1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
California 2014: IACFS/ME Day One: Translating Science into Clinical Care: 20 March 2014
The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to...
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RECOVERY REGISTRY

Discussion in 'Action Alerts and Advocacy' started by beaverfury, Sep 22, 2012.

  1. beaverfury

    beaverfury beaverfury

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    ME/CFS recovery stories are few and far between on the web.

    I always love hearing about them and wish there was some sort of Worldwide Recovery Registery online to give some brief record of name, date, place, circumstance.

    Such a thing could only be anecdotal and self reported but i still think it worthwhile, if only to give others
    some hope.

    There is a wily Bhuddist monk in Serpentine Monastery, Western Australia who says anyone who
    comes up with an idea must be the one to implement it. ....But i am a very sick man:ill:.. and have
    zero web design skills or resources :D

    Is there anyone out there with the will and skills to start such a page?

    I promise it will not end in a Zuckerberg/Social Network type standoff :p
    CFSNZ, HTree, SOC and 1 other person like this.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Perhaps this is along the line of what this Forum is going to do with the $10,000 winning!! I think your idea is good, this disease steals many things, and HOPE is all we have sometimes!

    GG

    PS If not, perhaps you can start your own blog on this site and/or request of this site your specifics?
  3. beaverfury

    beaverfury beaverfury

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    Yeah, recovery seems to be a grey area. Whereas ill people are flat out trying to make themselves visible and heard, recovered people seem to slip back into mainstream life and the me/cfs community dont often hear of them any more.
    Quite understandably. I dont think i would want to remember too many aspects of this illness.

    The official recovery statistics are not very comprehensive, maybe not very accurate, and if accurate, very disheartening! Maybe we dont really want to know the true prognosis for this illness.
    And yet, even one recovery story does give refutation of the sometimes general belief that you have this condition for life.

    Retrospectively, recovery stories will illuminate the areas of etiology and pathology, if we ever find out what those are.
    We will be able to say.. aha! thats why such and such worked. Small comfort now i suppose.
    But if people have recovered they must have recovered for a reason.

    In my own small town of 5000 people, i have spoken to one woman who was bedbound for 5 years and has now, of her admission completely recovered. Doesnt even think about cfs in her everyday life.

    One male, 42, who after 8 years has recovered to the point where he run a marathon will no ill effects afterwards.
    He has just got married. He is very fit, was an athlete beforehand, and believes that keeping up some sort exersize during his illness was important. He has to monitor his illness and energy levels, but still....impressive.
    (This reminds me of AFL footballer Alistair Lynch who continued to play at the highest level during his illness).
    I'm not suggesting we all take up aerobics. I know theres a huge range in capabilities between different cases.

    Ive talked to another male,about 45, who has just gone back to full time work after 5 years of illness.( Have to talk to him to see how he's going).

    Anecdotally i know of two other males who are said to have recovered. Though, this is not useful when hearing it
    from the man on the street. Unfortunately the general feeling in my town is me/cfs is just something you get for a
    few years, then you recover. Nothing too serious.
    Of course the general public are a bunch of plebs and this attitude doesnt help me at the moment, but you can see
    that even in a small town like this there are recovery stories.

    We could argue what recovery means. The heartbreaking thing for me is that i just dont feel like my old self even
    when i have peroids of relative wellness. I dont feel comfortable, my body doesnt feel the ease and sensuality it used
    to feel. Sex is not the same, music is not the same etc etc. I cannot use my brain at the level i did before.
    Convalescence should give me the time to pursue art the way i did before, but you need lots of energy and brain
    power to do any mental work at a high level. Theres always the hope that faculties will return.

    If you know any recovery stories, pop them on here. Not exactly a registery, but i would be interested to hear.
  4. SOC

    SOC Back to work (easy, part-time work)

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    I'm not sure that we have a definition of recovery. :) There's people who feel "normal" for years and then relapse; there's people who go into remission (but may relapse later); there's people who are functioning normally but still have some mild symptoms; there's people who are functioning normally but do it by staying on meds and treatments; there's people who have made dramatic improvements but are still ill.

    All these stories can have elements of hope, but there may also be some sadness and disappointment. Do you have any idea what kinds of stories you want to include?
  5. taniaaust1

    taniaaust1 Senior Member

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    After being long term bedbound (almost beyond sick, I think I almost died at one point)... I ended up researching a stage where I recovered for a few years. Recovery to me means I was like fully recovered.. no ME/CFS symptoms at all. Not having to watch myself, not having to pace anymore. (anyone having to pace activities in anyway or avoid things at times I wouldnt call fully recovered).

