Why do they always give a 2 year line for getting better? CFS

Discussion in 'Fibromyalgia Main Forum' started by LISALOO, Jul 6, 2008.

  1. LISALOO

    LISALOO New Member

    I read this today:

    One thing that new research indicates from the Dubbo research team for ME/CFS, which is headed by Dr Andrew Lloyd, is that an overwhelming majority of people who are diagnosed with ME/CFS, particularly after an infectious onset, recover entirely within two years of such onset.
    And this complete recovery they experience is regardless of any treatment they may have explored or attributed to it.

    Is this true? why even try. What's even the chances of getting better (i've been sick for 4 years) I'm so depressed latelyl and not feeling like going on and this ain't helping.

    [This Message was Edited on 07/06/2008]
  2. Granniluvsu

    Granniluvsu Well-Known Member

    Hi Lisaloo,

    I have had these DD's for about 25 years, and was dxed with it about 2 years ago. Somehow I don't think that the Dr's idea for a cure is working for me (-: !!

    Wouldn't that be neat if I were already cured as well as almost everyone else on this board

    Hugs,

    Granni
  3. sscape

    sscape New Member

    so don't fret. Honestly. There is hope.



    Sscape
  4. LISALOO

    LISALOO New Member

    I just feel so hopeless and discouraged.

    I've been saying to my husband, "How can I have hope, when there stastistically really isn't any?"
    [This Message was Edited on 07/06/2008]
  5. xchocoholic

    xchocoholic New Member

    I was thinking that this is just one of those subgroups that they talk about. And maybe it's a group of people who can afford maids, etc and can totally rest up for 2 years. That would certainly help ...

    I think your frustration is why many of us start to treat ourselves. On the upside, you're on a good board to learn about a variety of CFS treatments ...

    Hope you feel better soon ... Marcia

    This may sound goofy right now, but my remedy for the blues is to get out and do something for myself. Chocolate seems to help too ...

  6. gapsych

    gapsych New Member


    I know exactly what you are feeling. Sometimes it is so hard to "plod on" day after day.

    Upon waking, I sometimes forget, maybe for a few seconds that I have this DD. Other days, when I wake up, I know I still have it and it seems that is the time of day that is hardest. To actually get out of bed.

    What helped me is the fact that I went into therapy with someone who treats people with Chronic Illnesses. I go back occasionally for tune ups, and I think the next one should have started about two weeks ago. She also guided me to some social services.

    Unfortunately, there is no support group where I live but as you know, we sometimes can not get out.

    I think coming to terms with this DD is really important. Even realizing that some days (weeks, months) are going to be worse than others and we can only do so much.

    But there is this board where we see others in the same situation and it helps. No it does not cure us but it can be like a life perserver thrown to someone drowning. It can help us at least to stay above the water for a bit.

    I was also told the two year rule. I think it might mean that if you are going to go into remission, it will be within the first two years. At least, that was my interpretation of it.

    It's so frustrating.

    Take care.
    GA

  7. becc

    becc New Member

    Personally, I'd take anything Andrew Lloyd says with a grain of salt. He was once a respected ME/CFS researcher but that's no longer the case. He sides more with the psychologisers these days.

    It's true that the longer you're ill, the less likely you are to recover fully but it's certainly not an absolute. I know of people who were profoundly ill (bedridden) for about 10 years and are now living relatively 'normal' lives - working, going out regularly etc...

    I've been ill for 15(ish) years and have improved quite significantly from where I was for the first 10 years. I still can't work but I was able to study full-time last year and can go out more often than I used to be able to.

    Bec :)
  8. Slayadragon

    Slayadragon New Member

    I got sick with totally classic CFS in 1996. (All the regular bugs, immune system markers, symptoms, lab tests, history, etc.)

    I went downhill steadily over the years, and then last year did a sharp decline.

    Six months ago, I started aggressively addressing mold poison (moved out of my house and away from my belongings, used various detox measures). I've been addressing other toxins with the methylation supplements for about a year. I took an antiviral last year, which may or may not have been helpful.

    I now am LOADS better. Certainly well enough to work full-time and have a life back. I want to see if I can get my brain to work a bit better (and perhaps have more like high-achiever energy) so that I can go back to a really good job, and thus am continuing doing detox stuff (wearing on the system but effective).

    I think the chances that I'm going to get to the point where I'm just as well as I was before my illness (allowing for my being 44 rather than 30), but we shall see. It seems I will be close anyway.

    I now believe there are answers out there, and that people merely are not looking for them in the right places.

    Fortunately, we are moving into what I call the age of Guerrilla Medicine, where small bands of us are managing to understand this disease a lot better and thus address its underlying problems. Perhaps 20 years from now, Mayo Clinic will catch up, but I don't have that long to wait.
  9. marti_zavala

    marti_zavala Member

    This is rather an old statistic.

    Statistically, the small percentage of people who spontaneously recover, do so within the first two years of onset and do it without a specific protocol, almost as if they would have gotten well on their own.

    For the rest of us, we are not hopeless, it just means that our issues will take longer to address and would take various protocols.

    Also an old statistic, is the view that this sort of recovery also happens after 10 years or so. The body just sort of starts getting various systems working again, which is a domino effect.

    There is hope but it is an uphill battle.

    Marti
  10. ephemera

    ephemera New Member

    lisaloo,

    I remember very well telling my chronology to the best specialist I've seen so far. It's been 7+ years & counting for me. After surgery I developed benign hypermobility syndrome, FM, CFS, MCS, etc.

    His reply was if I didn't get better in the first 2 years, then it will be extremely difficult to dramatically improve now. Still, there is hope for living at a manageable level that is more than just tredding water. For me, humor, personal interests, love & support, & an interest in the world are paramount to getting me through tough times or an extended blue funk.

