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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List of UK programmes for ME awareness week starting tomorrow 7th May

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, May 7, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    What's on the BBC tomorrow (Tuesday) for ME Awareness Week?

    Your schedule for another packed day of ME Awareness

    The main event:
    7.00am Newsbeat Documentary 'M.E. and me' on BBC iPlayer (and hopefully YouTube) presented by Emma Donohoe.

    8.10am BBC1 Breakfast Show Dr Eliana Lacerda a researcher from the M.E. Biobank and Emma Donohoe on the 'red sofa'.

    12.25pm BBC Radio 1 Newsbeat will include an interview with Dr Charles Shepherd.

    16.35pm BBC Radio 5 Live Dr Luis Nacal head of the M.E. Biobank will be interviewed

    17.45pm BBC Radio 1 Newsbeat repeat of interview with Dr Charles Shepherd.

    18.30pm BBC Radio 5 Drive Emma Donohoe and Jennifer Brea talking to other people with M.E. - those who responded to the recent ME Association appeal.

    18.45pm BBC North West Tonight Merryn Crofts' Mum and Sister will be in the studio talking about Merryn's tragic story.

    BBC Radio 5 Up All Night (from 3.00am) will run a feature M.E. and include an interview with Dr Charles Shepherd.

    We'll keep you informed and post all the relevant links to recordings when we learn of them.

    We'll also post the Newsbeat documentary 'M.E. and me' first thing tomorrow.

    Also, stay tuned for a full day of newspaper stories - national and local...

    Today was a bank holiday for some. Tomorrow the UK wakes up to M.E.! [​IMG]

    (Pictured: The 'red sofa' with Dr Charles Shepherd, Jen Brea and BBC Breakfast's presenters last September).

    #MECFS #MEAwarenessWeek #GoBLUE4ME #BBC #Newsmedia

    [​IMG]
     
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  2. TreePerson

    TreePerson Senior Member

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    I just watched the Newsbeat documentary. Bits of it featuring the young girl Hannah talking to Caroline the UK Biobank nurse and the sections featuring Merryns family were excellent. However the rather bouncy presenter and the shots of her juicer undermine the seriousness of the illness and fail to convey the fact that most people do not recover enough to return to work. I wish she had stressed that she was one of the lucky ones. And not included her juicer.
     
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  3. Hip

    Hip Senior Member

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    I saw this BBC Newsbeat documentary with Emma Donohoe just now on TV, and I did not think Emma's now reasonably healthy energy levels undermined the seriousness of the illness. Nor her juicer (I am not sure why a kitchen gadget would negate the seriousness of ME/CFS).

    I think she and the documentary did a good job of portraying how bad ME/CFS can get, by focusing on severe ME/CFS patients who are bedbound. ME/CFS also comes in moderate and mild varieties, so not all patients are that bad. But nevertheless, it was good to show the severe patients, to demostrate how serious ME/CFS can become.


    Though I agree it might have been good to give some details about the recovery rate in ME/CFS, and to state that many people have ME/CFS for decades or their entire lives. Although I don't think there's much precise data on recovery rates.

    Emma developed ME/CFS after glandular fever (mononucleosis), and there is some evidence that ME/CFS after mono more readily results in recovery after some years: a study found that 45% of post-mononucleosis ME/CFS patients returned to work after a 7 year period.

    Mononucleosis is caused by Epstein-Barr virus in around 90% of cases, and by cytomegalovirus in around 10% of cases.

    Another study that looked at improvement in ME/CFS in general over a 5 year period found that substantial improvement occurred in less than 6% of patients. So that suggests that in the general case (which might involve other viral infections such as enterovirus), natural improvement in ME/CFS is infrequent.
     
    Last edited: May 25, 2018
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  4. anni66

    anni66 mum to ME daughter

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    I think this underlines the adolescent recovery stats ( generally per paediatric primer 60 % over 4-6 years - from memory) as glandular fever seens to peak in adolescence.
     
  5. TreePerson

    TreePerson Senior Member

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    @Hip
    The impression the program left me was that a majority of people will not be seriously affected and will go on to recover. And that lifestyle changes can play a big role in this. But that there are also some very serious and unfortunate cases.

