The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Looking for someone with Severe ME to interview for feature in The Times

Discussion in 'General ME/CFS Discussion' started by JanetME, Aug 31, 2016.

  1. JanetME

    JanetME

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    Hello All,

    This is my first post, and I'm not completely sure where to put is, so do let me know if it's in the wrong place, or if I need to change it.

    I am an ME sufferer (I became sick in 2010) and freelance journalist (published in The Guardian and Times newspapers). I have been commissioned to write a lead feature on ME for The Times, and I'm looking for someone with severe ME to interview. I did have another fellow PWME in mind, but I think they might be too sick to be interviewed at the moment.

    The interview would need to be this week (Saturday 3rd September at the latest), to link in to the 'blood signature' / Dauer news story. I realise finding someone at short notice might be a bit tricky given how unpredictable and disabling this illness is.

    The ideal interviewee would be:

    - Based in the UK, and ideally somewhere I can get to from London with relative ease (4-5hour train journey is probably my limit mobility-wise).
    - Have experienced a period of severe ME. As is always the way with these newspaper features, we are interested in speaking to someone who has had a severe form of the illness, perhaps experiencing paralysis, seizures and blackouts. My ME is mostly moderate (although it would have been life-threatening without antibiotics), and I am keen to highlight just how dangerous it is for the NHS to be dismissing this group of patients.
    - Have been let down by NHS care: e.g. admitted to an NHS ward and then discharged because there was nothing the doctors could do.
    - Under 30 and female/ non-binary This is because I will be talking about the ways in which doctors dismiss certain groups of patients with ME, especially young women, as hysterical etc. (My NHS consultant tried to draw a connection between my physical appearance and my medical presentation, and implied that I would be better if I had a stable boyfriend *rolls eyes*).

    Feel free to contact me on here, or over email (I'm easthamjanet at gmail.com).
    I really look forward to hearing from you!

    All the solidarity,
    Janet
     
    Last edited: Aug 31, 2016
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  2. Sasha

    Sasha Fine, thank you

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    Welcome to the forums, @JanetME! This is a great thing you'll be doing. I hope someone can help you.

    Just tagging a couple of London people who might have good contacts: @olliec, @L.A. Cooper.
    "Dauer"! (New word for all of us.) :)
     
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  3. JanetME

    JanetME

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    Aha thank you! Made that edit ;)
     
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  4. JanetME

    JanetME

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    And thank you so much for linking in some people in London who might be able to help
    k
     
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  5. AndyPR

    AndyPR Senior Member

    "Did someone say my name??"
    jack.jpg
    Apologies for derailing your first post @JanetME but I couldn't resist :) Good luck finding someone.
     
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  6. Cheesus

    Cheesus Senior Member

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    I fulfil all your criteria except gender. I've been completely bedridden, unable to walk at all and in these same four walls, for nearly two years. I have been seriously let down by the NHS. I was unceremoniously discharged from my local service when I told them that GET wasn't working. I have needed to see a specialist for a long time but no one will come to see me or even speak to me on the phone.

    If you fail to find anyone else then send me a PM as I would be happy to talk to you.
     
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  7. Cheesus

    Cheesus Senior Member

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    Oh also I haven't had paralysis, seizures or blackouts. I did have something that I suspect could have been a seizure a few years ago - before I was completely bedridden - but when I called my GP and told him, I could hear him doing the telephone equivalent of shrugging his shoulders, so I still don't actually know what it was that happened.
     
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  8. roller

    roller wiggle jiggle

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    female, 51, from europe, staying in SEasia

    the best word to describe my time on planet earth is .. hibernating!
    • my life is just periods of severe ME.
    • yes - paralysis, seizures 4 severe (non epileptic) & blackouts
    • ridiculed by gynacologists, dentists, opthalmologists, general practicioners
    • i have been diagnosed with hyperthyroidism by 12, and ADHD by 46 (Ritalin no success)
    • in that kardofski scale i would rate myself (until treatment began) between 10 and 20 , and no, im not exaggerating
    • im pretty unhysterical and very happy single
    i became sick as a child.
    with the yet published the micro-findings of the naviaux study i entirely concur
    and have found an antidote to the sphingo issue already 20 years ago - by chance

    a dramatic improvement i achieved with anti-parasitic medications.
     
