Published in InterAction 63, Spring 2008
In our reader survey, you told us that growing old with M.E. causes concern for many of you, especially as other age-related conditions develop and exacerbate symptoms.
We regret that our medical advisors cannot respond to individual enquiries.
Dear Doctor: Unsupported and getting older
My aunt died last year at 73. She had M.E. for at least 30 years, the same as me and I am worried about how it will affect my life expectancy. I live on my own and I am 64. I have no family to support me and my friends are people with M.E. themselves, and they have their own problems, trying to look after their parents. What help is there for pensioners?
Professor Anthony Pinching responded:
M.E./CFS can start in older people, let alone continue. I have seen people with M.E. in their 80s and even 90s and different issues do arise as one matures. Although M.E. has a profound impact on every aspect of people’s lives and causes widespread symptoms, it does not of itself appear to reduce life expectancy.
Consequences of M.E. may lead to other conditions that can affect life expectancy, but some of these seem surprisingly uncommon. For example, despite the sedentary life-style that many patients have to lead, deep venous thrombosis and pulmonary embolism are surprisingly infrequent. However, as we get older, it does become more likely that we will get other conditions that can affect our health, and it is these that will influence life expectancy.
Depression and anxiety are common results of M.E. and its impact; they carry their own risks, so having strong support networks and knowing what to do when it gets difficult, are important safeguards (see Dear Doctor: Help me in my despair).
M.E. can of course be a very isolating illness because of its impact, physically and in terms of brain function, let alone the reactions that other people have to the illness. These issues are likely to be more pronounced in older people and sadly our society is not always sufficiently supportive of them. Whilst I am not expert in these matters, there are agencies and charities locally and nationally that can help eg. with befriending as well as welfare support. Many people are keen to help, but don’t know how. If you ask for something specific: “Could you help with my shopping, or my ironing?” or: “Could you just come round for tea for just ten minutes and sit with me, sharing the view?” – That might be more likely to succeed!
Other members have raised questions about how other conditions or their treatment can affect M.E. For example: “I also have a heart condition. I found that taking statins to reduce cholesterol made my M.E. symptoms worse.” There are several ways in which M.E. can interact with other conditions, and vice versa. Clearly, having more than one condition will add to the burden of illness. Some conditions may actually stir up the M.E. It can sometimes be hard to tell which condition is causing which symptoms. Treatment for another condition may also affect the M.E., or its treatment. For example: people may have both M.E. and hypertension.
There is negligible overlap of symptoms (raised blood pressure doesn’t of itself generally cause symptoms), and there are few interactions between the conditions. Most treatments to lower blood pressure don’t seem to upset M.E. (beta-blockers are the main ones that often do, increasing fatigue and weakness). If they do, there are plenty of alternatives.
People with M.E. who are also found to have raised cholesterol levels, may need to take medications called statins (eg. simvastatin, atorvastatin). Statins can sometimes cause side effects of muscle pain and weakness, even in ‘normal’ people. This side effect doesn’t seem to be more common in people with M.E. – but if it does occur, it probably has a bigger impact, especially for patients who already have such symptoms. If you have M.E. and then get a significant infection, it is not surprising that this can really stir up the M.E., because the activation of the immune system by infection is very similar to that seen in M.E. (see Dear Doctor: Could chronic infection underlie my M.E.?). If that happens, then it is really important to treat the infection and to cut back on activity.
Antibiotics don’t always suit people with M.E. and finding the right one can be quite a challenge. The problem is that reactions are very individual. There is no simple list of ‘good’ and ‘bad’ antibiotics for people with M.E. And if the reaction of the M.E. to the infection is a bit delayed (as it is with activity), you might blame it on the antibiotics when it is actually due to the infection. Not easy! People who had mood disorders before they got M.E. often have real problems with activity levels. For mood disorder, some find that exercise can really help. But when they have both conditions, they may find that they can’t sustain the level of exercise that helps mood without triggering a ‘boom and bust’ M.E. setback.
The most important thing is that, if you are not sure what is going on or what to do, ask your GP or specialist to guide you. That’s what they are for.
