When the 'Holiday Season' Is No Holiday at all for Those With ME/CFS
Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year ...
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chat rooms?

Discussion in 'General ME/CFS News' started by iofiel, Dec 28, 2009.

  1. iofiel

    iofiel Guest

    Are there any CFS/ME chat rooms available that I could register for, or is there a chat already available for this forum I can join?

    I am pretty new and I don't know anyone that suffers from ME and it would be nice to talk to talk to people "real time"...

    Any help?
  2. _Kim_

    _Kim_ Guest

    Hi iofiel

    Cort's been teasing us by telling that a chat room is coming soon. In the meantime, why don't you come over to the community lounge - pop into any of the threads there and say hi. It's not nearly as fast as a chat room, but there's typically a good amount of activity there each day.

    Welcome to the forums.
  3. iofiel

    iofiel Guest

    Thanks - I am still so incredibly confused about CFS/ME... and it is hard to understand some of the posts about the research being conducted...

    Every Dr. I go to doesn't help at all, and I guess there is no real "cure" from what I can gather reading...

    I will check out that forum :)
  4. _Kim_

    _Kim_ Guest

    I know what you mean - the abbreviations, the research, the politics...it's so overwhelming.

    I am new to all of this as well - came here in Oct not even knowing if I had CFS. There's much to learn, but if you have specific questions, there are many of us here that could direct you to the right thread, offer some advice, and maybe help decipher those complicated science articles.

    Thanks for speaking up...
    And if you're really brave, consider starting a thread in the Community Lounge and see who shows up.
  5. iofiel

    iofiel Guest

    I am really confused about the XMRV research. Is that CFS/ME, or not? There seems to be controversy about it..

    And is there really no cure?

    My symptoms are getting worse by day - I pretty much have every single symptom there is, and just recently added acid reflux to it.

    I am in pain every day, but I don't think it is FM.

    I try to read everything I can about it, but I always wind up even more confused with each article...

    I just feel so incredibly frustrated lately :(
  6. Lily

    Lily *Believe*

    chat rooms

    Iofiel - you may find someone here:


    I haven't been there in ages, but it's the first place I found when I was diagnosed with CFS about 3 years ago. At the time, it was a relief to have a real time chat with others going through the same thing. There are "rooms" there for several chronic conditions. I was diagnosed with fibromyalgia before ME/CFS (in 2002) so felt comfortable going in the FM room as well. More often than not, there were more people around in the FM room than ME/CFS room, and the people with CFS would also congregate in the FM room. In fact most everyone congregated there, so I learned about the people coping with Rheumatoid Arthritis, Lupus, etc. We have a lot of overlapping symptoms.

    At times that room (FM) was just too fast for me and other CFSers and we'd go over the the ME/CFS room. You may find the ProHealth chat rooms helpful. I did, at the time, but as I said, I have no idea what it's like now. It was a busy place back then. You may have to drop in at different times of the day to finally run into someone, but there will be times when there are a lot of people around - unless it has changed a great deal since I was there. Hope that helps.:)

    I certainly remember what it was like not to have anyone to talk about this with. Good luck there. You will find an awful lot of really good information if you stick around here though. It will definitely seem overwhelming at first. But take it slow and give it some time. It's a lot to take in, no matter how you do it.

    We're here to help you through it - just give us a chance and go easy on yourself.

  7. iofiel

    iofiel Guest

    Thank you - you all are helpful and it makes me feel less ignored.

    I just have to leave work early today because I suddenly felt faint (face/body flush feeling) and I feel so incredibly helpless because it seems to be getting worse...
  8. _Kim_

    _Kim_ Guest

    One study (so far) has shown an association with XMRV and ME/CFS. The controversy is that it's too early to make any claims as to whether XMRV is present in ME/CFS patients, nevermind whether it causes it or not.

    There are people with CFS (known around here as PWC) that have gotten well, gone into remission, or otherwise have found some kind of treatment that helps. XMRV, because it is a retrovirus, would not be 'curable' - it would remain in the person's DNA for life. However, it is very likely treatable - but at the moment no one knows what therapies will be effective in keeping it at bay.

    Without testing, it can be very very confusing and frustrating to try and figure out why we are sick. For me, this forum helped me find a good doctor, get the right tests, get diagnosed, and start treatment. I don't know if the treatment will work, but most of my confusion about being sick is gone. I needed some validation and that only came as a result of seeing that I had several re-activated infections brewing.

