Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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Me/cfs question--shortens life-span?

Discussion in 'General ME/CFS Discussion' started by Jessie 107, Mar 31, 2017.

  1. Jessie 107

    Jessie 107

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    This question has probably been discussed before, but I was wondering does me/cfs shorten life span?
    I am 50, I have been ill with this for just two years. Gradual onset and now alot worse. I have already had enough, I can't stand the thought that I may feel this ill until I am old. To all of you that have been suffering from this for many years, I really don't know how you do it. I wish I could of got this when I am older as I still have so much I want to do, I am finding it difficult to except.
    How many elderly people have this?
    Or does it fade as we age?
    Such a waste of life, can we really expect some breakthrough soon to help us? Even if I got back 50%of what I was I would be more than happy.
     
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  2. A.B.

    A.B. Senior Member

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    We think there will be some breakthrough this or next year. The illness does shorten lifespan (or more accurately, it's associated with reduced life span).
     
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  3. charles shepherd

    charles shepherd Senior Member

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    Info from the MEA purple book (2017 edition):

    2017 update on mortality in people with ME/CFS:


    There is very little research examining mortality in ME/CFS. Anecdotal information, as well as some research studies, indicates that there is an increased risk of suicide.


    McManimen et al (2016) have examined whether people with ME/CFS are dying earlier than the overall population from the same cause. This was done through analyzing data on cause and age of death from 56 people with ME/CFS. The findings from this very small study suggest that there is a significantly increased risk of earlier all-cause and cardiovascular related mortality along with a lower age of suicide and cancer. As the authors point out, this is a small study with over-representation of people with severe ME/CFS. So these findings cannot be regarded as conclusive evidence.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  4. charles shepherd

    charles shepherd Senior Member

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    And this is from an MEA Question and Answer on the issue of life expectancy:

    The simple answer to your question about life expectancy in ME/CFS is that we just don't know

    This is because we do not have the necessary evidence on mortality statistics that would come from sound and large epidemiological studies that are recording causes of death and the age of death in people with ME/CFS, and then being able to compare this to the normal population

    So one can only make an educated guess here - which is largely based on what we know about the possible underlying disease process in ME/CFS and the anecdotal evidence relating to people who have died from ME/CFS - which does not suggest that people with ME/CFS have a reduced life expectancy

    Regarding the underlying disease process in ME/CFS and the possible effects on life expectancy:

    On the one hand, there are various reasons as to why some people with ME/CFS might actually live
    longer than expected (eg the presence of low bood pressure, no longer drinking alcohol or having the pressures of work)

    On the other hand there, are various reasons why some people with ME/CFS might have a shorter life expectancy (eg low level neuroinflammation, financial and family stresses associated with the illness, weight gain and possibly developing type 2 diabetes, weight loss, depression and the risk of suicide, adverse reactions to medication etc)

    I ought to add that there are some theoretical reasons as to why there MAY be a slight increase in risk in relation to non Hodgkins lymphoma and ME/CFS - see this summary from my colleague, Dr Neil Abbott at MERUK:

    http://www.meresearch.org.uk/news/mecfs-and-cancer/

    However, when it to comes to feedback to the MEA over many years, cases of non Hodgkins lymphoma in people with ME/CFS are only very rarely reported

    So, in our current state of knowledge (and the very limited amount of published research), my normal advice here is that there is no sound evidence at present to indicate that life expectancy is reduced in ME/CFS

    And this is the information that I provide when this question arises in relation to applications for life insurance policies

    I would try not to worry about this because there are plenty of other more significinant risks in everyday life......

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  5. mhrps

    mhrps

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    I don't think I will manage to live longer than a few years from now. I am getting progressively worse. Until a few years ago I didn't complain about anything but fatigue or overload phenomena. Now it's much worse, especially when it comes to immunity. I notice my metabolism also slowly decreases. Having said all above, I am dying slowly.

    I read that it is widely known that affected ppl die from cancer or heart disease
     
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  6. charles shepherd

    charles shepherd Senior Member

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    I'm very sorry to read about the progressive deterioration in your health

    Although ME/CFS can steadily get worse/deteriorate, this is not the normal course for this illness

    And there may even be a medical explanation that has nothing to do with ME/CFS - for example, developing a new medical condition such as hypothyroidism - which can cause a number of ME/CFS like symptoms and consequently be overlooked

    So when someone reports that their condition is deteriorating, this should always result in a thorough re-assessment of symptoms, a good physical examination, and repeating some of the routine blood tests - checking for low thyroid function in particular - and possibly arranging some further investigations

    You don't say where you live - so the remaining advice below applies to the UK:

    If your GP is stuck, you could ask to be referred to a hospital based ME/CFS clinic/service for a re-assessment, or to a good local hospital physician who isn't focussed on one specific -ology

    Details of all the UK hospital based ME/CFS referral services here:

    http://www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

    Sadly, there are people with ME/CFS who manage their condition in an entirely appropriate manner but do steadily deteriorate for no obvious reason. But I would stress yet again that this should not be regarded as a normal outcome for ME/CFS until other possible explanations have been excluded

    So please go and talk to your doctor about what is happening - if you haven't already done so…..


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  7. Binkie4

    Binkie4 Senior Member

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    @ Charles Shepherd

    Thank you for the input. My experience after 9 years diagnosed with ME has been that it is very difficult to get one's GP to refer for further tests. I have a recollection that Nice guidelines precluded it at one point, but could be wrong on this. Symptoms are assumed to be ME and further investigation discouraged.

