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New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
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Simon Wessley replies

Discussion in 'General ME/CFS News' started by maryb, Dec 12, 2012.

  1. justy

    justy Senior Member

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    Still on the videos -
    He works in a pub until 12 am, then stays up for a bit before going to bed. I can barely function after 8pm.

    If i stay up until 12 this is what happens to me - i get wired and my legs start twitching, then i get very cold and start shivering and shaking. My brain goes blank and i cannot hold a conversation. My joints ache all over. Once in bed if i dont warm up i will start to shake uncontrolably, me body temp will keep dropping and unless i have the heating on and a warm body in bed with me i will shake for hours. If i am warm the wired feeling intensifies until even the sound of my husband breathing makes my startle reflex go off - this can go on for hours. Then my foot starts going into a clonus like spasm - it can do this every few mintues for over an hour at a time. Now i really cant sleep and will try to do relaxation or meditation in bed. Usually i will now be awake all night and finally sleep about 7 or 8 am for a few hours.

    The next day i am like the walking dead. I have worked out for myself that i need to be in bed by 10, 11 the latest to stop this awful pattern from happening - but even so going to bed ear;ly has not cured my M.E.
     
  2. biophile

    biophile Places I'd rather be.

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    http://www.ncbi.nlm.nih.gov/pubmed/19226353
    Perhaps we all need some Graded Drinking Therapy (GDT) so we can get up to 2 pints of beer every night and binge-drinking on the weekends like the hypothetical typical CFS patient in Chalder's and "Mrs Wessely's" training video.
     
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  3. Firestormm

    Firestormm Guest

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    I thought one of the things generally regarded as being 'intolerable' for ME was alcohol ;)
     
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  4. alex3619

    alex3619 Senior Member

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    Thats why you need to get used to it. :ninja: I mean if it works for exercise, it should work for alcohol. Next we can try flying and walking on water.
     
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  5. allyb

    allyb Senior Member

    Thank you Mr Reid.

    I just want to add that Simon Wessely does this in true psychobabble style, as always; by projecting that it is the Countess of Mar who is the perpetrator in publicizing what is already public, thus effectively projecting blame.

    Over the years he has postulated this effective formula, in a very public arena with dogmatic repetition until even the enlightened question what they thought to be true. :redface:
    *The Maddox Prize was a measure of the power of that projection.
    Wessely has established himself in an unrivalled position in places of immense power; government advisor, The Science Media Centre, pharmaceutical companies, this list is both long and alarming.
    The impact has been global!!! :(
    All too often, though we know all this; we are rendered innocent bystanders/observers (not militants) made victims of circumstance by his powerful projection and strong use of persuasive langue from a position of power.

    I am thankful for the Countess of Mar, grateful that as a sufferer she can with honesty and integrity project back the truth from a privileged position. We have never asked for more than that and I dare to hope/dream we can move forward.

    Thank you for posting this firestormm,



    and if you are guilty of spreading propaganda......... then I think there may be a job waiting for you at the Science Media Centre. ;)

    Kindly regards
    allyb
     
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  6. Holmsey

    Holmsey Senior Member

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    And Firestormm, ELO sang about Horrice Wimp...good song but I prefered Mr. Blue Sky myself.
     
  7. Firestormm

    Firestormm Guest

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    Oh yeah! Buggar! Prefer Beethoven's overture myself :)
     
  8. Firestormm

    Firestormm Guest

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    Hey you! :) Nice to hear from you :)
     
  9. barbc56

    barbc56 Senior Member

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    So now we are using psychobabble on Wesely. Rather ironic. Kind of funny but still ironic.

    Barb C.:>)
     
  10. barbc56

    barbc56 Senior Member

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    How about homeopathic exercise? :rofl:

    Barb. C.:>)
     
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  11. alex3619

    alex3619 Senior Member

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    Oh, the Laws of Similarity and Contagion! Good idea. We can have a sporty type touch a computer gaming console (brand of your choice but see further comment) and then play sports games. Exercise by similarity and contagion! Do make sure its not a kinect or otherwise too movement oriented (wii etc). By building up the time we do such homeopathic exercise, surely we will improve.:snigger:
     
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  12. barbc56

    barbc56 Senior Member

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    But if it's homeopathic exercise, wouldn't we reduce exercise which in homeopathicspeak means an increase in activity? I don't think that makes sense but neither does homeopathy.:lol:
    Barb C.:>)
     
  13. Adamskitutu

    Adamskitutu *****

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    I thought Horace was using the term projection to mean as a rhetorical device rather than a psychological response.
     
  14. meadowlark

    meadowlark Senior Member

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    Re Wessley's letter to the Countess, I'm astonished that it's so badly written. That first paragraph is worthy of a 12-year-old--and I don't mean to insult 12-year-olds. Conversational English (which I have to assume is Wessley's e-mail style) is hard to understand when it's written down, and it seems he can't even punctuate. This isn't snobbery from me. Wessley's writing about something critical to his career, to a major critic who's highly placed in government. Best to express himself as well as possible. As a psychiatrist, he's had a very literate education. To have written that e-mail, he must have had a migraine--that's the most generous interpretation, anyway. In the end, the effect disrespectful. I'm amazed he didn't start it all with "Hey, Countess!"

    As for that video, I saw it a few years ago and it depressed me for weeks. Justy has the right word for it: "deluded."
     
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  15. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Mar is not and never has been nor ever will be "highly placed in government". She's a 'cross bencher', something which while deserving of the endless sniggers that inuendo might engender - means 'no party affiliation'. Worse Mar is actually an example of one of the more egregious anachronistic stupidities of the UK Parliament - an elected Hereditary Peer - meaning that when Prime Minister Blair (spit) grudingly accepted his Party's commitment to reforming the Upper House, the collective inbreds who dominated the whole thing, were cut down to a tenth of their former number, they got to elect whom amongst them were going to remain to speak for 1% of the 1% who by dint of inheritance still control much of the UK's wealth.

    I somehow doubt that anyone outside the M.E/CFS bubble will notice whether or not Wessely has addressed Mar (real name Margaret Lane) in terms of a double subjunctive - though I guess he could have attracted wider attention if instead of his inelegant but servicable English he'd yewsd stret styl in'it bruv. Perhaps the SMC could arrange classes for him. Roll on the revolution.

    IVI
     
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  16. barbc56

    barbc56 Senior Member

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    Highly placed in government by birth?;)
     
  17. taniaaust1

    taniaaust1 Senior Member

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    I doubt he has much fear of the Countess of Mar, he knows he can carefully use all the words he needs to use to throw poor general public thoughts offwhen he needs to (and of cause he dont give a rats arse about what most of us think of him).
     
  18. meadowlark

    meadowlark Senior Member

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    Fair enough criticism, folks. It's a minor detail, but I found it weird. Sometimes the tiny things are suggestive, that's all.
     
  19. ukxmrv

    ukxmrv Senior Member

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    Meadowlark, quite a few patients have corresponded with Wessely over the years and what marks his replies as interesting is that he rarely uses a spell-checker, good punctuation or good grammer. I've always assumed that he has a secretary or a colleague who writes his more formal communications for him.
     
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  20. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Apologies Meadowlark - my previous reply was rather more blunt than I intended (shouldn't post after midnight !). I know that a lot of people think a great deal of Mar - but there's no room for sentiment in political processes and that means we need to be very clear about who we are depending on, and just what their limitations are. Mar really has no traction with either of the two main parties, nor does she have an opinion shaping constituency beyond Westminster or those attracted to her special interests (M.E, GWS,OPP and Cheese !).

    IVI
     
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