    While recovered I completed in a 100km trailwalker marathon (one of the worlds biggest ones). I only ended up doing 90km of it due to gaining a groin injury and going into hypothermia collapse and needing treatment for that so was ordered to pull out (or told I'd die otherwise) after the ambulance people on scene warmed my body up... but probably ended up with those issues cause didnt bother training leading it to it like nearly all the other competitors.. yeah I know, a completely crazy thing to do a marathon with no preparation training!!! (I had no one to train with so just was leading my regular life). I got no post exertional fatigue from that marathon, no relapse.

    One can seriously push oneself throu anything if one has a past history of ME/CFS but has recovered, running.. well limping and leg dragging 40km of that marathon in agony with the groin injury after already having run 50km (and run throughout the whole night with also blisters upon blisters, my toes werent recognisable as toes) was nothing like the effort involved just to get to the loo when I was very sick with ME. NOTHING compares to ME, the pain of ME and the exhaustion of ME.

    I crashed thou back into ME/CFS again after I caught a virus (a normal cold or flu virus I think) and didnt rest while I had the virus as I was so healthy again.. I didnt think I needed to care or rest any when I caught it and was sick.
  6. beaverfury

    beaverfury beaverfury

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    Yeah, trying to define recovery is a very tricky thing. But definition is not what i see as the purpose of such a list.

    I think if a person self reports that they are back to a level of functioning that they are happy to consider recovery it is enough to give hope.

    "After being long term bedbound (almost beyond sick, I think I almost died at one point)... I ended up researching a stage where I recovered for a few years. Recovery to me means I was like fully recovered.. no ME/CFS symptoms at all. Not having to watch myself, not having to pace anymore. (anyone having to pace activities in anyway or avoid things at times I wouldnt call fully recovered)."

    And that is the purpose of such a registery. Not sciencifically or statistically applicable, but then
    the science and statistics are not on our side at the moment.

    If there was a list of names you could click each name to get more detailed information. Then you could use your own discretion to decide if you could call each case a recovery. Science is unable to qualify or quantify such a thing
    to date, so personal reporting is as good as it gets.

    I think people who have had me/cfs for a number of years are cautious about reporting victories in any case. You would have to take each testimonial on its merits. I would rather hear recovery details and be dubious than have the lack of encouraging information we have at the moment. Of course i wouldnt want to raise false hopes. Theres always the relapse factor as you mention.

    For me, if flexible guidelines are set down which promise nothing, no-one can say the things out of square!
    It would be designed to comfort without laying the ground for science like definitions.

    Dont want to make the thing all pink and fuzzy, but the fact is some people do report being recovered!
    And it would be beneficial to record it rather have them sail off into the sunset without us.

    I would guess that everyone on PR knows at least one person who has recovered. Thats a fairly big network.
    The idea would be to collar these abnormal beings and ask them to add their story to the registry.

    Feel free to shoot me down. Im not capable of seeing things from all angles.
    SOC likes this.
  7. Shell

    Shell Senior Member

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    I would love to see stories about recovery and/or remission. Even 70 to 80% remission would be good to see.

    I have a sneaky suspicion that those who get well are the ones to go to bed at the beginning of the damn thing - either through choice or because someone makes them.
    I have an even more sneaky suspicion that "mind over matter" can be a dangerous thing. Convincing yourself you are not ill, when you are, and pushing ahead as though you are not ill when you are is way more damaging than having the good sense and humility to accept you are ill and let your body guide you.

    Nearly every story I have seen, or person I have know who has recovered enough to be in a relatively good remission - went to bed in the beginning.
    If recovery stories show a pattern of behavior, or even a set of meds, that leads to remission we have some very valuable information then.
    SOC likes this.
  8. taniaaust1

    taniaaust1 Senior Member

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    In my own case.. which at first was a sudden but of slow onset eg sudden viral symptoms but which would be over in a week and with pushing myself tey happened more and more until it was a continuous viral like illness9mths-1 year later. I pushed myself while the illness was becoming more and more common, getting sicker and sicker.. I actually pushed until I was completely bedridden. (not cause I chose to go to bed but I had no choice to be there). I didnt know I had ME/CFS so didnt know I shouldnt be doing that and was struggling to get throu collage and a single mother of two young ones.