    In 2015 I diagnosed myself with a lymphatic problem. Gp reluctant to refer me onwards until I emphasised ( with Dr Google's help) that it was a progressive problem and I then got a referral. Eventually saw the eminent Consultant and my condition was confirmed and I will need treatment for life.

    In 2016 I asked for a referral for review at hospital based ME service. For this first appointment since 2010, I saw a nurse only- the Consultant only sees new patients to diagnose- who offered ( halfheartedly) GET which I refused and I was discharged. On my preappointment questionnaire I had asked for advice on biomedical treatments- I needed to see a doctor for this so no progress was made.

    Also in 2016 I decided to try to seek advice on orthostatic intolerance which was causing me a lot of difficulty and asked my GP
    to see a cardiologist. GP did refer and after several expensive tests, I was diagnosed with heart issues needing treatment and long term follow up. Two weeks ago, I was allowed a blood test for Lyme testing. No result yet. GP would not do all the tests necessary to diagnose hypothyroidism because they are not all offered on the NHS.

    My impression is that there are probably many, many pwme who are being medically neglected because of the perceptions drummed up by Wessely and co. Our GPs are constrained by the NICE guidelines. We are believed to be psychologically ill ( I was told that by the cardio) and physical illheslth is being missed.

    Maybe this will affect not only our quality but length of life.
     
    Last edited: Mar 31, 2017
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  8. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    Remember, the majority of population in developed, western nations, die of cardiovascular diseases or cancer
     
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  9. dangermouse

    dangermouse Senior Member

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    I'm feeling similarly. I've had ME for eleven years. After pneumonia, around a year and a half ago, I've been mostly housebound with the ME.

    After severe chest pains and admission to CCU (around a year ago) I was eventually diagnosed with Microvascular Angina & am on long term follow up & medication.

    I've also developed worsening of what I think is Orthostatic Intolerance with accompanying migraines. These episodes are very difficult to deal with & debilitating.

    I am borderline hypothyroid & am being monitored.

    Whilst my GP is good, his hands are tied by NICE guidelines. I feel it a waste of time & energy going to see him and rarely do. He said I should attend more, though understands the effort it would take.

    I know from my numerous attempts that exercise results in relapse/PEM and each time takes its toll. I'm the worst now that I've ever been and exercising has certainly not helped.

    I'm hopeful that the biological research is going to bear fruit soon. The only time my mood is lowered in any way is when I see the BPS activity. I can't bring myself to trust any of them.

    I just want to be free from ME. I am a naturally positive person. I don't fear anything that may get me better and I know that I don't have false illness belief.
     
    Last edited: Mar 31, 2017
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  10. belize44

    belize44 Senior Member

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    I have often worried about this too. Lately I am waking with high blood pressure which lowers as soon as I rise from bed and drink salt water. Sometimes it doesn't go down to my normal range and I must soak my feet in Epsom salt water for a hit of Magnesium. I also get very weak when my BP rises and it is hard to even get out of bed and address it, even though the numbers are climbing. My BP also drops very low, these fluctuations being due to the Dysautonomia. I have been mostly housebound after having Pneumonia back in the early part of the winter. I am excruciating pain most of the time and often question the validity of such a life.
     
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  11. Sushi

    Sushi Senior Member Albuquerque

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    This is just anecdotal from reading the forum closely pretty much since its inception (founded in 2009). There are many members here who report having been ill with ME/CFS for 30 years or more--though we don't have any statistics on the age of members. It doesn't seem to fade with age. What it looks like to me is that most people seem to start getting symptoms in their 20s or 30s and either their symptoms progress or stay much the same--for a very long time.

    Those who have been sick this long will have had no treatment to speak of in earlier years--because doctors knew nothing about the illness. However, those coming down with the illness now, will have more treatment options in the future due to the likelihood that research will uncover significant findings fairly soon--as A.B. posted below.
    As Dr. Shepherd says, we don't have good research--but again, anecdotally, it seems like the biggest "mortal" risk is suicide. Hopefully, this will change as research brings more treatment options and patients have more hope of recovery. It is true that some people's symptoms progress to severe rather quickly--but then, though they suffer incredibly, most continue to "live" with large quotations marks around that word. Right now (even as a long term sickie) I have a lot of hope for research.
     
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  12. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I am not elderly ;), but in the 30 years I have had this disorder, it has been slowly but inexorably getting worse.
     
  13. Jessie 107

    Jessie 107

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    Sorry to hear you have been ill for so long, very tough indeed. It does seem that me/cfs gets worse as it goes on, not good news for me, not looking forward to feeling like this for years to come, just hope they find something to help us soon. Take care.
    Jessie
     
  14. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    @Jessie 107 - I don't want to make you overly pessimistic. I had no idea what was wrong with me for years. I did pretty much exactly what I should not have. People who get an early diagnosis and begin taking care of themselves have a much better prognosis.
     
  15. Tunguska

    Tunguska Senior Member

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    Yes I think there will be with regard to aging in general, I'm counting on it.

    I posted this and it got no love on this forum: http://forums.phoenixrising.me/inde...homeostasis-in-chemotoxicity-and-aging.50262/
    but it made headlines in worldwide scientific publications.

    I'm counting on science to make good progress in the anti-aging realm in this century, since it's sure to get funding from everyone including cancer research, and I think is likely to help offset damage from CFS/ME, and more. It's in part why I'm not preoccupied about my life expectancy nor about affecting it negatively through experimentation.
     

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