‘Very helpful and constructive meeting’ with RCGP representatives at House of Lords | 24 June 2017

This is a brief update from MEA medical adviser, Dr Charles Shepherd, who was one of the charity representatives meeting with members of the Royal College of General Practitioners. The meeting had been organised by the Countess of Mar and was an initiative of the Forward ME Group. It took place at the House of Lords on Thursday, 22 June, 2017.

“Firstly, could I thank everyone who posted feedback on social media, or sent in emails to the MEA, regarding what they wanted to see discussed at this important meeting.”

“This follows on from a previous meeting on medical education with Professor Ian Curran from the General Medical Council.”

“We had a very helpful and constructive meeting with two very senior representatives from the RCGP on Thursday this week.”

“The presentations and discussion session covered a wide range of topics relating to education, clinical assessment, diagnosis and management of ME/CFS.”

“This was followed up by agreeing a number of action points relating to improving the continuing professional development and education of GPs about the diagnosis and all aspects of management ME/CFS.”

“Detailed Minutes for the meeting are being prepared – so I will just produce a bullet point list of topics that were discussed on Thursday:

  • Evidence from MEA website surveys covering GP knowledge and understanding of ME/CFS and the time taken/long delays for people to get a firm diagnosis of ME/CFS
  • The problems facing GPs in relation to consultation time and not being able to be experts in every condition they deal with
  • ME/CFS is not ‘all in the mind’ and is not a psychiatric illness – including historical reasons behind this inaccurate labelling
  • Specific issues relating to children and adolescents
  • Issues relating to people with severe ME/CFS who cannot get to a GP surgery and the refusal of some GPs to make home visits to people who are housebound
  • The current state of GP education on ME/CFS from lectures, tutorials, online learning modules etc and coverage of ME/CFS in GP examinations – both theory and clinical skills assessments
  • The importance of making an early and accurate diagnosis of ME/CFS – so that appropriate management can begin as soon as possible
  • Timescale for making a diagnosis – as set out in the 2002 Chief Medical Officer’s Working Group report.  Diagnosis should be seriously considered when symptoms persist for 3 months in children and 4 months in adults and the diagnostic process should normally be completed within six months of the onset of symptoms
  • The differential diagnosis of ME/CFS and the research evidence from Newcastle indicating that a significant proportion of people are being misdiagnosed as having ME/CFS – even when they are referred to specialist referral centres
  • It is not appropriate for GPs to refuse to make a diagnosis because they do not want to label someone as having ME/CFS
  • Co-morbid conditions (e.g. irritable bowel symptoms) and conditions with symptoms that overlap with ME/CFS (e.g. post polio syndrome, which was raised by the RCGP)
  • How patients ought to be managed in primary care – activity management, symptom relief for pain etc.
  • Availability (and lack of availability) of specialist referral services throughout the UK – with particular reference to the almost complete lack of NHS referral services in Wales
  • Drug sensitivities in ME/CFS and the need for regular medication reviews, especially when several drugs are being prescribed
  • Issues surrounding good professional conduct and complaints. It was pointed out that the GMC is there to protect patients not doctors!  Patients should complain if there are good grounds to do so and they should not be removed from a GP list because they have made a complaint.
  • Controversies surrounding the PACE trial, CBT and GET and the NICE guideline on ME/CFS
“The MEA also provided copies of various key items of literature:
  • The MEA purple book
  • Early and Accurate Diagnosis leaflet
  • Summary of the report on patient evidence relating to CBT, GET and Pacing
Dr Charles Shepherd
Hon Medical Adviser, MEA

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