Telling GPs the truth about ME
A short, sharp campaign to put the known medical facts about this illness into the hands of GPs and so help to dispel some of the prevailing medical myths and fantasies.
May 2013 - August 2013
Many GPs are uninformed about ME/CFS or still dismiss it as a non-existent illness or believe that it is a psychological illness that can be treated using psychological methods, which it is not. This continuing lack of knowledge and these misguided beliefs, and the use of psychological treatments which fail to restore the health of those affected, frequently result in a breakdown of trust between patients and their doctors and leave ME/CFS sufferers feeling very misunderstood.
– By issuing guidance to GP surgeries round the UK.
– By harnessing the available energy of patients who will identify surgeries that need assistance in understanding modern medical practice regarding this illness.
– By running a media campaign on the issue – not ‘naming and shaming’ because that will be counter-productive but in a spirit of collaboration and support.
To advise GPs that there is a viable alternative to psychologicalising this illness.
Activities» Inviting patients to tell us which surgeries require attention.
» Issuing our clinical guidance booklet to these surgeries, with a covering letter.
Success will be measured through patient feedback by email and on a dedicated Facebook page.
To help patients obtain the recognition that this illness is primarily physical in nature.
Activities» Asking patients to speak up for the booklet with practice managers and their GPs, and send postcards.
» Running a local and regional media campaign and placing messages in the medical press.
In addition to the above, success will measured by the amount of positive feedback we receive from the doctors themselves.
To raise awareness of M.E. and the ME Association in the medical profession.
Activities» Delivering MEA messages to 1,500 of 10,000 surgeries that sufferers say need the most attention. In future years, we will find funds to do the rest.
Success will be measured by the feedback we receive from the profession in the aftermath of the campaign.
The project will help build up the level of inquiries from doctors themselves – a development that existing systems are well able to handle. It will also widen interest shown in the work of the Association by both its members and other people with the illness – something that is crucial to our membership recruitment strategy. An increase in membership inquiries in mid-2013 will demonstrate success.
The main risk is that practice managers and GPs will simply bin our booklet, or let it gather dust on a shelf. Involvement in the campaign by some of their more vocal patients when the booklet is being posted out, or hand-delivered, will reduce this risk.
There is a risk that this will be written up as a ‘naming and shaming’ exercise by the media. This would be counter-productive. Pro-active media work will reduce this risk.
Use of our quarterly magazine, website and social media – with letters, as appropriate.
Budget - Project Cost: £7,500Loading graph....
Amount Heading Description £4,000 Printing Printing booklet and postcards. £500 Editorial work Revising and editing booklet. £500 Database Acquisition of up-to-date mailing list. £2,500 Distribution Mailing house services
UK-wide, with target medical practices being identified in the main by people with the illness and their carers - on a 'first come, first served' basis to 1,500 surgeries initially. If the appeal exceeds target, more surgeries will be targeted. The project will be managed by existing staff who either work at head office or are home-based.
– GPs, who will have access to clinical guidance written by two of the most experienced ME/CFS medical practitioners in the UK: Dr Charles Shepherd, medical adviser to the ME Association, and Dr Abhijit Chaudhuri, consultant neurologist at the Essex Neurosciences Centre. The booklet has already been used by the NHS as a source for the 'Scottish Good Practice Statement on ME/CFS'.
– Their patients, who will feel more confident their real medical needs are being addressed when they see their GPs.
The ME Association, the country’s longest-established ME/CFS charity, is the only national M.E. charity in the UK that had medical expertise and advice on tap almost every day of the year. We have systems in place that will enable us to handle the extra volume of work incurred by this project.
We are already widely respected for our consistency in promoting the biomedical model of M.E. when funding research into the physical nature of the illness.
Read more about the Charity running this project.
Tony, our publicity manager, is an ex-journalist with 20 years experience in the charity sector. He will be project manager.
Gill, our operations manager, will co-ordinate additional work in the office.
Dr Charles Shepherd
Charles, our honorary medical adviser, will be on hand to answer medical inquiries and do media interviews.
Maya, our fundraiser, will handle incoming inquiries during the Christmas Challenge donations phase in December.