Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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The Countess of Mar at the House of Lords

Discussion in 'General ME/CFS News' started by leela, Oct 12, 2011.

  1. leela

    leela Slow But Hopeful

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  2. Boule de feu

    Boule de feu Senior Member

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    She is doing a good job. :)
     
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  3. Dolphin

    Dolphin Senior Member

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    Does anyone know if there is such evidence?

    I think there has been little research looking at this issue.

    One study was funded by the (UK) ME Association: Pheby D, Saffron L. Risk factors for severe ME/CFS. Biology and Medicine. 2009;1(4):5074 http://biolmedonline.com/Articles/vol1_4_50-74.pdf .

    It found the following six independent variables:
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    -----
    Quite a few services involve psychiatrists. Based on this research, one might conclude that attending such services would increase the risk of somebody ending up severely affected.
     
  4. justinreilly

    justinreilly Senior Member

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    Very interesting study! If you find more evidence, pls let me know!
     
  5. taniaaust1

    taniaaust1 Senior Member

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    I personally think that is one of those myths out there. I dont think ive ever seen a study which shows that. I do know the CDC thou supports that quote.
     
  6. leela

    leela Slow But Hopeful

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    Ironic, that, since CDC are the ones who require you to be ill for six months to qualify for diagnosis!
     
  7. alex3619

    alex3619 Senior Member

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    Hi Dolphin, so far as I am aware the claim that early intervention helps is an unproven hypothesis. It does have good grounds imo because if a patient can learn that rest (pacing) and diet and avoiding stress can prevent worsening of their condition, it might not progress. However, this is not a cure or anything like it, and is only an hypothesis at this point. Bye, Alex
     
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  8. Dolphin

    Dolphin Senior Member

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    I think early diagnosis can help (possibly/probably for the reason you quoted and related factors). And indeed the study I quoted found that. I personally wish I was diagnosed earlier - I believe the chances of me becoming severe would have been reduced (I was relatively high functioning for at least 4 years and one could probably say 5 years).

    However, the quote says:
    in calling for more of the services that are currently available in the UK to be expanded. Those are basically rehab services.
    So, in that context in particular, a claim that
    looks particularly questionable.
     
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  9. Enid

    Enid Senior Member

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    Just to add I think she's a marvel - been at it all for my 12 years. Definately feel earlier intervention would (with better diagnostics) save years of this illness.

    (Better diagnostics would screen for the pathogens commonly and routinely found by Docs in ME patients - those that actually look)
     
  10. Firestormm

    Firestormm

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    Excellent speech.

    Btw on early intervention... the ME-ICC is planning to do away with the 6 month qualification period isn't it? So can one presume that they too might be of the opine that early intervention was worth it (presuming of course said intervention was indeed 'worth it')? :)
     
  11. fla

    fla Senior Member

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    From my personal experience if a specialist had taught me how to pace properly I think it may have reduced my chances of becoming so severe. Of course the breach of contract by my insurance company (or what this study calls "Problems with social security") would have still been there so I may have become this severe even with the best specialist. Then again if money were not a problem during the early milder stages I could have gone to see a specialist.
     
  12. leela

    leela Slow But Hopeful

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    I totally agree. If there had been clear, unconflicted, understandable info out there when I first got the Dx, and I had been able to discern that pushing and trying to maintain a certain level of activity would make me worse, I believe I would not have become this debilitated.
    I might have been able to connect that exertion from two days ago with the crap I felt 48 hours later.

    Instead I went for years doing all kinds of stressful things, and since I didn't understand the illness, and was totally confused by the CFS vs ME discussions, I didn't think to see a specialist either. At the early stages I didn't fit the CDC definition, so couldn't be sure if the Dx was correct anyway.

    Progress has been made with the CCC and ICC, I think, for newer patients trying to suss it all out, and emphasis is starting to made on the importance of pacing.
     
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  13. Esther12

    Esther12 Senior Member

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    My impression was that the speech tied in with Esther Crawley's recent paper, without realising how tied to PACE it was.

    edit: this is based on having half read the speech when I was knackered last night, and forgotten most of it since, so may be best to ignore me.
     
  14. currer

    currer Senior Member

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    The network of ME clinics that were set up in Briitain focus on ameliorating the patients condition whilst acknowledging that causation is unknown. (They are supposed to, anyway)

    They dont have much to offer the experienced patient whose illness may be already of some duration and who would know how to manage themselves.

    They do have some value in helping new patients understand the need to pace themselves.

    Thats about it, really.

    Apart from setting up this network little or no advances have been made in treating PWME in Britain in the thirty years I have been ill (and 16 of those devoted to working in ME charities)
    As we know, the severely ill patient is left untreated in this system because a homevisiting service was deemed too expensive to introduce.
     
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  15. Dolphin

    Dolphin Senior Member

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    Yes, that was my impression also/one thought that did occur. That's how that Collin et al paper was sold/spun - the illness is costing money because we don't have enough specialist services, ignoring the fact that the "specialist services" may or may not reduce much of these costs (or could even potentially increase them).
     
  16. ixchelkali

    ixchelkali Senior Member

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    Bless the Countess of Mar. She keeps standing up and bearing public witness for ME/CFS patients, like a voice crying in the wilderness. Even after years of indifference and scorn, she is not deterred. I like to think that one day people will view the past 25 years of ignoble treatment of ME/CFS patients as shameful, and thanks to the Countess of Mar, the members of the House of Lords won't be able to say "I didn't know, no one told me..."
     
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  17. Battery Muncher

    Battery Muncher Senior Member

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    Yep, the praise for her work is well deserved, even if she did make a questionable statement or two.

    Great to have someone like this standing up for us in the House of Lords.
     
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  18. Nielk

    Nielk

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    Dr. Derek Enlander believes that his hepapressin injection protocol works much better if started as soon as possible from onset of the illness. This is based on his experience of hundreds of patients. By the time I got to him, I was already so sick for a while that my chances were severely impaired.
    I don't know if there are scientific studies out there but she didn't completely misquote either.
     
  19. Dolphin

    Dolphin Senior Member

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    But there's no chance of getting hepapressin in the UK clinic system (and I'm fairly sure there is no research published showing that finding for hepapressin). Some of the UK ME charities are into the clinics to various degrees; and then of course the CBT/GET crowd are big into them. So somewhere along the way, I think she has been misinformed. She has said some positive statements about the clinics/CBT in the past.
     

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