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"Young people have a better chance of recovery", how much do we know about this?

Discussion in 'General ME/CFS Discussion' started by lemonworld, Apr 7, 2017.

  1. lemonworld

    lemonworld Senior Member

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    I feel like I quite often see it mentioned here that young people have a good chance of recovering from ME. This is a phrase I often hear from people that aren't aware of how severe and chronic ME usually is, but I'm surprised to see it mentioned here as well.

    Is there much proof to these statements? And if there is, how much of a bigger chance are we talking? Has there been done many studies on this?
     
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  2. ash0787

    ash0787 Senior Member

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    Probably safe to assume its not true, I mostly hear that statement from people that are pushing CBT/GET etc, don't tend to hear about cases where people were strictly diagnosed and subsequently completely recovered either.
     
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  3. Old Bones

    Old Bones Senior Member

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    @lemonworld This was my experience. I recovered after being ill for a year at age 12 - 13. Unfortunately, I haven't recovered after ME hit again twenty years later in my early 30's. Although difficult to find articles, there are a few statements from trusted doctors and researchers that indicate this is a somewhat common pattern.

    Here are a couple of links that express Doctor Bell's experience. The first is a video of a presentation he made in California in December 2015.



    The segment that relates to this issue is very short -- starting at approximately the 41:30 mark.

    Also from the Open Medication Foundation website:

    https://www.omf.ngo/2016/08/01/prognosis-of-mecfs/

    This article states in the last two paragraphs:

    "One of the results of this paradox is that persons with ME/CFS, particularly adolescents, were felt to have a good prognosis. But overall, the prognosis is poor, 'Full recovery from untreated CFS is rare.'

    It also seems that after a period of improvement for some years, a decline in overall activity occurs. Forty year old adults who had an acute onset during their teenage years have the activity of seventy year old adults."
     
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  4. Manganus

    Manganus Senior Member

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    Thanks, Old Bones!

    You took the words out of my mouth. :)

    I would rather say that it's a very usual asumption. Or maybe a common educated guess.

    Until the mecanisms of ME are well understood, it's not really possible to do any studies on such a specific question.
     
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  5. Snowdrop

    Snowdrop Rebel without a biscuit

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    I'm no expert but I'll weigh in :D While there is no certainty from anecdotal reports and I can't speak to any science done on the topic, I think that IMO there are a good number of young people who are being initially very ill go into a remission for some time (the time frame can be decades) but they are still ill--they still have the disease process ongoing.

    This has been my experience. And I had symptoms still just not debilitating enough to stop me from living life. Also, it depends on what kind of life one had formerly--if you were an athlete than that would be more difficult to return to than other types of work unless you're a rocket scientist and you experience great mental fatigue.

    I think what usually happens (and this is all my supposition) is that as time goes on there is less caution and more likeliness that some major event (either good or bad) will happen that overwhelms your system forcing a crash and possible downward spiral.

    Just as a side since I seem to have the floor here ;) I think some people fall sick initially with very mild symptoms (the initial trigger--which I believe is viral or some other biologic) and then they carry on and later blame the illness on 'stress' factors when they do too much and are overwhelmed causing more severe illness/symptoms.

    But I expect you ask because you are young and have not benefited from this 'remission' from being very ill. I so you have my compassion. But you may be fortunate in another way in that, as you probably know, biologic medicine for this disease is now gaining momentum (and we all hope that continues).

    Learning to deal with this loss is made more difficult when others cannot see that we've lost anything. I look like a normal person who should be able to do all the things a normal person can (right up to the moment when I push too hard physically or even more mentally) then I either look like a sick person or a very stupid one.

    I hope there are treatments that will affect your QoL very soon so that you don't need to worry about waiting for any remission to occur. :hug:
     
    Last edited: Apr 7, 2017
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  6. Esther12

    Esther12 Senior Member

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    There was that recent population based study Crawley did that used loose criteria for CFS, but found 80% (ish?) no longer fulfilled the criteria for CFS after 2 years.

    A greater recovery rate for younger people does chime with my experiences with people on-line, but experiences like those can easily be misleading.
     
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  7. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    I became sick with this illness at the age of 12.

    At the age of twenty, it became much, much worse.

    I do think something was helping me while my body was still growing. But recovery?

    This illness is far more severe than that.
     
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  8. dannybex

    dannybex Senior Member

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    I think it's safe to assume that full recovery from any 'untreated' illness is indeed rare.
     
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  9. Joh

    Joh Inactivist

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    Hi @lemonworld, there are some videos from Nigel Speight online. He talks about kids/teens with ME and in one video he shows numbers/graphs on how many of his patients got better (sorry, not sure which one, might have been "exercise and ME"). If I remember correctly he said that kids have better chances of recovery/remission than adults (if they are allowed to rest, homeschool, pace etc.).

    ETA: From the CCC:
     
  10. Effi

    Effi Senior Member

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    From what I can remember reading (can't remember where though), a lot of illnesses in the 'immune spectrum' can show sudden improvement at points in our lives when systemic hormonal changes take place: puberty, pregnancy, or menopause. This could explain why some young patients improve, if they got sick well before they had completely gone through puberty.

    In case of pregnancy I remember numbers for ME/CFS saying 1/3 improves, 1/3 gets worse, 1/3 stays the same, similar to numbers in other autoimmune illnesses. If we could hypothetically extrapolate these numbers to patients going through puberty, it could mean that 1/3 of young patients spontaneously recover (just in theory though!)
     