    Last edited by a moderator: Aug 31, 2016
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  9. Skippa

    Skippa Anti-BS

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    Should give bonus points to someone who was further harmed by GET/CBT, slip that in the article too!
     
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  10. charles shepherd

    charles shepherd Senior Member

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    My colleague, Tony Britton, at the MEA, who handles our press and media, has a list of people who are willing to talk to the media.

    We could also put an announcement on our Facebook page - where people are always willing to respond to this sort of request

    MEA Facebook: https://www.facebook.com/pages/ME-Association/171411469583186

    We have just arranged for someone to write 700 words on their personal experiences for another national newspaper!

    This is a feature I wrote for the DT recently - which has a few issues relating to diagnosis etc that are still worth pursuing…

    http://www.telegraph.co.uk/news/hea...octors-to-apologise-to-their-ME-patients.html

    The focus of our current MEA campaigning is Early and Accurate Diagnosis:

    http://www.meassociation.org.uk/201...nals-that-could-improve-prognosis-9-may-2016/

    And the APPG on ME is focussing on Social Care for people with ME/CFS - or rather the lack of it and how this particularly affects people at the severe end of the spectrum. Might be worth getting a quote from Sir Peter Bottomley, Chair of the APPG on ME…….


    If you require any help from the medical point of view please let me know

    Dr Charles Shepherd
    Hon Medical Adviser, ME Association
     
    Last edited: Aug 31, 2016
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  11. JanetME

    JanetME

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    This is all incredibly helpful Dr Shepherd. I will read through all of this and get back to you tomorrow morning. I would definitely like to get your medical perspective on these developments. Do you have an email address I could contact you on, or feel free to email me at easthamjanet@gmail.com. Many thanks
     
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  12. JanetME

    JanetME

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    Hello everyone. Thank you so much for this wonderful response so far. The good news is that the PWME I was hoping to interview earlier has been back in touch, and is well enough to talk to me, but I may still want to speak to a couple of other people. I need to have a think about what other kinds of interviews I might need, and will post again in the morning once I'm slightly more refreshed.

    I would say hold off posting on Facebook asking for other interviewees for the moment, but I will get back to you all about that tomorrow.
     
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  13. TiredSam

    TiredSam The wise nematode hibernates

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    One of the meanings of "Bauer" is pawn, which we have all been for many years, so it wasn't that wrong.

    Dauer isn't a new word for me, but non-binary is, so I've learnt something today. Living in Germany for over 20 years I miss out on a lot of linguistic and cultural developments in the UK - I remember having to google words like "pikey" and things like "tellytubbies", "spice girls" and "Mr Blobby" to find out what on earth my fellow countrymen were referring to these days. Most recent one was "Vajazzle". When I go back to the UK my inability to follow cultural references in conversation despite obviously being British does make people look at me funny. I usually pull a grim face and say tersely "I've been away", letting them think I've just come out after a 20-year stretch, which shuts 'em up nicely.

    But I digress. On with the thread ...
     
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  14. sarah darwins

    sarah darwins I told you I was ill

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    Keep meaning to ask, what's the correct pronunciation of dauer ?
     
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  15. TiredSam

    TiredSam The wise nematode hibernates

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    rhymes with flower.
     
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  16. sarah darwins

    sarah darwins I told you I was ill

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    Bless you.

    btw, Sam, I'm assured it's possible to live a meaningful life without knowing the meaning of 'Vajazzle'. Probably less fun, though.

    btw #2, love your new status message
     
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  17. worldbackwards

    worldbackwards A unique snowflake

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    I was dour long before it was fashionable...
     
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  18. sarah darwins

    sarah darwins I told you I was ill

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    Dour's the new emo.
     
  19. Cheesus

    Cheesus Senior Member

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    We're so fashionable.
     
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  20. mermaid

    mermaid Senior Member

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    At least 'dour' is supposed to rhyme with 'moor' although I think it gets mispronounced a lot.

    Tends to be used in connection with Scottish people a lot.....(may be the weather up that way although actually they probably also have more dauer due to the darkness and need to sleep to get through the winters). ;)
     

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