genuine/

"We the undersigned petition the Prime Minister to protect & help people recieving DLA who are having to reapply due to Government changes in how this benefit is allocated."

"People who are genuinely chronically ill/disabled & have been recieving DLA/SDA are having to do battle with their local DHS/GP's etc to reapply/appeal to have their allowances re-instated.This is causing untold stress, distress & adding to their illnessess & no doubt will cause ultimately some poor souls death.
HOW DOES THE GOVERMENT INTEND TO LOOK AFTER THESE VULNERABLE PEOPLE IN OUR SOCIETY?"

The Right Payment Programme (RPP)

The Right Payment Programme (RPP) is a new system for checking that your disability living allowance (DLA) claim is correct. It was introduced in May 2007 without prior consultation and with no publicity to replace the Periodic Review (PR) ... Read more at Ron's Realm.

Sick note petition

"We the undersigned petition the Prime Minister to carry on allowing all GPs to issue sick notes to patients and not alter legislation concerning GP's issuing sick notes themselves."

Click to sign petition.

More details from Dawn Allen the petition creator:

"The administration is seeking to cut the number of people claiming Incapacity Benefit but penalising poorly people in need of a sick note is not ethical. Making sick people have to mess around even more is counterproductive. GPs have not complained about issuing sick notes all these years, they are professionally trained, well paid, and should be able to deal with this. I see no reason to change what is a decent scheme."

Traumatic Hospital Treatment of a patient with M.E.

Read about the treatment of one severe M.E. sufferer, in a locked psychiatric unit, in an open letter from Catherine Ashenfelter of The Grace Charity for M.E.

A Lobby of the APPG: A need of Accountability and a Firm Resolution

Following the events of the APPG meeting of July 12th and the official minutes that followed, it has become clear that there is a high amount of dissatisfaction with or objection to the approaches of the majority of the NHS 'Chronic Fatique Syndrome / Myalgic Encephalopathy (CFS/ME)' clinics amongst the CFS/ME community, and that this fact was not properly recognised at the APPG meeting for a number of reasons ........ For more details and how to become a co-signatory, click A Lobby of the APPG.

Petition- M.E. is Real

Thanks to Jill Pigott of the Worcestershire M.E. Support Group for reminding us of the importance of signing this petition, created by Konstanze Allsopp, before the deadline of 22 January 2008. Please go to petitions.pm.gov.uk/ME-is-real/. We the undersigned petition the Prime Minister to get the Health Service and medical profession to accept the WHO classification of ME/CFS as an organic neurological disorder and not as a psychosocial syndrome.

Saying "No" can be positive.

Catherine Ashenfelter of The Grace Charity For M.E. would like you to complete this survey about any treatments that may have been helpful, or that may have had any bad side effects. While there, you are invited to download a useful document, "Saying No can be positive", warning against Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET).

Click here to fund research

Von Jones from ME Chat reminds us how much we can raise for M.E. research funds by using the search engine Everyclick. So far £2146.84 has been raised for ME Research UK (biomedical research into ME) just from clicking. Everyclick is a search engine (like Google) but gives 50% of its profits to charities according to the number of clicks the charity supporters make. As Everyclick becomes more well known, MERUK is competing with more charities for the available funds so needs as many supporters as possible. If you haven’t joined already, please go to www.everyclick.com/uk/meresearchuk. Make it your home page so your clicks will benefit ME Research UK, click on the icon to become a supporter and do some clicks each day. It will say at the top 'Your selected charity is ME Research UK ' and if you click on the charity name it will show you the total number of clicks, number of supporters and amount raised so far. Please spread the word among all your friends and relations. Von says: "I made it my signature on every e-mail because some friends said they needed reminding, and I make Everyclick my first port of call for searches and also click daily on the various news headlines. The average number of clicks per supporter per day is less than 2 so just 2 extra clicks would make a big difference."

The M.E. Letter Project

The ME letter project plans to write a letter on behalf of everyone suffering from ME. A copy of this letter will then be sent from every suffer, their family and carers to the government to show how many people suffer from this condition and to tell them that we need research into the physical causes ..... Read on and join in here www.meletterproject.com

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