An Alternative Way to Help People With ME/CFS
Nicole Roesner1*, Nicole Porter1, Patrick Holiday1, Gina Delucca1, Ashley Robinson1, Nicolette Walano1, Ian Natanek1, Catherine Clautier1, Leonard A.Jason1
1DePaul University
Center for Community Research
990 W. Fullerton, Chicago, IL 60614
Phone (773)-325-1897 Fax (773)325-4923
Email- nroesner@depaul.edu
Abstract
In 1996, a Buddy program began at DePaul University. Participants with ME/CFS were provided a Buddy, who was a volunteer DePaul University student. Over the years, we have found that both participants and Buddies have been able to gain from their participation. This report provides information about this Buddy program as well as qualitative data from both participants and the Buddies.
An Alternative Way to Help People With ME/CFS
The health care system often has often not been able to respond appropriately to the needs of patients with ME/CFS. Anderson and Ferrans (1) found that 77% of individuals with CFS reported negative experiences with health care providers. Green, Romei, and Natelson (2) found that 95% of individuals seeking medical treatment for CFS reported feelings of estrangement. Twemlow, Bradshaw, Coyne, and Lerma (3) found that 66% of individuals with CFS believed that they were made worse by their doctors’ care.
Sometimes people with ME/CFS are too fatigued to perform simple daily activities like housecleaning or carrying groceries. Variations in energy levels are often unpredictable, which makes it difficult to plan when one will be able to engage in physical activity or social interaction. In addition, increased fatigue and symptom severity are possible consequences of expending energy beyond the low energy levels. For example, on a day where peoples’ energy level is higher than usual, the individuals may take advantage of it by expending extra energy, whether physical or mental, to compensate for any activities or work they were unable to do in periods of extremely low energy. This brief period of high expended energy levels is often followed by a “crash” or extended period of severe fatigue. In an attempt to provide services that are valued by patients, a group of investigators at DePaul University have for the past fifteen years implemented a buddy program for people with ME/CFS. When this program was evaluated in the past, those who received the support and help with household duties experienced a decrease in fatigue, while the control group did not experience these improvements (4).
The DePaul Buddy program provides friendship and useful assistance for people with ME/CFS. The DePaul University student volunteers also offer emotional support, empathetic listening, and reliability to the participants. Additionally, the volunteer provide other support as well, such as grocery shopping, organizing files, running errands, and writing letters. In this program, the student visits their buddy once to twice a week for 1 to 2 hours, for duration of four months. The students are required to complete a training program in which they learn about ME/CFS and different issues that surround people that suffer from this illness. The sample population will consist of 30 participants. The ages of our sample now range from 15 to 76, and the mean age is 57. The purpose of this paper is to inform readers of some of the possible benefits of a social support program for the participants and for the volunteers. Below we provide some of the qualitative comments from those who have participated in it. One participant wrote:
The Buddy Program is better than I could have imagined. My buddy makes me feel alive, and she gives me strength to do activities that I would not normally have the energy to do. It has created a real turning point for me. She is a very intelligent person. We have really interesting conversations. I can talk about very intellectual subject matter and use language that other people would require simpler language. We both are able to learn from each other. She is just fun to talk to! It really builds a different social dimension. It is something that I look forward to. I get a lot of good feeling out of this program.
Page 14
The Buddy Program aims to build friendships as well as provide support. Many times a student can give their participant a new way of looking at different situations which can alleviate some stress and anxiety. This then may give the person with ME/CFS more energy to toward daily life situations. All the students are required to read about ME/CFS and learn about this illness. This may allow the participants to be more receptive of the students because they know that the students have some knowledge of this illness. One participant wrote:
The Buddy Program was quite interesting. Having ME/CFS, my social is not the best. The buddy that I had was quite helpful. As a matter of fact I have pain in my hand, and she would help me type up different documents that I needed. The time that I spent with my buddy was a very happy time. It was someone that I could look forward to seeing because most of the time I only go to the doctors. I was able to come out of my shell and share part of myself with someone that understood. Many people do not believe that people with ME/CFS are ill because they may not look like they are. It was helpful to have someone that did believe I had an illness. With the buddy program, I was not focusing on what I could not do, but focusing on the things I could.
