Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Who else feels like we are going round & round in circles?

Discussion in 'General Treatment' started by coxy, Feb 1, 2010.

  1. coxy

    coxy Senior Member

    I'm getting quite depressed lately, & think maybe a break from the forum is in order.
    Just as i felt we were getting somewhere with XMRV i'm starting to feel it's not going to come to much.
    I've noticed everyone is into the mitrochondrial thing again, it makes sense to me, but not sure how to fix it, everything seems to be so confusing. So many people saying and trying different things, not sure how much evidence there is for any of it?
    I feel like i'd like to clear everything off the forum & someone start again with one regime to follow, i can't be the only one who's getting more and more confused! My cognitive issues are rock bottom at the moment so obviously i'm finding it difficult to follow all the various opinions.
    Maybe there should be a special link for very slow people like me on here, where everything is simplified!!
    I think i'll give it a break & wait for the surveys to get up and running when maybe it will be more obvious what helps and what doesn't, hopefully someone will simplify the results on a regular basis to give clues to the brain struggling one's amongst us -please.
    I'll pop in and out to see when the surveys are up, i need a rest now.
  2. Hi Coxy,

    Take heart. Going round and round in circles can be a good thing, because each time you come back round to where you were before, you've learned a little more.... or actually in my case, a LOT more.
    AND if you only deviate slightly to the left (or right) while going round in your circle, you will soon end up slap bang in the middle of the problem.
    This is the theory, at least, behind the ancient spiral symbol, which was supposed to represent this entire process.

    To my mind, XMRV is pushing is ever so slightly further in to the centre as we go round and round. Soon we'll be sitting on the nub of the problem. It may take longer than we have been led to believe, but we will get there.

    Rachel xx
  3. Kati

    Kati Patient in training

    Coxy, I will be honest!

    I only visit the sections I am interested in. If a thread is going nowhere, I give it up.
    I don't follow any of the treatments, herbal medicine, protocols from others, at the moment.
    I take this forum as if I was reading the Saturday paper. Some interesting news, I'll read.

    You have to be able to discern what information is right for you and what is not. Especially when your brain doesn't work very well!

    I'd hate to see you leave.
  4. Lily

    Lily *Believe*

    Hi Coxy
    I can relate to how you're feeling and I think you're on to something!:D Really!! At least limiting time on here is a good idea.

    If anything was really working, it wouldn't be a mystery or a secret. Few people are really seeing any vast improvement, and some are trying a huge number of remedies that at best lessen a few symptoms for a short period of time. What seems to be "working" for some doesn't work for others. Probably because the root cause/problem isn't being addressed. The root cause will not be the same for everyone even if XRMV is found to be the root cause for some, or most.

    So take a rest from here or limit the time you spend and go on with life in whatever way you can. This place, as wonderful as it is, can be somewhat addicting and I think we begin to have unrealistic expectations. (Speaking from my own experience of course.)

    It's going to take a while, even if XMRV is found to be causal, to find treatment and develop effective and accepted treatment protocols. So unless you are one of the privileged few who can physically get to and financially afford a CFS specialist, treatment will be a while down the road.

    I think a step you can take, if you haven't, is to complete the WPI questionnaire. On the outside chance that they ask for your blood and you are XMRV positive, then you would have an opportunity to participate in a clinical trial. Even to do that would require that you are able to get to the monthly (or whatever turns out to be required) doctor visits for monitoring.

    You're a great asset to the community, but you have to do what is best for you. Limiting time here and reining in expectations might help you to feel better.

    Warmest Regards,
    Lily:Retro smile:
  5. kat0465

    kat0465 Senior Member

    i know the feeling!! sometimes when i OD on too much Info i get to feeling like you are times i need to Take a few days to NOT think about being sick & what i can do to make me bettr 24/7
    it is all very overwhelming!!
    and the foggy brain dosen't help, right now i am trying to wade thru the methylation cycle block thing:( and it's kickin my Butt! i used to be a voracious reader!! never without a book.but now im lucky to retain half of what i read
    Just take a little break, don't stay away for too long,i really think things are moving faster that were aware of as far as the XMRV stuff.If i am understanding what im reading,lol. Take a break, relax, try not to worry for a few days. it makes a big difference i promise:)
  6. starryeyes

    starryeyes Senior Member

    Bay Area, California
    You say you'll stay away but I bet you won't! lol

    Times have never been more exciting for us than this and every day brings new revelations. I'm thrilled with the situation now. CFS research has been so stagnant ever since De Freitas was taken out of the picture. Don't leave now. Just scan the threads for the most exciting stuff. Maybe you'll find you only read one or two threads a day, that's fine.

    And don't forget to keep an eye on the Advocacy thread. There are opportunities to help our situation in there from time to time or all the time depending on how involved you want to get.

    Come down to the lounge for a break and camaraderie. :) There's a burnout bench there just for people who are feeling overwhelmed like you are.

