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

    45.3%
  2. Add additional rooms specific to FM & ME/CFS topics

    24.5%
  3. Keep the FM & ME/CFS forum together

    43.4%
Multiple votes are allowed.
  1. Soul*

    Soul* Active Member

    I was thinking about a way how to avoid confusion and maybe what could help as well is have subcribers pick whether they have CFS/ME or FM or both and have that show up under our avatar and username. Now if I read someones story I do not know if they are talking about FM or CFS/ME unless they mention it in their post. Simply having that with their name would already help.
    gb66 likes this.
  2. ChloëMoíraS

    ChloëMoíraS Member

    There needs to be a split, at least, in the discussions as CFS research (I do not follow Fibromyalgia or M.E.) is proving more and more that their is a distinct difference between these conditions. Significantly, M.E. is increasingly characterized by by a brain/brain stem post viral disorder and was first named (in England) around 1925 whereas CFS, at least in America, only became prominent in the 1980's and was then first called "Raggedy Ann Syndrome!"

    ICD-10-CM uses two different classifications, G93.3 for CFS "and" M.E., and R53.82 for CFS NOS. This alone shows a divergence between the two and medical discussions on all levels need to recognize this.
  3. Forebearance

    Forebearance Member

    I would like to see them in two different forums because there are a lot of posts about FM with subjects like "Does anyone else's left elbow hurt?" and I get tired of wading through those posts.

    I understand that FM is an awful illness and everybody has a right to complain and seek support for pain in each body part, It just takes mental energy for me to sort through the posts and try to figure out which ones might be relevant to my illness.
    inprog likes this.
  4. rose515

    rose515 Member

  5. rose515

    rose515 Member

    I would prefer the boards for fm and cfs be separate. Although symptoms of the 2 are similar the dominant themes
    differ. For fm it is pain management and for cfs it is fatigue & gut issues management. Going thru the updated good doctor list is super time consuming and mostly for pain management. I don't bother with it anymore. I am easily deterred from coming to this board just for the time that it takes to weed thru info that I need. I would like easy access to a fm board and I benefit from the knowledge provided from people with fm. The illnesses may be the same but I prefer the info be separate. Caner boards separate the different kinds of cancer even though there are many similar and overlapping issues and symptoms.
    ruby
  6. Cher65

    Cher65 Member

    I feel keeping them together will help both, many people have both disorders but havent been diagnosed yet. Having information together can inform others what to look for, see what works for and helps others, many of us having many diseases/disorders for example my list is too long to list and some of my diagnosis's are/can/will be fatal. As much knowledge we have the better we can manage our care since we are our best afficates.
  7. Daisys

    Daisys Member

    I have been diagnosed with both illnesses, and then diagnosed with Lyme disease. I read an article that says experiments were done with spinal fluid that indicates these are 3 separate diseases because of 3 different mixes of extra proteins in the spinal fluid (and therefore the brain). I don't care what it's called if I can get well.

    I'm being treated for Lyme, and still show symptoms of both ME/CFS and FM. I've been coming here for years, and have benefited from this forum. I do not want it split up. I read threads depending on the subject, not the illness name.

    So, my vote is to keep it combined.
  8. 8persevere8

    8persevere8 Member

    I vote to "Add additional rooms specific to FM & ME/CFS topics". Yes there is a lot of overlap and most information pertains to both but then there are times with the FM people are talking about pain meds and pain clinics which is not my main issue. Pain meds make my problem of fatigue much worse. It is frustrating because even the doctors only want to give pain meds but I want something to get me out of bed and going again. I would love to talk with others about only ME/CFS problems sometimes but would also want to get in on the general immune issue problems of both dis-eases.
    gaslady, bct and Soul* like this.
  9. Andrew111

    Andrew111 Member

    Keeping them together makes it very hard to find resources about CFS. Countless times someone would recommend a doctor and I'd read the entire thread only to find out it was a fibro doctor who specializes in pain control. Or, I'd ask about a specific doctor and even specify that I am asking about the doctor success with CFS, I'd get feedback, only to find out later the feedback was about fibro.

    If they are divided, people can still read both forums. But if they are together, it is hard to figure out what's what. Although, at this point I don't see how you are going to divide them. Unless, maybe you make the existing forum a the fibro forum (because that's what most of it is about), and create a new CFS forum.
    inprog, bct and Soul* like this.
  10. gaslady

    gaslady Member

    You made some very good points MicheleK! I have both ME/CFS and Fibromyalgia and I know that it is the CFS that most strongly impacts my life(what little I have).I stay home weeks at a time,only going out when I absolutely have to. I know some FM pts have it bad,but I wish I could do some of the things I hear ppl doing. So I guess I don't know the answer, except maybe include a subset within the groups for ME/CFS FM and one with both.
  11. IanH

    IanH Active Member

    I am changing my mind about the split. I now think they should be split. The front page of reports is split and that is working well.

