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BBC Programme - Jodi's Lovely Letters - 'ME' Sufferer

Discussion in 'General ME/CFS Discussion' started by ChrisD, Jul 24, 2017.

  1. ChrisD

    ChrisD Senior Member

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    Did anyone just catch the BBC programme about a girl in the UK who had ME and depression, and decided to combat her depression by helping others in unfortunate situations and suffering by writing letters to them to cheer them up?

    In the programme she describes how she was bitten by a tick on the Isle of wight and developed encephalitis which apparently developed into ME, it sounds a bit like Lyme to me?!

    In the programme we see her travel around her town, to South Africa and set up an exhibition. She says that when her ME is bad she just works harder - I am slightly sceptical about whether she really has ME as she doesn't talk about PEM and dwells on the overlap between mental health which I am worried might yet again twist public opinion on this illness, particularly off the back of the recent ME/CFS Doctor in the house episode.

    Anyone else have thoughts on this?

    http://www.bbc.co.uk/programmes/p05...stostrangers&intc_linkname=bbcone_fac_vidclip
     
  2. PhoenixDown

    PhoenixDown Senior Member

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    Just saw this, I don't think she has ME or maybe it's very mild.
     
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  3. Starlight

    Starlight Senior Member

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    I haven't seen this but if she works harder when her ME is bad I think it is very unlikely she has ME.
     
  4. Woolie

    Woolie Senior Member

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    God save us from stories of noble warriors battling their sicknesses.:eek:
     
  5. SamanthaJ

    SamanthaJ Senior Member

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    Watched the programme this morning. It wasn't as bad as I expected. I think it would have left people none the wiser about ME but not necessarily badly informed either. The emphasis was more on her mental health, which preceeded the ME by some years, and seemed to be the main problem now.

    On the ME: She had been bed-bound for a year and a half after being bitten by a tick, but was clearly no more than mildly affected now, although there was no reference to her having a job. She didn't ascribe her physical improvement to anything in particular, but did refer to the project helping her out of the despair triggered by being so ill. A couple of times I felt she was about to say more about her physical health but they cut to something else. For example, she said when the ME was worse she tended to work harder, to 'over-work' (her phrase), but then they cut. When Aled Jones (the presenter) asked whether the exhibition had had a positive effect on her health, she tentatively said yes, on her mental health (her emphasis). You felt there was a 'but' coming, but again they cut. I don't think it was necessarily deliberate, it was just not the emphasis of their story, which was really about her letter-writing project.

    The voice-over described ME as a disorder of the nervous system, causing extreme fatigue and discomfort (!) I think he mentioned cognitive symptoms too. I don't think they conflated the mental and physical health problems, it seemed clear to me that they were seperate, but it didn't give an impression of what ME is. Her current physical limitations were not discussed at all - you would not think that she had any, but we don't know what was edited out. But I don't think it was pretending to be a programme about ME, it was almost a background detail. I thought it was pretty good on her experience of mental health problems. I found some of the things she said about that quite enlightening.

    In short, it did not shine a light on ME, and people would have been none the wiser about what her current physical health problems were, but I don't think there was cause for anyone to tell us that we'd get better if only we'd get involved in a nice project. I think there will always be family and friends who will choose to see it that way though!
     
    Last edited: Jul 25, 2017
  6. Woolie

    Woolie Senior Member

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    Thanks for that really insightful account, @SamanthaJ.
     
  7. SamanthaJ

    SamanthaJ Senior Member

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    No problem! I was watching quite closely in order to pre-empt a slightly interfering relative!
     
  8. Jodi1988

    Jodi1988

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    Hi,

    I'm Jodi - the girl who's programme your talking about. Obviously finding this really upset me because .. well, how dare you.

    I have M.E just like you. The focus of the program wasn't to do with my M.E - it didn't include when I blacked out and fell down the stairs during filming or on a separate time having to be sent to hospital in an ambulance due to over exertion (the PEM I'm sorry was absent from the program, Chris) and the doctors thinking I'd developed a blood clot. They didn't film me inbetween takes having to sleep, my swollen limbs or cognitive breaks. Again Chris, I'm sorry.