    My 9-10 year old had to become my carer for 9mths as I couldnt do a thing. When I did slowly start to improve after that 9mths stuck in bed, I very quickly came to see that I'd go straight back to bedridden for a few weeks unless I enforced agressive rest therapy one could say. So from that time on I forced myself to rest to a point where I didnt crash even thou it meant my daughter was still having to look after me at times (something I hated doing to her but I could see it was the only way I slowly improved).

    It was about 4 years of agressive rest therapy (ART) (after I'd stopped being completely bedbound for almost a year.. i was still housebound thou) which over time I slowly got better and better till I reached the full remission point. (the percent I got better by each year got greater and greater.. eg I probably improved by 5% of first year of ART, say by 8% (on top of the 5% so probably 14%) second year (which was actually my third year of ME due to one year of slow onset, one year of bedbound and then after that improving), 15-25% (on top of the 5&8% eg 35% improved all up) the year after. (the figures are examples of my improvement, I cant now remember the exact figures).
    The more improved thou I was.. the huger the jumps were in improvement each year till I was fully in remission.

    From my experience I think it seems to demonstate that the less bad you are.. the quicker recovery possible as it happens faster. (im talking about improvement just with avoiding crashes and real good pacing and resting as much as needed).

    Something is different with my illness the second time around a even with avoiding crashes.. I cant seem to get better. I can avoid crashes so not to get worst..but I just cant seem to improve.. aggressive rest therapy no longer brings me improvement (except if im in a crashed state at the time).

    I wanted to share this part of my story as it shows that there can be improvement from no matter how bad you've been and also if you've had this illness for more then a couple of years. I think having to learn to pace well and not cause myself to get worst from that first couple of years of very bad expereinces with this illness.. lead to my recovery. If I hadnt been as sick as I had gotten at one point.. I wouldnt have been so strict with the aggressive rest therapy and pacing. I had thoughts of that hanging over me and knowing that I'd nearly died and I had to do all I could to make sure I didnt do anything to send me back to that state till I'd fully recovered.

    I not only gave my body all the rest it needed and rest to heal but also worked hard on my thought patterns eg to try to avoid all stress and negative thinking (tried not to dwell on bad stuff and tried to live in the now moment and not in the past or future). I gave my body every opportunity I could to heal.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have gone from a 3 out of 10 struggling to working 2 days a week and being wiped out the rest of the other 5 days a week and spending it in bed, to a 7-8 out of 10 with antivirals, but its and up and down 7-8. I work fulltime but probably take more sickies then most. My days off of late are about resting. I seem to go through patches where i can exercise some a couple of days a week for a few weeks and then i lose this ability. Going by dr lerners disability scale im recovered, do i feel recovered, no way. Im functioning better then most. I know many who are house bound or worse and would love to be able to work and i dont want to sound ungreatful for my improvement, but all work and no play is still a miserable place to be especially when it wipes you out, im not as bad as others but miserable all the same. To me working is keep the banks away from repossessing the house. I will feel recovered when i can work fulltime without feeling wiped out and to be able to exercise and socialise like others my age, oh! and can sleep drug free. Also may explain why i keep searching for more answers for more improvement. I want that stable 9 out of 10. Im getting there slowly i think????

    cheers!!!
    meandthecat, taniaaust1 and justy like this.
  10. SOC

    SOC Back to work (easy, part-time work)

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    Yeah, on Dr Lerner's scale "Recovery" has a different meaning than most of us use. I think it was based on some standard disability scale which used "recovery" to mean being able to work, but still getting over the illness. My daughter was in the "Recovery" part of the scale (7-8) about a year before we felt she was in remission (9-10). Dr Lerner was still pushing her to take it easy and get a lot of rest when she was at 7-8. I believe he also said no exercise for the sake of exercise until she was a 9.

    My uncle started out with Dr Lerner when he was about where you are, heaps. It took a long time (years), but he now considers himself cured. He's a very active retiree -- dancing, playing softball, doing heavy household maintenance, babysitting grandchildren, etc. So, I can see you getting there, too, but I suggest you stop the exercising and rest as much as your necessary work allows. ;)

    We consider my daughter in remission, but she still takes meds, so I certainly wouldn't consider her cured. I suspect she still has immune dysfunction (we'll know in a few weeks). She's slipping a bit this semester, so we're hoping Dr Rey can do something to boost her up a bit.

    That said, this past summer she worked full-time in an engineering practicum program and this semester she's a full-time senior in engineering and continues to work in her company's practicum program 10 hours a weeks. She walks a lot and swims some. She lives on her own and takes care of herself -- which she couldn't do her first two years in college. We consider her a 9-10 on Dr Lerner's scale.