Page 15
Many people with ME/CFS are not able to leave their homes because of their symptoms. The Buddy Program allows the participants to interact with the world through their buddy. Also, the buddy program allows students to learn from a person with an illness. One participant commented on the buddy program by writing:
The main thing that I gained from my experience in the buddy program is having someone who was willing to listen to my experience, and did not have an agenda for having me do something. My buddy was committed to learning about what it feels like to live with ME/CFS. I had someone that cared about my well being, and how I was doing from week to week. Some days, I had particularly high symptoms, when I would get a phone call or an email from my buddy, then that would give me strength, and improve my out look. It helped to talk to my buddy and see what was going on in another person’s life. I feel like I had a stake in how things turned out for them in their life. Interacting with someone that has more of an active life than I have, thinking about what they are going through day to day helps.
Another aspect of the buddy program that is valuable for someone that is house bound as much as I am is getting news from the outside world. For someone living with ME/CFS, over the year I have found that if I have had been stuck at home for most of the time, for several months or more, I feel a disconnect with the world. But, if I am in communication with people that are more active, I feel more current with what is going on in the world. My experience with the Buddy Program has been significant because my buddy has a sense of empathy and a willingness to learn. A big part that is valuable from the Buddy Program is a sense of being able to contribute to awareness of ME/CFS. If that person encounters a person with a disability, even if it is not the one I have, they may have a better picture of what it is like. In a way, I am providing my own individual perspective that society can adapt better with people who have conditions like mine. For example, focusing on what life is like with an illness that is less well understood, can reveal a hidden world, and it makes me feel more integrated with the world at large.
Not only does this program benefit participants, but it also educates the Buddy about ME/CFS and spreads awareness of this illness. The students have stated that they have developed many skills by participating in this program. One student wrote:
Being involved in the Buddy Program has been very beneficial for me. Before I got involved in the Buddy Program, I did not know anything about ME/CFS. Now, I feel I know almost everything about the illness. I have ask my buddy things about ME/CFS that I may have heard and do not know about. My buddy tells me a great deal of things about the history of the disorder and just how it impacts her life. Also, while I have been in this program I have done a lot of research on ME/CFS. I have looked at the history of ME/CFS the causes, treatments, and at the impact ME/CFS has on different genders. Along with gaining more knowledge about ME/CFS, I have also gained some friends, and I am able to get involved in more research projects that interest me. Signing up for this program was one of the best decisions I have made here at DePaul.
Page 17
Many of the students that participant in this program are interested in work in the helping field. The Buddy Program allows the students to build their skills that they need to be an effective helper. For example, one student wrote:
My interest in becoming a member of the Buddy Program came from my high level of motivation to help others, especially on a one on one basis. My experience so far has been very rewarding in the sense that it has not only been a great learning opportunity, but it has also helped me gain even more confidence when working directly with others. In addition, I feel as though I have improved my abilities as an active listener. I have learned an increasable amount about ME/CFS and the struggles that people with this illness face.
This program also can spark some interests in the students and help them establish their career goals. Some students build a strong connection to their participant and to the different hardships that they face. This can lead the students to take even more of an active part in spreading awareness of this illness. When asked about the impacts the buddy program had on her, the student wrote:
“what I enjoyed most about the buddy program is the opportunity to work one on one with someone consistently, because it really allowed me to understand and imagine the physical debilitation experience by my buddy. After working with my buddy for a good amount of time, I have been inspired to continue research work in the area of ME/CFS, and health psychology. This is an illness that has been overlooked, and not given the attention and significance that it requires. Learning about this illness from books and articles is very different than spending time with a person that has it. I feel that I have grown as a person because of this program.”
