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Stages of CFS development

Discussion in 'General ME/CFS Discussion' started by sorin, Mar 9, 2016.

  1. sorin

    sorin Senior Member


    There are some questions that popped up in my mind for some time ago and wanted to know opinion of people who have more experience in this area than I have

    -Do you think there are stages in the development of CFS?
    -If yes, what are these stages, and what could be the timeline?
    -Is CFS mandatory becoming worse in time or could it become better in time? Or just could stagnate?
    - Is CFS without any treatment a deadly disease in a time window of N years ? If yes, what is N (i.e number of years after one patient of CFS without any treatment dies)? Or is it a disabling disease one can struggle and live a wretched life for 50 - 60 years ?
    Are there cases of patients of CFS known to have lived over 40 years with CFS? Are there cases of patients of CFS that died of CFS?

    Thank you in advance
    Last edited: Mar 9, 2016
  2. Denise

    Denise Senior Member

    @sorin - I think you will find that there are different views on most of your questions.
    This forum has lots of information and links to many articles that you might use to draw your own conclusions.
  3. sorin

    sorin Senior Member

    I prefer to ask directly the questions and get specific answers rather than reading disparate information that do not address specifically my questions. I hope you are not upset because of my questions. Your reply looked like a suggestion or a polite way to tell me to not ask these questions here? After all, these questions resume the quintessence of the problem. If we ignore these we are just hiding under carpet important things.
  4. Denise

    Denise Senior Member

    @sorin - I am not implying that you should ask questions and I am sorry if my reply came across that way.
    Your questions have many possible answers and some of it depends on the definition of "cfs" or ME that is used both in research and in clinical work.
    It seems to me that (in general) different people have somewhat different experiences of "cfs" in terms of duration, severity, symptom frequency, etc.
    Those who meet ME criteria tend to have a different experience than those who meet "cfs" criteria only.
    And the SEID criteria might yield a different experience than either that of ME or "cfs".
    Have you read the different criteria for ME and "cfs"? (The CCC, ME-ICC, the IOM criteria, Fukuda, etc.)
    Have you read Thirty Years of Disdain?
    Ellie_Finesse, Valentijn and Mij like this.
  5. TiredSam

    TiredSam The wise nematode hibernates

    I'm sure nobody minds you asking any questions here, and if someone can help, they usually do. But the fact is that there aren't any established answers to your questions yet, nobody really knows. There are quite a few different views and opinions, so all anyone can really do is inform themselves and make their own mind up. I agree Thirty Years of Disdain would be an excellent place to start.
  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    I think you could come to your own conclusions by looking at this memorial list of patients who were diagnosed with CFS/ME before they died (at least one person lived to 85):

    Leonard Jason wrote a paper based on the memorial list:

    A good article written by Jennie Spotila:
  7. Sushi

    Sushi Moderation Resource Albuquerque

    I'd guess most of us have experiences stages, but they are very individual, both in symptoms and duration.
    There are patients who experience each of these three possibilities.
    All this is unknown. Yes, some die, but there is no known way to predict. And some of those who have died have only been sick a few years and some for very many years. For most it is probably a disabling disease rather than a fatal one.
    Yes, there are forum members here who have had ME/CFS for over 40 years. And, if you look at our memorial section, you will see some members who have died--some from suicide.

    Sorry that we can't give you more definitive answers, but there aren't any now.
  8. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    We can only give our own opinions as there are no set answers on all that and with that is also the confusion of people with ME and CFS being used interchangably.

    I'll express my opinion on your questions but Im refering to the ME subgroup of CFS if people want to call it that, which meets the international ME guidelines or the canadian consenus criteria and not refering to the CFS patients who may just have fatigue and depression or a missed other illness.

    yes. Dr Cheney which I classify as a ME expert as he was one of two main dr involved in the Lake Tahoe ME outbreak. He has described very well the progression of my ME when he talks of the stages of it. Actually I've seen him put it in more then just 3 stages with the order things in body usually go down in. I cant find the link of what he's said but this one summarizes it describes it

    I think Dr Cheney has a got a time line in the info of what he said, I'll have another look after I post this for the article.

    I myself have also noticed a bit of time line in many ME/CFS patients eg those who die from this (not counting suicide or accidental ODs or accidents).. Ive noticed that these ones generally have it long term.. eg over 8-9 years. Ive personally noticed that more die from it around the 12-15 year mark of it. The more severe you have it with the more systems affected, from my observation the more likely you will die from it. In my own case, I truely do believe its going to kill me directly or indirectly.

