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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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New Joliceur Canadian XMRV Study

Discussion in 'XMRV Research and Replication Studies' started by Cort, Jan 9, 2011.

  1. Bob

    Bob

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    Ah, 'Boule de feu' has a meaning!!! I wondered where your name came from, but I didn't think of doing a translation (or asking)! Great name! :D

    Thanku for the final translation. Very interesting.

    I know that it's really hard work transcribing, and it must be so much more difficult translating and transcribing at the same time! Thanku! :thumbsup:
  2. leela

    leela Slow But Hopeful

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    Merci, Boule de Feu, pour cet norme effort.
    T'es un ange d'avoir persvr comme a :)
  3. sensing progress

    sensing progress Senior Member

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    thank you for translating fireball! =)
  4. Cort

    Cort Phoenix Rising Founder

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    This is great stuff. I love hearing Doctors talk about their experiences

    Q
    70% of solutions will be found by the patients themselves...I firmly believe this.

    I had no idea there was an Army study on CFS.....Its nice to see that 17% were able to return to work.......of course we don't know how well they were at work...were they working and suffering or doing well? In any case they were able to work again - so good.

    Then there were the other 80%...
  5. Cort

    Cort Phoenix Rising Founder

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    I think hypovolemia is a key and large unaddressed aspect of this illness. Some research is going on that seeks to explain why low blood volume is so low. One theory is that increased sympathetic nervous system activity is causing the blood vessels to constrict - which tricks the body into believing it doesn't need to produce as many blood cells. Think how much low blood volume could explain - orthostatic intolerance, oxidative stress, cognitive problems, inability to exercise.........


    I'll bet that a percentage of people do work themselves out of this disorder one way or another...or at least get much, much better...

    I was surprised at this since Woods finds a high rate of ADHD in FM...maybe its really high in FM/CFS and not so high in FM...

    Is this where Alberta is? I almost hope not as there seems to be quite a bit of interest developing in Alberta...many there are two 'hot spots' in Canada?

    Thanks for the translation!
  6. sensing progress

    sensing progress Senior Member

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    I agree with you 100% on this Cort. For a time after I started taking buffered salt tablets I felt immensely better. Able to socialize, go out, virtually normal. I attribute this to a temporary increase in fluid retention and thus an increase in my blood volume. Eventually however this effect wore off. But my god did I feel better for a few weeks there.
  7. Boule de feu

    Boule de feu Senior Member

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    Actually, I chose my name because of the erythromelalgia symptoms I have.
    Each night, after I lay down, my feet start burning. They are red and very hot to the touch.
    The only way I can get rid of the burning pain is immersing my feet in cold water (I know it's not very good to do that when you have neuropathy).
    Sometimes, I get it on the scalp, face, ears, hands, abdomen and maybe lungs?
    I feel like a litlle ball of fire.

    I did not know there was another meaning to it. I'm glad to find out!
  8. Boule de feu

    Boule de feu Senior Member

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    Je suis contente de l'avoir fait, Leela.
    Je suis contente que ce soit fini ! =-)
  9. Boule de feu

    Boule de feu Senior Member

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    I would like to get a hold of the Army study. What I don't like about this is that we have no clue what he is talking about. Is it an old study? Who did it?

    Like Dr. T., he uses a lot of statistics and tells many facts but there is no backup to support his claims.
  10. Boule de feu

    Boule de feu Senior Member

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    In my case, it's not constriction but a lot of vasodilatation and inflammation.

    I think we learn to live better with this illness. We don't have a choice but to adapt and adjust as we go.
    With time, we get better at it and it feels like we are healing. It's an illusion. It's not for real. We are still as sick but
    we do less and protect ourselves from crashing.
    Who in their right mind would want to stay sick? So, we do everything possible to feel better and to avoid the activities that make us sick. Anyhow, that is how I feel. After six years of hell, I have learned to slow down.

    Alberta is a province in Canada. (West)
    Quebec is another one at the other end. (East)

    I would not consider Quebec as a hot spot. Not yet, anyway. But, it is getting there.
    The interest is growing in Quebec because of the
    work of one association who is very active.
    (Association Qubcoise de l'Encphalomylite Myalgique - AQEM)

    No, problem. I enjoyed doing this. Keep me on your list for translation.
    Anytime. I'm available.
  11. eric_s

    eric_s Senior Member

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    It's better there are some improvements than none at all, of course. But i don't like this state too much, actually. With us, it should be the same as with any other condition. You go to a doctor, he knows how to diagnose you, gives the correct diagnosis, knows how to treat and treats you successfully. This is how it works for almost anyone else. I don't think it's ok for us to have to be our own doctors and researchers and try to find solutions (which is a process that is detrimental for us, travelling and trying potentially harmful and expensive therapies). The system is to a large degree failing us and this hast to change. Anything else is discrimination. I'm just back now from seeing a "real" doctor, who actually tries to find what's wrong with you and treat you for the first time! After enough years, one might think... This should be the norm and not the exception.

    Oh, et merci Boule de Feu pour traduire.
  12. Boule de feu

    Boule de feu Senior Member

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    Pas de quoi, ric.

    I think this is why so many of us decide not to consult anymore. Why bother if the doctor can't help us?
    30% is in the ideal world. Most doctors don't even reach that level of expertise for CFS.
  13. eric_s

    eric_s Senior Member

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    We definitely need to work on this. The Catalan ME/CFS organisation "Liga SFC" did something smart, i think, and founded a sister association for health care professionals.

    We need associations for ME/CFS doctors. It would be great to have such an association for the European ME/CFS doctors, for example. As far as i know this does not exist. They should do conferences, presentations, etc. and win the attention of other doctors and educate them. They would also be more likely to be able to convince politicians and the public.
  14. Boule de feu

    Boule de feu Senior Member

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    You are definitely fighting against a beast, here.
    Not fun at all. =-(
  15. ukxmrv

    ukxmrv Senior Member

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    Eric,

    We do have ESME and I think that they met for a meeting at the UK Invest in ME conference. They do seem awfully quiet though

    http://esme-eu.com/
  16. eric_s

    eric_s Senior Member

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    It takes some work, but actually, when looking at the situation, i don't even think it's very hard to do. Basically it stands or falls with the participation of our community. This is our big asset. What we don't have is good health or a lot of money (for most of us). But we are a huge number. Combined we easily have the power to achieve what we want and i think probably even quite quickly. It's a bit of a problem for me, since my health doesn't tolerate too much physical activity and of course also the head is not working 100%, but besides that i'm not scared or discouraged at all, seriously. Once again, if i look at the situation i already see now who the winner is, all it takes is to actually show up to the game.

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