Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
Discuss the article on the Forums.

Living with chronic fatigue: How I wish my friends would treat me (Telegraph)

Discussion in 'General ME/CFS News' started by Simon, Dec 21, 2015.

  1. Simon

    Simon

    Messages:
    1,919
    Likes:
    14,452
    Monmouth, UK
    This is a brilliant, profound and moving piece by former journalist Lucy Mayhew. It made me cry in places but it's uplifting too. It's been a great year for pieces about living with ME (not to mention brilliant pieces about this illness more generally - thanks, @charles shepherd - and research - thanks David Tuller and more) and perhaps this is the finest.

    Living with chronic fatigue: How I wish my friends would treat me (Daily Telegraph)
    Lucy Mayhew

    ...
    ...
    It's quite a long piece and I've only quoted a tiny amount, but I would say it's well worth the effort.

    Thank you, Lucy Mayhew
     
    Last edited: Dec 21, 2015
  2. hellytheelephant

    hellytheelephant Senior Member

    Messages:
    874
    Likes:
    4,509
    S W England
    Thank you for posting this @Simon. It has made me feel sad about some of my own friendships....but has also reminded me of the kindness of people , who I did not consider to be particularly close friends before I was sick, who have been supportive and helpful. As Lucy says in the article, it is hard work to support us steadily and witness our suffering and loss, for some people that is just too much.
     
    Luelma, Richard7, Mel9 and 5 others like this.
  3. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    Good article. Lousy title.
     
  4. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    True. I think they just do it because it's shorter and they know they can get away with it. I don't think they really understand the implications.
     
    Aurator and duncan like this.
  5. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    Agreed. I suspect it was a decision made by an editor, but I'm just speculating.

    Still, using chronic fatigue is inaccurate. Yes, it is misleading, and yes, that bothers me. What should bother the paper, though, is the inaccuracy.
     
    worldbackwards likes this.
  6. mermaid

    mermaid Senior Member

    Messages:
    596
    Likes:
    1,065
    Cornwall, UK
    I am on another forum where the writer of the piece has said that she is 'cringing at the headline' and various sub edits and changes made, so yes, it has been edited.
     
    Jennifer J, ahmo, picante and 9 others like this.
  7. Large Donner

    Large Donner Senior Member

    Messages:
    857
    Likes:
    3,799
    There's an easy fix to this, two letters....M E.
     
    Aurator likes this.
  8. Aurator

    Aurator Senior Member

    Messages:
    625
    Likes:
    3,077
    If I was an uninitiated reader, the headline would make me temporarily suspend my sympathy for the person featured in the article. I'd be left thinking: "rather than focus on the way her friends treat her why doesn't she just make healthier life choices to avoid being chronically fatigued?"

    If I could be bothered to read on I'd get to the passage "There is no tidy diagnosis or cure for my complex immune and gastrointestinal condition. It has most in common with the severest cases of Chronic Fatigue Syndrome" and probably conclude that at best this person was suffering from a self-diagnosed imitation of an already nebulous illness, and could scarcely be considered genuinely ill at all.

    I've no doubt Lucy's version of events was very different from that served up by the newspaper, but the pictures of her beaming radiantly in the doorway and beaming again in trainers and a vest against an idyllic backdrop while snatching a quick breather during her morning workout would only leave me feeling even more at a loss to know what exactly was wrong with her; less sympathetic readers would probably already have a distinctly uncharitable answer to that question.
     
    hellytheelephant and duncan like this.
  9. jimells

    jimells Senior Member

    Messages:
    1,997
    Likes:
    6,099
    northern Maine
    The editors clearly don't get it. Did they even read the story? Stuffing the article into the "Lifestyle | Women" category is just unforgivable. I feel bad for the author who worked so hard on it. She is right to be upset.
     
    ahmo and duncan like this.
  10. Sidereal

    Sidereal Senior Member

    Messages:
    3,095
    Likes:
    17,172
    Her article is great but the pictures are so incongruous and the headline is awful. Not her fault, obviously. Editors choose headlines.
     
    duncan and worldbackwards like this.
  11. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,178
    From MEA Facebook page:

     
    Sidereal, Mel9, Jennifer J and 10 others like this.
  12. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    I feel very badly for her. She wrote a compelling and evocative story; I thought it was very, very good. She clearly knew intimately not just her own experiences, but the jargon and appropriate terms. She would not have made the chronic fatigue gaffe in the headline, imo.

    And yes, overall, it was successful, I thought, at conveying the misery that hounds patients' everyday - both physically and emotionally as medical and societal outcasts.
     
  13. Large Donner

    Large Donner Senior Member

    Messages:
    857
    Likes:
    3,799
    Why as a former journalist would she get photographed on a park bench in jogging gear? Surely she would know how that would come across when trying to explain the nature of a serious Illness that has so many disbelievers?
     