Page 18
Not only do the students gain friendships in this program they are also given the opportunity to take part in research on ME/CFS. Learning from their buddies about ME/CFS, researching it, and taking part in research gives the students a growth of knowledge that they then can use in their life. Students have also reported learning a lot about themselves through this program. One student wrote:
There is no better way of really seeing the need for specificity as opposed to homogenous diagnostic classification - in the way we approach what ME/CFS is, than through the Buddy Program.
Beyond having the serious potential for credible, poignant qualitative data, the Buddy Program has further reaffirmed within me the necessity for the involvement of research participants in the structure and shaping of the research effort.
That's really what I think the best thing the Buddy Program offers: a loose research relationship structured around informal friendship; just talking with your buddy, in turn learning so much about yourself, himself, and ME/CFS, both as a variable in someone's life and as a research focus.
Page 19
The Buddy Program gives strength to the participant and the Buddy. For those few hours a week, two people spend time learning about each other, making connections, and building friendships. One student replied when asked how she feels when she meets with her buddy, and she wrote:
I began the buddy program nearly a month ago. Since then I have learned a lot about the people affected by ME/CFS. My buddy has shown me that a person does not have to let their life get consumed by the disease even though having it may seriously affect the person’s life. My buddy may not be able to do very much, but she still lives a very full and enjoyable life. It is extremely inspiring to work with someone like her. She is strong and accepting in the face of this life altering disease. The best part about working with her is learning from her to accept the things about your life that are out of your control. She was an extremely productive, high achieving person before the disease and had to learn to be much less active in order to deal with ME/CFS. It is wonderful to go see her every week because she gets excited not only to have me around but to see life through my eyes; I love that I can give her a glimpse into my life that is not hindered by an illness. I feel like it gives her a bit of hope for her future as well as the future of the rest of us and it allows her to get her mind off of the disease for even a couple of hours a week. I have really enjoyed connecting with my buddy and learning about her life with ME/CFS as well as allowing her to live a little bit through mine.
Page 20
The buddy program builds relationships between different people. The participants receive social support and physical help, and the students are learning about an illness by gaining skills that can benefit them in their future occupation. Also, having a volunteer can help lower stress and anxiety levels. Additionally, some participants are not able to leave their homes for an extensive amount of time. Having a volunteer visit regularly can help participants feel like they are a part of the outside world. This program also helps spread awareness about this illness and the people that it affects. The volunteers receive valuable experiences from the Buddy Program as well. Some of the volunteers report that the program helped them establish their career goals. Other volunteers have stated that they learned more about themselves, and developed valuable skills from this program.
After the student visits their buddy for four months, they are not required to meet after, but in many cases the student chooses to keep in contact with their participant because they build such a strong friendship. This program started in 1996, and some participants that received a student buddy then still keep in touch. The buddy program has impacted many people’s lives in a positive way, and will continue to build life long friendships. We are currently evaluating this program and hope in the future to provide more quantitative data to support the qualitative observations in this report. Outcome variables include those assessing fatigue, disability and social support. Qualitative data are also being collected and will be analyzed along with the quantitative data.
References
1. Anderson, J. S. & Ferrans, C. E. The quality of life of persons with chronic fatigue syndrome. Journal of Nervous and Mental Disease. 1997;185:359-367.
2. Green, J., Romei, J., & Natelson, B.J. Stigma and chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome. 1999;5:63-75.
3. Twemlow, S.W. Bradshaw, S.L., Jr., Coyne, L., & Lerma, B.H. Patterns of utilization of medical care and perceptions of the relationship between doctor and patient with chronic illness including chronic fatigue syndrome. Psychological Reports. 1997; 80:643-659.
4. Shlaes, J.L., & Jason, L.A. A buddy/mentor program for people with Chronic Fatigue Syndrome. The CFIDS Chronicle. 1996;9:21-25.
