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.

Wessely Says: Even if XMRV Causes ME, "There's Nothing We're Going to Do About it"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by justinreilly, Mar 9, 2010.

  1. starryeyes

    starryeyes Senior Member

    Messages:
    1,513
    Likes:
    4
    Bay Area, California
    Hi Esther,

    Glad to see your opinion here. I was amazed at the above. I've never seen that! Do you have a link(s)?

    tee
  2. Min

    Min Senior Member

    Messages:
    1,194
    Likes:
    1,224
    UK
    One of these is the UK's 'Dr Crippen' blog where the denigration and deliberate taunting of
    those with M.E., Lyme and fibromyalgia by NHS GPs is common. Another anonymous 'doctor' posting there on the thread about Lynn Giderdale was encouraging M.E. sufferers to commit suicide.

    I won't post the link as 'he' receives money each time anyone goes to the blog. 'Dr Crippen' also has a weekly column in the Guardian newspaper in which 'he' continues to denigrate us, and where 'he' has called us 'militant loonies'.

    ----------------------------------------------------------------------------------

    It's incredible that a psychiatrist can his views on immunology taken as gospel by medical authorities, but it saves the UK's National Health Service an awful lot of money. Are we going to end up the only country oin the world where supposed 'research' finds no XMRV?
  3. Esther12

    Esther12 Senior Member

    Messages:
    5,268
    Likes:
    5,479
    I did actually post a link to this, but it seems to have been lost in the forum upgrade. Maybe I shouldn't re-post if it will only add to his income.
  4. Min

    Min Senior Member

    Messages:
    1,194
    Likes:
    1,224
    UK
    There was also Dr Borigini's blog calling us 'Terrorists of Health' " in full jihadist mode, are trumpeting XMRV as being "proof" that the mystery of chronic fatigue syndrome has been found.":

    here's an indirect link that doesn't give him money via his blog:

    http://arthritisinsight.com/forum/forum_posts.asp?TID=24794
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Wessely says that we shouldn't be looking for the cause(s) of ME anyway.

    Wessely was not introduced as or speaking in the context of 'the psychiatric response to ME." He was speaking, as usual, as 'the expert on ME' in general and how to treat it. Specifically he was responding to a question something to the effect of 'why 'CFS' patients want there to be one viral cause and is this misguided?'
    He was responding that it's because it removes the 'psychological stigma' we have now. But that, just as 'we don't need to know the license plate of the car that hit you in order to treat you for a car accident, we don't need to know what, virus or otherwise, caused your 'CFS' to treat it.'
    This is a calculated campaign to isolate and subjugate us.
  6. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    It doesn't even hold up as a metaphor. You may not need to know the license number but you do have to be able to see the bloody car!

    Ohm!
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Exactly. I mean the cause of the injury would be important to treating someone who was hit by a car if there were psychiatrists saying the victim was not in fact injured, but instead is somaticizing. This would help with the decision as to whether to treat the injuries with psychological counseling or physical medicine.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    BMJ says Hooper's "Magical Medicine" is Defamatory

    I got an email from an editor at BMJ in response to my comment to Wessely's piece that I posted in my first comment on this thread. He took off a reference and link to "Magical Medicine". Because it is 'defamatory.' I responded in the email below, that he should then take down much of what Wessely wrote from BMJ.com.

    First the email to me from BMJ:

    My response:
  9. OverTheHills

    OverTheHills

    Messages:
    303
    Likes:
    257
    New Zealand
    ANd if you found a lot of people were getting injured in road accidents you might want to do something about stopping that - eg drunk drivers, speed limits etc.
  10. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    Or if that same car was continuing to run into you and then causing other cars to also run into you.

    (I may be s t r e t c h i n g this metaphor beyond the beyond!)

    It's one thing if the virus attacks and then is gone leaving damage in its wake. It's quite another if there is ongoing active infection (that creates vulnerability to other infections), that continues to cause symptoms. I don't think ME/CFS is the same thing as Post Viral Syndrome no matter how many times this gets regurgitated via the psychiatrists.

    Thanks justin. Not ignoring your emails. I appreciate your persistence. Would love to know if you hear back again.
  11. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    You go, Justin!