    This irritated me because a majority of adults remainly seriously and very seriously affected for decades disbelieved, unsupported and the disease has been notoriously misrepresented trivialised, underresearched etc. And no amount of juicing has helped them.

    After I posted however it occurred to me in the context of young people the impression created was probably a fair one. That statistically this is the case. And that the documentary was about and for young people. So my comment was unfair.

    The juicer in this instance ceases to be an inert kitchen appliance and becomes
    a powerful symbol of certain positive attitudes and choices resulting in recovery. This kind of narrative of individuals having the power to create their own destiny and positivity triumphing over adversity is very popular particularly with the BBC. In my view it has helped contribute to a situation in which the sick poor and disabled can be legitimately demonised and targeted for benefit sanctions.
     
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  6. Hip

    Hip Senior Member

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    Yes I guess age is also a possible factor: because glandular fever tends to strike people in their late teens and twenties, this form of ME/CFS will usually occur in people of that age range. The average age of the 111 participants of the study was 23, and since the study ran for 7 years, the average age at the end would be 30.



    I have to admit I was not watching the program too closely, as I was in an out of the kitchen at the time making some toast and a hot drink.

    You are right that perhaps the juicer was alluding that lifestyle changes can make all the difference, when in fact as you say, lots of patients have tried many lifestyle changes like this but still remain ill for decades or all their life.

    However, I think that the program's strengths are that it did quite a good job of portraying the intimate bedbound reality of life with severe ME/CFS, like the mother who was only up to seeing her young child for a few minutes each day, due to her extreme mental exhaustion and extreme sound sensitivity.

    I think we need more programs that do focus on this daily reality of life with severe ME/CFS, as I am sure the general public are not aware of all the numerous horrible symptoms of ME/CFS, such as the extreme sound sensitivity.



    It is, but I think that's more a facet of the era we are living in, where people are encouraged, and almost expected, to do things for themselves and to create their own destiny. It contrasts to society as it used to be say 50 or so years ago, when people were expect to follow the paths laid down by various authorities.

    This message encouraging people to do it for themselves does not sit well when you have the more severe levels of ME/CFS, because your whole mind is very weak and blurred due to the cognitive dysfunction / brain fog etc. Taking charge of your own destiny requires a good mind and clarity of thought, which people with ME/CFS no longer have. Even trying to cook your own supper can become an extreme challenge with brain fog.

    Although having said that, as a whole the ME/CFS community have not done too badly in terms of creating their own destiny, with their online presence really making a difference in the way that ME/CFS is perceived.
     
    Last edited: May 26, 2018
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  7. TreePerson

    TreePerson Senior Member

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    @Hip Yes I agree it’s a view that runs through the whole of society but it’s also heavily reinforced by the BBC.

    It’s also a attitude that has played a huge part in the stigmatising of pwme. But you are right in saying that pwme are nonetheless creating positive outcomes through advocacy and many live very positively in their own personal lives :) (though this can go unrecognised. )

    As I said in my original post I thought the bits that focused on severe ME were excellent and much needed.
     
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  8. Hip

    Hip Senior Member

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    It's also great that Emma Donohoe, having more or less recovered from ME/CFS, is doing this good work to raise awareness of ME/CFS.

    Many of us with ME/CFS feel very strongly about trying to better the situation for ME/CFS, regarding the poor treatment of ME/CFS patients, and the lack research funding and interest for ME/CFS. Many of us may even vow to ourselves to do something about it, if we ever recover and gain enough energy and mental clarity to face up to this task.

    But I suspect that in the vast majority of cases, those of us who are lucky enough to recover (either spontaneously or via a treatment like say Valcyte) will soon forget about ME/CFS, and just go on with their lives. The fact that you don't seem to have recovered patients posting on this forum is perhaps testament to that.

    So I think it is highly commendable that Emma has kept her promise to herself, and is doing this good work to raise awareness of the plight of ME/CFS patients.

    If more recovered patients did this, I think we would advance the cause of ME/CFS much faster.
     
    Last edited: May 26, 2018
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