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

    43.6%
  2. Add additional rooms specific to FM & ME/CFS topics

    25.5%
  3. Keep the FM & ME/CFS forum together

    43.6%
Multiple votes are allowed.
  1. PHXenMaster

    PHXenMaster Administrator Staff Member

    Dear fellow patients,

    We are thinking about adding modifying the forum as we are considering making two entirely different forums--one for ME/CFS, and another for Fibromyalgia. Please let us know if you think this is a good idea or not. If we don't, then perhaps you may have some ideas on how we can give Fibro and ME/CFS patients a place where they can at least talk among themselves. Maybe we could have some individual forum rooms on the FM/ME/CFS boards for fibro-only topics, and some rooms for ME/CFS specific topics. Please share your thoughts and ideas.
    Sincerely,
    ProHealth

    p.p. Rich Carson
  2. hangininthere

    hangininthere Active Member

    Don't make two different forums. Because so many of us have made lifelong friends here between us even though we have varying illnesses. This is our home where we all get together to enjoy each others' company, advice, health tips, comfort and support. Don't split us all up.

    I would opt for leaving this forum how it is. But if you feel the need to make a change, then just make separate sections - 'CFS Discussions' and 'FM Discussions' - within this same forum.

    Thanks for providing me this home. It has been a life-saver to me emotionally.

    Patti
    Sensitive Soul likes this.
  3. Nanie46

    Nanie46 Moderator

    I think there is too much overlap with member's symptoms to successfully split the forum up. I think it is beneficial to keep them together.
  4. gb66

    gb66 Active Member

    I vote to keep the boards together. So many of us have both conditions.
    gaslady and Strong Lady like this.
  5. IanH

    IanH Active Member

    In making two different boards you will be suggesting that these are two distinct illnesses. This is really debatable. Since over 40% of people with ME/CFS meet the criteria for FM and vice versa. Clearly there are some people who are diagnosed with FM who's correlative pathologies are spinal but the underlying immunological variables, such as elevated pro-inflammatory cytokines are actually much the same. That is both are neuro-immune conditions including "spinal-FM".

    At the same time there are people who have FM as a co-related condition in another illness, such as MS, SLE and various other immunological and genetic illnesses. This is also proving to be the case with ME/CFS.

    However a scan of this board shows many people comment on both, sometimes that commentary is unclear ie it is hard to discern whether the poster is talking about FM or ME/CFS. So in that sense it may clarify the actual illness being referred to. Sometimes posters don't even mention either condition and I have no idea if they even have either of these syndromes.

    So far the clarity of diagnosis and definition is poor, so for now I would keep them combined but at some stage, if or when diagnosis and definition are clearly distinct then form two boards. I don't believe that definition will occur and that the trend of data will be to combine them into subsets of the same disease. However I could be wrong.
    gaslady and bct like this.
  6. Granniluvsu

    Granniluvsu Member

    I agree with keeping them together for all the reasons mentioned, especially for those of us who have been here for some time.

    Thanks and HUGZ to awl !

    Granni.
  7. tamsyn

    tamsyn Member

    I understand the reasons for keeping them together but, just to give another point of view, I think there is also reason to separate them. There seems to be a general misconception that ME/CFS and fibromyalgia are the same thing. I get tired to trying to explain to people that they are not the same thing. Even some of my nearest and dearest, who support my illness (I have ME) still use the terms ME/CFS and fibromyalgia interchangeably. Dr Oz (US radio show host) yesterday had an 'expert' discussing these illnesses on his show and again, fibro and ME/CFS seemed to be treated as one thing. A listener in my family was even more convinced after listening to the show that there is only one illness. I know there is a big overlap between the the illness symptoms (someone has mentioned a 40% overall) BUT many illnesses share an overlap of symptoms....thus the reason why part of being diagnosed is ruling out illnesses such as MS, Lupus, Lyme...they all share an overlap of symptoms. But they are not the same illness! I for one am very tired of trying to explain this illness to others...to explain all the general misconceptions...having it all lumped together as though it's all the same illness only makes it more confusing and more difficult. Having this silly ME/CFS name is bad enough! So, that's just another point of view to separating this on the boards/forums so to stress the fact that fibro and ME are not the same illness!
  8. MicheleK

    MicheleK Moderator

    Personally I don't really care if they are together or separate but I'd like to make the case for separating them based on my experience running groups where the patient community is combined.

    ME is far more serious and complicated. ME patients have specific needs that FM patients do not face. ME makes FM look like a picnic. I have both illnesses so I am not making light of FM, it's just a fact that in no way can these two illnesses when placed side by side even begin to compare as far as the degree of disability and the losses they bring to someone's life. Do they both have pain and brain fog? Yes. But even in those things that may be held in common the degree of suffering really varies.

    In running patient groups that include both illnesses I have found that many of the FM patients end up feeling like they shouldn't complain because they see over time that those with ME are so much worse off than they are. Some have also felt that when in a group with ME patients others have judged them as whiners due to the comparison of what is talked about in the rooms.