    Thank you Justin!
    Kudos to you Justin for an intelligent, necessary assault on BMJ's resistance of the "Magical Medicine" link. I'm really curious. Ostensibly the BMJ is about evidence-based medicine. So what part of exposing the fact, that a cadre of psycholobbyists, with abundant support by the UK government and insurance bodies, is denying hundreds of thousands of patients with a serious neuro-immune disease any substantive physical examination (much less treatment)- and is automatically recommending CBT/GET (a coping technique for mild ME/CFS AT BEST, and I'm being generous) - what part of this is NOT Magical Medicine?:eek:

    We've been "coping" for decades, as patients die of heart complications, opportunistic infections, and lymphomas...and as our lives wither away while we're bed and house-bound. It's time for some evidence-based, biological treatment!
    You GO, Justin!:Retro smile:

    BTW, I'm going in for my monthly hospital IV tomorrow. If anyone has the chance to transcribe the BMJ Wesseley podcast @ http://podcasts.bmj.com/bmj/2010/03/05/chronic-fatigue-syndrome, I think it might be helpful for future litigation and investigative journalism.

    Here's a mini-transcription...

    Wesseley:
    But what I think was unusual here was, in given the heterogeneity of CFS and its somewhat blurred boundaries (not if you use Canadian Criteria), the claim that theyd (Cleveland Clinic/WPI/NCI) found THE (Wesseley's emphasis) cause in the vast majority of patients they studied was always rather implausible. (Litigation right back atcha BMJ, that's not at all what the Science article said!)
    Interviewer:
    Its not the first time that a (his emphasis) cause has been suggested. And patients tend to want to cling on to that. Do you know why that is? (Um yeah, you troglodytes. It's because we want our health and lives back! Believe it or not, we WANT to be productive members of society, and don't enjoy being profoundly ill!)
    Wesseley:
    ...I think for some people however, any suggestion of a social or psychological component to illness there are some people who just do find that very stigmatizing, and really dont like that at all and would prefer for there to be a single, unitary, neat, simple explanation, preferably a viral or immunological something but Im afraid the world is a bit more complicated than that. (My heavens, is that man supercilious! Yeah Wesseley, it's so complicated that you make blanket prescriptions for ME/CFS patients - diagnosed with wooly criteria to ensure higher market populations - to get CBT/GET! And since when is immunology NOT complicated! This is hilarious if it weren't so tragic.)

    Seriously though - if anyone is able to transcribe that podcast, it would be GREAT!
  12. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    Parvo if someone transcribes it, will you add the commentary? I like your notes in parentheses.
  13. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    You're on, Gracenote!:Retro smile:
  14. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    I'm not offering to transcribe. I would if I could. Notice I said someone, meaning someone else.

    I'll be the cheerleader. Go transcriber(s), go! Rah, rah, rah.
  15. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I'LL DO IT, I'LL DO IT!!!

    Let me do it, please, oh please, oh please!

    Well, that's settled then!

    Mac and I are very happy to be of service.

    :victory:
  16. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I'M DOING IT!

    :victory:
  17. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    YAY Koan :victory:

    rah rah rah
  18. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    I meant Koan would do it. That's what I meant.

    Go Koan, go. Rah, rah, rah.

    And then tell us how MARVELOUS the experience was on your new MacBook. (And don't let Wessely get under your skin. We'll be watching you so you don't get sucked into the dark side.)
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)


    Thank you, Parvofighter. Yes, it sickens me that Wessely spews his harmful nonsense in 'respected' 'scientific' journals and then the people who are injured by it and point it out are accused of being defamatory. Our Constitutions protect free speech. Is this concept too hard to understand? These people didn't grow up in the Soviet Union so it shouldn't be that hard to grasp. By definition, the truth and opinions based on it are never defamatory, but some of what Wessely publishes sure is!
  20. _Kim_

    _Kim_ Guest

    Hold your horses little lady!! That podcast is 25 minutes long. That is WAY too much transcription for any one person here - new mac or not.

    You can do SOME of it, but let the rest of us help out.

See more popular forum discussions.

Share This Page