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Horrifying article in Sunday Times

Discussion in 'General ME/CFS News' started by MeSci, May 5, 2013.

  1. Gypsy

    Gypsy Senior Member

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    "In America, where ME extremism is even more virulent, doctors have been hounded out of their jobs."

    I'm sorry, but WTF???? There is no ME extremism I have ever come across here!
    Granted, during the XMRV debacle I am sure quite a few things were said to researchers with dissenting opinions, but please someone enlighten me to the "ME extremism" that is happening in my country. It is NOT happening because patients here are NOT (for the most part) treated the way they are in the UK. This disease is widely accepted as a real physical illness here.

    And why is the press/media so obsessed with ME in the UK anyways? Is the press an extention of the NHS?

    And isn't it curious that CFS is RARELY covered in the press in America, where as it is CONTINUALLY covered in the UK? Hmmm...and where are patients treated better?

    "The lady doth protest too much" We get your opinion already. Move on.
  2. Kina

    Kina Moderation Team Lead

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    I found those comments to be confusing too. Hanlon mentioned Reeves and he seems to equate extremism with anybody disagreeing with the premise that ME is psychological. Basically, if you make any comment that ME is not psychological, you are an extremist. I am not aware of any faction in the US that is 'extremist'. I am aware that all of us don't appreciate that Reeves equated ME with stress. Speaking out with disagreement is not 'extremism', not even close. I remember what went on with in eighties with AIDS before it was called AIDS. It wasn't extremism, it was about the correct classification of a disease.

    I noticed that Hanlon really didn't back up his statements about extremism in the USA with any proof. It's shoddy journalism to the max.

    Mike Hanlon -- if you are reading comments on our forum. Please contact me, I would love for you to answer some questions here. Let's have a mature discussion about what's really going on. Do you want to hear from some real patients who aren't extremists. Come on then -- let's have a chat.
  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    The UK's Establishment is desperately trying to cover up some huge and horrible crap
    a whole load of "cans of worms" are coming to the surface whether they like it or not, whether they cover up lie and fudge or not.
    last thing they'll want is another scandal at the same time, so as usual they'll sacrifice someone to appease "The Mob".
    elbosque likes this.
  4. biophile

    biophile Places I'd rather be.

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    It is not paranoia if they really are watching you! I wonder if they have SilverbladeTE's bare Scottish arse on file too?
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Biophile
    I fart, loudly, in their direction, too!! ;) smooning_smiley_mooning_100-109.gif

    Never found being polite or nice to bullies, does any good.
    And that's what they are.
    peggy-sue and jimells like this.
  6. Kina

    Kina Moderation Team Lead

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    I can just see the headlines tomorrow -- "ME patients are contributing to global warming, Wessely and his cronies are forced to add air fresheners beside their panic buttons". :D
    peggy-sue, taniaaust1, MeSci and 4 others like this.
  7. Esther12

    Esther12 Senior Member

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    I bet that those dangerous militants are co-ordinating, and keeping lists of those they do not like - it's a fearsome conspiracy of sick and disabled people, targeting some of the most powerless people in society (Sir Wessely, White OBE, Sir Aylward, etc). Luckily, a brave crusading journalist like Hanlon is willing to fight in their corner, and provide a voice for those who are normally just cast aside. This would make a great movie.

    lol at them keeping a list of active activists. ("It's really harassing... I have to keep making lists of people who haven't done anything wrong... they're making me do it to waste my time...") I wonder what one has to do to be classed as 'radical' or 'militant'? Make an FOI request? Ask a question, which they then choose to class as an FOI? Does one get a badge for moving up a slot?

    Thinking of them having an 'active' category is really giving me some good giggles. I'd love to know the details of this list, who kept it, and who decided which name went where. What utter screw-balls.
  8. Sean

    Sean Senior Member

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    'active'

    Oh the irony.
  9. Gypsy

    Gypsy Senior Member

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    The thing is, in America patients are advocating for treatment and further funds for research into a disease that has already been accepted by the vast majority of physicians as being a genuine physical illness. We advocate for further testing into subsets of this disease. Identifying pathogens, problems with the immune system, hormonal systems, sleep dysfunction, so on.

    In the UK, they are still having to advocate that this IS a real disease.

