Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
Discuss the article on the Forums.

Norwegian Study makes UK news at last - BBC

Discussion in 'General ME/CFS News' started by LaurieM, Oct 24, 2011.

  1. LaurieM

    LaurieM

    Messages:
    72
    Likes:
    6
    UK
  2. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Thanks Laurie - that is good to see - hope it's a "turning of the tide" now.
     
  3. redo

    redo Senior Member

    Messages:
    837
    Likes:
    102
    "Some patients have sent death threats to researchers after disagreements over a cause or cure". Could someone please send the reporter a kind email asking him to be more specific... It's really irrelevant for a rituximab article to contain such Wessely information, but when it's first there, it ought to be right.
     
  4. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
  5. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Wow that's good Sasha - roll on the rest !
     
  6. LaurieM

    LaurieM

    Messages:
    72
    Likes:
    6
    UK
    Thanks Sasha - link added.

    I've not read it fully yet but the title header is much better than the BBC's:

    Cancer drug 'key to treating chronic fatigue' as experts say syndrome may be caused by defective immune system
    'Most encouraging drug result so far in the history of the disease,' says charity spokesman
     
  7. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    Guys, the Daily Mail article allows comments (short ones). I've just posted one (queuing for moderation) pointing out that the Norwegian government has apologised to Norwegian patients off the back of this study about how they've been treated.

    Please post short comments boosting this finding - e.g. the quote from Dr Bell, how we need govt funding for more studies along these lines, etc. etc.

    There's a brief registration process to comment but we can get in early with positive, sensible comments which will be read by the many, many Daily Mail readers. Other journalists pay attention to what the Daily Mail write so we might be able to influence other coverage.

    Please, no intemperate stuff - from the heart is good, though!

    Here's the link to the story.

    I hope that as the sun comes up on the other side of the pond we'll start to see US coverage too.
     
  8. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    I've added another comment to the Daily Mail article and my first has already been published (I'm Alexandra on there) - please take a look a the comment as well as the story and hit the green arrow to "like" it if you do so that people will find that info about the Norwegian govt apology if they select comments by "most liked". We can keep other good, informative comments in the public eye by doing this throughout the day.
     
    Min likes this.
  9. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    I hate the BBC's coverage of CFS. Tempted to send them a death threat.





    (JOke... JOKE, It's a JOKE.... Oh no, it's all over their coverage of every CFS article now.)
     
  10. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    Thanks for the clicks, folks, I'm going up the charts! Admittedly, a chart that currently consists of my first post and my second post but still!

    There were only a few minutes between my submitting posts to the Daily Mail piece and them going live, so moderation is quick at the moment if anyone else has comments.
     
  11. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    517
    Los Angeles, CA
    I was pleased and delighted that the BBC took such a seemingly objective tone in their report on Rituximab study...but I totally missed the "death threats" mention in the sidebar (that sidebar may have been added on by an editor or someone other than the writer of the main article.) In what way is the repetition of this slur helpful background about the disease or about research into it??
     
    Little Coqui and justinreilly like this.
  12. LaurieM

    LaurieM

    Messages:
    72
    Likes:
    6
    UK
    I think the sidebars are just a cut 'n' paste job - lazy journalism I'm afraid.
     
    Francelle likes this.
  13. LaurieM

    LaurieM

    Messages:
    72
    Likes:
    6
    UK
    Sasha - I like the comments you left. I've registered and added a comment: I'm Alfie - well not really Alfie, but then I'm not really Laurie ;)

    It's a shame I have to remain so anonymous, especially on the web, just to protect my insurance payments :(
     
  14. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    517
    Los Angeles, CA
    OK, I now posted to the Daily Mail site too - I think I must have had to agree to their Terms and Conditions about sixteen times, but hopefully I'll clear moderation quickly. I think others have made excellent general points already and I focused my comment on how the Times should really not be cheerfully chucking the term "yuppie flu" around, since the highly esteemed New Scientist removed that term from their article within 24 hours of the story going live, acknowledging that the term was "pejorative."

    So the BBC site doesn't allow comments? What's the best way to ask them to kindly support their allegations about "death threats" with properly sourced journalism?
     
  15. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    517
    Los Angeles, CA
    and is "Flug" the artist formerly known as V99, who seems to have a thousand names and to appear on every web discussion anywhere in the world, repeating the same few assertions about HGRVs over and over and over again??
     
  16. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    I hadn't realised that was you! Great comment, and I had hit the green button but when I refresh it isn't showing me any points for you. Maybe they'll come up later.

    And my name isn't really Sasha! This is all very Tinker, Tailor! ;)
     
  17. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    Dunno - I don't have an informed view on XMRV but I'd rather the focus stayed on the Rituximab story today because it's a stronger, quicker win for PWME right now in terms of strength of evidence that this is an immune disease, whatever the ultimate cause. It wasn't XMRV that got the Norwegian governement to apologise to patients, it was Rituximab.

    If people don't click approval for it, it will soon drop down the list - more and more people are commenting now.
     
  18. urbantravels

    urbantravels disjecta membra

    Messages:
    1,333
    Likes:
    517
    Los Angeles, CA
    I clicked my disapproval for it...but it doesn't seem that my comment is making it through the Yank Filter. Come on, they let someone from *France* comment!

    Or maybe they're anxiously taking my message to the highest levels so they can make an immediate editorial decision about whether to remove the pejorative term "Yuppie Flu" from their article. HAHAHAHAHAHAHA just kidding.
     
  19. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    I don't like to think of you stuck in a Yank Filter, urban! :eek:

    I suspect "highest levels" = "lunch break" (it's 1pm here in the UK).
     
  20. Morgaine

    Morgaine

    Messages:
    37
    Likes:
    14
    Good comments Sasha & Laurie, I've green arrowed them both!
     
    Francelle likes this.

See more popular forum discussions.

Share This Page