Russell Fleming, Content Manager, ME Association.
This is a very well attended event with GPs from across the country travelling to Liverpool for the three-day conference (24-26 October).
Dr Charles Shepherd and Ewan Dale, Trustees of the ME Association, will be attending with other members from Forward ME helping to raise awareness of the issues faced by people in this community.
Last year, Dr Shepherd and other M.E. experts gave a lecture to a packed audience of GPs and we had a stall. This year we couldn't get the lecture, but the stall is doing excellent ‘trade' and attracting a lot of interest.
One of the first GPs to visit said, “A patient rang up my receptionist and the first thing she asked was “Does the new doctor believe in M.E.?”, I didn't realise how little understanding there is of the condition.”
A returning GP commented, “I saw you at last year's conference and the information you gave me has changed the way I work with people with M.E.”
Copies of the ME Association Clinical and Research Guide are being distributed, along with the Forward ME Briefing (download opposite).
We are also conducting a case study quiz which is based around diagnosis with a prize being offered for the most correct answers.
And our thanks and congratulations go to medical student, Emilia Allwright, who is supervised by Dr Nina Muirhead, and produced a poster presentation of her research (see below).
Emilia and Nina created the initial ME Association website survey that gathered over 600 responses back in January and followed-up your valuable feedback with interviews.
We’ll keep you informed of any further developments from the conference as we hear them via our social media platforms or with updates to this blog.
“Understanding the role of the general practitioner in caring for patients with ME/CFS in the community.”
By Emilia Allwright and Dr Nina Muirhead.
Establish a general understanding of the current awareness and knowledge of ME/CFS based on recent scientific research and publications
Recognise the importance of the patient voice in ME/CFS management via qualitative and quantitative information gathered from patient volunteers in the community including information obtained by telephone interviews and an online questionnaire.
Identify factors that patients view as important to their management in primary care.
Both the online question and free text feedback emphasised that patients prioritised an understanding of the symptoms of ME/CFS in order to make a diagnosis and to appreciate the impact of the condition on patients.
The interviews discussed wider aspects of the relationship between GPs and patient with ME/CFS. Participants suggested having a single healthcare practitioner to offer consistent care and develop an understanding of the patient and their history.
GPs who were willing to learn more about ME/CFS and engage with the patient to better their own understanding of ME/CFS were held in high regard by participants. All but one participant had experience feeling dismissed by a GP and some participants, who had not developed positive relationships with GP, questioned the level of respect demonstrated by a GP.
“They just need to be honest and kind and respectful and together we’ll figure out what the best way forward is.”
|“He’s just been sympathetic to what I’m going through which is a big thing.”|
|“And I just found it too upsetting to keep going because nothing was happening.”|
Participants described mutually beneficial relationships with GPs through working together but also instances where relationships had been less constructive or had broken down.
Overall, online feedback and semi-structures interviews emphasised the perception that a supportive GP who is honest and open with patients can make a significant impact, regardless of their ability to cure the patient.
In a future study, the patient perspective could be supported with parallel information gathering from GPs on their experiences to create a more thorough analysis of ME/CFS care in the community from a dual perspective.
I would like to thank Dr Liz Forty and all the patients who took their valuable time and energy to respond to the questionnaire or be involved with the interviews. Thank you to Jan Russell and WAMES and the ME Association for their help publicising this study.
The ME Association
Real People. Real Disease. Real M.E.
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.
ME Association Registered Charity Number 801279