    The best news I've heard in a while was just the other day in Dr. Bell's video. He and Mikovits have now both stated that they think it may be possible for our immune systems to kick off our secondary infections once we treat XMRV. If nothing else, we may respond better to other protocols once XMRV is under control. They both said this is what happened in AIDS patients when their HIV was treated.

    There's never been more hope for us than now and I heard a rumor in Chat that Annette Whittemore is supposed to have a big announcement today.

  7. dannybex

    dannybex Senior Member

    We're all different...

    Hi Coxy,

    I know what you's so easy to get discouraged. But as others have said, it's probably a very good idea to take a break from any forum. I've had to do this for the past six weeks or so because I crashed so badly...was overdoing it when my body was screaming at me to stop...yet kept pushing myself. There were other issues involved too, but am just, barely, starting to crawl out of a deep black hole.

    The lesson I've learned...which again, my body has been trying to shout for years...was to LISTEN to it, and stop, and rest. Easier said than done, but I got so bad that I HAD to stop...

    Whether XMRV pans out or not, I think the reason this disease is so difficult to treat, and always will be, is because we are all different. We may all have different causes, different 'stressors', whether they're chemical, viral, bacterial, etc., or some may have instestinal permeability, and others not...some may have methylation problems, and others not, etc....which means everything will be addressed differently with each person...I think.

    I'm just a patient, not a doctor, so I don't know, but I don't believe there will ever be "one" regime or protocol to follow. That's why (in my opinion) the percentage of recovery is so least right now.

    But...all the XMRV news has brought a great deal of attention to our invisible and disrespected illness...and that's bound to continue, especially if XMRV does pan out. Even if it doesn't -- or doesn't for everyone -- then other answers will perhaps become clearer.

    So please don't give up. I almost did this past month, but am glad I didn't. Just perhaps take a break...maybe stop by every other day, or maybe once or twice a week. Instead, try to rest more, and concentrate on what you know makes yourself feel better...even if it's microscopic or temporary. It will pay off in the long run.

    Take care,

  8. This made me think... I wonder if we need to offer up a system of sort of CFIDS/ME mentors/angels, where you pair up with somebody who keep you straight and call you up when you're supposed to be in bed or pacing yourself and help you not to crash so badly? Imagine that... a sort of personal trainer in reverse. "GET TO BED for goodness sake..."

    Rachel xx
  9. dannybex

    dannybex Senior Member

    That would be SO great.

    I'm on my own for the most part, even though family lives nearby, and one sister tries to help at times. Still, like 95% of us, they just don't get it. I could've been dead and moldy for the last month and no one would've known it, except I guess that I posted a couple of quick "jokes" on my Facebook page a couple weeks ago. I've decided that Facebook is only for quick one-liners...nothing substantial, and definitely no problems or "negative" least that can't be resolved with a Tylenol and a triple latte.

    This reminds me Martha Kilcoyne's story...and her book.
    After trying many different approaches, she got well by forcing herself (WITH HER HUSBAND'S HELP) to rest....big time. She needed a pain med and a sleep me to help, but when she felt like she was having a good day and could do more, or sleep less -- her husband was there to call her on it -- and within a year or so she was well. Three years later she climbed Mt. Kilimanjaro (sp)...

    Gotta go...eyes are giving out fast. Time to take a break and REST. :)

  10. xchocoholic

    xchocoholic Senior Member

    Definitely, if you feel like you're on a merry go round, take a break ... I only read the holistic threads on this board and ignore all the XMRV, XAND and advocacy info. I'm on a mission to heal myself from CFS/FM and I have to learn how our bodies work and what supplements do what so I don't have the time or energy for the rest ...

    Sure, it helps if others who understand all of this look at it, but it doesn't do me any good to waste my time on any of it. When my doctor tells me that there's a treatment or a test for XMRV, then I'll listen. I see an integrative doctor so I know that she won't sign me up for anything fishy ... Meanwhile, my instructions are to stay on the course that I'm on because it's working.

    I know exactly what you mean about feeling confused about what CFS is and what CFS treatment work. The problem as I see it is that too many of us believe, or in my case, believed that traditional medicine would find the answer. NOW I can't see that's never going to happen. It's not like they aren't trying but as I see it, CFS is an end product of several factors. And appears to be the result of an overloaded immune system. In my case it definitely was ... As long as traditional medicine only looks at the end results of what happened, they'll never find the cause ... you can't look at a flat cake and tell what went wrong, now can you ? lol ...
  11. maryb

    maryb iherb code TAK122

    Coxy - I think you read my mind, what a great site this is and I'm so very glad to have found it but I've found my head's been in a whirl trying to read/follow stuff and every time I log off because I start feeling yuck I can't remember what I was following when I come back again. I now feel quite 'dense' in the head and think I too will have to have some time off and try again in the future. No answer really is there? so much info and help from some great people but it all feels too much.

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