"ME/CFS & Social Isolation - Survey Report" (2010). Paid for by ME/CFS Australia (Vic)

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The full text is at:
http://emerge.org.au/dev/wp-content/uploads/2014/11/ME-CFS-social-isolation-report-2010.pdf

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.

Extract:

Explanatory Statement

This survey has been compiled, endorsed and funded by ME/ Chronic Fatigue Syndrome Society Australia (Victoria)*; it has been designed with the aim to gain a greater insight into ME/CFS and the way that people living with the condition are affected in regards to their feeling of well-being. By participating in this study you can provide a firsthand insight into ME/CFS and how it effects social isolation. We are asking that you only complete this survey if you have ME/CFS and that your answers are reflective of your current situation.

*They're now called Emerge Australia

 

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This is a report that has lots of good stuff in it I think. I'll post some over the day.

 

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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).

 

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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).

 

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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).

 

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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).

 

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Note that only 12% working full time.

It says later that only 2 of the 12 students were full-time. So only 14% in full-time employment or study.

 

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Current weekly income for people with ME/CFS in Australian dollars in 2010 survey.

AUS $100 = US $82 = GBP 55 = EUR 70.

This was an internet survey of members of an ME/CFS society. People from lower socioeconomic groups may be less likely to take part, perhaps.

 

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Hours working/volunteering of those that do work

 

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Impact of ME/CFS on those who do work, study or volunteer
(many can't do any of them as can be seen from the fact the total sample was 163 although numbers who answered questions tended to be in 150s)

 

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Extract: "Almost 70% of those who are currently working or studying indicate that their ability to do so has been impacted to a great extent by having ME/CFS (Figure 8).

One respondent felt that ME/CFS had no impact on working or volunteering.

When asked to explain their response the respondents identified a number of themes in relation to ME/CFS and working or studying.

Those who were working indicated that they had to reduce or restrict the amount of duties they had at work or reduce the number of hours they worked in order to keep working.

In order to reduce hours or duties a number of respondents indicated that they had to change career paths or when looking for different work there were limited options that they felt comfortable doing “I have had to look for jobs based purely on logistics - they have had to be part-time, sedentary, and close to home to reduce travelling time”.

Early retirement among workers was also common; many indicated that it was their only option “I took ill-health retirement due to ME/CFS at the age of 48, after more than seven years of struggling to work part-time with the illness”.

The effects of ME/CFS such as brain fog and concentration problems were common issues that had an impact on both the people who worked and those that studied “I just can't find the right way of explaining things because of brain fog and this results in having to do more work”.

Students also had to reduce hours of study, ‘drop’ subjects and stop participating in other activities in order to remain studying “Have had to drop subjects at school.

Little contact with friends, no outside activities with friends”.

Another dominant theme among the students is that they feel that they cannot achieve the marks they should if they were not living with ME/CFS “Know my VCE result won't be as good as what i was planning on getting” or they feel worried or unsure about what type of career they can have in the future '…worry about the future holds for a career'."

 

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Question:

Over the last 12 months, have you wanted to do any of the following activities, but had difficulty or been unable to do them because of your ME/CFS?

N=148 approximately (145-148 answered the preceding question)

 

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A common theme when the respondents indicated the things that they wished they do but no longer could was that many wished to do everyday activities like housework, cooking and gardening but these were no longer possible and there was a strong reliance on others for support in this area.

 

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One common theme was that people become afraid to commit to a social engagement as the condition is unpredictable due to post exertional malaise which is a symptom of ME/CFS (Friedberg, 2010).

It was found that it is common to feel it is better to not commit at all then to constantly have to cancel at the last minute one respondent said “I can't commit to a time to get together as I don't want to have to cancel”.

The symptoms also show to cause people to want to stay at home however this received mixed reactions, one respondent stated “I perfer to stay at home as i can control that environment (sic)” while another has put this into a positive direction and has not let staying at home cause social isolation “It has enabled me to develop a rich and full online life, and make very close friends across the globe”.

 

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A dominant theme was that people without the illness have trouble understanding what ME/CFS is and have expectations that people with it can live a normal life “they don't necessarily understand it, or appreciate how it effects all areas of my life, that it is not a choice but an illness.”

One respondent indicated that the people they socialise with misconstrue the way they act and get angry instead of being sympathetic “When I am having a bad patch, friends and family often misinterpret my absence as rudeness or neglect on my part”.

When able to socialise the respondents indicated that they felt they were not themselves and shame was a common feeling towards their current lifestyle “makes me 'embarrassed' about the state of my life. put on a front at social gatherings and tell people I'm fine because feel like a 'loser' otherwise.”

Many respondents indicated that they were frustrated with the illness; this was because of the limitations of ME/CFS and the lack of support and knowledge of ME/CFS “I feel abnormal. Like an alien or monster”.

However people who had been living with the condition longer were accepting and had been through an initial stage of frustration and anger however they now understand and are content “Initally sad, angry and depressed however I've accepted this is how I am now and its better than I was this time last year… I have a more positive outlook now.”

Taking a positive out of the illness and maintaining passion for something to give a purpose to life is one thing that has helped the respondents remain positive “I channelled my interest in Music to differnt ways of using it, using my couselling skills as well has led to a productive and fulfilled life as I mature (sic)”

 

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In an open ended question in regards to how the respondents feel about the number of social interactions the respondents have with friends and family many respondents indicated that talking to others takes up too much energy so it is not a priority; for example “Simple exhaustion and my voice muscles shut down, so when I do talk my voice will often fade away as I'm talking.”. Of the respondents who indicated that they had contact with family members regularly these were often the people that they lived with not others that they had to call or visit to talk to.

 

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Q. How many friends do you have who you see or speak to (in person or via telephone) every day or nearly every day? Eg; friends from work, neighbours and anyone else you think of as a friend.

Nearly half say zero.

 

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This graph is perhaps a little confusing. It contains responses to four separate questions:

Q. Have there been times in the past year when you have felt isolated and cut off from society?
o Yes, extremely isolated
o Yes, somewhat isolated
o Yes, a little isolated
o I have not felt isolated at all
o If yes, how long did you have the feeling of isolation?

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Have there been times in the past year when you've felt isolated and cut off from
society because of LACK OF MONEY?
o Yes, extremely isolated
o Yes, somewhat isolated
o Yes, a little isolated
o I have not felt isolated at all due to lack of money

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Have there been times in the past year when you've felt isolated and cut off from
society because of INABILITY TO WORK/ GO TO SCHOOL, UNI OR TAFE?
o Yes, extremely isolated
o Yes, somewhat isolated
o Yes, a little isolated
o I have not felt isolated at all due to INABILITY TO WORK/ GO TO SCHOOL, UNI OR TAFE

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Have there been times in the past year when you've felt isolated and cut off from society because of NOT BEING ABLE TO SOCIALISE?
o Yes, extremely isolated
o Yes, somewhat isolated
o Yes, a little isolated
o I have not felt isolated at all due to an INABILITY TO SOCIALISE

n=142 for each question

 

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People with ME/CFS who filled in a survey were asked for reasons why they felt socially isolated (n=142 approximately)

Exact question:

We would like to know the reasons why you've felt isolated and cut off from society.

Please check the following that you experience.

o Having ME/CFS
o Lack of work
o Lack of income
o Childcare responsibilities
o Other caring responsibilities
o Lack of transport
o Inaccessible public transport
o No friends
o No family
o Problems with physical access to places outside of the home
o Discrimination relating to disability
o None of these
o Other (please specify)