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  11. duncan

    duncan Senior Member

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    Just wanted to point out that people fully recover from untreated illnesses quite frequently. We often (usually?) would fully recover from most pathogens that typically we do receive treatment for, even without that treatment.
     
  12. trishrhymes

    trishrhymes Senior Member

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    Since Crawley's population studies use ludicrous definitions of CFS like a child reports feeling tired for 3 months or more, I'd ignore her data. She is not studying ME/CFS, she is studying the symptom chronic fatigue. Kids often go through phases of feeling tired all the time - hormones, anaemia, stress, depression, poor diet, poor sleep habits, a series of infections, etc etc. Not surprisingly most of them don't feel the same 2 years later.
     
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  13. daisybell

    daisybell Senior Member

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    This is an interesting discussion for me because I had a sibling who had mono very severely aged 11. It took well over a year for him to recover... ME was not suggested as a diagnosis but perhaps might have been if he had seen a different doctor? In which case, he would be a recovered case! I think my mother would say that his health and stamina gradually improved over a period of 3-4 years. He also caught every virus going for a while . He's now 40 and has no health issues.
     
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  14. Hutan

    Hutan Senior Member

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    I think those young people who are actively growing are at a stage where their body has to work very hard to achieve that growth. I think it is possible that this burden may contribute to getting ME, in the same way that it seems that intense physical training can. Once the growing is done, the body may have more resources to hand to, if not recover, then at least improve.

    I have seen this with my son, who was at his worst when he was growing the fastest. Now at 17, with his growth slowing, he seems to have some sustained improvement. (Fingers crossed).

    Nice post @Snowdrop. @lemonworld, I hope you are doing ok.
     
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  15. 2kidswithME

    2kidswithME

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    Ther have been a couple papers on recovery in children/ young people. One was dr bells 13 yr follow up, another looked at recovery rates from 3-4 us clinics in the 1990s, if you put them all together the recovery rates are positive for overall improvement but not stunning, very few totally recovered. And there's nothing comparing different treatments. Dr Bell was disappointed in his own figures as he felt they should have been better given they had a sympathetic doctor!

    IMO, If children do better, having parental support has to be part f it, as they don't have to cook etc, and parents tend to fight the battles for them (e.g. With school), thus reducing some of the energy drains adults must cope with themselves unless they have a support network around them.

    My kids both had the same illness pattern, so maybe we were just lucky in that whatever form of ME they had, they could recover. Only time will tell for sure it's permanent, my middle one is now finishing uni and has stayed well throughout. And the youngest is thriving in their first year, coping well on all fronts. If we did one thing right it was that they never pushed through, so they only increased as and when they were ready, and neither had any major relapses, maybe we were just lucky? Mostly we are grateful!
     
    Last edited: Apr 7, 2017
  16. dannybex

    dannybex Senior Member

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    Well, you have a point, at least when it comes to untreated infections or 'pathogens' perhaps. But I've never heard of anyone fully recovering from untreated chronic conditions.
     
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  17. lemonworld

    lemonworld Senior Member

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    Thank you so much for the responses! (I'm very foggy today, sorry)

    When I first got ill, doctors and everyone else kept saying I would recover because I was young, and I should just ignore my symptoms and push through and I would be back to normal soon. (I was an athlete, so of course that was horrible advice).

    I got ill from mono, and never recovered. My aunt got mono at the same time, and took unusually long to recover. But she was allowed to rest, while I was never allowed to - because I was young. It just felt like a dismissal of my struggles. And I don't think the false hope did me anything good in the end either.

    Maybe because of my history I'm overly sensitive on this topic. And I understand that whenever people on PR say that young people have a better chance of recovering, it's in the context of when people are allowed to rest, not in the context that they should push through it. In that sense I guess it's a good thing to say, as it highlights the importance of letting people rest and take care of themselves in the beginning of their illness.

    I'm not knowledgeable enough to have an opinion on this topic. I guess it's just hard for me to see those statements when they don't match my experience, or the experience of my friends, and I can't find any significant backing for it.

    (I'm sorry if I'm coming across as too critical. That is not my intention. I think I just needed to think out loud about this, and would like to get a better understanding of this topic)
     
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  18. 2kidswithME

    2kidswithME

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    Just wanted to give the reference for the more general paper:

    https://academic.oup.com/qjmed/article/90/3/223/1633580/The-prognosis-of-chronic-fatigue-and-chronic

    Hope this link works, if not, please will someone fix it?!

    When I first saw this paper and noticed who the third author is (Sir Simon) I was a bit concerned, but actually the section on children just reports the findings of the few papers they could find on the subject, which if anyone is interested they can look at further. What the tables don't show is any correlation between outcomes and treatment, or not as the case may be.

    Dr Bell's 13 yr followup to the Lyndonville outbreak is here (I hope):

    http://www.ncbi.nlm.nih.gov/pubmed/11331676

    Crawley's research has been mentioned, but given how weak her criteria are, is probably not very reliable.
     
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  19. daisybell

    daisybell Senior Member

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    @lemonworld my mother took my brother out of school - against the wishes of school etc so he had lots of rest until he was actually well enough to return.
     
  20. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    We know nothing about it, but a meta analysis on studies on prognosis showed that under 5 % recover spontanously. So.. we need treatment.

    A lot of doctors says that It`ll pass, but when i hand them the paper they all fall silent.
     
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