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Meeting at the House of Lords with representatives from the Royal College of General Practitioners t

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jun 16, 2017.

  1. charles shepherd

    charles shepherd Senior Member

    Meeting at the House of Lords with representatives from the Royal College of General Practitioners to discuss ME/CFS

    Dr Charles Shepherd will be at a meeting with representatives from the Royal College of General Practitioners (RCGP) on Thursday morning (23rd June) at the House of Lords

    The meeting has been arranged by the Countess of Mar to discuss all aspects of ME/CFS that are relevant to primary care - the importance of early and accurate diagnosis and sensible advice on management in particular

    There will be a presentations from Professor Kamila Hawthorne and Fiona Erasmus followed by questions and discussion

    Professor Kamila Hawthorne:
    Fiona Erasmus:

    If anyone has any points in addition to the above re early diagnosis and good management, or examples of good/bad management in general practice that would be useful to raise at this meeting, please forward them to the MEA via our administrative address, or leave a meessage on the MEA website or MEA Facebook page

    MEA information on Early and Accurate Diagnosis - this is a free to download leaflet:

    Information from two recent MEA monthly surveys on the time taken for a diagnosis of ME/CFS to be made and how people rate GP management of their ME/CFS

    • MEA website survey:

      How long did it take from the onset of your ME/CFS symptoms to a doctor confirming a diagnosis of ME/CFS?
      • Less than 3 months (4%, 26 Votes)

      • 4 to 6 months (14%, 91 Votes)

      • 7 to 12 months (15%, 96 Votes)

      • 13 to 24 months (17%, 111 Votes)

      • 2 to 5 years (26%, 172 Votes)

      • 6 to 10 years (8%, 55 Votes)

      • Over 10 years (11%, 70 Votes)

      • Not certain (2%, 10 Votes)

      • Never confirmed by a doctor (3%, 25 Votes)

        Total Voters: 656
    Start Date: February 1, 2016 @ 10:26 am
    End Date: March 10, 2016 @ 9:39 pm

    • MEA website survey

      How do you rate the management of your ME/CFS that is provided by your usual NHS GP?
      • Excellent (4%, 19 Votes)

      • Good (9%, 44 Votes)

      • Fair (7%, 33 Votes)

      • Mixed - good and bad (16%, 77 Votes)

      • Poor (23%, 114 Votes)

      • Dreadful (23%, 114 Votes)

      • I don't have a GP (0%, 0 Votes)

      • I have no contact with my GP re: ME/CFS (18%, 87 Votes)

        Total Voters: 488
    Start Date: January 4, 2016 @ 9:23 am
    End Date: March 10, 2016 @ 9:38 pm

    MEA administration:

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    erin, SamanthaJ, Valentijn and 6 others like this.
  2. Webdog

    Webdog Senior Member

    Would be interesting to have an option for "Over 20 years".
    GreyOwl and Mel9 like this.
  3. NelliePledge

    NelliePledge plodder

    @charles shepherd highlighting that ME/CFS should not be dealt with as Medically Unexplained Symptoms
  4. charles shepherd

    charles shepherd Senior Member

    Thanks - yes, MUS is already on my RCGP list for Thursday

    It is also something that the Forward ME Group are dealing with at a parliamentary level

    MEMum, Countrygirl, Londinium and 7 others like this.
  5. charles shepherd

    charles shepherd Senior Member

  6. charles shepherd

    charles shepherd Senior Member

    Brief update on the meeting with representatives from the Royal College of General Practitioners (RCGP) 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, on-line learning modules etc and coverage of ME/CFS in GP examinations - both theory and clinical skills assessments

    • The importance of making and 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 (eg irritable bowel symptoms) and conditions with symptoms that overlap with ME/CFS (eg 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
  7. Keela Too

    Keela Too Sally Burch

    Very interesting @charles shepherd Thank you.

    I wonder too when the issue of the Science Media Centre and it's undue influence on media reporting on ME issues can be tackled.

    The biases created by these public proclamations of exercise helping ME must surely be regarded as a form of patient abuse. As we know ME patients cannot increase their exercise, so claiming that they can (and should) is basically psychiatric abuse.

    We have all heard the stories of how families and friends read these stories and then lambaste their ME loved ones for not just exercising more... And medical professionals are not immune to these stories either. :(
    Valentijn, Cheshire, MeSci and 11 others like this.
  8. charles shepherd

    charles shepherd Senior Member


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