Page 21
Back to Bulletin of the IACFS/ME, Vol. 16, Issue 4
An Alternative Way to Help People With ME/CFS
Nicole Roesner1*, Nicole Porter1, Patrick Holiday1, Gina Delucca1, Ashley Robinson1, Nicolette Walano1, Ian Natanek1, Catherine Clautier1, Leonard A.Jason1
1DePaul University
Center for Community Research
990 W. Fullerton, Chicago, IL 60614
Phone (773)-325-1897 Fax (773)325-4923
Email- nroesner@depaul.edu
Abstract
In 1996, a Buddy program began at DePaul University. Participants with ME/CFS were provided a Buddy, who was a volunteer DePaul University student. Over the years, we have found that both participants and Buddies have been able to gain from their participation. This report provides information about this Buddy program as well as qualitative data from both participants and the Buddies.
An Alternative Way to Help People With ME/CFS
The health care system often has often not been able to respond appropriately to the needs of patients with ME/CFS. Anderson and Ferrans (1) found that 77% of individuals with CFS reported negative experiences with health care providers. Green, Romei, and Natelson (2) found that 95% of individuals seeking medical treatment for CFS reported feelings of estrangement. Twemlow, Bradshaw, Coyne, and Lerma (3) found that 66% of individuals with CFS believed that they were made worse by their doctors’ care.
Sometimes people with ME/CFS are too fatigued to perform simple daily activities like housecleaning or carrying groceries. Variations in energy levels are often unpredictable, which makes it difficult to plan when one will be able to engage in physical activity or social interaction. In addition, increased fatigue and symptom severity are possible consequences of expending energy beyond the low energy levels. For example, on a day where peoples’ energy level is higher than usual, the individuals may take advantage of it by expending extra energy, whether physical or mental, to compensate for any activities or work they were unable to do in periods of extremely low energy. This brief period of high expended energy levels is often followed by a “crash” or extended period of severe fatigue. In an attempt to provide services that are valued by patients, a group of investigators at DePaul University have for the past fifteen years implemented a buddy program for people with ME/CFS. When this program was evaluated in the past, those who received the support and help with household duties experienced a decrease in fatigue, while the control group did not experience these improvements (4).
The DePaul Buddy program provides friendship and useful assistance for people with ME/CFS. The DePaul University student volunteers also offer emotional support, empathetic listening, and reliability to the participants. Additionally, the volunteer provide other support as well, such as grocery shopping, organizing files, running errands, and writing letters. In this program, the student visits their buddy once to twice a week for 1 to 2 hours, for duration of four months. The students are required to complete a training program in which they learn about ME/CFS and different issues that surround people that suffer from this illness. The sample population will consist of 30 participants. The ages of our sample now range from 15 to 76, and the mean age is 57. The purpose of this paper is to inform readers of some of the possible benefits of a social support program for the participants and for the volunteers. Below we provide some of the qualitative comments from those who have participated in it. One participant wrote:
The Buddy Program is better than I could have imagined. My buddy makes me feel alive, and she gives me strength to do activities that I would not normally have the energy to do. It has created a real turning point for me. She is a very intelligent person. We have really interesting conversations. I can talk about very intellectual subject matter and use language that other people would require simpler language. We both are able to learn from each other. She is just fun to talk to! It really builds a different social dimension. It is something that I look forward to. I get a lot of good feeling out of this program.
Page 14
The Buddy Program aims to build friendships as well as provide support. Many times a student can give their participant a new way of looking at different situations which can alleviate some stress and anxiety. This then may give the person with ME/CFS more energy to toward daily life situations. All the students are required to read about ME/CFS and learn about this illness. This may allow the participants to be more receptive of the students because they know that the students have some knowledge of this illness. One participant wrote:
The Buddy Program was quite interesting. Having ME/CFS, my social is not the best. The buddy that I had was quite helpful. As a matter of fact I have pain in my hand, and she would help me type up different documents that I needed. The time that I spent with my buddy was a very happy time. It was someone that I could look forward to seeing because most of the time I only go to the doctors. I was able to come out of my shell and share part of myself with someone that understood. Many people do not believe that people with ME/CFS are ill because they may not look like they are. It was helpful to have someone that did believe I had an illness. With the buddy program, I was not focusing on what I could not do, but focusing on the things I could.
