1. Patients launch $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!
Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
Discuss the article on the Forums.

Today's article in the Observer.........UK police and Wessely consider us 'dangerous!

Discussion in 'General ME/CFS News' started by Countrygirl, Aug 21, 2011.

  1. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Aah such a genius to inflict on the unwell.
  2. Merry

    Merry Senior Member

    Messages:
    1,357
    Likes:
    607
    Columbus, Ohio, USA
    Within the last couple of weeks I heard a story on public radio about a British journalist who was trying to research the Jack the Ripper murders (1888) but was stymied because the government has ruled that 900 pages of documents must remain sealed.

    Then an American investigative journalist, presently working in the UK, was interviewed. She said that investigative journalism is difficult to pursue in the UK because of a weak freedom of information law and because of what she called "the system of deference." She said that people in power are insulted at the very idea that they would questioned by "the proletariat."

    By the way, a few days ago I emailed the Science Media Centre to ask them to explain their relationship to Simon Wessely, but they have yet to respond. Looking over their website was eye-opening: so many corporations fund this "charitable organization," which apparently has great control over what science information gets to journalists and to the public.

    Correct me if I've misunderstood the role of the SMC or if you don't agree about the ability of investigative reporters to do their job in the UK. Thanks.
  3. Dolphin

    Dolphin Senior Member

    Messages:
    6,726
    Likes:
    5,580
    Reminder about letters

    Not sure which day the Observer will sort out its letters page e.g. Thursday or Friday (maybe it says when to get letters in in the paper?), but best to get letters in in next 24-48 hours (24 hours probably best): letters@observer.co.uk

    This is a time when getting a chance to complain about some aspect of ME (or ME/CFS or CFS) is on topic for a national letters page. Even if your letter doesn't get published, it might persuade them to publish another. Possibly best not to name individuals as it might increase the chances they won't publish it.
  4. kday

    kday Senior Member

    Messages:
    260
    Likes:
    48
    [​IMG]

    Anybody think he just looks plain evil?

    Perhaps as not crooked as Cheney.

    [​IMG]

    He seems that he has tried hard to correct his crooked grin of the past. Does anyone know if he has a bit of down syndrome?

    [​IMG]

    Hehe, I am just entertaining myself. :D
  5. Battery Muncher

    Battery Muncher Senior Member

    Messages:
    211
    Likes:
    211
    I think there's a lot of truth in that. There's been a lot of furore over our outrageously strict libel laws in the UK. Given the amount of proof you need, it's hard to write any real cutting-edge journalism. Technically, things that are in the 'public interest' should be protected (e.g exposes of psychiatric bull regarding ME!), but the reality is different.

    Having said that, there's now so much public support for libel reform that things might change.....ok, that's a lie - nothing ever changes. But still. You have to hope.

    Also, the bit in bold does not surprise me. Our class system is deeply entrenched, and denial over this means change is unlikely anytime soon ("we're all middle-class now..." screw you Tony Blair!).
  6. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    266
    Long Beach, CA
    So if Wessely et cronies get to describe ME/CFS patients in the press using rhetoric generally reserved for terrorists ("militants," "attacks," "death threats," "dangerous," "extremists," "violence," "horrible abuse," "hate campaign," "crazy"), then is it only fair if we get to compare him to Moammar Gadhafi? Sensing that the game is up, he becomes increasingly paranoid and irrational, unpredictable, disconnected from reality, willing to cause untold suffering to preserve his sphere of influence...
  7. SOC

    SOC Moderator and Senior Member

    Messages:
    5,298
    Likes:
    6,283
    USA
    Excellent observation, ix. The parallels are remarkable.
  8. moblet

    moblet Unknown Quantity

    Messages:
    234
    Likes:
    129
    Somewhere in Australia
    I fully agree that many extremists are irrational, but to publish such an article with no balancing input from any of these unidentified extremists, or sufferers generally, is not journalism.

    No, it only drives away those scientists who want to advocate particular belief systems as science.

    OK, well it's nice to know that neither of the following harm society:
    - Allowing the formation of a group of people who have little to live for, then aggravating them by injustice
    - Giving equal weight to scientific investigations asking "what is the best way to help these people?" and "can we get approval to apply this treatment or sell this drug?"

    Ironically, I suspect many patients are probably safer in Afghanistan and Iraq, too.

    :thumbsup:
  9. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    441
    Likes:
    450
    Illinois, USA
    Now, in Times Higher Education, charges are in plural.

    "The militants, who object to any suggestion that the illness has psychological causes, have turned up at lectures with knives, punched scientists in the street and issued death threats, it was reported on 21 August."


    http://tinyurl.com/3cwvbtd


    Note the lead cartoon with the "I'd terrorize an M.E. scientist but I'm too tired"


    How much worse is this going to get? I remember how horribly AIDS patients were treated early on.
  10. Battery Muncher

    Battery Muncher Senior Member

    Messages:
    211
    Likes:
    211
    Ha! Good point!
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,270
    Likes:
    5,482
    We (CFS patients) need to be more sleazy and manipulative in the way we present ourselves.