    When talking privately to ME patients they do indeed often feel like the FM people "should suck it up" or they say things like " Gee, I wish all I had was FM. I wouldn't let that stop me from having a full life." & " Those people have no idea how lucky they are. Give them ME for a week!"

    When talking privately to FM patients I've been told "I don't feel like I can really express how I am feeling because I know the ME patients wish they had my illness and not theirs." or " I never knew CFS was so bad. I can't imagine having that." & " I have learned a lot about CFS but I didn't come into a group to learn about CFS, I need people to understand what I am going through and truly support me, not think I am lucky to have FM."

    Most people are kind. Some though are not. I have witnessed FM patients get told they are "lucky" or things along that line. I have also witnessed some FM patients encourage or even push the opinion that CFS patients need to exercise or push through something. This usually comes from FM patients that know that the best thing for their condition is to exercise or push themselves to socialize etc., but they have not learned yet that this is more often than not very bad advice to give to an ME patient.

    I think running patient groups and hearing people pour out their hearts both in group and privately has made me more aware that FM patients may not get all they can out of a combined support group system. I still have a combined group because the physician I work for treats both illnesses and that's the way our group is structured. But as I said, I have noticed how an FM patient may not speak as freely in a group with ME/CFS patients after they hear what they go through.

    ME & FM may have some overlapping symptoms but so do many other illnesses and they are not lumped together because of it. MS has clearly defined MS support systems. Lupus has clearly defined support systems. Parkinsons the same. Many of those MS, Lupus, Parkinson's patients may also have FM but the FM is not presented in the same manner it seems to be with the ME/CFS situation. I would venture to say that if a patient had FM only and was in a support system for MS or the other illnesses they might too begin to feel marginalized or not want to be as free about saying how they really feel about their personal suffering because they can clearly see that having MS or the other illnesses is so much more complicated.

    For ME patients who also have FM it can be convenient to have both disorders included in a group. I'm just not so sure that is so for patients with the singular disorder of Fibromyalgia.
  9. gb66

    gb66 Active Member

    I feel that those who attend group meetings may benefit from separate groups but online, it's a lot easier to have them combined. If something doesn't pertain to me I can always skip over it and go on to another post.

    I barely have the energy to read one forum, I could never handle two different ones. I have had both FM and CFS/ME since the beginning of my illness. No doubt, the CFS/ME is the most debilitating of the two for me but the pain from the FM is constant and severe also. I don't compare my suffering with others. We're all in this together.

    If I could lose one of the illnesses tomorrow I would probably choose to lose the FM, however. The fatigue, weakness, dizziness, MCS, and all the many symptoms I have from the CFS would be more bearable simply because I wouldn't be in constant pain and I'd be ablt to sleep better and move around more. Things like bending, standing for more than 10 min., walking are so difficult now with this pain.

    On the other hand, without the CFS I could breath better, no fevers, no dizziness, no sore throat/swollen glands, no MCS, sleep nights instead of days, walk without bumping into or holding on to walls, maybe lose the tinitus, take medications without so many reactions, and best of all not be embarassed by the name of the illness and the blank looks I still get from almost every medical person I've gone to in the last 35 years.

    It's like trying to choose between a migraine headache and an abcessed tooth. I'd really rather not have either one.
    gaslady likes this.
  10. happycfs

    happycfs Member

    Without question or hesitation, please keep the forums combined. Please definitely keep them together! Too many people who have been diagnosed with Fibromyalgia end up developing the extreme symptoms of ME/CFS. Also, may people with longterm ME/CFS end up developing the extreme pain issues of Fibromyalgia. ...Basically, too much overlapping. Plus, with all the brain fog around these here parts, one single group is just easier.
  11. tooks

    tooks Member

    I'd say keep them in one forum but have subforums specific to each.
    Soul* and TigerLilea like this.
  12. IanH

    IanH Active Member

    The only way you can separate these two is to focus on the overall symptoms because the underlying biochemical and neuro-physiology are much the same depending on the group reporting the factors. Some say that ME is much more serious than FM but I have seen people with FM in a wheelchair. So much pain, stiffness and fatigue that they cannot walk at all, unable to drive and have difficulty feeding themselves. Conversely I have seen people with a diagnosis of ME that go to work. Now how can you say which is worse? You could argue that the diagnoses are wrong but if you are not a specialist you cannot comment on their diagnoses.

    Certainly the diagnosis of FM is exploding because many people are being included in this diagnosis that have underlying illnesses but because they have widespread pain they are diagnosed with FM (in addition to their primary diagnosis). In short, the diagnostics are in an absolute mess and therefore diagnostics are not a good rationale to separate the boards. Also the diagnostics are based on symptoms. There are no accepted biomarkers of either condition. I am in no position to separate these out and I am a psychologist working with people with diagnoses of ME and FM and MCS. As well as being a sufferer of ME and a lot of pain. (I do not diagnose illnesses myself).

