ME/ Chronic Fatigue Syndrome and Social Isolation Survey Report Prepared For: ME/CFS Society Australia (Victoria) 19/11/2010 Rebecca Bishop, Monash University

Table of Contents Executive Summary:...................................................................................................................................... 3 Introduction: ................................................................................................................................................. 4 1.1

Purpose: ........................................................................................................................................ 4

1.2

Methods ........................................................................................................................................ 4

1.2.1

Survey.................................................................................................................................... 4

1.2.2

Participants ........................................................................................................................... 5

1.2.3

Data Analysis ......................................................................................................................... 5

1.3

Limitations..................................................................................................................................... 5

1.4

Background Literature .................................................................................................................. 6

MEC/FS and Social Isolation .................................................................................................................. 6 Indicators and Impacts of Social Isolation ............................................................................................ 7 2.

Results ................................................................................................................................................... 9 2.1 Demographics and disability status .................................................................................................... 9 2.2 Employment/Study ........................................................................................................................... 11 2.3 Lifestyle ............................................................................................................................................. 15 2.4 Indicators of Isolation ....................................................................................................................... 18

3.

4.

Discussion............................................................................................................................................ 25 3.1

Demographics and disability status ............................................................................................ 25

3.2

Employmet/Study ....................................................................................................................... 25

3.3

Lifestyle ....................................................................................................................................... 26

3.4

Indicators of Social Isolation ....................................................................................................... 27

Conclusions and Recommendations ................................................................................................... 29

References: ................................................................................................................................................. 31 Appendices.................................................................................................................................................. 33 Appendix 1.1 ........................................................................................................................................... 33

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ME/Chronic Fatigue Syndrome and Social Isolation Executive Summary: The purpose of this research is to gain an understanding of the levels of social connection and isolation. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a disease that causes fatigue and severe limitation on activity and therefore this research has been done to discover if the people living with ME/CFS are socially isolated due to this. This is important as ME/CFS is widely not recognised among medical professionals and is often misdiagnosed as a mental illness not a biological disease (Carruthers, et al., 2003). This research was done via an internet based survey and comprised of 46 questions that were a mixture of open and closed ended types, this accounted for the fact that qualitative research could not be done as it would be too arduous for the people who have ME/CFS. The survey was chosen as the respondents could complete it in their own time and stop and re-start it when they wished. The results from the survey revealed that there is a high level of social isolation among the people living with ME/CFS; there were a number of reasons identified for this. One reason for social isolation was that family and friends had a limited understanding of the condition and were therefore not supportive. Many people had to cease work or studying at some stage of their illness as they were too sick or disabled to continue which caused a loss of social contacts and future goals. Finally the debilitating nature of the illness caused the people living with it to be unable to get around and interact with others and society. This research found that social isolation was a problematic issue for people with ME/CFS and it was causing them to feel depressed and crating further disability.

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Introduction: 1.1 Purpose: To gain an understanding of the mental implications of having a condition such as ME/CFS most specifically the social connectedness and isolation of the people living with the condition.

1.2 Methods 1.2.1

Survey

This study was done using a survey with a semi-structured design. While in some parts the questions were rigid and formal there was also space for the respondents to give qualitative information by either expanding on their response or explaining other issues they had. The survey was created on ‘Kwik Surveys’, an internet based survey company. The questionnaire structure was mixed in that it used a similar approach across all sections and general and specific questions were asked not in any order but as they were required for the project (see appendix 1). Overall the survey consisted of thirteen pages; this included eleven pages of questions in addition to an introduction page and a completion page. Over the eleven pages there were a total of forty-six questions however not all were applicable to all respondents and were indicated as so. The questions were inclusive of those that directly related to the research and also those that were included to support and supplement the findings. The questions were directed at the respondent and were of a personal nature to effectively answer the research question. There was a contingency filter applied to one section of the survey to exclude part of the population from answering some questions and redirecting them to answer different questions, this was done to ensure only relevant respondents took part in these questions. On completion of the survey respondents were directed automatically to the ME/CFS Society of Victoria’s website.

A pilot version of the survey was sent to five people to test and determine if any issues would arise, this edition of the survey invited participants to comment on the survey itself in relation to readability, sensitivity and overall understanding. The feedback received from these participants was then used to edit and change the content and come to the final edition of the survey.

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1.2.2

Participants

Participants for this study were recruited through a purposive sampling technique. The members of the ME/CFS Society of Victoria were sent email invitations to participate in the survey, the email contained a brief description of what the aims and purposes of the survey were including outlining the ethics and confidentiality measures taken. After reading the introduction the respondent could decide whether they wanted to participate by clicking the link attached to the email. 1.2.3

Data Analysis

Through the online survey tool a basic analysis of the results could be viewed. The data was analysed after being exported to a grid on Microsoft Excel. The qualitative responses from the questionnaire were divided into themes and key issues were derived via determining the most commonly mentioned issues and terms.

