The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Prognosis according to CFS/ME working group (UK)

Discussion in 'General ME/CFS Discussion' started by justy, Jan 31, 2016.

  1. justy

    justy Senior Member

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    This is a spin off thread from this one http://forums.phoenixrising.me/inde...s-to-someone-with-me.42721/page-2#post-691622

    For anyone who would like to continue the discussion of prognosis as per the report of the cfs/me working group to the chief medical officer, that was flagged up by @charles shepherd

    The report states this, on page 7

    I can agree entirely that only a 'small minority of patients recover to previous levels of health and functioning', but am not too sure on the idea of 'the likelihood' that most patients will improve over time. I don't know many people who have. In fact my experience is that many people become worse and more disabled over time - or plateau at a fairly disabled level of functioning.

    It says a significant minority become severely permanently disabled and I wonder which group of patients is included in this - the bedbound severe that are locked away? or does that include the house/wheelchair bound? I think a lot of pateints become more sevrerly ill and stay that way.

    Gradually progressive deterioration is something I have noticed in a lot of patients and have experienced myself and no one ever seems to suggest a more thorough work up to them - we have to fight hard for anything in this country when we have M.E.

    The other issue I am interested in - do we just manage the illness better as time goes by - hence people, or ourselves, may feel we are a little improved, when in fact we are just managing the pacing and resting and acceptance part better. Dr Bell found this common in a follow up study. many people reported feeling improved or even better, when actually they were just as disabled but had changed their expectations and the way they managed their lives.

    Where do these 'possibilities' and 'likelihoods' come from in this report? are they based on figures or experience?
     
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  2. justy

    justy Senior Member

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    I wonder if this can now be tied in with the differences found by Lipkin and Hornig in the Cytokine expressions?
     
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  3. justy

    justy Senior Member

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    No one within the NHS has done anything to try and make this happen for me.

    What is the 'necessary assistance'?
     
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  4. lansbergen

    lansbergen Senior Member

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    Possible but in my case I am convinced it is very slow real improvement.

    Of course if I would overdo to much or stop the immune modulator I would get worse again.
     
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  5. duncan

    duncan Senior Member

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    It seems to me there are a couple of issues at play here.

    Do a majority of ME/CFS patients experience sustained improvement? I'm not sure anyone has definitively answered this yet. If we don't know that, we should not claim it. Also, are we talking 99% majority, or 51% - the devil is in the details, and democracy is not an asset in medicine.

    When being diagnosed with ME/CFS, one may want to paint as positive an outlook as possible. Still, there is an obligation to the patient to be accurate that is every bit as cogent. "Many" may be more appropriate than "most".

    Also, research funding may be impacted by the belief that "most" will improve. That qualifier dilutes the dread, I think, and the sense of urgency or need. Perception rules, I fear, and this is seldom so demonstrable as in the arena of contested diseases. That understandable inclination to assuage patient fears may carry a heavy price.
     
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  6. snowathlete

    snowathlete

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    Seems like a bunch of statements not founded on facts. They talk of likelihood and substantial and relapse/remission but where are the facts to back those ideas up? I'm not sure there are any.
     
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  7. Skippa

    Skippa Senior Member

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    See, I still think that patients that recover in two years or less DON'T have CFS.

    Either that, or early intervention really does have its merits.

    You know the HIV/AIDS thing? People catch HIV, which in itself is really sucky, but they know they're really fcked when it "progresses" to AIDS. Early interventions over the past couple of decades have kept people in "managed HIV" and keeps them away from full blown AIDS... Have I got this right btw?

    So there are mechanisms of "fatigue syndrome" that cause early signs of this strange disease, and if you get diagnosis and interventions soon enough, eg get lucky, then the prognosis is much better. If you don't, then you develop full blown CFS, and the outlook is much more grim. Perhaps the epigenetic adaptations become permanent, in a "stuck on" state.

    That last sentence is just a random explanation of many.
     
  8. TiredSam

    TiredSam The wise nematode hibernates

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    This reads more like a description of what should happen rather than a claim of what is happening.

    I haven't had any assistance from the health services yet, but I did get a lot from here:

    http://www.cfidsselfhelp.org/library/about-chronic-fatigue-syndrome#prognosis

    Which has this to say about prognosis:

    Until we have reliable definitions and studies it's hard for anyone to say what the prognosis is, all we seem to have at the moment is (sometimes very well informed) anecdotal evidence.

    As a fairly new ME/CFS sufferer (2 years) I still hope that one day I may get my health back, either remission or cure if the science catches up, and occasionally like to think about how I will approach life if that ever happens. Realistically I know I'm probably stuck with this for the next 5-10 years at least, but if some people have recovered then it's possible (but realistically very unlikely) for me too, and I like to hang on to that small hope.

