On 30th November last year, I presented a webinar on behalf of Action for M.E. called Meeting the needs of people with M.E./CFS: essential facts and practical tips, giving an introduction to M.E./CFS for health professionals. We have now received the feedback surveys.
The webinar was attended by GPs, pharmacists, nurses, physios, OTs, dental nurses and clinical psychologists.
Some excerpts from the feedback:
“All health professionals would benefit from hearing Emily’s talk. She provided me with an excellent insight into ME/CFS which has made me think about the ways I will change my practice to better support this patient group.”
“Excellent webinar debunking ME myths and providing practical advice on early management and signposting to support groups”
“I found this webinar very helpful not only in terms of information and resources but also gaining a deeper understanding of the impact on people who live with this condition”
The webinar is now available to view online with the accompanying slides:
All of the respondents said the webinar was good, very good or excellent, and all would recommend it to a colleague. The majority of respondents commented that it was especially useful that the webinar was by someone with personal experience, relating the evidence-based information and guidelines to real life. They also valued being able to interact with me and ask me personal questions. Hopefully this means I got the balance right between evidence and anecdote. It seems that being a pharmacist gave it some credibility but that also being a patient made them understand the impact of the illness.
A couple of respondents commented that they appreciated me not attacking or criticising health professionals and the NHS, so I got across that I understand the challenges they face whilst still letting them know they need to acknowledge that some of us have been badly treated and that we need compassion.
What did attendees say they had learned?
On the feedback form, attendees were asked what they had learned, and perhaps these are also things they hadn’t realised before:
- that children can have M.E./CFS
- how severe the illness can be
- problems of misdiagnosis
- the importance of early detection and the impact of taking too long to reach a diagnosis
- that Graded Exercise Therapy isn’t for everyone
- not to recommend exercise
- the importance of empathy and understanding the difficulties we experience
- ways to alter the consultation environment to make it comfortable (e.g. dim lighting, quiet)
- the impact on daily living
- how useful Action for M.E.’s website and other resources are
- red flags for further investigation e.g. new or changing symptoms
- to prioritise treatment of pain and sleep difficulties
- to avoid polypharmacy
What changes will attendees make to their practice?
Attendees were also asked to state the changes they will make to their practice, and here are some of the answers:
- Offer Skype GP surgery appointments
- Use Action for M.E. to signpost to information
- Will try to identify M.E./CFS earlier
- Be more lenient regarding appointments not being attended (e.g. not as simple as 3 strikes and you’re struck off the practice’s register)
- Think about reducing sensory inputs in consultations
- Offer patients ways to get involved with research
- Provide longer consultations to allow for brain-fog
- Give M.E./CFS patients the appointments at the end of surgery when it’s less busy
- Share information with colleagues