International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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Solutions to loneliness and isolation.

Discussion in 'Lifestyle Management' started by pebble, Apr 3, 2011.

  1. pebble

    pebble Senior Member

    I feel there are many practical, realistic and achievable solutions to our loneliness and isolation, we just havent thought of them yet.

    Our needs are so different, complex and multidimensional.

    I feel the solution is for us all to take a new perspective, question our assumptions, brainstorm to identify specific obstacles, specific strengths, prioritise then brainstorm to find new solutions and better alternatives.

    The film Us Now discusses how the internet is in its infancy and explores so many new possibilities.

    I found the film extremely inspirational and empowering.

    I was particularly interested in how the film encourages a generous culture of collaboration and cooperation and empowers us to be open to and find better options and possibilities.

    I am not in the least bit technical and am more interested in emotional awareness.

    A technical person would see aspects and possibilities I couldnt possibly imagine.

    I believe there cannot be one true perspective.

    I feel that so many different, personalities, interests, strengths, beliefs, experiences and perspectives could provide a much clearer understanding, overview and a more accurate picture of reality and new possibilities.

    I was hoping if we all watched the film Us Now we could all share our perspectives and ideas and brainstorm to create new possibilities and better alternatives to improve the quality of our lives.

    I have had CFS for over 10 years. I have been housebound for a few months and find the loneliness crushing.

    I was curious why so many of us are so lonely and yet so few attended local support group meetings. I assumed that there were so few attending because there were too few meetings which meant that the meetings were too far for many to travel to.

    My assumption was wrong. Although many do have difficulty with the logistics of physically getting to a meeting I was so shocked at how many more found the group situation far too exhausting and stressful for so many different reasons.

    I feel it is vital to identify, understand and make explicit specifically what those difficulties are.

    If we brainstorm we can create new and better alternatives.

    Our energy and concentration are so limited, we need to be far more efficient how we spend them.

    Because something doesnt exist doesnt mean it cant be created.

    I was hoping we could create, encourage, support and coordinate a new concept of local CFS/ME support communities.

    The internet and this forum in particular is such a lifeline and have so many advantages such as convenience and anonymity without geographical or logistical restrictions.

    I love the choices freedom and the opportunity to connect and share experiences and information with others who understand all over the world.

    We are also human and are hardwired to need face to face eye contact. Some things need to be said not written. I feel online support is vital but we also need quality local support and understanding.

    So many of us are just existing. I feel the key is the quality of the support and understanding we need to improve our quality of life.

    I feel its vital to use technology in an emotionally enlightened way.

    I feel our strengths include our differences, intellect, emotional awareness, knowledge and experience of our condition and our capacity to cooperate and collaborate to improve our quality of life.

    I was hoping if people posted their opinion of the film before starting to brainstorm, more people might chose to watch the film and we may find more possibilities.

    I did my best to keep this as brief as possible but I feel that watching the film first is really important.
  2. Wonko

    Wonko Senior Member

    The other side.
    I got a cat, went mad, and now fill in both sides of conversations with said cat.

    Result - no more loneliness (and isolation isnt permitted as she follows me everywhere).

    Of course the insanity helps.
  3. Nielk


    I have two sisters who live in different countries.
    They are a tremendous means of emotional support for me.
    I communicate with them via skype live.
    Even when I'm bedbound. I can take my laptop to my bed and call them via skype.
    It's like they are right there in the room with me. We can see each other and communicate and see their face and expressions.
    It's a great tool to use for people who are lonely.
  4. Bob


    England (south coast)
    Hi pebble,

    I like your post.
    I think you talk about something that concerns a lot of us.

    I've got a couple of thoughts at the moment...

    If anyone is thinking about setting up a very local support group or a small social group, then a Yahoo Group is ideal for setting up something really simple for a few people to communicate with each other.
    I find that Yahoo Groups are great for keeping in touch with a smaller number of people than a forum would usually host, and handy for arranging local meetings etc.
    And there is nothing easier than starting up a 'Yahoo Group'.
    It takes a few moments to set one up, and a few moments for people to join.
    And they are very easy to use.

    If anyone needs any help setting up a Yahoo Group, then please feel free to ask, and I will happily talk through the process.
    Yahoo groups can be totally private, for members only.
    They have facilities for sharing photos and creating photo albums, and they now also have a private chat room associated with each group.