1.3 Limitations There were a number of limitations when implementing this research that could have had and influence on the final results. The survey was unable to be sent out in a paper format to members of the organization without access to the internet due to lack of resources, as internet access was an important indicator used in the survey to determine the level of social isolation this could possibly limit the scope of the responses. There are also limitations with the internet survey format itself, these include the selection bias that is possible, the survey was emailed out and it was only available to members of the ME/CFS Victoria organization, this excludes those people with ME/CFS that are not members of the organization or are members of a ME/CFS society in another state. A lack of resources also limited the access to online survey software; most of the prominent survey sites charge a fee for a survey the size and scope of this and therefore were not able to be used. Other limitations included the time available to implement the survey as it was only able to be discussed and worked on one day per week. As the survey was distributed to people that are living with ME/CFS there needed to be a long time for the survey to be available. This was due to the nature of the illness, there were time restraints on getting the results and despite responses still coming in or some surveys only being half completed the survey needed to be closed.

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1.4 Background Literature MEC/FS and Social Isolation Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a health condition that has symptoms inclusive of severe fatigue, disturbed sleep patterns, muscle and joint pain, neurological or cognitive manifestations, problems with the gut and immune system and also troubles with maintenance of a stable body temperature (Carruthers et al., 2003; Friedberg, 2010). To be diagnosed with ME/CFS a combination of these symptoms need to have been persistent for at least six months (Carruthers et al., 2003). Despite this there has been conflicting views within the literature about the nature and classification of ME/CFS, many physicians are reluctant to diagnose this condition as there is little of knowledge of the illness and until recently a biological basis has been hard to determine (Friedberg, 2010; Fukuda, 1994; Pinikahana, Holloway & Millen, 2002). Due to the lack of diagnosis of the condition the prevalence in Australia is difficult to accurately determine, it has been identified through research at 0.2%-0.7% of the Australian population are living with ME/CFS however this could be significantly underestimated (Royal Australasian College of Physicians Working Group, 2002). The physical implications of the condition ME/CFS limits the amount of activity that people can do considerably when compared to a person who does not have ME/CFS and in some cases may cause people to become bed bound for an extended period of time (Anderson, Permin and Albrecht, 2004). It has also been suggested by the literature that these limitations on activity can be detrimental to the mental health of a person who is living with ME/CFS (Anderson et al., 2004; Pinikahana et al., 2002). When people have ME/CFS the symptoms often force people to reduce work load and the amount of social interaction that they can participate in on a day-to-day basis (Fuller-Thompson & Nimigon, 2008). Fuller-Thomson and Nimigon (2008), indicate that it is not unusual for a person living with ME/CFS to sleep for 14 or more hours out of the day, this is almost double the amount of sleep that a person without the condition needs and demonstrates why people living with ME/CFS have difficulty in maintaining contact and strong relationships with friends and family. Social Isolation has been identified by the Australian Bureau of Statistics [ABS], (2009) as being an important aspect of mental health and has been included in mental health reports and policy in Australia in recent years (ABS, 2009). There is a shift occurring that shows that the classification of social isolation is moving away from the idea that the quantity of social interactions are important and towards the idea that the quality of these social interactions are what causes the feeling of being socially

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isolated (Victor, Scambler, Bond, & Bowling, 2000). Fine and Spencer (2009) explain that objectively isolation can be measured as the number of interactions with others a person has but it is also crucial to measure isolation objectively in the way people feel and their perceived levels of loneliness. A common theme within the literature is that there is generally a poor mental health state of people living with ME/CFS and this is due to the lack of daily activities and the restriction on interaction with others a person with the condition can participate in (Pinikahana et al., 2002). As ME/CFS progresses and with time people can become more socially isolated leading to further mental health problems such as depression and anxiety which could possibly lead to suicide (Soderlund et al., 2000; Fuller-Thomson and Nimigon, 2008). In a cohort study involving people with CFS and a five year follow up Anderson et al., (2004) found that a majority of those studied with ME/CFS indicated social impairment as being a major contributor to their overall disability. While it is shown that the social interactions of those living with ME/CFS are reduced after the onset of the condition, there is a strong theme within the literature that the social support and interaction with others are crucial aspects necessary in managing the condition effectively with family support being a major inhibitor to the condition progressing (Pinikahana et al., 2002; Cordingley, Wearden, Appleby, & Fisher, 2001). As ME/CFS is a relatively unknown condition outside health literature it is thus not well understood by the general population, it is shown in the literature that once people are diagnosed with ME/CFS they often find that friends and family do not know how to deal with the condition and relationships drift apart as they begin to feel as if they cannot be of help anymore (Pinikahana et al., 2002). Indicators and Impacts of Social Isolation The New Zealand Social Report (2009) identifies 5 key indicators that can be used to identify social connectedness levels within a population, these are; 

telephone and internet access at home



how often they are engaged in regular contact with family and friends



levels of trust people have in others



the proportion of the population who report experiencing loneliness



And contact between young people and their parents.