    You are not alone - and there are some very smart PWCs here that know far more than I do about symptoms, testing and treatment.

    I know I've been baiting you to start a new thread, but really!!, if you want some advice, some comfort, etc., then post a little introduction on the Introduce Yourself forum.

    Hang in there with us - and I promise that some of the confusion will abate.
  9. iofiel

    iofiel Guest

    Maybe we can create an AOL IM chat room or something? I am easily confused on forums, and sometimes directly talking to someone or several someones help.

    What does PWC stand for?
  10. PWC = Person with Chronic Fatigue Syndrome
  11. _Kim_

    _Kim_ Guest

    PWC = people with CFS

    Check here for some more abbreviations that are used around here (look at my post in that thread for a link to another abbreviation thread).
  12. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
    some chat at yahoo

    If you have yahoo messenger you can add me -- a bunch of us get together and have conferences, there is always some one online that you can talk to - we do it privately, by invitation so no pervs get in like they do in regular yahoo chatrooms. When in, you can add people to your messenger list and always have people to talk to.. You will see the "red Y" at the top right side of this post, it is the link to my yahoo messenger,

  13. Cort

    Cort Phoenix Rising Founder

    I've been teasing people for months about the chat room but it is going to happen. We just need to get the new Forum package up first which will happen soon.
  14. leelaplay

    leelaplay member

    welcome to the forum iofel

    Being sick without a diagnosis is an awful state to be in, and one that some of the people here have gone through. Do you have a good doctor? Have you received any diagnoses?

    It is a confusing world. I'm in Canada where we use the term ME/CFS and consider them a range of the same disease. Some consider FM to also be part of the same disease, but with the main symptom being pain rather than fatigue.

    The Canadian Overview document is one of the gold standards and I find very easy to read. You could look at the symptoms for ME/CFS and FM to see if there is a correspondence with your symptoms.

    As Kim said, xmrv is a recently discovered retrovirus. It was first found in some men who have prostate cancer. The WPI research showed that 67% of the test subjects who have ME/CFS also have xmrv. This is the very beginning of lots of testing to see if xmrv is the or part of the cause of ME/CFS, prostate cancer and other diseases. There are many good threads here on the subject. I know it's overwhelming at first, but if you slowly make your way through, I think you'll reach a good understanding.

    Hang in there.
  15. iofiel

    iofiel Guest

    Can anyone help me pronounce ME? The entire name? I've tried many times myself, but I don't know how.

    island, hello! I was diagnosed with epsteein bar when I was around 23. Before that, I was sick with two respiratory infections back to back... after i felt better, I found myself always tired...

    I used to be able to go out, party, or stay up reading (whatever it was I was doing) and go without rest for two days....and not skip a beat...

    But after I got sick, I was tired all the time. I would go to the museum with my bf (a small one), and not be able to walk but a few steps. I would sleep every few hours...

    I don't know what other tests for a "diagnosis" I can take. Can anyone tell me of a list??

    From all the symptoms I have read of CFS/ME - I seem to have pretty much every single one, but I feel my health deteriorating, I almost feel like I am slowly dying, and it is scaring the crap out of me.
  16. _Kim_

    _Kim_ Guest

    my-AL-jik En-SEF-uh-lo-MY-uh-LY-tiss

    But then again I heard Dr. Enlander (orig. from Ireland) say it with a hard C as in En-KEF-uh-lo-MY-uh-LY-tiss

    With ME/CFS, there are many abnormalities and possible co-infections. Epstein Barr (EBV) is one, so is Cytomegalovirus (CMV), HHV-6 (a Herpes family virus), Mycoplasma species (associated with Gulf War syndrome), Chlamydia Pneumonia (not the same as the STD), Parvovirus B19, enteroviruses, and more.

    Oh, and some with ME/CFS also have Lyme disease.

    There are other tests too. One is a Head Upright Tilt Table test to test for an autonomic dysfunction called Orthostatic Intolerance.

    Other tests looks for immune system abnormalities - things like low Natural Killer Cell function, inflammatory cytokines, IGG subclass deficiencies and more...

    Some PWC also have other hormonal problems - thyroiditis is not uncommon.

