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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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A Celebration of Hope and Progress

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 8, 2013.

  1. Phoenix Rising Team

    Phoenix Rising Team

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    View the Post on the Blog

    View the Post on the Blog
     
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  2. SOC

    SOC Moderator and Senior Member

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    What? No talk about infections or immune modulators?

    I've long since accepted that doing more than my body can handle makes me worse. I listen to my body. I'm doing as much as I can routinely do without relapsing. I've cut my stress to as close to nothing as any human can achieve. I drink my 3 liters of water daily, take my antioxidants, thyroid and sleep meds. We've cleared my infections (as far as we can tell). Am I hearing the INIM saying that this is the best I can get?

    I can see that if they're talking to inexperienced patients, the whole issue of pacing needs to be addressed. If you're not pacing properly then you're going to get worse -- and feel worse. Okay, got that. Old news. What I want to hear is where we go from here.
     
    ahimsa likes this.
  3. searcher

    searcher

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    I watched the video on the Nova website and it actually bummed me out a little. They do mention immune modulators as part of the treatment, but I wish they had some 100% recovered patients in the "recovery" session. I am optimistic and really believe that there are 100% well former patients out there, but none of the three are working (2 are retired and one is on LTD) and the discussion seemed to focus a lot on reducing stress, staying under our outrageously low Anaerobic thresholds, and accepting limitations. If they called the session "patients with stories of not feeling as horrible as they used to" it would have been more accurate. There's nothing wrong with that, but it's not a recovery to me.
     
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  4. SickOfSickness

    SickOfSickness Senior Member

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    Yeah those patient stories are not very good.
     
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  5. Tally

    Tally Senior Member

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    I'm also a bit disappointed. Reduce stress. Drink water. It makes it sound like they are taking this illness way too lightly. I know that's not the case, but it does come off that way.

    I am not stressed. How can I be stressed being bed bound, all the friends long gone living their lives? I probably have the least stressful existance on this planet. And of course I drink water, that's a primal instinct isn't it? And I still have trouble walking more than few meters. I wish the answer was as simple as meditating and drinking water. Ah.
     
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    This was the morning session. I presume there is more to come and hope it will improve.
     
  7. Vonnie Kennedy

    Vonnie Kennedy

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    Hey there folks,
    I was only able to attend the morning sessions. I believe another writer will be posting an article about the afternoon sets. But, as a person who doesn't suffer from ME/CFS, I found much of the presentations to be too scientific and hoped the audience understood more than I did. It sounds like those of you who watched video (and read this article) didn't hear anything new and I agree with your comments about the patient stories. I was surprised that Dr. Klimas couldn't present patients with success stories. I was happy to hear that they were no longer bedridden, but it would have be nice to hear about people who were able to go back to work or resume a more active life.

    Thank you for the feedback. I'm learning from your comments. :)

    Vonnie
     
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  8. peggy-sue

    peggy-sue

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    Cutting DOWN on meat when many recommed that meat consumption should be increased - that carbohydrates are really the no-no -
    And no way would I drink that amount of water in a single day. I don't have enough energy to go to the loo that often.
    There's a huge myth around now about drinking tons of water - it's the bottled water industry behind it.
    I know we often have low blood volume - but drinking gallons of water is not the answer and it can cause harm in itself.
     
  9. jimells

    jimells Senior Member

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  10. Jenny

    Jenny Senior Member

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    I agree that cutting down on meat sounds at odds with other recommendations. But 2 quarts is about 2.25 litres. I drink more than that a day usually and feel a bit better if I keep to about 2 and a half litres. But it's tap water not bottled.
     
  11. Sasha

    Sasha Fine, thank you

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    Although Dan Moricoli (one of the patients) said that he had cut down on meat, I don't recall Dr Klimas recommending this. I could be wrong, though.
     
  12. peggy-sue

    peggy-sue

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    I probably only drink about 1 litre a day - between 2 coffees and 3 mugs of very diluted juice - but there's a lot of water in the food I eat too.
    This keeps me perfectly well hydrated (but I do live in a cold climate).

    I did try for a while, to drink a lot more to get my blood volume up - even using rehydration salts to help me keep it in, but I still just spent a lot more time in the loo and my tonsils were uncomfortably awash.

    There's nothing wrong with good old tap water!:thumbsup:
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Vonnie, its good to see someone like yourself spreading the word about this illness that is poorly misunderstood by everyone that doesnt have the illness. I hope u continue to take an interest and write more articles on this subject. I understand u write for womens health, can i just say there are alot of guys with this too. I think for some guys maybe your articles in the future could help women who have husbands etc with cfs/me to understand them better too. The saying , happy wife happy life. there should maybe be a saying sick hubby, understanding wife :). Im very glad i have an understanding wife. Of interest for future articles, dr lerner and dr montoya have treated and done alot of research into immune/infectious causes of cfs/me that i think can help legitamize our illness and create more awareness.

    thanks again.
     
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  14. SOC

    SOC Moderator and Senior Member

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  15. SOC

    SOC Moderator and Senior Member

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    Thanks for the report, Vonnie! FYI, it's Dr Rey, not Ray. :)
     
  16. SOC

    SOC Moderator and Senior Member

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    If drinking 2-3 qt of water daily (which in what is being advised, not gallons) is not the answer, then what do you propose is the answer?
     
  17. SOC

    SOC Moderator and Senior Member

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    I looked at who, exactly was advising we cut down on meat and grow a garden -- Dolores Perdome, Ph.D., LCSW.
    LCSW as in Licensed Clinic Social Work, so not exactly an expert on ME/CFS dietary or exercise issues. I chose to ignore all the advice from her talk except perhaps those topics in which she's actually trained. ;)

    The whole gardening thing had me laughing and crying at the same time. Gardening? Really? I wish! I had a huge landscaping job done just before I got ill because I thought I'd spend my post-child-rearing years tending a big yard/garden. Hah! It's all going to wrack and ruin because I don't have the energy to tend what's there much less lug out the old garden tiller every spring and till up a vegetable patch to tend to on a daily basis. :rolleyes:

    I think we got the standard ME/CFS-clueless "live a healthy life and you'll feel better" speech. Clearly no knowledge about the illness there. Hopefully that will change with INIM associated with the university.
     
  18. Vonnie Kennedy

    Vonnie Kennedy

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    Thanks, Soc, I'll certainly keep that in mind. I don't know where you're located, but I heard Dr. Klimas mention that Canada and the UK have different theories than the U.S. about how to treat the conditions, but she didn't elaborate. I'd love to hear more about that if anybody here has heard this.
     
  19. Vonnie Kennedy

    Vonnie Kennedy

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    Good catch, Soc, so sorry. I'm recovering from eye surgery so sometimes words blur together. Maybe I can get the editor to change that. :)
     
  20. Vonnie Kennedy

    Vonnie Kennedy

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    Hi all,

    Since my article was posted, the university website changed the location of the webcast.

    You can view the videos here.

    Hope this helps.
     
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