Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a debilitating condition that makes day-to-day life difficult for those who have it. Join the group and discuss treatment, symptoms, and lifestyle changes that have helped.

1 Online
  • cmiat

    Just a note on posts.

    2
    I just want to say that sometimes when someone writes a long post or reply, I can't read it because I can't keep track of where I'm up to for that long.  However, if the same length of writing is broken up into paragraphs with a line between I find it easier to follow.  I've started to always do this if I'm posting a longer reply in hopes that it will be helpful to others too.
  • Rosi

    Has anyone here been diagnosed with MGUS or know s

    3
    Has anyone here been diagnosed with MGUS or know much about it?   The reason I ask is because this was on my chart/labs some 12 years ago and because I was busy being treated for CFS and Lyme , nothing really was said about it.   Early on,  I went to an oncologist and they did a scan and I came up 'clear'.   Now,  I am following it up with a hematologist for the past year and a half.  They...
  • M.L.

    In for the long haul

    Anyone else online who has  been ill for multiple years?  Like 30+?  Trying to find ways to occupy myself when I am unable to move around physically and have trouble focusing for long periods, and that's when I found this on-line support group.  Are there only doctors who offer herbal remedies or are there doctors who offer real medical help?  Decades into this disease we are still searching...
  • aussiedi

    Sleep Meds

    Hello there. I'm just wondering how many of you are on permanent sleep medications ,either chemical or natural. If so, what do you take and do you have side effects ? I'm bedbound at present and struggling with severe insomnia again. I have tried numerous natural remedies over the years and if any of those worked, it would be for a short period only, and then useless. I have taken various...
  • Booklvr

    Is M.E. really a neurological disease?

    5
    I'm new here... hi.  I was diagnosed with M.E. about 5 years ago. I'm really struggling, emotionally. Recently I saw a neurologist who, after reviewing my MRI, confirmed that I do not have MS (that's what they were testing for). Nor do I have anything wrong neurologically.I cried at the diagnosis. I was actually hoping I had MS! I though I could get treated and maybe feel better. Even remission...
  • SoCalCFS

    IBS and CFS

    I have a couple questions but first some background information... In my 20's & early 30's I had a lot of issues with IBS and then they stopped. Fast forward and when I was 51 I got a bad sore throat (about a month after having the shingles) which turned into laryngitis. When my voice came back my energy immediately disappeared. That was the beginning of my CFS (although it took a year to be...
  • M.L.

    Sleep

    1
    I wanted to put this out there.  When I have trouble sleeping I cannot take OTC/script aids; so I use binaural beats.  It is an app on my phone, but I think you can also get it for a computer.  Some are free, others charge a fee.  I have also used Delta wave music, which is supposed to encourage delta waves in the brain (delta waves are associated with sleep).  Use this only when you can...
  • Hope2Heal

    CFS AND RELATIONSHIPS

    Does anyone else find relationships are hard to come by when you have CFS or other health problems?  I met a gentleman who was willing to overlook my health because "I was a sweetheart" (his words, not mine).  According to him, I was worth it.  Well, today he let me know he could never live with my health issues so we parted ways.  It was very hurtful.
  • megan54

    probably only documentary on CFS. I Remember Me

    6
    I just tearfully finished watching for the 3rd tine is 17 years, the film by Kim Snyder called I Remember Me. It came out in 2000 and I first saw it as our local Fibromyalgia/ CFS organization had a showing at a local theater. I'm not sure if it hit the main film circuit or not, but the writer, producer, and fellow CFS survivor has since produced many award winning films.  The film is a...
  • SoCalCFS

    Not understood

    In the last couple years a lady has helped me quite a bit. She is currently in the process of opening a business and I offered to do a presentation to promote her new business. I put in about 13 hours preparing for it. The day of the presentation I was feeling bad and wanted to stay in bed. But instead I dragged myself out of bed and made the presentation.I was late getting there & wasn't as...
  • Susuof2

    CFS and Camping

    6
    My hubby has CFS/ME and loves to be outside and go camping however, his CFS symptoms are getting severe.  He is unable to even walk from the bedroom to the bathroom (about 20 ft) because his legs give out and he falls.  He wants to go camping because he feels trapped in the house and wants to enjoy some family time.  I am worried about the heat making his symptoms worse or the camping trip...
  • aussiedi

    Love Chain For Nina 1959

    Hi everyone. My dear friend Nina1959 is struggling terribly. She has lost her soul mate and is deeply heart broken She has struggled with  trauma and extremely ill health for a very long time and all the  pressures of her life have become too painful for her to bear. She is on the verge of giving up. Please support me with a chain of love to give her strength to carry on.Together we can shine a...
  • ARGibson

    Research

    1
    Hi friends,I don't know if any of you have HSV-1 or have had an illness/virus similar to it, but I find this research really interesting and validating.I first had HSV-1 4 years ago, and it becomes dormant, so it is always with you once you get it. This could explain some things for the cause or at least a part of where their ME came from."The explanation behind this is the fact that a virus can...
  • emeraldeyes55

    Naturopath visit

    4
    Finally getting some answers. The short is, blood and Saliva tests show hormones to low, viral infection from Mononucleosis in early 20's raising up like the chicken pox virus to Shingles in later life and stress, liver issues, toxcity - further tests on that to come. I'm taking products and changing to bio identical hormones and diet changes. My color is already better, others are commenting....
  • amethyst_rememberance

    Help

    6
    I am undiagnosed and have been experiencing what i can only describe as chronic fatigue to many months, which has only been getting worse. I sleep 8-9 hours a night but still take much time off school. At least once a week i'm having sessions where i sleep 14-16 hours in a single day (not continuous.) I have taken 40 sick days off school this year because of this. Many of the days I think I am...