1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.

UK Media coverage of NIH/FDA paper

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Rrrr, Aug 24, 2010.

  1. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    New Scientist

    Just found out from their reply email that the limit for letter publication is 250 words! :eek:

    I scoured their 'Advice on Letters to The Editor' page before sending but couldn't find it - but I did include my address, tel no etc.

    Oh well, even if they just read it that is a step forward.
  2. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    aaargh, meant to put 'yours faithfully' at the end! Never mind.
  3. Sherby

    Sherby Sherby

    Messages:
    91
    Likes:
    0
    London UK
    Simon Wessely -Science Media Centre

    It has been mentioned by various PR members that the CFS/ME UK news articles that journalists reporting about CFS go to The Science Media Centre for professional guidance.
    I wasn't sure if that was strictly true. A quick Google found there site and found listed
    Professor Simon Wessely Institute of Psychiatry, King’s College, London. Was thinking that maybe someone might be interested to contact them to find out what is the delay regarding publication
    of the Alter paper in the UK press.
    I would contact them but do suffer very bad cognitive skills and make a mess of it.

    http://www.sciencemediacentre.org/pages/about/sap.htm

    Any takers
  4. Sasha

    Sasha Fine, thank you

    Messages:
    7,382
    Likes:
    5,198
    UK
    Alter paper in The Guardian via sneaky comment on STD article (!) - add comments!

    (Sorry for cross-posting: I put this earlier on the international media coverage thread).

    A resourceful person has managed to get an informative comment about the Alter paper and its implications for the UK blood supply and CFS, plus criticism of The Guardian for not covering it, on an article about STDs in England. Here's the link to the article; it's the fifth comment, by "tomstones" (who appears from his avatar to be Woody Allen, in fact).

    Click his "recommend" button, my friends! Very creative, that man!

    [Since I posted that, other people have added comments - you have to register. But people are asking questions in their comments so it's clearly being read so worth adding your own. I suggest be polite but ask why The Guardian isn't covering the big story - retrovirus very likely in the UK blood supply. Let's not give The Guardian ammo for labelling us as ranty nutters (again).]
  5. Sasha

    Sasha Fine, thank you

    Messages:
    7,382
    Likes:
    5,198
    UK
    Oh, bummer! You wrote a good letter.

    Why not edit it down to 250 words and send in the new version?
  6. Sasha

    Sasha Fine, thank you

    Messages:
    7,382
    Likes:
    5,198
    UK
    Just added my own comment. It's v. easy to register - just the usual, you give your email and they send you a link to click to confirm your ID.
  7. filfla4

    filfla4 Senior Member

    Messages:
    210
    Likes:
    106
    Yup...I'm one of them! :)
  8. Sasha

    Sasha Fine, thank you

    Messages:
    7,382
    Likes:
    5,198
    UK
    I see you - great post! There are 19 comments on that thread now - no one is posting about STDs any more, it's all about MLVs and the Alter paper.

    What a farce that we have to comment on an article about VD to get ourselves heard, but at least we're on there. I'm very impressed by the quality of the comments as well - no angry ranting from PWC (which, though understandable when it happens, makes us look bad) and no horrible stuff from trolls. Just good, clear, informative posts that tell people there's an important story being missed and what they need to know.

    Well done to everyone who has posted on there, I really think it's a credit to us.
  9. Sasha

    Sasha Fine, thank you

    Messages:
    7,382
    Likes:
    5,198
    UK
    Comment opportunity in the Daily Telegraph

    Oh! I see that the Daily Telegraph have covered the same STD story as the Guardian and are also allowing comments. Again, you have to register. Here's the link. Though they already have 14 comments on the STD story itself including some rather unpleasantly intolerant ones so we may be in for a rough ride on there...
  10. TomStones

    TomStones

    Messages:
    20
    Likes:
    1
    Hi everyone. I've been lurking on these boards since the rumour broke about the Alter paper some months ago. I finally decided to post because someone said i was a clever man. :)

    Anyway, i've tried to pretty much highlight the importance of the Lo/Alter paper in the Guardian and hope everyone else will too. I'm lost with the science and can't explain at all quite what is going on so i will have to leave that to others to try. I'm heartened to see that others have added their own insightful comments and saddened that we are having to hijack other discussions just to get the point across but xmrv and mlv may prove to be a huge sexual health issue so it seemed apt. It's just a shame i never pickes up the PNAS joke in that context :)
  11. OverTheHills

    OverTheHills

    Messages:
    267
    Likes:
    156
    New Zealand
    Sing when you're winning, you only sing when you're winning....

    Or "its all gone quiet over there"

    In the UK there is a fine history of football chants, I'm no fan of football but some of the songs are undeniably witty. As they put it in wikipedia http://en.wikipedia.org/wiki/Football_chants

    "Traditions vary from country to country and from team to team, but they are generally used either to encourage the home team or slight the opposition"

    "Also the stinging observation of opposition fans stunned into silence:You're not singing anymore!"

    Well, there may have been nothing published about the Alter paper in the UK, with the exception of the Daily Mail Online,and that situation is dreadful. But it seems to me Weasley and friends haven't rushed to press with their smug quotes. Myra (doen't know when to stop digging) McClure is the only one I've noticed.

    They may be plotting in Mordor and about to unleash some more vile prejudice but at the moment, I can't hear the opposition. Perhaps its taking them longer to work out something plausible for the press given Alter's reputation and everythin'.

    I can hope anyway.