    A lot of the comments beneath recent articles aren't going to do us any favours, even though I agree with a lot of them. Wessely is great at coming across well, being charming, and avoiding drawing attention to any of his beliefs which may be controversial. Most CFS patients (myself included) aren't - we're too angry about the way we've been treated. This just plays in to the prejudices of others.
  12. Nielk

    Nielk

    Messages:
    5,249
    Likes:
    5,192
    Queens, NY
    Being from the U.S., I am not so up to date with the whole Wessely history. Lately, I have been paying closer attention to his behavior.

    As kind of an observer looking in (of course I can't be impartial - after all I am also sick), He really sounds like a real sicko. I can't believe that people, even in the UK, take him seriously.

    Why do you think he has this agenda against us? He is putting way too much effort, time and energy in degrading us. Why?
    By why, I mean why us? There has to be a reason. This hatred of us didn't come from nowhere. Tyrants, using use their victims because of a reason. It might not be a rational reason but, in their warped mind, it makes sense.
    Does anyone know when all this started or what his "real agenda" is.

    To be able to take on the enemy, one needs to know facts about him and why he is doing what he is doing. Or, is it just that he is a bigot and blindly just picked us to attack?
  13. Esther12

    Esther12 Senior Member

    Messages:
    5,270
    Likes:
    5,482
    I don't think Wessely started out wanting to attack us. As a massive simplification: I think he genuinely thought that ME was some form of social hysteria. With hysteria, the best treatment is to tell patients it's just a psychological problem, and encourage society to be unconcerned by the reported symptoms. He gained a lot of influence when he was totally wrong, and has been trying to cram new evidence into his old theories since then. eg: He thought that "post-viral" fatigue syndrome wasn't really post-viral. When he found out it was, he ended up claiming that it didn't matter anyway.

    Surely, at some point he must have realised that he has done more harm than good. I really don't know though, and think it's quite possible that he believes he's done a lot to help patients. He may even believe that the only reason he's so hated is that he's a psychologists, rather than because of the string of errors he has made, and the impact that has had upon patients.
  14. Min

    Min Senior Member

    Messages:
    1,196
    Likes:
    1,236
    UK
    - & the Camelford water poisoning was also 'mass hysteria' according to him - oh, and Gulf War Syndrome - oh whoops a daisy, anyone could make a mistake or two
  15. moblet

    moblet Unknown Quantity

    Messages:
    234
    Likes:
    129
    Somewhere in Australia
    I'm a total outsider too, never heard of the guy until a couple of months ago. My theory is he's an attention-seeker. He would have been drawn to ME because solving it could have made him famous, and his theories on ME are basically that those who claim to have it are just attention-seekers themselves, which is what you'd expect an attention-seeker to assume. Of course he's failed, and knows that he's failed, but no attention-seeker can admit that and quietly move on, can they?

    The entirely unsubstantiated claims made in this article seem to me to be primarily an effort to (1) paint the researchers as heroes and (2) discourage other scientists from trying to solve ME. There could be a very primal reason behind this: we failed, and it would be best for our egos if no one else succeeded.
  16. markmc20001

    markmc20001 Guest

    Messages:
    877
    Likes:
    80
    I was wondering the same thing. It's pretty safe to say is somebody is paying him to do it. I'm sure Wessley is perverted, but everybody needs to make a living some how. Be hard for him to do what he is doing for all these years without some kind of government support.



    I think there are two AT LEAST two objectives to the governments maddness(with influence from big business):

    1) Paint ME as CFS, to avoid paying disability insurance or SSDI. Make it impossible to diagnose properly, hence impossible to find treatments for. Don't you know we would have working medications/treatments by now if the disease was recognized for what it is?

    2) Make the solution for all the various unknown illness prescription medications. Better yet, make it a psychological illness that can't be measured and benefits can't be measured. They have turned ignoring a severe illness into a cash cow by mandating the craziness through the CDC's treatment guidelines.


    The USA essentially does the same stuff as the UK, but can't be so obvious because of an illusion of democracy in the USA.(any lever can be pulled in the USA these days, it is just done very discretely compared to that blatant disregard in the UK)

    Just look at the recent article/video in the rolling stone Illustrating how levers are pulled in government. He essentially makes it evident the SEC
    (agency that regulates the banks) is working the same way the CDC has worked, with control by big business.(ie Merck)

  17. Nielk

    Nielk

    Messages:
    5,249
    Likes:
    5,192
    Queens, NY
    So what it comes down to: the usual - money corrupts.
    Follow the money trail.
    If someone could uncover Wessely's ties to either government or insurance agencies, that would be the end of him.
    Like I believe someone else mentioned on a post - we need an investigative reporter to look into this.

    I am not surprised at all about the SEC actions. There is so much money involved here is indecent. The more money -the more corruption.
  18. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
  19. Ian McLachlan

    Ian McLachlan

    Messages:
    26
    Likes:
    32
    Not fogetting the lack of safeguards being in place to be able to alert and protect. Not just one man at fault here: it's a complete systematic failure.
  20. Guido den Broeder

    Guido den Broeder *****

    Messages:
    278
    Likes:
    180
    Rotterdam, The Netherlands
    The money trail of this character was discovered years ago. It leads straight to UNUM.

See more popular forum discussions.

Share This Page