Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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ME Awareness Week Events 2016 (UK)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, May 4, 2016.

  1. charles shepherd

    charles shepherd Senior Member

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    ME AWARENESS WEEK EVENTS

    Current list of events taking place during and around ME Awareness Week here in the UK:

    http://www.meassociation.org.uk/mea-events/

    We will be regularly updating this list - so please let us know if there is a meeting you are aware of that is not on the list

    In addition there will be a 'drop in' meeting of the All Party Parliamentary Group on ME at Westminster where we will be answering questions and trying to recruit new members for the APPG. NB: This meeting is not open to the public.

    The main ME Association initiative this year is the launch of our Early and Accurate Diagnosis campaign with new literature for both patients (already inserted into May ME Essential magazine which is now available) and health professionals, as well as an on-line CPD learning module (in preparation) for doctors and other health professionals

    MEA literature list, including the Early and Accurate Diagnosis leaflet:

    http://www.meassociation.org.uk/wp-content/uploads/MEA-Order-Form-May-2016.pdf


    Public meeting in Sussex on Saturday 14th May - Presentation on ME/CFS Research from Dr Amolak Bansal and '10 Key Aspects of Management' from Dr Charles Shepherd. More info here:

    The Sheldrake Suite, The Martlets Hall, Civic Way, Burgess Hill, West Sussex RH15 9NN, 2pm
    reMEmber meeting. Guest speakers: consultant immunologist Dr Amolak Bansal, who is clinical lead of the ME/CFS service at St Helier Hospital, Carshalton, and MEA medical adviser, Dr Charles Shepherd. Entry by ticket costing £3, including refreshments. Please send SAE with your cheque (made payable to reMEmber) to: reMEmber, PO Box 1647, Hassocks BN6 9GQ.
     
  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Thanks for posting this Dr Shepherd, 'Forgotten Plague' is an excellent film on CFS, is very well produced and can found on Amazon video to 'keep'.

    I hope one day we can have a painless mitochondrial test that doesn't involve cutting bits out of our muscles, and is specific to the disease, such as an abnormal level of 'X' allied to a gene defect known only to occur in the disease.

    Maybe someone can kindly briefly report back to us what is said at the talk in Oxford by Dr Morten.
     
  3. Skippa

    Skippa Anti-BS

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    Hmmm, I'm tempted to pootle up and take a looksie...

    We should have PR badges or t-shirts... Otherwise, I'll be the one wearing the red carnation.

    Seriously though, I have so many ideas like this about joining in... Then when the time comes I'm either crashing or simply pussy out!
     
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  4. charles shepherd

    charles shepherd Senior Member

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    We are trying to get people to register in advance if they are coming to the JR Hospital meeting - partly because we are doing free drinks and nibbles afterwards and it's helpful to have a rough idea about how many people will be there!

    But there's no compulsion - just turn up on the day if you are able to do so…….

    And leave when you want - as it will be a fairly long evening

    We are having questions, discussion on the film, muscle research (I worked with Prof George Radda at the MRS unit at the old JRH in Oxford in the early 1980s using my own skeletal (leg) muscle. And we were the first group to demonstrate objective abnormalities in muscle energy function/bioenergetics - published in The Lancet back in 1984) and anything else that people want to talk about up till about 9pm.
     
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  5. charles shepherd

    charles shepherd Senior Member

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    1 There should be a report on the presentation from Dr Karl Morten - whom we are now funding to carry out further research into mitochondrial dysfunction in ME/CFS

    2 Forgotten Plague is OFFICIALLY AVAILABLE FOR VIEWING on iTunes, Amazon Instant Video, and Google Play.

    You are able to buy or rent the film using these digital platforms. Please help us share this great news with the world!

    As Judge Louis Brandeis said, "Sunlight is the best disinfectant." Let's use this film to keep shining a light on this disease and to bring forth new solutions!

    And if you've seen the film or have your story to tell, please write positive reviews via the Amazon site, to help direct others to the film. Concentrating our voices via Amazon is an amazing way to make a permanent cache of ME/CFS stories in a prominent place for the world to see!

    Amazon Link: http://www.amazon.com/Forgotten-Pla...d=1453486157&sr=1-1&keywords=Forgotten Plague

    Google Play Link: https://play.google.com/store/movies/details/Forgotten_Plague?id=4dlRmEEAseI&hl=en
     
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  6. Skippa

    Skippa Anti-BS

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    Hmmm, seriously tempted now to go meet the great Dr Shepherd. I'll have to see how crashed I get 'cos the sun is shining full throttle and ME/CFS be damned I'm getting the BBQ out!

    Haven't been to JRH since my school buddy died there coming on 20 years ago. :(
     
  7. Skippa

    Skippa Anti-BS

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    @charles shepherd can you recommend a cheap holiday inn etc nearby? (Might as well get a fry up in the morning if I do go).
     
  8. charles shepherd

    charles shepherd Senior Member

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    Decent Oxford hotels are expensive (or very expensive!)

    But if you are coming by car and want to stay out of town to the North of Oxford (where JRH is) you could try the hotels that are around the Pear Tree Roundabout. Jurys Inn is supposed to be OK: https://www.jurysinns.com/hotels/oxford/map

    Some of the Oxford Colleges are now open for vacation stays - if you want to stay in the centre.

    This is what I am doing.

    College rooms website: http://www.universityrooms.com/en/city/oxford/home
     
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  9. charles shepherd

    charles shepherd Senior Member

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  10. charles shepherd

    charles shepherd Senior Member

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    John Radcliffe Hospital site map for anyone who is coming to the film tomorrow:

    http://www.ouh.nhs.uk/hospitals/jr/documents/jr-hospital-sitemap.pdf
     
    Sasha likes this.
  11. Sasha

    Sasha Fine, thank you

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    Any plans to record and put the talk online? So frustrating not to be able to go to these things!

    Either way, all the best for the event. I hope lots of useful Oxford people see the film.
     
  12. charles shepherd

    charles shepherd Senior Member

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    ME/CFS RESEARCH AND MANAGEMENT MEETING IN SUSSEX ON SATURDAY 14th MAY

    Presentations: Dr Amolak Bansal (Research) and Dr Charles Shepherd (Management)

    Thanks to everyone who came to this 3 hour + meeting in Sussex on Saturday afternoon that was organised by ReMEmber - there was hardly a spare seat left once we started!

    I'm going to prepare a summary of key points on both research and management - especially relating to the way in which some of the current research findings on infection, immune system dysfunction, muscle etc link in to practical patient management, including the role of stress, activity management and drugs which may affect the underlying disease process (e.g. antivirals, steroids and rituximab)

    The meeting also had an excellent patient interaction section on what people want to include in a hospital based referral service in Sussex - the key results will be included in the summary

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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