These indicators are reflective of the objective definition of social isolation as identified by Cattan, White, Bond, and Learmouth (2005). Cattan et al., (2005) indicated that social isolation can be 7|Page

objectively defined through the analysis of the number of social interactions a person has and the term loneliness can be measured subjectively as a ‘feeling’. The literature reveals that studies that have been conducted with the aim of measuring social isolation in a population measure numbers of social contacts and the subjective feelings of loneliness however they do not measure the risk factors or indicators such as those identified by the New Zealand Social Report (2009). There are also other risk factors that can influence the development of social isolation that people may have as well as their ME/CFS (LaBonte, 2004). These are identified as including; gender, race, age, socioeconomic status, education level, participation within the community and family activities, living arrangements, marital status and motivation to set and achieve goals (Mayers, Khoo, Svartberg, 2002; LaBonte, 2004; Hawthorne, 2006; Fuller-Thompson & Nimigon, 2008). Social isolation has a direct link with mental health as identified earlier in this review, people with mental health problems often feel socially isolated and also people who are socially isolated are at risk of developing a mental health issue (Australian Bureau of Statistics [ABS], 2009). The impacts of social isolation in people living with ME/CFS may be dependent on age and other individual characteristics, youth living with ME/CFS may not build essential friendship and social networks like their peers causing problems later in life however older people may feel the effects of loosing long time friends and relationships due to their condition (Soderlund, Skoge & Malterud, 2000). People with ME/CFS may also feel that the way that their social lives are impacted that their identity may also be lost as they are not participating in the social activities that they are identified by, including work as many people feel they are identified by their profession (Asbring, 2001). The literature reveals that when people begin to notice to effects that their ME/CFS is having on their social and mental health they may try to push themselves to participate in social activities such as going out with friends or working as to preserve their mental health, however in doing so it has been shown that they are worsening their current ME/CFS condition and will be stuck in a negative cycle if they continue in this course (Ware, 1999). Social isolation has also been identified within the literature as causing people to feel stigmatized and restricted, there is little financial and government support available for people with ME/CFS and this may lead to people having a loss in hope and a ‘no one cares attitude’ (Pinikahana et al., 2002). This stigmatization as well as the social isolation can be identified as being risk factors of depression which has a high prevalence among the population of those living with ME/CFS (FullerThompson & Nimigon, 2008). Having depression as a co-morbidity with ME/CFS has been identified by 8|Page

Fuller-Thompson and Nimigon (2008) to worsen the effects of the ME/CFS. As depression progresses it also can lead to suicide attempts from a deteriorating mental health state, it has been observed that depression is also worse in those experiencing pain (Fuller-Thompson & Nimigon, 2008).

2. Results 2.1 Demographics and disability status Overall there were 163 responses to the survey, as there were 369 email invitations sent out there was a response rate of 44.7%. From the responses there were 76.69% Female and 23.31% male, table 1 shows the age distribution by gender, the most responses were from the 41-54 year old age group and the youth being the under 18 until the 25 year olds consisted of the least responses. The majority of the respondents were either married or single and also either lived alone or with a partner and/or children. While 73% of respondents of the survey are living in an inner or outer metropolitan region there are a remaining 27% that are living in areas such as regional or rural towns.

On an index tool that measures disability levels in patients with CFS called the Energy Index Point Score (Lerner, 1998). This score involves 0 being bedridden and unable to move and 10 being having the activity of a person with no disability, the most number of respondents put themselves at a 4 (Fig 2). When looking at the level of disability compared to how long people have been ill from ME/CFS (Fig 3) it shows that the people who identified as being sick for less than a year put themselves at the lower end of the disability scale, however when it came to those who had been ill for more than ten years there was a majority

Gender by age

that indicated they were on the middle of the range and

extreme of the disability scale.

N=

a few people at either

70 60 50 40 30 20 10 0

Under 18

18-25

26-40

41-54

55-65

65+

Female

5

7

36

42

23

12

Male

6

2

6

16

6

2 Fig 1

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N=

Current Level of Disability 56

60 50 40 30 20 10 0

3

3

0

1

10 2

18

18

17

3

4

5

13

11

6

7

8

5

1

9

10

Level of disability

Fig 2

Current Disability Level by length of Illness 40 30

N=