    Also, I was thinking about Second Life.
    I used to use it a few years ago, and found it loads of fun at the time. (I used it too much and then I got bored with it.)
    For anyone not familiar with Second Life (SL), it is a virtual 3D world, where you create yourself a personal avatar and then explore the virtual world, meeting and interacting with other people's avatars.
    It can be a bit daunting at first, but it's very easy to use and you don't need techie skills to use it.
    It can be anonymous if you want it to be.
    I think it can be more personal, entertaining and interactive than a forum or chat room, and is the closest thing online to real physical interaction, except maybe a skyppe video call.
    You interact with real people in the virtual world and you can share music, for example.
    You interact either by text chat, or by voice chat.
    I think it could help some people who are isolated.
    I found it very entertaining for a long time.
    If some people were interested, then it would be easy to arrange a gentle meeting place for people with ME.
    SL is not entirely private, but private conversations can easily be arranged, between two people, or between groups of people.
    Public conversations are the norm, but it's easy to go private, if preferred.
    There are plenty of quiet places to hang out, meet up, and to explore in SL.

    If anyone is interested in getting started with SL, or wants to pay a visit, then mention it on this thread, or PM me, and I can introduce you.

    Maybe a few of us could try it out together? It could be fun?
    If you're interested, then mention it on this thread, and then if we get a few of us, we can all meet up there.

    Well, these are just some initial thoughts...

  5. Carrigon

    Carrigon Senior Member

    PA, USA
    In some ways, living in an apartment building does help me with the loneliness. When I was doing my laundry this weekend, one of the neighbors came and sat and talked with me the whole time. And it did help. I find that I do get to talk to people when I'm doing things in the building.

    Tonight I'm feeling it, but I went to the store and I'm in so much pain that I absolutely could not be with anyone tonight. It's very, very hard to live alone when you are sick. And I've been ten times the sick this past month. I was out of everything and had no choice but to go out, because if I don't do it, there is no one else. Now I'll be paying in spades for going out for awhile.

    I have only a few people I can call on the phone when I'm lonely. But I kind of make the rounds on them. And I'm always posting to a very private blog where I have a good online friend. But it's very, very hard to have this disease and be isolated. It's one of the worst parts of it.
  6. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs

    I agree with Bob. I also have yahoo. If anyone wants to add me I am ninnyanddonald at yahoo - might have to email me first or I might think its a stranger sending me an im. Please add me too Bob. There is always someone to talk to there

    Alex told me about second life - there is not usually anyone in the CFS/|ME room when I go, but it looks great there once someone got used to it.

  7. Bob


    England (south coast)
    Hi glen...
    Great to hear from you...
    Thanks for inviting me to add your name.
    But I think you might be talking about Yahoo messenger? (i.e. instant chat?)
    In my earlier post I was talking about Yahoo Groups... I don't use Yahoo messenger at the moment.
    Yahoo Groups is a cross between an email list and a very simple forum. (It can be used as either.)

    Ah, so you found a CFS/ME meeting place?.. I've never found one there!
  8. Mark

    Mark Former CEO

    Sofa, UK
    I wonder if this is the core of what you're getting at?

    My observation would be: very many of us have problems like light and noise sensitivity, and another extremely stressful environmental factor for people is...lots of other people! Actually processing the behaviour of other people is very hard work for the brain; it's extremely complex stuff. Lots of people can be really overwhelming. My mate with MS has similar issues, he can only generally last a couple of hours or so in company, he gets tired and irritable trying to cope with social interaction, it can be really hard work for him.

    But the nature of those impairments is really diverse within our community. Some can listen fine but not speak well, others can speak fine but struggle with listening, others struggle to switch between the two 'modes', some of us have acquired specific dyslexia-like cognitive impairments...and those impairments are often not at all obvious to others and can be completely misinterpreted - as just not being interested in what other people have to say, for example...

    For me, I fortunately don't have a particularly bad problem with sensitivity to light and sound (though there are thresholds I can't handle like I used to); it doesn't physically hurt me, to be around a noisy crowd, but I just can't participate fully, or follow what people are saying properly, any more. So I tend to just sit back and tune in and out, when I'm with my mates; I drift in and out of listening to what they're saying and generally sit there quietly, just happy to be in a room with other people in it. Or, I just waffle on for as long as people will listen. Some days I have good days when I can participate reasonably normally. One to one I am generally OK - depending on the other one, of course... [​IMG]

    So when you say it's vital to make those difficulties explicit...maybe you're saying: somehow get clear about specifically what neurological problems we each have, and how that challenges our social interactions? And then, what problems do we have with online communications, and how can online communication make things better or worse in overcoming these problems?