    Some very lucky ME ones do have a remission (something which Dr Cheney has spoken about sometimes happening in first few years), thing is they will always be suspectable to getting this illness back with another trigger. In my case I had a 2-3 year remission but the caught a virus going around which everyone was getting and ended up back with ME.

    So some lucky ones do fully recover and may even be lucky enough to stay recovered if they arent triggered back into this by say a vaccination, surgery, an illness or another event well known for triggering off ME. (full recovery not all that common though most never get back to how they were before the illness, one study showed full recovery to be as low as only a few percent).

    A ME person could have .. a progressive illness, one which improves and they could recover.. or it could stay at a certain level of illness so they could be sick but stable. There is no rules. I guess it all depends on what the person is doing and what complications with the illness the person carries.

    It wont kill most, for most it will leave them suffering a severe disabling disease or leave the person at a lower level of activity then to which they had before getting it. Most dont have any true treatment other then trying to treat symptoms as there is nothing currently offically recognised in treating ME patients.

    Ive known people who have been sick for over 40 years..but Ive only even known 2-3 who have had it that long out of all the 100s of people Ive got to know with this. Generally those ones who have had it that long havent had it as severely as I have it (by this I mean with as many complications) though they still are quite disabled and be unable to work so yes one can have it that long. I think it probably actually kills the severe group before that long but that is my own personal view of things.

    Anyway, do remember for most that this illness will not kill them so if you or a friend has it, dont worry about dying from this unless you obviously have a progressive ME or severe with lots of complications. ME people have suddenly died from unexpected complications even when they appear to have been doing better but its not worth worrying about as most will not.

    In my case Ive developed due to this 2 leaky heart values I must have one of those holes opening in my heart which many ME patients get), very unstable BP to the point its dangerous.. (can spike over 190 in 1 min of standing or my dystolic can ditch to 20 or lower) and are starting to get organ damage from this illness

    eg one blood test showed that my kidneys were struggling and hospital dr said Im at risk of kidney damage ( due to the dehydration this illness gives me), eyes - a scan showed optic disk swelling probably cause the high BP spikes it causes due to its made my autonomic system unstable etc etc. Two out of the 3 people I met who's BP was doing what mine does they both went on to develop actual heart failure. They were not old. I now have an epi-pen as I started to develop severe allergy reactions etc etc.

    So many different things with this illness could end up killing me. I developed asthma with it too and cant take the drugs due to my MCS (chemical sensitivity) to keep things like my very high cholesterol level in check so further putting me at risk.

    If a cure isnt found, I do think I will be dead from this illness before Im 55 years old my complications get worst with time with the way my life is currently (so I see myself having less then 10 years left to live. With ME Im living with a life threatening illness. . Ive got ME 17-18 years ago... 2-3years of that time though was in remission)
    Last edited: Mar 9, 2016
  9. Skippa

    Skippa Anti-BS

    Personally speaking, there seems to be no ordered chronicity to the symptom stages.

    It's more cyclical, symptoms that seem to have passed over the years can come back and combine with other symptoms.
  10. sorin

    sorin Senior Member

    @taniaaust1 Thank you so much for your detailed answer. I am so sorry to hear that you have these complications from CFS and I wish you to get better and live healthy many years.
    @CFS_for_19_years - Thank you, too. The paper of Leonard Jason is very interesting, still when enumerated cases of death he does not specify what type of cancer are more probably to appear for CFS patients. It would be interesting to know if it is lymphoma or leukemia.
    Thank you also for the other replies. So it seems it does not kill you directly but after a dozens of years of misery life when you have to struggle for any minor and insignificant task to accomplish. What is not clear for me is if in your cases the CFS was from the beginning severe or it got worse in time? I have it for 4 years now and in my case is a mild one, more or less stagnant in the last 4 years.
  11. panckage

    panckage Senior Member

    Vancouver, BC
    For me there were very clear stages. I've had CFS twice and followed basically the same order
    1) gradually get worse and worse for about a year. Exercise for the most part doesn't work but I can still go out with friends a few times a week
    2) rock bottom - at my worst and barely functional. Maybe 6 months to a year
    3) very gradual recovery - about a year in duration. During this period I will have complete remission for a few days every few months or so

    This time I got CFS though I never got completely better in stage 3 and have been stuck in holding pattern. It's very difficult for me to believe that the likenesses are coincidence as the progression both times was pretty much identical

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