    I don't have Lyme Disease, I've been tested and nor would I call myself a Noble Warrior, Wooly. I started the project because things got unbearable and I needed a way out.

    I'm not sure why you felt the need to lay into me or the severity of my condition. As you will all know, it's hard enough coming from other people not understanding your condition let alone other people who are supposed to be supportive fellow sufferers.

    The program was 30 minutes long, we had to fit 4 years of work in and it wasn't called Jodi and her M.E. It was about my letters, touching upon how my conditions are also in my life and something I'm working with everyday. I'm sorry I didn't seem ill enough for you, that my condition is mild. I can assure you, it isn't.

    Anyway, enough. I hope this ends the analysis, I hope you're having a lovely day.

    Jodi
     
  9. SamanthaJ

    SamanthaJ Senior Member

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    @Jodi1988 I am not surprised that you are upset and I'm sorry for all I said that has contributed to that. I referred to your condition as mild because that was how it seemed in the programme, but obviously from what you say that was not the full story. For what it's worth I did enjoy learning about your work, and as someone with a very dear loved one with depression I found what you said about that very helpful. More than helpful. Really illuminating for me - it enabled me to see through her eyes. I've recorded the repeat for that loved one to see. My description above focussed on the portrayal of ME because, as you'll know yourself, media coverage of ME is scarce and often damaging (not that this was), and some of our family and friends are very ignorant about it and take media coverage very literally (Ironically and unfortunately that is exactly what we've done here). I'm truly sorry that you found the analysis and scrutiny hurtful, and I perfectly understand why you would. A person with ME should be able to make whatever kind of programme they like, just like anyone else. If you are still reading I hope you will accept my sincere apology. With very best wishes for your health.
     
    Last edited: Jul 26, 2017
  10. Jodi1988

    Jodi1988

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    Thanks Samantha, that's really lovely of you and I really appreciate it. X
     
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  11. Woolie

    Woolie Senior Member

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    @Jodi1988, thank you for reminding us that there are real people behind these stories. It is important that we are respectful at all times and not hurtful.

    To explain my comment above, it was not at all a criticism of you or any patient, it was a criticism of the media, that shows such a bias towards stories of ill people who have battled their illness and got better. A bias favouring these types of stories can lead well people to believe that illness can be overcome by effort, and those still ill are just not trying hard enough. For example, many cancer patients are sick of the "battled cancer and won" stories that make those less fortunate look somehow like they're not trying.

    But its perhaps more of a concern for us, because many people genuinely believe you can overcome MECFS through your own efforts.

    So that's where people are coming from there.
     
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  12. SamanthaJ

    SamanthaJ Senior Member

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    That's a much nicer comment than I feel like I deserve! Good luck with everything. X
     
  13. SamanthaJ

    SamanthaJ Senior Member

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    Amen to that. I feel like I've learnt a lesson here.
     
  14. ChrisD

    ChrisD Senior Member

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    @Jodi1988 I would like to apologise and feel bad that I have upset you with quite a brash statement on the programme you featured in, it was fairly naive of me to not think that you as someone with ME might come across this thread and that I should not take more care in writing my post. It was pretty poorly written by me; using inverted commas over 'ME' in the title and language such as ''writing letters to cheer them up?''. Putting myself in your shoes and reading my comment, it now comes across as quite sarcastic, pessimistic and accusatory - which is not good, nor what I had intended. I just rushed to get something down as I felt that to stay true to the nature of this forum, it would be good to start a commentary on media coverage of our illness.

