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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. Part 1 of a 2-part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS. Part 1 focuses...
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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. free at last

    free at last Senior Member

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    Hi everyone this is my first post, Was diagnosed with ME around 94 if i remember, i sat in a room with the oh so biased prof, when i was a very ill young man, He listens a lot, but realized years later he had corks stuffed in hes ears.

    He hasnt taken them out since from what i read about him. And i really thought at the time he was my friend. ( bet he makes all hes patients feel that secure ) only years later did i come to realize he just stabs them in the back when they leave. theres words for people like him, most not printable here but c??? you get the picture. ohhh a extra letter on CFS nope wrong word he he.

    what goes around comes around, And i hope judys research destroys hes career. Go judy. I will be part of the WPI UK study i hope soon, and if i test positive thats one more nail in hes coffin, every positive result judy uncovers in this country, is one day closer that this man will pay for all the hurt he has done to so many terribly ill inocent people. As far as i know theres 8 nails in hes coffin already, and it wont be long before hes career is truly buried. Anyone want to give hes career a last sermon. Sorry to sound so angry everyone, but back then i really needed help, and i got him, thats scarier than the illness, and i was terrified with the illness, truly traumatized. So thanks Simon you really helped. I have a feeling the WPI really will change the world veiw on this. I hope with all my heart. No more deaf ears for the scared and sick
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Welcome, freeatlast, thanks for sharing your story with us.
    I think of your story and it sends chills down my spine. I've had bad doctors and then sought out the best here in Colorado and they turned out only to be mostly disappointing. But to have Dr. Wessely as your personal doctor pretending to listen to you and care for your health..God. I get the image of that other wonderful psychiatrist, Hannibal Lecter or Dr. Mengele as your primary care doctor. Glad you're still here to tell the tale.
  3. Marco

    Marco Old blackguard

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    I'm not French but I do live here. I've mentioned before that when I first met my GP he stated that In France 'we don't believe in this disease'. From this I took him to mean that there is a high level of scepticism or that they don't believe it is organic. Not too different from the UK then. There are however patient and advocacy groups for the Syndrome de Fatigue Chronique (no prizes for guessing that one) and reference is also made to Encphalomylite Myalgique. See this link :

    http://www.caducee.net/DossierSpecialises/neurologie/fatigue-chronique.asp

    Which contains this statement :

    'L'encphalomylite myalgique a t rapporte dans de nombreux pays, sur tous les continents.' ME has been reported in many countries on every continent.

    At the end of the day France is also a signatory to the WHO classification, therefore they can't just 'not have' ME/CFS.
  4. Marco

    Marco Old blackguard

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    Figures for France

    150 000 personnes concernes en France

    Le Pr. L.A. Jason2 confirme en 1999 cette raret des vritables syndromes de fatigue chronique. Aprs enqute conduite sur 28673 individus, les investigateurs de cette tude ont considr que :

    32 personnes seulement prsentaient un syndrome de fatigue chronique correspondant la dfinition amricaine ;
    45 prsentaient une autre forme de fatigue chronique inexplique ;
    Et 89 prsentaient une fatigue secondaire une maladie authentifie.

    Au total, les donnes de la littrature scientifique laissent penser que la frquence du syndrome de fatigue chronique se situe entre 0,2 et 2,6 %. La fondatrice de l’Association franaise du syndrome de fatigue chronique et de fibromyalgie, Mme Annick Lalanne, cite un chiffre de 150 000 personnes touches par ce syndrome dans notre pays. Nanmoins, il est difficile d’avoir une estimation exacte, car on manque en France d’tudes pidmiologiques sur ce thme. Ce syndrome est longtemps rest ignor des mdecins et cette mconnaissance a pu entraner de frquentes erreurs de diagnostic.

    In summary, estimates of the prevalence of ME range from 0.2 to 2.6%. The French CFS/FMS association claim a figure of 150,000 sufferers in France.
  5. starryeyes

    starryeyes Senior Member

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    Thanks very much Min for this and the other link. How horrible of Crippen. How ironic that he gets paid when we click on his site. I won't Google him then, I take your word for it.

    Don't worry UK, the WPI has your back!

    Thanks Esther, no need to post it. I know you all are telling the truth about this.
  6. Countrygirl

    Countrygirl Senior Member

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  7. willow

    willow Senior Member

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    I have a different story.

