Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Graham Norton in The Telegraph Agony Column replies to someone with ME

Discussion in 'General ME/CFS Discussion' started by sarah darwins, Jan 30, 2016.

  1. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,469
    Likes:
    10,485
    Cornwall, UK
    http://www.telegraph.co.uk/wellbein...-have-me-and-cant-stop-being-jealous-of-frie/

    This is more an emotional support piece than anything, and probably alright as far is it goes. And Graham Norton may well know something about ME as his TV producer is a carer for someone with the illness (see this thread) but one line did rather leap out at me:

    Unlikely.

    If anyone wants to write to him and comment on the piece, his email address is in there. But be nice — I think he's one of the good guys. He probably doesn't realise that most people with me/cfs-like symptoms don't really get any testing, let alone treatment.
     
    Valentijn, justy, maryb and 11 others like this.
  2. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,540
    Germany
    I think he wrote a very good response. No harm in politely pointing out his inaccuracy to him of course.
     
    Valentijn, justy, maryb and 3 others like this.
  3. Skippa

    Skippa Anti-BS

    Messages:
    841
    Likes:
    2,960
    You know when a bunch of celebrities start pressing an issue, people tend to listen and they make it public so it can't be ignored.

    We need more celebrity advocates to increase awareness.
     
  4. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,469
    Likes:
    10,485
    Cornwall, UK
    Yes, he's clearly very sympathetic, and probably 'on our side'. It's quite natural for someone who isn't directly affected to assume that we do get medical treatment. If people knew the reality, they'd be astonished.
     
    Valentijn, justy, *GG* and 9 others like this.
  5. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    It would help, but it is a card that has to be played carefully.
     
  6. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    Probably angry and terrified as well.

    The psychs have got away with it so far largely because the bulk of the society (i.e. not the political and economic elites) haven't yet quite twigged to what is going on, and what the implications are for them.

    But that can change quickly in the right circumstances.
     
    Valentijn, maryb, OhShoot and 5 others like this.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    I'd be amazed if Graham Norton had actually written that, as opposed to the paper providing well-researched answers by people with some appropriate background and then sticking his name on it (whole novels by bestselling authors are ghostwritten if they get sick and can't fulfil their contracts), but he will have to have at least signed off on it.

    Edit: From what Charles Shepherd says below, it sounds as though I should have been listening to GN's radio show before I said this! I'm only familiar with him from his TV late-night chat show. Sounds as though he could well have written it himself.
     
    Last edited: Jan 30, 2016
  8. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,615
    Likes:
    12,454
    South Australia
    The piece is sympathetic, but lacks empathy and denies the greater pain and loneliness many of us suffer with ME compared with people who do not suffer from sever illness or disability.

    When things get better? My health has been declining for 10 years.
    He seems to have bought into the notion that everyone with ME improves in time.

    "no children or partner to worry about."

    WTF?
     
    Sidereal, Sean, Scarecrow and 3 others like this.
  9. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,197
    This is going down well on MEA Facebook, where it has 96 likes in just two hours:

    https://www.facebook.com/ME-Association-171411469583186/

    I have now red the item and agree that overall it's a good reply - apart from the medical info re treatment and prognosis.

    I have updated my comments:

    I'm listening to Graham Norton's Saturday BBC radio 2 programme at the moment - where he is actually very good (for most of the time) in dealing with the health, emotional and even quite serious mental health problems that his listeners send in.

    So I think he will have written the DT reply, or outlined to a scribbler what he wanted to say.

    Overall, this is a good reply - apart from the bits about people being able to get the treatment they need for their ME/CFS and the prognosis. So Well Done Graham!

    I will drop him a line about the treatment of ME/CFS and mention that I'm very happy to help if he gets any more ME/CFS questions.

    Graham is potentially a 'good guy, with big celeb influence - so diplomatic responses about the treatment bit are a good idea if anyone is going to write as well.

    I like GN and also went to see his TV prog being recorded before Xmas with my daughter, who works in TV, and gets these tickets!

    He could be quite useful to us........

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    MEMum, rosie26, Valentijn and 19 others like this.
  10. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,615
    Likes:
    12,454
    South Australia
    Yes!

