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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Take part in our Severe M.E. Symposium from home

Discussion in 'Upcoming ME/CFS Events' started by Action for M.E., Oct 30, 2014.

  1. Action for M.E.

    Action for M.E.

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    This is already posted on the Calendar of M.E./CFS events, but I hope you don't mind me highlighting it here as well - we're hoping to involve as many people affected by M.E. as possible.

    Bookings have closed now for our Severe M.E. Symposium in London on 14 November - but you can take part from wherever you are. We are setting up some easy-to-use software so you can:
    • watch live from home via Livestream (registering takes just a few minutes)
    • take part in a 'virtual' table discussion (we're asking people to apply to do this by Monday)
    • contribute to discussions in advance by considering our discussion question (key points will be included in feedback on the day).
    Information about how to do this is on our Online M.E. Centre. Really hope you can join us.
     
    Amused, JAM and catly like this.
  2. Sasha

    Sasha Fine, thank you

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    As the person who started the calendar, I can confidently state that you're doing exactly the right thing! The purpose of the calendar is to give a short listing - date, event title, event location, weblink - with the weblink linking to a full description of the event either here on the forum or elsewhere.
     
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  3. Revel

    Revel Senior Member

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    I so much want to take part in this, but each time I attempt to compose an email to contribute my views in a constructive manner, it turns into an angry rant!

    What I want more than anything is societal recognition of my illness.

    It took nearly 20 years for my initial diagnosis. However, 6 months later my GP (who was considered by other practice staff to be a little 'out there') left, along with my diagnosis. It was expunged from my records.

    It took a further 20 years of hell to get it reinstated 2 years ago - only once I had been unable to work for over a year, unable to drive, manage stairs, weighed under 90lbs, etc. Even then, my current GP made it clear to me that he did not believe there was such an illness as ME/CFS. Lucky for me, I also now have POTS and my consultant wrote to my GP confirming the dual diagnosis, which he now grudgingly accepts.

    I am out of the catchment area for the 'local' CFS clinic (not that the treatment offered is worth diddly). If it wasn't for my POTS consultant, I would be receiving no medical help whatsoever (and even that is limited to 2-3 brief appointments per year).

    It has been my experience that most GPs are still not keen to acknowledge ME/CFS, preferring instead to clutch onto a mental health label such as depression, anxiety or social phobia. They may read the educational pamphlets and hang the posters on the wall, but do they actually 'get it'? I am nowhere near convinced.

    You want to know what will make my life better? At the risk of repeating myself, RECOGNITION!!

    So, how do I put this forward without the frustration that I feel spilling over into every line?
     
  4. CantThink

    CantThink Senior Member

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    I think you put it pretty well in your post right there! Why don't you just email that?

    There's nothing wrong with being frustrated - the situation is frustrating. Whether this is the right charity to help... I don't know. What research have they put money into for sufferers' benefit? What do they currently do for severe M.E. sufferers? I don't know the answers... I would want to know that some other info about who heads the charity and how it's run before participating.
     
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  5. Min

    Min Guest

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    me too, I find it too difficult to get beyond Action for ME's participation in the PACE Trial. particularly their advice that led to the only objective form of measurement being dropped. PACE is keeping treament fo myalgic encephalomyelitis in the UK in the stone age.
     
  6. Snowdrop

    Snowdrop Rebel without a biscuit

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    Then maybe together we can suggest that any and all advocacy agencies for ME drop any positive reference to CBT/GET as it is NOT treating any symptoms of ME. If someone with ME is truly not coping well and has no-one to talk to about it they can be offered the option of CBT through their GP/PCP who has been properly taught that the ME is biological and is not what is amenable to CBT.
     
  7. Revel

    Revel Senior Member

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    @CantThink, I know very little about the workings of Action for M.E. For this symposium, they are encouraging UK sufferers to give their opinion on the current situation regarding treatment and ongoing support and how we want it to change.

    What made me want to participate is that the article seems to assume that we are all receiving SOME care at the very least, and our views on how improvements can be made are requested.

    I know that I am not alone in stating that I have never received ANY care or support from the NHS for this condition, and what scant help that is available to some has been proven to be useless. This may not be what they want or expect to hear but it needs to be said.

    Any platform that gives us a voice is better than nothing.
     
  8. CantThink

    CantThink Senior Member

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    I knew there was some reason for my suspicion. Thanks for clarifying.
     
    Sleepyblondie and Min like this.
  9. CantThink

    CantThink Senior Member

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    This seems a really good idea and solution.
     
    shahida, Sleepyblondie and Min like this.
  10. CantThink

    CantThink Senior Member

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    @Revel

    I agree, however, my concern is that they (the charity) may, or have been, involved in creating the position in which find ourselves - as Min pointed out. I guess I am not very trusting of them or of how information and views I may express to them might be used or misinterpreted.
     
  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    I'm not sure how it works to actually post. Is someone familiar with the AfME site?
     
  12. CantThink

    CantThink Senior Member

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    I don't know either. When I clicked the link they had on that page to go to their discussion forum (under the bit saying to email your opinion) my computer tells me that AFME might be trying to steal my information :wide-eyed: - i don't know why it's coming up with that warning page blocking me!
     
    Sleepyblondie likes this.
  13. Snowdrop

    Snowdrop Rebel without a biscuit

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    :eek: That doesn't sound good.
     
  14. CantThink

    CantThink Senior Member

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    I've looked into it more - says Security Certificate is invalid and my connection is not private. I have given up lol :whistle:
     
  15. Scarecrow

    Scarecrow Annie Gsampel

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    I totally understand where you're coming from but all the more reason to have your say. There's to be a research presentation by George Leweth and Clare McDermott. Don't know if the presentation is on past or future research but remember this thread?

    http://forums.phoenixrising.me/inde...-for-individuals-with-severe-cfs-me-uk.32205/

    I'm really concerned about this study or to put it another way: NLP for ME - wtf? Questions need to be asked about this.

    I'm not severely affected so can't gate crash the party.

    @Revel, @Snowdrop, @CantThink, @Min. It would great if some of you applied to take part in the virtual table discussions. Putting concerns about the NLP thing aside, it looks like a very worthwhile event, if a bit long.
     
  16. Revel

    Revel Senior Member

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    @CantThink, if AfME have helped to put me and many others in the position we find ourselves in shouldn't we be piping up about it?

    However they may choose to misuse or misinterpret my views it can't possibly make the situation any worse.

    Unless we are prepared to challenge the current state of affairs nothing will change.
     
  17. CantThink

    CantThink Senior Member

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    @Scarecrow

    From the thread you posted

    I'm choking on my own saliva. NLP?! mind-body??? I concur with your concern.

    I'll think about applying for that table - as I am due an operation around then so should probably be resting when that takes place.
     
  18. Min

    Min Guest

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    Are you serious AfME? You really think the severely affected will somehow be helped by scientists who push NLP?

    Many of us were pushed into severe disability by graded exercise. The last thing we need is yet more psychobabble.
     
  19. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    AfME is one of the largest ME charities in England. They invited us so must want our perspective. And seem seems open enough to getting input from people with various perspectives.

    The format for the roundtable event seems a bit long for people with more severe ME, but I agree that it seems worthwhile to participate.
     
    Last edited: Nov 4, 2014
  20. Esther12

    Esther12 Senior Member

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    The NLP thing is pretty worrying.
     
    mango, shahida, Sleepyblondie and 8 others like this.

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