    I was in contact with a Brit Ex pat who lived in Central France. In the Uk her dx was ME/CFS, I'd say ME becuase there was a lot of neuro involvement. Her French optician said that her vision problems were neurological and not correctable with glasses. Within 3 days her neurological referal came through and she was in hospital for a full range of tests. I think she had to pay for some of these but they were really inexpensive compared to the UK. I think her MRI was around 75... a few years ago.

    She was diagnosed with inflammation of her CNS and treated with IV steroids. Not i know this is a really bad idea for many of us, immune-wise, OP etc but the short course worked really well for her and she got significant, sustained improvements.

    She also said that everyone treated her very well, never doubted her or the seriousness of her symptoms, and were highly motivated to treat her.

    Makes treamnet of PWME sound patchy, or was it the optician's referral that made the difference?

    I've heard French parents of children on the Autism Spectrum how their children are treated by the French systems, and various stories of who dyslexia isn't taken seriously.
  8. Min

    Min Senior Member

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    I sent his quote to the Association Francaise du Syndrome de Fatigue Chronique et de Fibromyalgie when he made it. Their answer was that they most certainly do have it in France, 'and more and more chilkdren'.
  9. flex

    flex *****

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    Wessely loves to play around with terminology. "They don't have CFS in France". Is that because they call it Syndrome de Fatigue Chronique. So that would be SFC presumably, which he would take to mean southern fried chicken, I imagine. The French have since countered that they dont have southern fried chicken in France because they call it poulet de Nice.

    I looked a bit further into this and was shocked to find that they don't have apples in France. They have pommes. They don't have French fries they have frites. They don't have tables they have.....tables....... but they say it with a French accent. I was amazed to delve deeper and find that they don't even have French people in France but they do have les francais.


    Such weird cultural differences!!! :rolleyes:

    I can just see him in France with his handkerchief on his head and a whited out sunblock nose going round talking slowly and abruptly in English saying "where is the CHRONIC ...FA ...TIQUE SYN...DROME ..SIL VOO PLATE.
  10. Adam

    Adam *****

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    Vive le France

    The imagery is just too much Flex. Don't know whether to laugh or cry?
    Will be having nightmares though. - SIL VOO PLATE

    :tear::tear::tear::tear::tear::tear::tear::tear:
  11. dsdmom

    dsdmom Senior Member

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    Flex, thanks for the laugh!!!
  12. Koan

    Koan Be the change.

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    Flex,

    :D :tear: :D :tear: :D :tear:

    Koan
  13. flex

    flex *****

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    Latest just in from the Wessely school:

    North Italians cause CFS by sucking to hard on long spaghetti,
    whilst in the south the cause is the shock element to the upper lip whilst refusing to allow the cheese on your pizza to cool down before you take a bite.
  14. jackie

    jackie Senior Member

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    Flex - Dysopilant!:Retro wink: Dolkomisch!:rolleyes: Ilare!:D Ausgelassen!:tear: Vergnygt!:DHILARIOUS!:tongue: (...in ANY lanquage!)

    It just gets better n' better!:Sign Good Job:


    j
  15. gracenote

    gracenote All shall be well . . .

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    Did someone say spaghetti?

    [​IMG]
  16. maryb

    maryb iherb code TAK122

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    I only came on for a quick browse before bed - now I'm crying laughing:tear:
    thanks for that flex
  17. fingers

    fingers Senior Member

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    SW Endland
    Caption Competition Entry no.1

    You've opened up a can of worms this time, Judy. I hope you're going to compensate me for my lost pension.
  18. Koan

    Koan Be the change.

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    Caption Competition Entry no.2


    ..........
  19. gracenote

    gracenote All shall be well . . .

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    Santa Rosa, CA
    Caption Competition Entry no. 3

    I want my 'hysteria' back!​
  20. sproggle

    sproggle Jan

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    Your always on the ball ME Agenda. Relieved to know he's no longer inflicting himself on patients. Wish the possible political differences were the other partners wanting nothing more to do with him -can but dream!!

    As for politics OMG! :eek: :eek:
    Can someone get him interested in gardening or DIY or something I'm really scared!!

    Now hiding under the bed....

    P.S. Really gutted he hasn't got his full pension poor chap! :tear:
    Jan xx

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