Epidemiologist Dr Derek Pheby commented:
It is conventional wisdom that M.E. occurs predominantly in young adults, and the particular problems of elderly people with M.E. are rarely given the consideration they merit.
Old age is characterised by increasing ill-health and a great many illnesses become increasingly common with advanced age. Two-thirds of all cancers, for example, occur in people of retirement age and other illnesses, ranging from chronic obstructive pulmonary disease to osteoarthritis, are very much age-related.
People with M.E. are just as much at risk of the illnesses associated with aging as other people, but with additional problems due to already being ill, with in many cases substantial pre-existing disability. This creates very considerable problems for these people and their care needs are frequently unmet by the statutory services.
A major difficulty in meeting the needs of elderly people with M.E. arises from the fact that we have no clear idea of the scale of the problem. In the 1999 report on Chicago by Jason et al, the prevalence of M.E./CFS in people aged 60+ was 354 per 100,000 population. This was less than half the rate found in people in their 40s, in whom the prevalence was 805 per 100,000 population. It should not be concluded from this though, that the majority of people with M.E. recover completely as they get older. Nearly 50 years after the Akureyri outbreak in Iceland, eight out of ten people affected still experienced symptoms of the illness.
Melvin Ramsey wrote, “Complete recovery... appears to be confined to one third of cases… A tendency to relapse spontaneously or under stress... remains for many years. The remaining two-thirds are equally divided between those who pursue a fluctuating course initially and then stabilise at a lowered energy level and those who have a severe and debilitating downhill course.”
Similarly, Komaroff wrote: “This acute illness never seems to fully resolve. While its character may change over time, and its severity may vary, a state of chronic ill health ensues.” A systematic review published in 1997 demonstrated that, even when patients claim full recovery, very few return to their pre-illness level of functioning. The authors reviewed five studies in adults and found that, in terms of functional capacity, fewer than 10% returned to pre-illness levels of activity, the majority remaining significantly impaired. There is thus an apparent paradox, with some research suggesting that full recovery is rare, while other research suggests that M.E. is less common in older people than in younger adults.
How may this be explained? A possible explanation is that the observed differences in prevalence between age groups is due to a cohort effect rather than an age effect. In other words, the existing age distribution is not fixed for all time, but the high prevalence that has been observed in the 1980s and early 1990s in the ‘baby boomer’ generation is a feature specific to that generation.
This creates the ominous possibility that M.E. will become more common in older people as the baby boomer generation moves into the elderly category. This is something that should be taken on board by providers of health and social care services. Another problem for elderly people with M.E. may be failure in many cases to diagnose the condition accurately, particularly in the presence of other physical conditions with overlapping symptom patterns, given that many health care professionals either remain sceptical about M.E., or lack confidence in diagnosing and treating it. This is likely to compound further the problems of inadequate service provision.
Even where appropriate treatment exists and is implemented, older people may fail to respond as effectively as younger people. A study of the treatment of people with cellular immunodeficiency, many of whom had chronic fatigue syndrome, found that 28.9% of those aged between 54 and 77 failed to improve clinically, compared with 11.5% of people aged 44 to 53. Similarly a prospective study of prognosis in 100 people with M.E. found that older age was associated with poor prognosis.
The problems of the elderly are a major challenge for all those concerned with the well-being of people with M.E. Research of all types is needed. Epidemiological research is required to determine the scale of the challenge across the country, both now and over the decades to come. Social research is needed to identify the specific problems of elderly people with M.E., in particular the problems of living with a serious disabling illness in the presence of other illnesses, often in conditions of extreme social isolation and without supportive social networks. Research into treatments should take into account possible differences in response to treatment between elderly and younger people with M.E.
Finally, faced with the strong possibility that elderly people with M.E. may increase rapidly in numbers in coming years, statutory and voluntary agencies should start planning now to meet care needs should this arise.
Ben Moore of Age Concern said:
"Age Concern [now Age UK] is the UK’s largest movement working with older people and those who care for them. Local groups provide a wide variety of services, leisure activities and social opportunities for older people in their areas.
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