    How can these two countries STILL be so far apart? Is it simply because of the huge difference in the healthcare systems?
    elbosque, beaker, Enid and 1 other person like this.
  10. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Hey if used a match and...hm, would that qualify as a Weapon of Ass Destruction? :p

    Arise ye downtrodden ME masses!
    Ye have nothing to lose but your asses!
    So lift yer Khybers up high, expose the passes,
    And fire off mighty, thunderous gasses!
    :D
  11. alex3619

    alex3619 Senior Member

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    Well I had a blog showing how the UK disabled could take down the government peacefully. It was:

    http://forums.phoenixrising.me/inde...fists-version-of-a-nuclear-hand-grenade.1045/

    This would make me a militant? Despite that I was calling for peaceful protest not unlike the "Arab Spring" if the number dying from UK government policies got to a ridiculous level and no legal or other social recourse (e.g. petitions) was working? Or would it make me a radical? I can hardly be an activist because, well, I struggled just to get out of my unit today, and struggled harder to get back. I don't march, or engage in violent behaviour or threats of violent behaviour. Instead I emphasize reason and compassion - either of which appears to be lacking in the whole ATOS saga.

    If Syria kills thirty people, ghast, NO, atrocity! It would not surprise me if the UK disability policy results in the deaths of that many every week, and yet there is not a boo from most people. Its just business as usual. The UK is an ongoing Syria atrocity with regard to the disabled, including the masses of people who are terrorized by their own government. Didn't a UK government spokesperson at one point say that governments in the Middle East who kill that many people lose their legitimacy?

    So I am speaking of atrocity, use of terror as a state policy and total disregard for the mounting death toll: but its not me promoting this but current UK disability policy. I am simply wanting them to stop.

    PS Or would all this make me Darth Alex to some, Jedi to others? :p

    PPS In case anyone missed it, the PR blog is a copy of something I posted in the UK.
  12. Valentijn

    Valentijn Activity Level: 3

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    ME patients are either passive or active (psych) cases according to Dutch CBT ... from what I recall, you go in the "active" category if you crash regularly. Nice of "them" to keep a list :D
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I'm afraid you are right, Alex. There seems to be a self-reinforcing cycle of 'dumbing-down' in this country, not least in the field of science. For example, producers seem to have forgotten that one of the founding principles of the BBC was to educate, and instead appear to target their programmes at the least-educated people for fear of going over their heads, so that whole half-hour 'science' programmes will often consist of one elementary fact padded out with a lot of repetition, waffle and silliness. This kind of approach also dominates other media. People are in turn influenced by it and become even less inclined and able to think.

    It is also the case that both the printed and broadcast media almost always focus on extremes. For example, they will not want to report that thousands of people marched peacefully through London or signed a petition with reasonable, carefully-drafted demands, but they will almost salivate with delight at a few bandwagon-jumpers who set fire to something. As a result the important messages get completely lost.

    I find CNN and Euronews refreshing in contrast, taking intelligent, in-depth looks at issues. Shame about all the ads...
  14. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    LOL :lol:
  15. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Maybe all us 'activists' in the UK need to submit FOI requests to ask whether we are on any of the lists held in relation to ME 'extremism'...
    elbosque, Bob, biophile and 1 other person like this.
  16. user9876

    user9876 Senior Member

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  17. snowathlete

    snowathlete

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    This article is so unbalanced and suggestive that I wonder if it would constitute incitement to hatred.
  18. Yogi

    Yogi

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    Sonia Poulton (journalist) is responding to him. Here is his Twitter a/c.

    https://twitter.com/WesselyS

    She is such a dangerous militant activist and I hope MI5 and Scotland Yard sort her out for abusing and terrorising our poor victimised Simon Wessely for daring to question his authority with such questions!!!!!:rofl:
    MeSci and Valentijn like this.
  19. Sasha

    Sasha Fine, thank you

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    Just looked at Sonia Poulton's twitter account:

    https://twitter.com/SoniaPoulton

    and she mentions an ME CFS Patient Perspective questionnaire at 2:41 am on 5 May and a bit later, says that she's loving the responses - I'm no Twitter expert, can't provide a link, sorry.

    Does anyone know what questionnaire she's talking about?
  20. Bob

    Bob

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    Sasha

    Here are Sonia's Tweets re a questionnaire:
    https://twitter.com/SoniaPoulton/status/330980468960923648
    https://twitter.com/SoniaPoulton/status/330992136713539584
    https://twitter.com/SoniaPoulton/status/330983474070708224

    She is proposing a "Patient Perspective" questionnaire about the "lived experiences" of ME patients and loved ones. I think it would be as a media project.
    When she talks about 'loving the questionnaire responses', she's talking about the responses to her proposal, not the responses to the questionnaire, as she hasn't created it yet.
    Valentijn likes this.

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