    OTH

    PS Well done again Tom, have some more praise
    PPS my thyroid has gone completely hyper (autoimmune). Having that with ME is like being in a car with your feet down hard on brake and accelerator at the same time. Excuse me if this is incoherent ....how long do the drugs take to work? :eek:
  12. gu3vara

    gu3vara Senior Member

    Messages:
    332
    Likes:
    43
    I know what you mean, I had iatrogenic hyperthyroidism (way too much Armour thyroid in a desperate attempt to find out if my symptoms were cause by thyroid resistance : NOT!!!) and it's truly horrible to mix hyper and CFS, I hope it resolves quickly for you. I have no idea about how long those meds for hyperthyroidism take to work.
  13. TomStones

    TomStones

    Messages:
    20
    Likes:
    1
    There is an old John Pilger story he tells about meting a group of Russian journalists after the fall of the Soviet union. The Russiians make the point that in the old Soviet Union it took a huge and brutal police state to get the old Soviet press to all print the same fictions and to try and convince the general public to believe the lies yet in the UK all the news papers some how managed to be coerced into the same stories as each other and basically singing from the same hymnsheet. I wonder if there are restraints being put on our media just now. Are the old DS notices being handed about or are the UK press once more self censoring itself?

    I find the McClure stuff fascinating as i think she was involved in the work that rubbished/buried the work of Dr DeFreitas et al 20 years ago. Is she worried about something in her past coming back to haunt her perchance? Maybe she is the sacrificial lamb to asuage the anger of the patient community. Are there people who are not sleeping easily because they fear the due process of law?

    I see the football point in the football reference since most of these media outlets have been singing whilst the Wessley school were winning but ...late new reaching us .... m.e/cfs patients have scored a late equalizer. The question then becomes: Can we go on to score a winner? We need the fans behind us if we are to do this.


    Excuse gibberish and poor spelling. The medication for trigeminal neuralgia makes you blather on a bit.
  14. OverTheHills

    OverTheHills

    Messages:
    267
    Likes:
    156
    New Zealand
    Tom ...hmm.....Why Why WHY Myra (to the tune of Tom Jones 'Delilah') - good tune, popular with crowds, could be CFSers anthem of the week.

    gu3vara it takes 2-3 WEEKS for the meds to take effect and I started them today. In other words I am stuck as a babbling insomniac for a while. Earplugs anyone?

    OTH
  15. TomStones

    TomStones

    Messages:
    20
    Likes:
    1
    My meds have the same insomnia inducing properties as well as the babbling. 15-20 hours of sleep per week over the past 3 months has certainly robbed me of some of my coherency.

    I've tried to drum up more support on this thread

    http://www.guardian.co.uk/commentisfree/cartoon/2010/aug/27/cartoon-bluelou-cameron-daughter-nadir

    I think the original sexual health thread will be due to close soon and so i think it's worth trying to keep the discussion going until the Guardian actually cover the subject themselves. I wonder just how much the Guardian is influenced by the Britidh Medical Journal(BMJ. There are numerous links to the BMJ articles in the Guardian and i just wonder if they get their medical information through the BMJ. THe BMJ appear extremely hostile to M.E/CFS patients as shown once more by the recent editorial featuring Simon WEssley and Myra McClure.

    ''Oh what a tangled web we weave when first we practice to deceive''
  16. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    Idea for people too sick. Copy the best article and hang it up in libraries, food stores wherever you have local bulletin boards there, or on a tree or lamp post in the middle of nowhere. Add your own headline-
  17. Rrrr

    Rrrr Senior Member

    Messages:
    1,390
    Likes:
    243
    well, the UK is lagging far behind the US in media coverage of the NIH/FDA/Harv paper, but is WAY AHEAD of the US on banning people with ME/CFS (currently or in the past!) from the donating blood front. the US is only "discouraging" blood donations from people with current ME/CFS.

    congratulations all UK ME/CFS folks! this is indeed a big day.
  18. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    Edinburgh Evening News - Fri 27th Aug. 2010

    Posted on the MEA site from the Health pages of the 'Edinburgh Evening News'

    http://www.meassociation.org.uk/ind...-news-27-august-2010&catid=30:news&Itemid=161

    Most of this is a personal ME story about one woman's struggle with the illness, but about 7 paragraphs up from the end is a reference to the Alter/Lo MLV discovery.

    "The causes of ME - also known as Chronic Fatigue Syndrome - are unknown, but earlier this week scientists in America revealed they had found evidence of murine leukaemia virus - known to cause cancer in mice - in 86 per cent of sufferers.

    Some believe it is caused by a persistent virus which the body's immune system can't fight and that certain people are predisposed to developing it".


    Interestingly this lady had Glandular fever during a stressful period in her life, but it was an Hepatitis B virus vaccination in addition that sent her over the edge.
  19. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    I think its working Tom - check this out from Thursday (presumably shortly after the article you quote above):

    http://www.guardian.co.uk/world/feedarticle/9237473?forumid=331851

    Its reported under 'Foreign AP/World News', not UK, but looks like we're gradually getting there.

    I wonder if they are aware of the decision announced on the same day by the UK Dept of Health to ban all blood donations from all UK ME/CFS patients, past and present (regardless of how they feel on the day)? Even the US hasn't done this yet.
  20. Sasha

    Sasha Fine, thank you

    Messages:
    7,382
    Likes:
    5,198
    UK
    Good catch, picture - interesting that it seems, from the language, to have been written by an American ("bug", "researchers said Monday" rather than "researchers said on Monday" etc.).

See more popular forum discussions.

Share This Page