    One of the most harmful myths that many people believe is that most people with ME or CFS improve and eventually recover. Many of us do not and we are very disappointed with the lack of treatments and lack of leadership within the scientific community to develop treatments and understanding. There are some great scientists doing ME research but there are too few of them. Any other disease (this is provable!) with similar disease burden would have well over ten times as many people working on it.
     
    rosie26, Sidereal, Valentijn and 7 others like this.
  11. Gijs

    Gijs Senior Member

    Messages:
    643
    Likes:
    1,303
    It is great to read this kind of columns but what we really need is MONEY for research!
     
  12. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,540
    Germany
    I noticed that too. I'd be a lot worse off without the support of a partner "to worry about".
     
  13. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,469
    Likes:
    10,485
    Cornwall, UK
    Ditto. Or I'd have starved to death. Or thrown myself under a train to avoid starving to death!
     
  14. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,540
    Germany
    Yes that's what I wanted to say. Health ruined, financially ruined. That kind of stuff.
     
  15. Old Bones

    Old Bones Senior Member

    Messages:
    808
    Likes:
    4,907
    Or thrown myself under a train to escape the unbearable loneliness of living alone, and with no endurance to establish and maintain outside relationships.
     
    Sidereal, Mel9, Never Give Up and 3 others like this.
  16. jimells

    jimells Senior Member

    Messages:
    2,001
    Likes:
    6,115
    northern Maine
    It's not so bad living alone. Well not really alone, since I have two cockatiels inside and lots of wild birds outside. After all the crap I've been through in recent years, I have no energy or tolerance for "family drama". I appreciate that folks who tend to be extroverts probably have more difficulty being alone all the time. Fortunately I'm an introvert.

    Still, there are days when I would give almost anything to have someone bring me a coffee in bed.
     
    mango, Sidereal, maryb and 8 others like this.
  17. Old Bones

    Old Bones Senior Member

    Messages:
    808
    Likes:
    4,907
    I am more introverted than extroverted, and enjoyed living alone for several years pre-marriage when I was healthy. I could likely adapt to this situation, if required.

    However, I occassionally wonder. What happens if my husband dies before me -- a distinct possibility since he is several years older. We have no children, no younger family members (except distant second and third cousins who we rarely see), and no younger friends. Who will step in to provide the assistance I gave my mother in the last years of her life? I sometimes imagine being a future news story -- an old woman who dies alone in her home, and nobody notices until months later. I've considered "adopting" a grandchild, but where to find a compatible situation -- a family who would appreciate some attention and assistance from an older couple, but without expectations we'd be unable to satisfy based on my limitations.
     
    Sidereal, maryb, Valentijn and 5 others like this.
  18. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,197
    Sent to Graham Norton:

    Dear Graham

    You will be pleased to learn that your kind and thoughtful response to the lady with ME was well received by many of our members on the MEA Facebook page: https://www.facebook.com/ME-Association-171411469583186/ with over 200 likes in just a few hours!

    A couple of points regarding the medical side of ME/CFS:

    I'm afraid that diagnosis and treatment of this illness still leaves an awful lot to be desired with many people waiting months, even years, for the diagnosis to be confirmed and then receiving very little, or even harmful advice, on management

    And while it's important to give people hope, and remain optimistic about improvement, the situation regarding prognosis hasn't really changed very much from the statement (which I helped to write) in the 2002 Chief Medical Officer's report on ME/CFS:

    Most patients will show some degree of improvement over time...but...research evidence indicates that only a small minority of patients recover to previous levels of health and functioning

    To try and improve the situation regarding early and accurate diagnosis, The ME Association will be launching a campaign in May aimed at both doctors and the public - this is being funded by money raised in our Christmas Appeal

    Any support at the time would be greatly appreciated!

    And if I can be of any help with the medical side in future please let me know

    Kind regards

    Dr Charles Shepherd
    Hon Medical Adviser, ME Association

    Website: www.meassociation.org.uk
     
    MEMum, rosie26, Sidereal and 24 others like this.
  19. duncan

    duncan Senior Member

    Messages:
    2,039
    Likes:
    4,475
    "Most patients will show some degree of improvement over time..." SUSTAINED improvement?

    On what do you base this claim, @charles shepherd?
     
    K22 likes this.
  20. anniekim

    anniekim Senior Member

    Messages:
    768
    Likes:
    672
    U.K
    charles shepherd, thank you for writing but I do feel those of us who don't make improvements after years , deteriorate or go very up and down are ignored when it's said ''most' improve. I wonder whether 'most' is true. Seems we don't know yet enough make that statement...
     
    mango, Sidereal, maryb and 3 others like this.

See more popular forum discussions.

Share This Page