    Personally I feel that my envelope is shrinking over time. At the same time I'm getting better at management and minimizing my symptoms, so although I have more symptom-free time, at the same time my ME/CFS is getting worse. Is that an improvement?

    The very name of this forum seems to have been chosen to offer a ray of hope. I'm not sure we should consider renaming it "Phoenix thoroughly stuffed" just yet, even if that is the awful experience of many members.
     
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  9. Scarecrow

    Scarecrow Annie Gsampel

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    Prognosis depends on what you consider CFS and ME to be, what any individual has and what mix from the spectrum makes up the group being discussed.

    I think that the Dubbo study found that 90% of those with a post infectious fatigue had recovered within a year but if the patient hadn't recovered by then, the chances of later doing so were slight. That was true irrespective of whether the patient had EBV, Ross River virus or Q fever.

    In those with a clear infectious onset who swear that they were 100% well beforehand, where does common post viral fatigue end and where does ME/CFS start? Until there is a biomarker that delineates one from the other, it is impossible to give an accurate prognosis for ME/CFS other than to state that the chance of recovery is slim indeed.

    The Dubbo investigators observed that severity at onset was correlated with length of illness but as far as I know they didn't look at health status before onset. I think that there is a study currently running, led by Lenny Jason, which is tracking the health of students before and after onset of glandular fever but I don't know when publication is expected.

    Prognosis rates for ME/CFS are polluted by post viral statistics, which is encouraging for those in the first year of PVF who have been given a diagnosis of CFS or ME but I believe that the positive spin is ultimately harmful to people who are destined to have the permanent illness.

    My own personal experience is somewhat like yours, @justy. I had a long period of relative remission - but not full recovery to previous health levels - and I relapsed about five years ago, though not with anything like the same severity you did. I definitely feel like I'm following a relapsing remitting pattern; I don't think that decline is inevitable biologically (in my case) but how well I am able to manage my life is key - stuff that I have no control over has a habit of happening and it can tip the balance.

    On the other hand, I have zero expectation of spontaneous recovery. After 30 years, I think I can safely say that it's going to take intervention.
     
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  10. lansbergen

    lansbergen Senior Member

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    I think you are right. I was lucky to have something in stock I could try and fortunately it helped. Progress was very slow but slow progress is much better than decline.
     
    Last edited: Jan 31, 2016
  11. jimells

    jimells Senior Member

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    In the past I have had a pattern of partial remission/relapse; each relapse was another step down. That pattern seems to have ended, and now it is just a slow steady decline, punctuated by episodes of really bad POTS symptoms.

    Yes, I expect most of us do improve management of the illness over time, even without much improvement in overall activity levels. Personally I feel like I am caught in a slow race between dying due to "natural causes" and becoming completely incapable of caring for myself. I'm hoping that cardiac arrest wins.
     
  12. Gijs

    Gijs Senior Member

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    ''(...)The likelihood is that most patients will
    show some degree of improvement over time, especially with treatment(...)''. Treatment? What kind of treatment will that be? CBT/GET? There isn't any treatment for this disease. You must pace yourself and hope that natural course will make you 'better'' over time. Especially the doctors and people must accept that you are ill, the most doctors make patiënts more ill.
     
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  13. Old Bones

    Old Bones Senior Member

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    It seems there are at least two aspects that must be considered when establishing whether or not a patient has recovered -- symptoms (how they feel), and function (what they are able to do). If considering symptoms alone, then yes, I have definitely recovered. In the first few years, I felt totally exhausted, with severe neurological symptoms (petit mal seizures), no matter how little activity I did. These days, my pain is much worse. Otherwise, although I never feel "well", I definitely don't feel as awful as I used to (as long as I pace appropriately). So, in that respect I have recovered (somewhat).

    But, if considering function alone, I am much worse. I have gradually eliminated more and more activities over the years in order to maintain a usually "bearable" condition. There isn't much left to give up. In some respects, I think I've forgotten what "normal" feels like, and looks like (in terms of what a person my age should be able to do). I spend very little time with people who are healthy. When I do, it emphasizes how impaired I really am.

    If asked how I am compared with diagnosis in 1990, my answer would be: "better", "worse", and "no change". I suspect many others would respond similarly.
     
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  14. justy

    justy Senior Member

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    Yes - agree! I imagine this would be the experience of many old timers round here. For me the early years of the severe relapse were a struggle of non acceptance and severe grief, that just when my life and health were going the best they ever had this should happen (precipitated by a virus), the last few years I have stabilised a little more and suffer slightly less of the feeling like im going to die - but only because I no longer push myself anywhere near as much.

