Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Age and illness duration in Chronic Fatigue Syndrome

Discussion in 'Latest ME/CFS Research' started by MeSci, Apr 26, 2016.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Rather surprised not to see this here - maybe it's here somewhere!

    http://www.mdpi.com/2075-4418/6/2/16/htm

    The Relationship between Age and Illness Duration in Chronic Fatigue Syndrome
    Elizabeth Kidd 1, Abigail Brown 1, Stephanie McManimen 1, Leonard A. Jason 1,*, Julia L. Newton 2 and Elin Bolle Strand 3

    1 Center for Community Research, DePaul University, 990 W. Fullerton Ave. Suite 3100, Chicago, IL 60614, USA
    2 Clinical Medicine, Newcastle University, Newcastle NE2 4HH, England
    3 Division of Medicine, Oslo University Hospital, 0450 Oslo, Norway
    *
    Correspondence: Tel.: +1-773-325-2018
    Academic Editor: Andreas Kjaer
    Received: 24 February 2016 / Accepted: 14 April 2016 / Published: 22 April 2016

    Abstract


    Chronic fatigue syndrome (CFS) is a debilitating illness, but it is unclear if patient age and illness duration might affect symptoms and functioning of patients. In the current study, participants were categorized into four groups based upon age (under or over age 55) and illness duration (more or less than 10 years). The groups were compared on functioning and symptoms. Findings indicated that those who were older with a longer illness duration had significantly higher levels of mental health functioning than those who were younger with a shorter or longer illness duration and the older group with a shorter illness duration.

    The results suggest that older patients with an illness duration of over 10 years have significantly higher levels of mental health functioning than the three other groups. For symptoms, the younger/longer illness duration group had significantly worse immune and autonomic domains than the older/longer illness group. In addition, the younger patients with a longer illness duration displayed greater autonomic and immune symptoms in comparison to the older group with a longer illness duration. These findings suggest that both age and illness duration need to be considered when trying to understand the influence of these factors on patients.
     
    Last edited: Apr 26, 2016
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  2. *GG*

    *GG* Senior Member

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    I think I have heard of results similar to this before. Interesting stuff :)

    I'm under 55 and been ill over 10 years now. 13 years to be rather exact. Does seem like my mental clarity is better these days than in the past, but perhaps that was because I was working so had other stressors on me?

    GG
     
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  3. Webdog

    Webdog Senior Member

    I would say overall (ignoring the episodic nature of the illness) that my cognitive functioning improved the first 23 years, then worsened the next 15 years.

    What the future will bring, only time will tell. But at age 53, the trend is still downward.
     
  4. u&iraok

    u&iraok Senior Member

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    Hmm. I wonder what it means?
     
  5. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    When it says mental health functioning, I wonder if it means being able to deal with being unwell - less inclined to become anxious, depressed, discouraged, etc.
     
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  6. justy

    justy Donate Advocate Demonstrate

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    Yes - a discussion of what mental health functioning means would be good to clarify. Do they mean cognitive functioning? less mental health issues such as depression? or what?

    My cognitive dysfunction waxes and wanes, am under 55, been ill for over 20 years to varying degrees, but the last 7 severely ill. BUT my mental health status has significantly improved in the past couple of years - I am far less anxious and don't get down about it as often or for as long. Acceptance is better and I get less anxious because I know I can have these severe feelings in my body and still be OK (ish)
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    I have been ill a long time -- more severely the last decade. When talking mental health I am struck by the thought that we are talking emotional wellbeing/disposition-- mental being somewhat ambiguous.

    In the past my illness has had an effect on my disposition and cognition. Too fatigued for detail but wanted to say this: I'm presently ill enough that I think anything that might look like depressed mood would actually be too draining to sustain. I have become somewhat emotionally flat. Even when my daughter comes home for a visit I can't work up too much emotion and what emotion I manage because I am happy leaves me exhausted.
     
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  8. Battery Muncher

    Battery Muncher Senior Member

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    I too suffer from very strong emotional flatness, particularly after the fifth year (currently on my 11th).
     
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  9. panckage

    panckage Senior Member

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    Doesn't seem like a very good study. People over 55 probably have better mental health because they feel like they are missing out the least because of the disease. I mean retiring a few years early isn't a huge deal in the grand scheme of things


    OTOH if you are young just started your career (or haven't even stared yet) it would be much more stressful for the average person

    As people on this forum like to say this seems to be more of a psychobabbler type of study :p
     
    Last edited: Apr 29, 2016
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  10. lansbergen

    lansbergen Senior Member

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    So old people don't matter. I am 71. Am I supposed to sit behind the geraniums all day, every day and wait to dy?
     