    My reason is that fibromyalgia has mushroomed and is diagnosed in many different conditions/illnesses. I have never thought that FM is an illness in its own right but is a symptom set of an underlying illness or pathology, such as ME, Spinal trauma, MS, RA etc. We know that about 40% of people with ME fit the criteria for FM, which is another way of saying that 40%+ people with ME have the FM symptoms.

    I do not believe there is a illness called primary fibromyalgia. This suggests that FM is not caused by another pathology. Clearly there is genetic predisposition to suffer widespread pain in many illnesses. Earlier FM was a diagnosis of exclusion, now it appears to be a diagnosed of addition ie is added to the primary pathology. Where the primary pathology is not present it is probably because it is not found or it is ME.
    bct likes this.
  12. jaminhealth

    jaminhealth Well-Known Member

    I know if they are separated, I won't bother to post in both areas.....I do add info that "could" benefit both CFS/FM.....like for sleep, thyroid, adrenals etc etc etc....jam


    Ian: Just thinking about you, are you an MD or ND or just very scientific? You mention a clinic and what "we" prescribe, something to that effect....just wondering.....do you deal with CFS/FM as well or one of them?
    Last edited: Feb 15, 2014
  13. IanH

    IanH Active Member

    Jam: I am a neuropsychologist (PhD) I work part time in a University clinic for chronic illness. Yes we treat and support those with all chronic illness, mainly MS, Arthropathies, ME, FM and general rehabilitation. I am in the patient information dept. and my role is to help people understand their illness and adjust to their illness as well as assist with treatment compliance. My background prior to this was in drug research, particularly the psychological affects of drug treatment, use and abuse.

    However I will be there for only another 6 months after which I retire fully.
  14. gb66

    gb66 Active Member

    It seems to me that most with ME/CFS want to keep them together because of the ease of only having to go to one board and being so ill.

    So many CFS'ers have FM also and it is hard to keep up with more than one board. I think the idea that someone suggested, to be able to identify each poster with either FM, CFS, or CFS and FM is a good option. Then, you would know at a glance which illness they were posting about. GB66
  15. Darrae

    Darrae Member

    Understandably there is a good case, for informational purposes, in specification of some diagnoses. However, one board is difficult enough to keep up with on a regular basis for many. I do not feel the need to specify each person's illness to interact and exchange information.

    We all, by and large, have more than one medical issue occurring simultaneously. Many of us share common symptoms. Some of us may be harboring secondary "undiagnosed" illnesses we are not aware we even have, as the medical community does not "catch" everything and doctors do, in my experience, tend to latch on to their "best guess" answer, run with it, and look no further.

    I, personally, have gleaned and practiced some very effective and helpful supplemental advice from this forum from individuals who do have diagnoses distinctly separate from my own, yet similar in the way they present.

    I feel that "fragmenting" the board in an attempt to pigeon hole specific diagnoses will impede those with majorly limited energies from communicating and benefiting as fully. Perhaps gb66 is onto something with the poster identifier idea. It would keep the board intact, but give one specific references for informational purposes. Dar
  16. jaminhealth

    jaminhealth Well-Known Member

    To identify one's issue is important, many already post in unrelated areas asking questions and never even mentioning what they "deal" with.....often if we want to try to help, we have to ASK what are your issues.

    I think it's good to fill out one's signature area of their profile as much as possible, especially stating what their health issues are. As I've said before in the beginning, there are SO MANY areas to go to and try to help if we feel like it. jam

    Thanks Ian, now we know more about YOU....I do anyway.
  17. Darrae

    Darrae Member

    Jam, You hit the nail on the head. I've always liked your identifier info. in your signature. And, yes, one does have to "ask" what issues people are dealing with when asked for specific help.
  18. I'm new here, have only registered shortly before this. English is not my native language, it's German. I live in Switzerland, Age 65, retired. I was diagnosed a few years ago with Polyarthrosis and Fibromyalgia. In the last months I did a lot of Research about ME-CFS. A doctor once said to me that there is no difference between FM and ME-CFS. But it is my great believe that the diagnosis of ME-CFS is more applicable in my case because with ME-CFS it is clear that in my case physical activity/excercise is not good for me. If I don't respect my capacity of physical activity/excercice, I am tied to my bed for hours, sometimes even days. Thanks for any feed-back.
    janet f likes this.
  19. janet f

    janet f Member

    split,or at least some specific places for each. I am so tired of only seeing references to FM being "valid" by the medical community and even on some CFS/FM websites CFS is basically ignored while FM is the headliner, I would like some validation on a forum about CFS and only CFS. Selfish probably, not saying FM isn't serious but please I can't find a dr that treats CFS( tons that treat Fm and whose treatments about kill me) can't I please have at least a forum about CFS alone?
  20. jaminhealth

    jaminhealth Well-Known Member

    Janet, being new here, CFS etc has been discussed over and over and over by members here. Some deal with both FM/CFS conditions... Welcome, hope you'll get some insights... jam