    I'm not convinced that there is a cure, yet. I suspect that even those who are recovered or in remission will be found to have immune, ANS, or mitochondrial dysfunction. There's still so much we don't know about this illness.

    I think, though, that a number of people have made substantial improvements and are able to get on with their lives. I'd love to hear their stories!
    meandthecat, taniaaust1 and heapsreal like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think when i am feeling abit better and start to exercise some, even though i would call it light exercise, i dont think its helping me. I think/thought i remember lerner saying a score of 8 is when to start exercise??
    I think your right in that many who are supposedly recovered still have issues and need to be careful. Dr Bell did a study of his patients 20years after being diagnosed with cfs and he said that many would say they were recovered but questioning them further they hadnt really, but had developed ways live with cfs. one example was that he asked them if they got headaches and they would say yes, daily but thats normal. They would answer questions like that, so really they sort of adapted to their reduced ability but still had many symptoms like headaches, insomnia etc

    cheers!!!
  12. GracieJ

    GracieJ Senior Member

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    "Recovery" from ME/CFS is a funny animal at best. Is it recovery, or is it a remission, for starters?

    I have had a few times in my life with FMS and ME/CFS where I was doing really, really well, and was excited to share with others. It often is met with disbelief and discredited by the patients themselves. "If you are feeling better, then you must not have it" is the general response. "It's not possible to get better from this." What a crazy, wacky viewpoint when everyone is searching diligently for answers and relief! Few question their own thinking. End point there is that it is very difficult for someone who is recovering function to share the story when faced with a wave of skepticism. In my case, there is the added dimension of having recovered function on alternative methods, which of course is from the devil. :)

    The answer for me many times is to simply shut up and not talk about it, to go on with my life quietly. Dr. Bell and others in a small study showed that there are people who recover functionality quite well... but never to the level of premorbidity, as they put it. (Heapsreal refers to the same study, above post.)

    These days, I am a little braver and am doing my best to tell my story. Transparency is as tough as ever to deal with as others often doubt what I say, but so be it. This is not a contest to be the most sick person out there and therefore, somehow the most believable? There is no prize here except improved function, and that improvement brings its own challenges.

    Without extensive documents showing conclusive lab reports from earlier dates, recovery reporting can only be considered anecdotal. I feel like a cancer patient who has recovered, but all of my X-rays are lost so I can't show you and I can't show the media reporters. I can only tell you about it. I think it goes beyond scientific methodology because we all need hope, and that cannot be measured in a lab.

    It would be hard to be part of the information-gathering on recovery stories because it is varied and emotionally charged, so really needs to come from an outside third party, who may or may not be sympathetic...

    So here's to the continuing growth of the ME/CFS support community whose focus is becoming sharper all the time! The voices are growing louder.
  13. beaverfury

    beaverfury beaverfury

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    "My uncle started out with Dr Lerner when he was about where you are, heaps. It took a long time (years), but he now considers himself cured. He's a very active retiree -- dancing, playing softball, doing heavy household maintenance, babysitting grandchildren, etc." - SOC

    ....About how many years? How old is he? Thats amazing to hear of someone senior improving to that degree.


    "It would be hard to be part of the information-gathering on recovery stories because it is varied and emotionally charged, so really needs to come from an outside third party, who may or may not be sympathetic..." - GracieJ

    Thats why i kind of pictured such a page being separate from Phoenix Rising, although it could be incorporated, be under the auspices of PR, or just have links.

    I'm guessing ninety nine percent of us on PR are not recovered.
    Ask yourself this question: If i ever feel recovered back to normal life, how many hours a week will i spend on Phoenix Rising?.. Yep! Same answer as me.
    We'd be whooping ass in Monaco together! All night raves n stuff! Lying by the pool sipping pina coladas!

    Recovery stories are most likely to come from escapees, or anecdotally from Phoenix risers who know of escapees.
    (Though only personal testimonies could be used)

    Its this communication gap that a registery page might bridge. Relaying information back to PWC that we dont often
    get. The memorial page can serve a similar service for more sobering reasons. http://www.ncf-net.org/memorial.htm

    I agree the word recovery is very challenging for PWC. Although we dream about recovery each day, its almost a dirty word. Its very painful to go through periods of hope and elation only to have them dashed.

    Also, people who are ill will debate the definition of the word recovery whilst someone who feels they are recovered
    may just subjectively report a satisfaction with the position they are in.

    "Going by dr lerners disability scale im recovered, do i feel recovered, no way." - Heaps

    Zackly! We know our own bodies. People are unlikely to report recovery unless they subjectively feel it. Despite what
    graphs and charts may say.

