The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Daily Mail (UK) - I'd rather have cancer than CFS

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Jan 22, 2015.

  1. charles shepherd

    charles shepherd Senior Member

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    Valentijn, Bob, WillowJ and 9 others like this.
  2. worldbackwards

    worldbackwards A unique snowflake

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    No, really :D
     
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  3. worldbackwards

    worldbackwards A unique snowflake

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    Only had a flick through, but it's surprisingly not bad for the Mail. Says ME and FM are interchangeable, but you expect that kind of shoddy research from the tabloids.
     
  4. Matthew Jones

    Matthew Jones Senior Member

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    I am so glad to see some recognition in the media! Lets show the Daily Mail in the comments that we are grateful for coverage of the physical devastation this diseases causes.
     
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  5. jimells

    jimells Senior Member

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    I read somewhere that most of us will end up with both, if we don't kill ourselves or have a heart attack first.
     
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  6. charles shepherd

    charles shepherd Senior Member

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    Reply

    Yes, while FM and ME/CFS have symptoms in common there are also important differences - so they are not the same condition.

    I'm afraid we were not given the opportunity to check the whole article and correct any errors before it went to press.
     
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  7. charles shepherd

    charles shepherd Senior Member

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    Yes, it would not do any harm to say something nice about the Daily Mail coverage - possibly included in a correction of anything that needs correcting (e.g. FM = ME/CFS). I haven't yet had time to read the whole item.
     
  8. Min

    Min Guest

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    I'm sorry comments are focussing on the fibro/ME confusion instead of on how excellent the article is.
     
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  9. Sidereal

    Sidereal Senior Member

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    Good article but I am worried that the headline will be used against us.
     
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  10. worldbackwards

    worldbackwards A unique snowflake

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    To be fair, the person in the article has both, so she'd know. Probably unwise to expect the Mail to do sensitive and understated as well ;)
     
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  11. charles shepherd

    charles shepherd Senior Member

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    Yes, it's a good article.

    My only criticism relates to the Stone Age diet.

    This is not something I would recommend for people with ME/CFS, especially when cancer is involved as well.

    People with this illness have more than enough restrictions placed on what they enjoy doing.

    Unnecessary dietary restrictions should not be added to the list - unless there are really good reasons to do so (e.g. trying an exclusion diet to help with IBS type symptoms).
     
  12. Min

    Min Guest

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    I had a Dutch GP who said that fibromyalgia and M.E were considered the same illness in his country.

    (Unfortunately he stupidly said that everyone with M.E. should 'take up sport', maybe his M.E. patients annoyed him do much he was trying to kill them off. I can only walk a few steps so didn't take his advice)
     
  13. Aurator

    Aurator Senior Member

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    Agreed.
    And hopefully it will do no harm to say something nice about your own efforts in getting the article to press:
    Thank you very much!
     
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  14. charles shepherd

    charles shepherd Senior Member

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    Thanks - The Science Media Centre was not involved with this one…….
     
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  15. Sean

    Sean Senior Member

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    Is this a first?

    :D
     
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  16. charles shepherd

    charles shepherd Senior Member

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  17. taniaaust1

    taniaaust1

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    There are some Australian "CFS" specialists (well ones in my state of Adelaide) who do believe thatt they are the same thing too. I had one CFS specialist here put me onto fibromyalgia drugs at a time I didnt even have it and wasnt getting any of that kind of pain. I told him but he just ignoredme and goes "we'll try this".

    When I went back next appointment he goes "how's your all over pain now?" .. and Im like What?? I told you I dont get any of that any more and hadnt for a long time and you still insisted I went onto the FM drug and of cause it didnt do a thing. His response was just "you can come off of it now". This CFS specialist had also previously said FM and ME/CFS were the same thing.

    This soo bugged me, I was needlessly put onto a drug for a symptom I didnt have (while the symptoms I did have were ignored) esp when I have MCS and can get some very bad drug reactions when trying drugs. I wont let myself be pushed into that kind of situation again.

    So it bugs me when the media confuses ME and FM but I guess with the current state of affairs as horrific as they are, we cant expect too much.
     
    Min likes this.
  18. taniaaust1

    taniaaust1

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    I personally like the headline..its exactly how I feel and Ive said that at times myself (and I how bad cancer is as Ive watched many family members die from it).

    I think I have PTSD over how badly Ive been treated by the professionals from "some" doctors to my states government disabiliyt service. (I have nightmares where Im taken away by them and left to die somewhere from ME, due to not being believed how sick I are. Nightmares where Im dragged onto ambulances cause they are going to lock me away while crying and screaming they are going to kill me cause I are really sick).

    If I had cancer, I do believe I'd be feeling less traumatised and wouldnt be feeling suicidal over how badly Ive been treated by those who were supposed to help.
    ............

    I just read the whole article and cant at all see where it says FM and ME/CFS are the same thing?? (maybe they corrected the article???). I think its a great article.
     
    Last edited: Jan 22, 2015
    vli likes this.
  19. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Thanks so much for working for good press coverage and please pass on our thanks to Dr. Montoya and the reporter as well. It's such a relief to see more balanced coverage.
     
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  20. eafw

    eafw Senior Member

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    The prospect of that headline is probably what sold the story to them. All we need now is to find a way to blame the PACE debacle on immigrants or single mothers, and a light intermission with some "adorable puppies" being rescued by a person with ME and we're away.

    Yes, and as an individual comment on her own circumstances that's fine. But I really hope that this is not a line that the ME charities or anyone else tries to pursue further. "Our horrible illness is worse than your horrible illness" (out of the context of say functional scientific comparisons) is not good PR and really quite counter-productive.
     

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