Page 15
Many people with ME/CFS are not able to leave their homes because of their symptoms. The Buddy Program allows the participants to interact with the world through their buddy. Also, the buddy program allows students to learn from a person with an illness. One participant commented on the buddy program by writing:
The main thing that I gained from my experience in the buddy program is having someone who was willing to listen to my experience, and did not have an agenda for having me do something. My buddy was committed to learning about what it feels like to live with ME/CFS. I had someone that cared about my well being, and how I was doing from week to week. Some days, I had particularly high symptoms, when I would get a phone call or an email from my buddy, then that would give me strength, and improve my out look. It helped to talk to my buddy and see what was going on in another person’s life. I feel like I had a stake in how things turned out for them in their life. Interacting with someone that has more of an active life than I have, thinking about what they are going through day to day helps.
Another aspect of the buddy program that is valuable for someone that is house bound as much as I am is getting news from the outside world. For someone living with ME/CFS, over the year I have found that if I have had been stuck at home for most of the time, for several months or more, I feel a disconnect with the world. But, if I am in communication with people that are more active, I feel more current with what is going on in the world. My experience with the Buddy Program has been significant because my buddy has a sense of empathy and a willingness to learn. A big part that is valuable from the Buddy Program is a sense of being able to contribute to awareness of ME/CFS. If that person encounters a person with a disability, even if it is not the one I have, they may have a better picture of what it is like. In a way, I am providing my own individual perspective that society can adapt better with people who have conditions like mine. For example, focusing on what life is like with an illness that is less well understood, can reveal a hidden world, and it makes me feel more integrated with the world at large.
Not only does this program benefit participants, but it also educates the Buddy about ME/CFS and spreads awareness of this illness. The students have stated that they have developed many skills by participating in this program. One student wrote:
Being involved in the Buddy Program has been very beneficial for me. Before I got involved in the Buddy Program, I did not know anything about ME/CFS. Now, I feel I know almost everything about the illness. I have ask my buddy things about ME/CFS that I may have heard and do not know about. My buddy tells me a great deal of things about the history of the disorder and just how it impacts her life. Also, while I have been in this program I have done a lot of research on ME/CFS. I have looked at the history of ME/CFS the causes, treatments, and at the impact ME/CFS has on different genders. Along with gaining more knowledge about ME/CFS, I have also gained some friends, and I am able to get involved in more research projects that interest me. Signing up for this program was one of the best decisions I have made here at DePaul.
Page 17
Many of the students that participant in this program are interested in work in the helping field. The Buddy Program allows the students to build their skills that they need to be an effective helper. For example, one student wrote:
My interest in becoming a member of the Buddy Program came from my high level of motivation to help others, especially on a one on one basis. My experience so far has been very rewarding in the sense that it has not only been a great learning opportunity, but it has also helped me gain even more confidence when working directly with others. In addition, I feel as though I have improved my abilities as an active listener. I have learned an increasable amount about ME/CFS and the struggles that people with this illness face.
This program also can spark some interests in the students and help them establish their career goals. Some students build a strong connection to their participant and to the different hardships that they face. This can lead the students to take even more of an active part in spreading awareness of this illness. When asked about the impacts the buddy program had on her, the student wrote:
“what I enjoyed most about the buddy program is the opportunity to work one on one with someone consistently, because it really allowed me to understand and imagine the physical debilitation experience by my buddy. After working with my buddy for a good amount of time, I have been inspired to continue research work in the area of ME/CFS, and health psychology. This is an illness that has been overlooked, and not given the attention and significance that it requires. Learning about this illness from books and articles is very different than spending time with a person that has it. I feel that I have grown as a person because of this program.”