    Hope i havent killed the thread. I would still like to hear of yourself or anyone you know who has 'recovered'.
    Miraculously, partially or subjectively. Lying by the pool, living, forgetting.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maybe we should say a remission, I have read a few accounts of people saying they returned back to 99.9% which lasted several years and then crashed/relapsed. I suppose until we have a definative biomarker that shows improvement when symptoms improve, then its hard to say.

    But i think its good to hear stories of people improving though. I hope that people read that i was at a 3 out of 10 and have improved with antivirals and find it encouraging enough that they may look into this treatment and be able to improve. Although not recovered and sometimes i feel like i have had a gut full of it even when at a 7 or an 8, i think those that are functioning at a 3 now would very much like to find ways to improve a few points, it can make life more bearable. Like what has already been mentioned before, we dont want people to be discouraged from posting as there seems to be a competition on who is the sickest etc, unless we are a 10 out of 10 then we are not well.

    My earlier years with cfs on the internet there seemed to be a few posts where people improved and then we never heard from them again, i remeber thinking to myself that i wont do this although my frequency may drop off. There seems also to have been a large number of people try valcyte 5-10 yrs ago that improved and never to be heard of again. Its really hard for some of us to find out how valuable this treatment is when these people dont report back, i understand their reasons but it would be nice to know. Its a shame but most of us posting are the unrecovered one.

    cheers!!!
    leela likes this.
  15. taniaaust1

    taniaaust1 Senior Member

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    I copped that from others too when I recovering and then was recovered for those few years .. "You couldnt have had ME if you are recovering". Its kind of funny that some believe that when so little is known about the illness to start with. It sucked as a group I'd sought support from when I was bad all seemed to turn against me "you cant have what we have" when I was improving and no longer saw me as part of their group even thou I was still sick at that point.. (with this hard core ME group, one was expected to go downhill not uphill, If im remembering back correctly they actually ended up kicking me out of the group due to it)
    Sherlock likes this.
  16. Shell

    Shell Senior Member

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    I suppose it's recovery unless you relapse and then it was a remission in hindsight.

    I love to read stories of remission/recovery because it gives me some hope - not so much for me, I'm not convinced I'll ever get well now, but knowing this could effect my kids is horrifying so recovery stories are a great source of reasurance.

    taniaaust1 I wonder sometimes if those who insist you didn't have ME if you recover are dancing with the green eyed monster. It's sad, but there are those who can't stand good happening to someone else. It might be the genuinely believe that no one gets well from this; but they can't know that as there's no proper data on it.
    Sherlock likes this.
  17. SOC

    SOC Back to work (easy, part-time work)

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    I think my uncle was on some form of antiviral or another for about 8 years. He says it was a steady uphill climb for him -- he felt pretty good after a couple of years, but he didn't consider himself "cured" until many years later.

    I think part of the reason he may have recovered is that he was never terribly ill. At his worst, he was able to work full-time, but do nothing else. He was on antivirals a long time, too, which had to have helped. He was in his mid-60's to mid-70's during this time. So degree of illness may be a bigger factor than age in figuring recovery potential.

    He may have been part of the Lake Tahoe outbreak. He was there on business during the outbreak, came home with a bug, and though he never got really ill, he also didn't recover until he'd had a long treatment with antivirals.
  18. SOC

    SOC Back to work (easy, part-time work)

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    I think it's ridiculous for people to suggest that if someone recovered they couldn't have had ME. We don't know what causes it, therefore we don't know all the variations that exist. It's certainly possible that some people can have remissions or recoveries.

    What does bug me, though, are people who insist that because they took ABC supplement, or XYZ treatment and it cured them almost instantly, that it will work for all of us. It is tempting to suggest at that point that maybe they didn't have ME -- not that I would. :angel:;) We do have enough evidence to reasonably draw the conclusion that there is not going to be one simple, inexpensive, fast treatment that's going to cure us all virtually overnight. Not that I won't take it if someone finds it. ;)
    GracieJ likes this.
  19. beaverfury

    beaverfury beaverfury

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    Hang on a second. There already IS a page on Phoenix Rising requesting recovery stories!
    http://phoenixrising.me/archives/7673
    Posted March 6, 2012.

    Thats great.

    Its amazing whats on here when you have a look! :zippit: RETRO ZIP
  20. beaverfury

    beaverfury beaverfury

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    Now got to convince people to post.

    Thats not easy. People do want to move on. Can only ask.

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