    In many ways I can say I have improved over 6 months ago. I'm trying to understand what has made me better. Certainly I am sleeping better on Xyrem. (Still, my pain level hasn't diminished.)

    I eat my own fresh vegetables or buy organic from local farmers. I keep removing myself from social situations I know will be a problem for me. I flee from situations I sense will cause my MCS to kick in or that are too severe for my extreme sensory overload issues. I try to avoid any type of stress which has caused me problems in the past. (I know this is very limiting, but it's the best track record history I have to go on.)

    I can also say that I am worse off in many ways. Without warning, my energy level will nose dive & I collapse in a heap. My eyes continue to telescope near to far & back again. This happens several days each week & will force me into a dark quiet room for hours.

    I cannot make sense of so many things. I struggle with words, either reading, speaking or writing. It will take me about 45 minutes to write this reply.

    lisaloo, I hope you find what you are seeking.

    Very best healthy thoughts.

    [This Message was Edited on 07/07/2008]
  11. Forebearance

    Forebearance Member

    Hi Lisaloo,

    I think of those people who get better in two years as people who had a mild case of CFS. I met one of them once.

    I think it's possible to get a mild, medium, or severe case of CFS.

    And remember that those statistics were based on the treatments that were known and available at the time. New treatments are being discovered all the time.

    Like Dr. Shoemaker's protocol for clearing neurotoxins from the body. And Rich Van K's methylation cycle block protocol. Dr. Pall's protocol for restoring antioxidants. Dr. Myhill's heart and mitochondria supporting protocol. Etc.

    Love,
    Forebearance
  12. Honora88

    Honora88 Member

    My rhuemy who is well versed and supportive says that 50% are completely recovered in his practice. He is at brigham and women's the best of the two three hospitals in the country.

    Key is getting deep rest (8 hours a day) and excercise even if it is walking one block for three weeks straight, then upgrading to 1.5 blocks of walking the next few weeks. It must be slow and gradual.

  13. babyk902

    babyk902 New Member

    im so with you on that!! been sick since 2004 also, EXACTLY 4 years (all started after the 4th of July) and lately i've just been so frustrated with everything, i'm only 22 and i feel like im 80, i've tried everything i don't know what else to try anymore, but im keeping my head up because I KNOW im not living with this forever

    and i don't think the 2 year thing is totally true either, i heard five years, but also in the past four years i've had my ups and downs, and even last year i was feeling better than ever.. but i think there's hope for anyone regardless of how long you've had this

    by the way love love love your wedding pic!!!!
    hope you feel better!!
  14. LISALOO

    LISALOO New Member

    Thank you for all of those who have given me hope.

    I just think at 4 years I'm screwed. I've tried hundreds of things and ntohing permanently helps. ABout 5% of things help and no more than for a month.
  15. acer2000

    acer2000 New Member

    One of the thing that I dont get about the dubbo studies is that they claim that they disproved the hypothesis that continued elevated cytokines are responsible for the farigue and cognitive dysfunction. This seems odd since Peterson and demeirler basically are saying the exact opposite. It leads on to think that the dubbo people are not talking about the same disease. Or if they are, they failed to measure the correct markers... It is entirely possible that some people who are dumped in the "cfs" bin have an undiagnosed infection, yet other people really do just have "pvfs" and will recover with time. The problem they need to work on is researching how to figure out who is who, instead of just assuming we are all the same...

    A
  16. LISALOO

    LISALOO New Member

    I don't know enough about the dubbo study to comment, but I know several other studies and doctors have stated that if you're not on the road to remission by 2 years, forget it.
  17. marti_zavala

    marti_zavala Member

    I dont think that is true - my sister has been sick for aboug 12 years and she is starting to spontaneously recover.

    So I think there is hope.

    Also, 2006 was a banner year for research studies - once the first study found the genetic markers - it has gone wild since then.

    Read Cort Johnson's website and he lists all the current research. It is starting to happen now -s hould have been years ago but it is now. So we should see things to help in 2-6 years. (pharmaceuticals, I mean).

    marti
  18. jewels920

    jewels920 New Member

    if they don't know what exactly IT is or what causes IT...how can they possibly know when or if you'll get over IT?

    I think that applies to CFS, FMS, and a great many DDs.

    jules



  19. Lichu3

    Lichu3 New Member

    Jewels sums it up concisely. Best to say, as the CDC site does now, that no one knows the course.

    I have read the original Lloyd study and some other ones.

    Basically, I thought that Lloyd might be studying long-lasting fatigue after certain viral infections but not necessairily CFS. They emphasized fatigue and did not even mention sleep/ cognitive issues/ post-exertional malaise as symptoms. So I'm not all that surprised their folks recovered in 1-2 yrs. Keep in mind also that Lloyd studied a total of about 200 folks, only about 20 who had long-lasting fatigue. (small numbers) How can we generalize to the majority of folks with CFS?

    Docs are quoting older studies. The older studies are likely inaccurate since they probably included a lot of folks with psychological issues leading to fatigue. Fatigue has been overemphasized and other issues take a back seat. In at least one study, 2/3 of subjects readily attributed their fatigue to psychological circumstances.

    Docs don't have time to read or understand original studies. So they're quoting from sources which are old or don't even mention these issues.

    Most studies also are not funded longer than a 5 years, not long enough for CFS. There is one 10-yrs. study; don't remember the details -- recovery most likely in first 5 years, still possible after 5 years but lower chance.

    I stay optimistic -- there might be more coming out on CFS next few years and there's always a chance to recover spontaneously.
  20. ladybugmandy

    ladybugmandy Member

    i think thats total BS. I have been sick for over 15 yrs. this disease is progressive and many idiots still won't acknowledge it.