Page 18
Not only do the students gain friendships in this program they are also given the opportunity to take part in research on ME/CFS. Learning from their buddies about ME/CFS, researching it, and taking part in research gives the students a growth of knowledge that they then can use in their life. Students have also reported learning a lot about themselves through this program. One student wrote:
There is no better way of really seeing the need for specificity as opposed to homogenous diagnostic classification - in the way we approach what ME/CFS is, than through the Buddy Program.
Beyond having the serious potential for credible, poignant qualitative data, the Buddy Program has further reaffirmed within me the necessity for the involvement of research participants in the structure and shaping of the research effort.
That's really what I think the best thing the Buddy Program offers: a loose research relationship structured around informal friendship; just talking with your buddy, in turn learning so much about yourself, himself, and ME/CFS, both as a variable in someone's life and as a research focus.
Page 19
The Buddy Program gives strength to the participant and the Buddy. For those few hours a week, two people spend time learning about each other, making connections, and building friendships. One student replied when asked how she feels when she meets with her buddy, and she wrote:
I began the buddy program nearly a month ago. Since then I have learned a lot about the people affected by ME/CFS. My buddy has shown me that a person does not have to let their life get consumed by the disease even though having it may seriously affect the person’s life. My buddy may not be able to do very much, but she still lives a very full and enjoyable life. It is extremely inspiring to work with someone like her. She is strong and accepting in the face of this life altering disease. The best part about working with her is learning from her to accept the things about your life that are out of your control. She was an extremely productive, high achieving person before the disease and had to learn to be much less active in order to deal with ME/CFS. It is wonderful to go see her every week because she gets excited not only to have me around but to see life through my eyes; I love that I can give her a glimpse into my life that is not hindered by an illness. I feel like it gives her a bit of hope for her future as well as the future of the rest of us and it allows her to get her mind off of the disease for even a couple of hours a week. I have really enjoyed connecting with my buddy and learning about her life with ME/CFS as well as allowing her to live a little bit through mine.
Page 20
The buddy program builds relationships between different people. The participants receive social support and physical help, and the students are learning about an illness by gaining skills that can benefit them in their future occupation. Also, having a volunteer can help lower stress and anxiety levels. Additionally, some participants are not able to leave their homes for an extensive amount of time. Having a volunteer visit regularly can help participants feel like they are a part of the outside world. This program also helps spread awareness about this illness and the people that it affects. The volunteers receive valuable experiences from the Buddy Program as well. Some of the volunteers report that the program helped them establish their career goals. Other volunteers have stated that they learned more about themselves, and developed valuable skills from this program.
After the student visits their buddy for four months, they are not required to meet after, but in many cases the student chooses to keep in contact with their participant because they build such a strong friendship. This program started in 1996, and some participants that received a student buddy then still keep in touch. The buddy program has impacted many people’s lives in a positive way, and will continue to build life long friendships. We are currently evaluating this program and hope in the future to provide more quantitative data to support the qualitative observations in this report. Outcome variables include those assessing fatigue, disability and social support. Qualitative data are also being collected and will be analyzed along with the quantitative data.
References
1. Anderson, J. S. & Ferrans, C. E. The quality of life of persons with chronic fatigue syndrome. Journal of Nervous and Mental Disease. 1997;185:359-367.
2. Green, J., Romei, J., & Natelson, B.J. Stigma and chronic fatigue syndrome. Journal of Chronic Fatigue Syndrome. 1999;5:63-75.
3. Twemlow, S.W. Bradshaw, S.L., Jr., Coyne, L., & Lerma, B.H. Patterns of utilization of medical care and perceptions of the relationship between doctor and patient with chronic illness including chronic fatigue syndrome. Psychological Reports. 1997; 80:643-659.
4. Shlaes, J.L., & Jason, L.A. A buddy/mentor program for people with Chronic Fatigue Syndrome. The CFIDS Chronicle. 1996;9:21-25.
Page 21
Back to Bulletin of the IACFS/ME, Vol. 16, Issue 4