    @SamanthaJ gave a much better synopsis with more of a level-head and drawing on the positives of the programme. It is true that the programme gave a good description of ME and every little bit of awareness is useful. I too noticed that upon being asked whether your work had helped your health, that you distinctly clarified that it improved your mental health but it did seem that you were cut off. This is where I would also like to clarify that when I wrote my post, not for a minute was I targeting yourself for not presenting your ME in the right way, but I do think that the broadcaster may have a bias or an agenda when it comes to the illness - as we have seen on quite a few programmes recently.

    I do also feel like a bit of hypocrite, as I am often complaining about how my friends and people I know will only see me when I am at my best (slightly better health) and how this can be quite deceiving to their understanding of my condition. People often say that I look fine, so therefore I must be fine - and I have almost made that exact accusation of you and the programme.

    Anyway, as you say, ME is just a side note to the main narrative in this documentary which is about your marvellous work and for what it is worth, I think you are an amazing, one-of-a-kind, individual who has worked hard to turn dark into light and I find what you are doing to be a true inspiration and admire your altruism. Keep doing what you are doing and I hope you make a million letters, because it seems like you have already changed so many lives.

    I have learned a lesson here too.
     
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  15. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I love how this thread has captured so much that is wrong with how the disease is perceived both by the media, the general public and fellow sufferers.

    As a mild case myself (according to the MEA's rather poorly defined scale) I often read some of the comments on some threads that seem to infer I have an easy life. Well in comparison to being bed bound permanently I do have an easy life and I am mild and this is quite levelling for me in a good way I think.

    However compared to a "normal" person I wouldn't call what I have as mild by any stretch of the imagination. I kind of resent the term "mild" actually, since it's so life limiting and calling it so often feels like I somehow have it good.

    I see this all the time, probably because I'm looking for it and I do think it's a natural part of our language to put conditions like "just" mild and "probably" mild or "only" mild. It seems the word "mild" is the problem rather than people's intentions.

    I think the MEA and fellow sufferers should find a different way of grading symptoms avoiding this term. After all the majority of sufferers (75%) and actually those who are more visible to healthy people and the media are "mild" as opposed to the invisible "severe" cases. In this respect we are shooting ourselves in the foot by telling the media that most people with ME are "only mild" cases.

    I think separating disability scales and symptom severity would be a good start.
     
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  16. SamanthaJ

    SamanthaJ Senior Member

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    @arewenearlythereyet You are so right. I casually used the word 'mild', yet I could be described as 'mildly affected' myself and it's definitely not a fair reflection of the restrictions most of us face. Compared to healthy people we are often very restricted. Spending hours or days in bed to recover from 'normal' activities isn't 'mild' illness. Having to change the plans you had for the rest of your life isn't 'mild' illness. I suppose because the severest end of the spectrum is so severe, and the spectrum is a very wide one, (perhaps wider than in any other chronic physical condition?) we look for words to differentiate, but 'mild' is not a great word for a life-changing, chronic disease, at any part of the scale. I'm sorry for using it, especially in a way that might have come across as dismissive.

    ETA: There's also the issue of the term meaning one thing to us and another thing to the general public, who might interpret it as being under the weather, not ill! So it would be better to come up with words that convey that end of the spectrum less ambiguously.
     
    Last edited: Jul 27, 2017
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  17. TiredSam

    TiredSam The wise nematode hibernates

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    I'm sure in the 1980s every time I tried to order a small fries or drink at McDonalds, a cheerful teenager with 3 out of 5 stars on his badge, on minimum wage and five minutes away from toilet duty where he'd have to shoo the drug addicts out of the cubicles, would correct my speech and say "regular fries?" (Can you tell how much it used to annoy me?) So perhaps instead of mild M.E. (or even worse - "mild CFS") we could have regular, moderate and severe?

    While we're at it we could replace "severe" with "unimaginably horrendous". And seeing as McDonald's marketing did us such a favour with the "regular" thing, I think I'll return the favour by writing to them and suggesting that they can use our term "unimaginably horrendous" for their supersize menu. I wouldn't charge them for it of course, but if they wanted to send a cheque for whatever the idea's worth to Ron Davis I'm sure no-one would mind.
     
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