    The same "difference" argument has been promoted for ME and MCS. BUT many people with ME have MCS and research into MCS biomarkers on those "diagnosed" with MCS comes up with the same biochemical irregularities as those in ME. MCS is the poor cousin because the Psychiatric fraternity have a strong hold on this, much more than ME or FM, yet MCS is a very debilitating condition and I would not rank it differently or lower than ME at all. I note that this forum has no board for MCS, why? I suspect that it is because those with MCS, and there are many, include themselves under ME/CFS.

    Another point to consider is that all three of these "conditions" exist in the same nuclear family. As also pointed out people with ME/CFS can eventually get diagnosed with FM and vice versa. It's like looking at something which is orange and saying it is red then saying "Oh no it is yellow as well".

    I have no doubt that people diagnosed with ME, FM and MCS have serious problems and a miserable life but what we have labelled ME, CFS, FM and MCS are JUST descriptions of symptom sets. People vary hugely in their symptom sets. In Britain some were trying to separate the terms ME and CFS. While I disagree with the term CFS, the argument was that ME was a serious disease and CFS was something else (milder). Nonesense! These are terms conjured up to describe the same symptom set.

    You could argue that because FM is an exploding diagnosis the diagnosis of FM includes a different set of people. Maybe. That maybe like saying the people with ASD are different from those with Autism. Hmm!

    There are also those with CFS who actually have Lyme disease. We have no forum for Lyme disease yet the confusion is often made. Eventually with a lot of proper investigation the Lyme is uncovered and I suppose the CFS diagnosis evaporates. Nanie46 has had a lot to contribute in this regard.

    ME is made up of many different groups of people with similar symptoms. We cannot say whether these people have different diseases. FM is made up of many different groups of people with similar symptoms. I personally believe that many people diagnosed with FM have ME, I have seen numerous examples of the diagnostic change.

    I hope in the future we will get a clearer picture of the mess, we will only get that from basic research which identifies biomarkers - at that stage the argument changes and we may be arguing that people with ME-1 need to be given a different board from those with ME-2 because those with ME-1 get myocarditis and may die but those with ME-2 seem to improve with time.

    Eventually I believe we will see different diseases but I doubt it will be on the basis of the current concepts of ME, CFS, FM or MCS.

    Of course there could be other arguments for separating the boards, like research, the board is over loaded, people are very confused or people with ME want to ensure their illness is seen as more serious for "political" purposes.
  13. gb66

    gb66 Active Member

    Good post, Ian
  14. IanH

    IanH Active Member

    I wonder how many people on this forum were diagnosed with FM, ME, CFS and both FM and ME or FM and CFS?
  15. gb66

    gb66 Active Member

    I have been ill since 1978 but was not diagnosed until about 1995. I had not heard of fibromyalgia or CFS until the 90's. I think it was 1995 when a rheumatologist diagnosed me with FM. I saw a CFS doctor for two visits about the same time and he was in the process of eliminating other illnesses when he suddenly quit the practice.

    No other doctor took over his CFS patients so I didn't get a difinitive diagnosis. I have never found another doctor in my area who even will discuss CFS, just the FM.
  16. Mikie

    Mikie Moderator

    Oh, please, keep the together. There is soooo much overlap of symptoms and so many people have been misdiagnosed. If those people only go to the one board, they may be missing out on info which could be very helpful. My specialist drew a Venn diagram of most of his patients' conditions. The circles, titled, IBS, CFIDS/ME, and FMS all overlapped at some point. Also, there are people with what is called, Primary FMS, and they appear to have no other conditions. More commonly, FMS has come on the shirttails of some other immune, or autoimmune, illness.

    I think if we separate the forums, we do a disservice to our members, many of whom are visiting for the first time. They need to see the vast array of symptoms with our conditions.

    Love, Mikie
  17. mbofov

    mbofov Active Member

    I agree with Mikie. If there were definitive tests for each of these conditions with proven treatments specific to each condition, such that a person knew exactly what they were dealing with and could look up the treatment for it, there might be a rationale for separating the boards. (e.g., people with HIV and AIDS won't bother going to an arthritis board and vice versa).

    But these illnesses are so ill-defined and so fuzzy in their diagnosis and so many symptoms overlap, as Mikie said, we would be doing a disservice to our members to the separate the forums.

    Mary
  18. whoknewit

    whoknewit Member

    I voted to keep the threads together. There is overlapping of symptoms of the two. Also, many of us have been diagnosed with both conditions; thus suggestions for one condition will help the other.
  19. Soul*

    Soul* Active Member

    For me personally dividing them into such a way that I know what posts are about FM and what are about CFS/ME would be VERY VERY helpful since energy is so limited and trying to find information that applies to my situation is hard enough as it is. Though many may have overlapping symptoms, not everyone has and both illnesses are so different. Getting lost in information about fibro when I really need to find info on CFS/ME is not helpful for me, it is only depleting my energy. Right now I can't see from the topic if it is related to CFS/ME or FM. So yes please finding a way to make that clear would be very useful and fitting.
    inprog likes this.
  20. bretzie

    bretzie Member

    After reading the above posts, I'm not sure it would be good to split the Fibro and ME boards up; perhaps have additional ones for only FMS and CFS concerns.