    JayS and hellytheelephant like this.
  14. Aurator

    Aurator Senior Member

    Messages:
    625
    Likes:
    3,077
    I think all of us at times find it hard to see things through the eyes of uninformed onlookers who know little or nothing about ME/CFS, and on balance this story is unlikely to have done us any favours.
     
    hellytheelephant likes this.
  15. Luelma

    Luelma

    Messages:
    13
    Likes:
    74
    MODERATION NOTE: Lucy's post below was originally posted in a separate thread.

    Here is an article I wrote on the unceasing need for compassion, kindness and emotional support is in today's Daily Telegraph. I hope it might resonate and/or be helpful to share with friends and loved ones who sometimes think all input is useless because they don't have the answers. (This is very much not the headline I'd choose but I hope may touch or help in some small way)
    It can be read here http://www.telegraph.co.uk/…/living-with-chronic-fatigue-h…/ Feel free to share if at all appropriate or helpful.
     
    Last edited by a moderator: Dec 21, 2015
    Mark, Effi, Debbie23 and 12 others like this.
  16. Luelma

    Luelma

    Messages:
    13
    Likes:
    74
    Thanks Duncan - my heart sank and stomach flipped when I read the title - personally very awkward & embarrassing in terms of the accusatory tone to my friends and, of course, infuriatingly calling it term chronic fatigue. Headline writers - agh! I did requested it be changed straight away but was told no.
     
    Mark, Battery Muncher, Effi and 8 others like this.
  17. Luelma

    Luelma

    Messages:
    13
    Likes:
    74
    Thank you so much for your generous
    Thank you so much Simon for your generous words and for, instinctively knowing that I am not the headline writer. Such a frustrating shame but hopefully the content is more postively resonant for fellow sufferers! Thanks again Lucy
     
  18. Luelma

    Luelma

    Messages:
    13
    Likes:
    74
    Oo
    Apologies for the understandable offence of both the headline which I begged to have changed the moment I saw it and for the photographs. I was asked to supply photos of me 'Before' my illness. I had precisely three having lost all my backed up photos and two were poor quality so, though they ended up being used, I did not expect them to be.

    The article running was the most important thing and without photos it would not have run at all.
    Like all who are bedridden, I yearn with every atom of my being simply to be able to leave my bed, get dressed, wash my hair, and, most of all, get downstairs and outside into the fresh air once more.

    As it stands none of these are possible and hopefully the content makes that clear.

    Had current photos been suggested to me, which they were not, I would have refused partly due to vanity and pride over an appearance I cannot keep up but overridingly because there is no way I could stick to any appointment due to the unpredictability of excruciating different pain attacks and so much more, as I am sure will be understood.
    One cannot have this illness and not know the near-palpable ache to be able to walk and yes, run/jog, dance and so much more. I can only agree that the relative lack of unambiguous explanatory photo-captions do not make it plain these are photos are almost a decade old and represent a time when life was still being lived.
     
    Mark, Battery Muncher, Effi and 19 others like this.
  19. duncan

    duncan Senior Member

    Messages:
    2,038
    Likes:
    4,466
    You conveyed what needed to be conveyed in the way only good writers - writers who have lived through something bad - can.

    The headline was not you, and it could not undo the good you did. And that's the takeaway: you did good.
     
  20. Richard7

    Richard7 Senior Member

    Messages:
    536
    Likes:
    956
    Australia
    lulema

    i have been struggling a bit trying to work out what to say.

    I could criticise the article for being a little fuzzy, I don't really think you got wherever you wanted to go with the stuff about the importance of compassion. It seems a series of statements rather than a clear argument.

    But Journalists who are well and not seeking to please editors have these problems too, and I do not see any other problem with it.

    Your story is relatable and I cannot see a problem with it being so related.

    I don't see you as saying that your experience is the one true experience of ME/CFS. Indeed you are broadening it out to be an experience of chronic illness

    I think it a useful piece in the light of all the anti-disability propaganda and sentiment we are subject too. I think it useful in the light of the longstanding pro-disabled (as long as you're unusually lucky and capable, need no assistance and are "contributing to society") propaganda too.

    I am glad that you focus on the human issues of what it is like to be chronically ill and of how to be a friend to someone who is chronically ill.

    I am always rather put off by the economic arguments people seem compelled to make for why the wider community has a stake in us getting well. They contain, after all, the implication that it would be ok to abandon any disabled person or group on which the wider society could not turn a profit.

    I think that the photos - though inaccurate - do work in well with your comment about people thinking that you look fine so you must ok.

    I really hope that you find some solution or partial solution that helps with the pain (and everything else of course).

    Thanks for the article.
     

See more popular forum discussions.

Share This Page