  11. ghosalb

    ghosalb Senior Member

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    The paper says "No significant differences were found across the symptom domains of fatigue, sleep dysfunction, pain, or neurocognitive."
    But if I look at the data in Table 1, older/longer scores are consistently lower than other groups. This is also my personal experience....most symptoms worse now than 10-15 years ago. Am I missing something ?
     
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  12. redrachel76

    redrachel76 Senior Member

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    I don't think he meant that.

    I think he meant that although this illness is horrible at any age, it is harder to get it young, than to get it at a time in life when you've achieved some stuff you wanted in life and the only really harsh adjustments would be arranging an earlier pension and dealing with horrible physical symptoms.

    It's not meant to say that it's a joke. I agree that it's logical that an older person could mentally deal with this better than a younger person.

    It's a poor study of psycobabble.
     
    Last edited: May 8, 2016
  13. Sushi

    Sushi Senior Member Albuquerque

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    Except you may be forgetting that most ME/CFS patients who are over 55 got sick when they were young and may have been sick for 30 years!
    So they will have missed out achieving things they cared about and then must continue to deal with awful symptoms in older age.
     
  14. AndyPandy

    AndyPandy Making the most of it

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    I think this illness and its consequences are vile at any age.

    Because of this illness I was medically retired from working as a lawyer before retiring age.

    It was no comfort to me that I was relatively close to retirement.

    I had plans for many active healthy years ahead.

    Those plans are not possible due to severe ME/CFS. The losses are keenly felt.

    I don't know if my mental health is better or worse than someone younger.

    I know I have to put in the effort to maintain reasonable mental health. I didn't have to do this before I became ill.

    Best wishes Andy
     
    Last edited: May 8, 2016
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  15. Old Bones

    Old Bones Senior Member

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    I fall into the category of patients @Sushi described above. Based on my experience of almost 30 years with ME, I agree with @AndyPandy . Every age category has emotional challenges with this, or any other life-altering chronic illness. For me, it's only been in the past few months that I've started to feel a bit panicked, with the realization that it's too late to have many parts of the life I'd planned. I should be travelling in what appears to most people to be my retirement. Or playing with the grandkids I'd likely have, had I been well enough to have children. Or reliving the happy memories of a life well-lived. Or . . . . .
     
  16. ukxmrv

    ukxmrv Senior Member

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    I notice as I get older the cut off ages for both research projects and clinical trials of possible cures

    https://clinicaltrials.gov/ct2/show...lophosphamide chronic fatigue syndrome&rank=1

    i.e it's 65 here.

    This does worry me in part as the survivors of well known outbreaks of ME being more and more excluded

    and on a personal note the dream of being able to join a trial of something that may work

    Facing "retirement" isn't an option for me. No home, no assets and most of my adult lifetime of ME.
     
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  17. Old Bones

    Old Bones Senior Member

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    My living and financial circumstances are not as dire as those of many long-term patients. I can't imagine how I'd cope physically and emotionally with no husband or home. Not at all well, I suspect. So I admire those who persevere despite these additional challenges. ME is hard enough on its own.

    From my perspective, the only benefit of reaching 60+ is that one can answer "I'm retired" to the inevitable "What do you do?" query. Much better than "As little as possible ". I tried that a few times just to see what kind of reaction I'd get. Most people were stunned into silence, and looked quite uncomfortable. Retirement is seen as an "achievement", but only if people don't know we've been "retired" for years/decades. Of course, now people wonder why I'm doing so little in my retirement. It's unfortunate we live in a society where it seems preferable to appear lazy and uninteresting than to divulge a diagnosis of ME.
     
  18. meandthecat

    meandthecat Senior Member

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    As this was based on self-assessment I guess you are only as old as you feel.

    In which case I aged over 30 yrs in the first 3yrs of this disease and anxiety was a major problem. As I improved I got younger and became more emotionally resilient, though the period of my illness was extending, but my cognitive difficulties became worse.

    As my wife says that I have entered a second childhood does this mean that I have Youngered more than I had realised and can expect to go through all of this again.

    I do hope not, I didn't like being 85 (apologies), life just keeps getting tougher.
     
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  19. Dolphin

    Dolphin Senior Member

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    They discussed this a bit:
     
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  20. Dolphin

    Dolphin Senior Member

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    I would like if this and a lot of studies also looked at length of time since diagnosis. It can take people different lengths of time to get diagnosed. For example in my case took 5 1/2 years.

    It is hard to come to too much acceptance when you are undiagnosed. Also you will very often have the expectations of a normal or near normal workload put on you before being diagnosed.
     
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