Should the Fibro and ME/CFS Boards be split into two boards?

Discussion in 'Split Fibro and ME/CFS Boards? Take The Survey.' started by PHXenMaster, Jul 25, 2013.

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FM/ME/CFS Forum Survey

  1. Split up the FM & ME/CFS forum

    44.6%
  2. Add additional rooms specific to FM & ME/CFS topics

    25.0%
  3. Keep the FM & ME/CFS forum together

    42.9%
Multiple votes are allowed.
  1. Juliannie

    Juliannie Member

    I have both fibromyalgia and chronic fatigue, and voted for having room where they are kept together. I'm new to the forum and energy is very limited, so having information in one place would be very helpful.
  2. ChloëMoíraS

    ChloëMoíraS Member

    It depends on what the forum is for. With many PWC’s ME/CFS with Fibromyalgia, and vice-versa, a one stop place for general communication is good.

    However, recent neurological clinical studies (a four day study which I am again participating in next month) are showing brain stem maladies in PWC CFS. Results from the studies show a possible link to different the various auto-immune dysfunction in the CFS cohort. If medical information is of prime concern, the forums should be separated, at least until a firm diagnosis shows the two conditions having the same source(s).
  3. Darrae

    Darrae Member

    I, personally, prefer the forums the way they are. Many of us have multiple conditions. We fit into many categories. I have FM and CFS. Sooooo.....just sayin. And, many have the same "peripheral" conditions, like immune difficulties, thyroid problems, leg cramps....etc...etc....The way things are set up now, it's easier to share and exchange ideas, information and help.
  4. Mattchoo63

    Mattchoo63 Member

    I'm new here, so I don't have anything invested in keeping the status quo - but I do have a point of view to offer. Prior to a year ago I had never even heard the term ME. I don't think it's a common term in the U.S. but perhaps is used more frequently in other countries to describe the same condition as chronic fatigue syndrome - at least every time I see it, the two are lumped together as ME/CFS. I have both FM and CFS and frankly I don't differentiate between the two. I have ONE debilitating condition which affects me in a host of different ways and quite honestly, none of the current terms used are able to neatly capture all the health issues I battle. How should I classify my digestive issues - are those part of Fibromyalgia or Chronic Fatigue? What about my chronic respiratory problems including dyspnea, chronic bronchitis and pneumonia - it that Chronic Fatigue or Fibromyalgia? What about impaired cognition? Urgent bladder syndrome? Skin rashes and itching? Dysfunctional immune system? Insomnia and sleep disorders? Muscle cramps? Someone please tell me which category those all fall under and maybe then I'll be able to know which of two dozen different forums I should log onto based on my most pressing symptoms of each day.

    As Ian H. said, the names are simply descriptions of symptoms, not clearly diagnosed diseases. I think arguing over who has it worse, or parsing terminology is a waste of energy. Tamsyn is tired of having to explain her illness to people, but I hope she realizes that every one of us experiences that same frustration because no one, not even doctors, understand what we experience unless they have it themselves. Many still think it's all in our heads and they we are just pretending to be sick or crying for attention. Splitting the forum into two boards will certainly not change that, or make it easier to explain to anyone.
  5. Darrae

    Darrae Member

    Mattchoo63,

    Very aptly put. I've been on the boards here for over a year and I agree. Jam's signature idea, I believe, was the easiest way to identify without separating.

    Darrae