    The result has been even less functional ability in order to stay feeling slightly better. I have all but given up walking in my garden or any pottering with veegtables - I take my wheelchair EVRYWHERE I go now and only walk a few paces before getting in.

    I go out considerably less, now only about two hours a week. I gave up attempting to drive completely. I no longer attend family functions like I used to. I tell people not to come over. I don't maintain friendships. I am not depressed or miserable, I gave them up so I could stop suffering quite as much. So I feel a little better - but I could say I have also declined.


    Lots of great input and experiences here, but as usual with this disease it seems there are very few answers. I don't really know anyone who has had significant improvements and then stabilised and not relapsed later.
     
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  15. charles shepherd

    charles shepherd Senior Member

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    I think if people are going to comment on the section on prognosis in the 2002 CMO report (which I helped to write) it would be worth looking at the whole section (it is on page 7 in the report) along with all the conclusions and recommendations contained in the report

    Link to CMO (= DoH Chief Medical Officer at the time - Professor Sir Liam Donaldson) report on MEA website:
    http://www.meassociation.org.uk/wp-content/uploads/CMO-Report-2002.pdf

    Two other important points:

    1 This report was prepared for the CMO during the period 1999 - 2002 and the Working Group used the best available 'evidence' at the time

    2 The 'evidence' we used to prepare this major report came from published research and randomised controlled trials; clinician evidence and (very important) patient evidence

    At the end of the process the psychiatrists on the Working Group refused to endorse the final document and walked away because they believed it was too biased by some of the patient evidence - especially the patient evidence on CBT, GET and Pacing provided by the MEA. So probably worth having a look at the section on CBT, GET and pacing as well…..
     
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  16. Forbin

    Forbin Senior Member

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    There may be relatively few people on a board such as this who've had ME and have experienced sustained recovery, but that may be partly due to "selection bias." People who have recovered may not feel a need to be on internet boards about the disease.

    Also, if the IOM report is correct, then something like 84-91% of the people with ME/cfs are not diagnosed. Those people are not very likely to have stumbled across a place like Phoenix Rising either, and so, we are also not going to be aware of their "recovery"* rates.

    There's another issue as well. People who claim recovery are sometimes met by skepticism by some patients. I think this is understandable, but it may be unwise to explain away those claims as a matter of the person never having had ME in the first place (though it certainly is possible). On the other hand, I have to confess that I have been highly skeptical about some of the "miracle cures" I've seen reported in the past.

    I am much more skeptical about "cures" than I am about recovery, simply because people may correlate spontaneous improvement with what ever treatment they were trying at the time of improvement. I say this even though I have certainly been guilty of the same thing (Hey, I know I'm right! :)). This does not imply a placebo effect. Unexplained spontaneous recovery may be real.

    Somewhere among those anecdotal stories, however, there may be important clues as to the nature of the disease. We may only appreciate that in retrospect, once research finally uncovers the true cause(s) of ME.

    Still, if people know that they will be met with doubt, they are going to be much less inclined to report significant/sustained "recovery" on a board like this, which may be another reason that such reports are rare.

    Overall, I'm not really surprised by the infrequency of reports of sustained recovery, but that doesn't mean that it does not happen.


    [*I sometimes put "recovery" in quotes because I think it is possible to attain a high level of improvement and functionality without being totally free of the disease. Also, the term "spontaneous" recovery may imply "instant" recovery, but I think the process can also be slow and take years of gradual improvement in some cases.]
     
    Last edited: Jan 31, 2016
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  17. ahmo

    ahmo Senior Member

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    I'm now symptom-free, have very few activities. My quality of life is the best it's been. And it also seems as if I'm able to do less mental and physical effort. Or else I'm no longer in crisis, so am unwilling to push my brain. I'd love to tolerate more exercise.
     
    Last edited: Feb 1, 2016
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  18. duncan

    duncan Senior Member

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    It may be the understatement of the year so far to say that whether or not most pwME improve is important.

    However, I think the point at hand is whether we have any meaningful proof - in the form of studies - one way or the other. If we do not, perhaps we should not be publishing anything in the public theatre that suggests something that may be false.

    Didn't Lenny Jason publish research a while back (last decade) that suggested the average life span of pwME is roughly 15 years fewer than average? How would this marry with most enjoying sustained improvement?
     
    Last edited: Jan 31, 2016
  19. lansbergen

    lansbergen Senior Member

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    It would not.
     
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  20. justy

    justy Senior Member

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    Yes I think this would be something it would be good to know. I will see if I can find the Bell paper on recovery rates (self reported) - what he noticed was that when they were examined, or questioned more closely many of the people who claimed to have recovered were not in fact leading a normal life - they had simply adapted and recovered enough to feel relatively OK. It did not really equate to an increase in function - sounds a lot like self imposed PACE spin!
     
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