    So you see, this is where a good doc comes in - they can examine you, test some things and then try to treat some of the problems. If you still have high EBV titers, you might be a candidate for an antiviral. I'm on Valtrex for EBV, which is the same Rx given for people who have Herpes I or II or Shingles.

    Aside from testing, there may be some things you can do on your own. Freddd has been helping many of us do a B12 protocol - with over the counter supplements. It's been helping me a whole lot and I haven't even been on it all that long.

    If you have gastrointestinal issues (and maybe even if you aren't aware of them), trying some dietary changes can be huge. Years ago, I put myself into remission by eliminating gluten and other grains. Other PWC have issues with dairy.

    If you stick around, you'll realize that you don't have every single symptom - there are too many and are too varied. I don't have the Orthostatic Intolerance problems that some PWC have, but maybe they don't have such bad gut problems like I do. There's a whole range of symptoms that are possible.

    If you describe some of your worst problems, we can probably point you in the right direction about possible testing and treatments.

    I'm scared too. I stick around here because I am amongst the experts in this disease - the patients who have learned how to be their own advocates, their own doctors, and their own lobbyists. Learning from them is my best weapon against this horrible disease.
  17. The Phantom

    The Phantom Member

    near Philadelphia
    Hi iofiel,

    It's really difficult to get all the information you need when you're so sick. Since you're in Florida you might want to check out P.A.N.D.O.R.A. They list a support group in Sarasota on their website: http://www.pandoranet.info/meetings.html
    I think that's not too far from you. Someone there may know of a doctor you could see who could help you with lab tests. It's pretty hard to figure out what you need by yourself, although many people are forced to do this. The problem is that then you have to find a doctor to order the tests and interpret the results, so it's a great deal easier if you can find a doctor who knows something about ME/CFS.

    Here's a link to a list of tests that can help with the diagnosis:

    Another link on the same website discusses the importance (and difficulty) of finding a good doc:

    I believe this website was developed by Dr. Byron Hyde, who has years of experience treating ME. However, lots of people would not agree with this list, and I'm not trying to promote it. It's just somewhere to start. For instance, some doctors think it's important to be tested for a variety of chronic viral infections. Hopefully, it will soon be possible to be tested for XMRV and we will know more about what the results mean. But, again, it's a lot easier if you have a doc who's willing and able to treat you appropriately. This isn't easy to find. Many people are unfortunately in the situation where they can't find a reasonable doc and end up having (or preferring) to essentially treat themselves. This is far from ideal, but it's the reality many of us face. If you look at the Treatment and Therapy threads on this forum you'll get an idea of the variety of therapies people have tried. It's mind-boggling. I think most people end up trying things sequentially and gradually come up with a combination that is at least somewhat helpful. I don't want to be discouraging, but right now that's many people's experience. It's a journey. Hopefully, somebody in the Sarasota support group can help you begin to find resources close to you.

    I'm glad to see that, while I've been typing this, Kim has explained how to say myalgic encephalomyelitis, because I couldn't figure out how to do it! She's explained more about the viral infections. I know a few people with elevated EBV titers who feel better on Valtrex. It's not a cure for most of them, but it gets them out of the totally awful category.

    This is a website where people post various types of information about ME/CFS and fibromyalgia, as well as related illnesses:
    You can sign up to have posts emailed to you directly. You can just delete the ones you're not interested in.

    Phoenix Rising is a really great resource. There's a lot of information here, though, so it takes time. But everybody wants to help, and there's a huge amount of expertise here, because we've all been through it. Best wishes!
  18. The Phantom

    The Phantom Member

    near Philadelphia
  19. iofiel

    iofiel Guest

    Thanks, guys! Someone gave me the name of a Dr. here... Dr. Kline? In FL, but her clinic is extremely expensive.

    Does anyone know if insurance will cover all these tests? I need to find a new GP, since I moved from Tampa to St. Petersburg. I have an appointment with a Dr. today, so I am going to ask for a GP in this area I can go to.

    Thank you for the list as well.

    This may be a dumb question, but since so many people are stating XMRV is like aids... does this mean it is a different form of it?

    I am sorry I ask so much, but this is the first place i've been able to go to that people answer my questions :)
  20. iofiel

    iofiel Guest

    On a side note - my boyfriend can create a chat for vbulletin (this forum)... he programs on the side. It costs $5.00, but I can pay it.

    Anyone think they might be interest (don't to overstep any boundaries since i am new though).

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