    I think forum communication has both good and bad to it that way. You can chat with people, without having to reply instantly; you can take your time over a course of days to build up your reply, or you can go back and forth immediately, depending on your capability. On the other hand, forum threads can make some discussions rather confusing as well, and the technology itself can get in the way and be frustrating and hard work for us. have really got me thinking now, anyway...making the neurological/cognitive issues explicit, and thinking through ways to overcome and work round them, sounds like a key issue to think about...something to ponder there, whether I can imagine any software solutions that might help with that sort of thing.

    Oh: one more thought! Quite a few of us use voice recognition software...and that's a bit of an issue sometimes, whether people do or don't appreciate precisely what issues you are wrestling with, and how you're dealing with them, and what tech you are using to communicate at the time. I've seen outsiders react with puzzlement to some of this stuff: one day somebody appears like an illiterate who can't spell and writes semi-gibberish, the next day they're writing a brilliant piece of really intelligent prose: it looks a bit weird if you haven't twigged that the technology they are using, or the assistance of others, not to mention the fluctuation of symptoms, explains all that stuff.

    I tend to think we cope pretty well with these issues here, actually, and communicate in a quite impressive way, considering the challenges - they key for me is having that understanding of the sort of issues we wrestle with, and not making any assumptions about people based on the way they happen to express themselves. But it would be great if we could find technical solutions to help us express ourselves even better.

    Second Life sounds like probably one of the best answers I know of, potentially. I'm surprised there isn't a more active ME/CFS community on there, it ought to be ideal for us in many ways - maybe something for PR to think about there...
  9. Bob


    England (south coast)
    Maybe we could start a new Second Life discussion thread and invite people to meet on SL.
    I'm sure I could find us a suitably quiet meeting place in SL.

    I agree with you Mark, it does seem like it could be a really suitable alternative place to socialise for the ME community.

    I'll have a think about it, and maybe start a thread myself.
  10. glenp

    glenp "and this too shall pass"

    Vancouver Canada suburbs
    At second life the group is through the Murdoch University CFS/ME - Alex helps out there. I think they have a scheduled chat there on Tuesday eves.

    The yahoo I use is messenger- its great as when you have people on your friends list you can have a private chatroom with whoever is invited - its good as no pervs can get in- only those who are invited
  11. pebble

    pebble Senior Member

    Thank you so much for so many great comments and ideas.

    So many of us are extremely lonely and need local support and understanding as well as our online lifeline.

    Currently the four main options for support and understanding seem to be:

    1. Online support (others who also have CFS/ME)
    extremely convenient and so many advantages.
    This includes CFS/ME forums and websites etc.
    Although online support is excellent and vital, we are hardwired to need face to face eye contact as well.
    I feel we have a right to have both.

    2. Fixed group meetings. (others who also have CFS/ME)
    So many cannot attend because of the logistics of getting to the meetings.
    So many more chose not to attend because so many find fixed group meetings too stressful and exhausting for so many different reasons. (list too long to include here)

    3. Family and friends. (mostly wont have CFS/ME)
    Many are lucky enough to have family and friends for support and understanding.
    Many dont.
    Family and friends can love us but still not understand the condition and how it affects us.
    Loving relationships can be a huge comfort but can also have their own disadvantages.

    4. Telephone support lines. Many of us have difficulty talking on the phone. Some things are too personal to discuss.

    I feel there are many more options possible that would be far more efficient.

    I feel it is really important to see the film Us Now to appreciate how many more different options are possible.

    My idea of a new concept of local CFS/ME support community.

    I feel current options are too limited, fixed and fragmented. I feel we need to take a new and more fluid approach.
    (the film)

    So many CFS/ME charities are working so hard and making great progress campaigning, supporting medical research, changing policies, educating, raising public awareness, websites, sharing information, newsletters, support lines and much more.

    While this excellent work is vital, unfortunately many of us are drowning and cannot access the practical local help and support we need to exist let alone live.

    Having so many different charities operating independently nationally or internationally has so many advantages but can also be a disadvantage when trying to coordinate local practical support.

    I feel it would be useful if each county had one central contact point who only specialised in coordinating practical local support for that county regardless of which charity people belonged to.

    Each charity could then direct their members to one point for each county.

    Each county contact point could then feedback and share their experiences with a central contact point online where we could all learn from each others experiences.

    If our charities initially donated money to set up this ground level local support, once established we could look into other self sustaining options of funding.

    So many of us dont have enough energy for basic day to day existence, yet so many generously spend their extremely limited energy campaigning and supporting others by organising group meetings and newsletters, support lines etc.

    Many of these people work so hard to set up and run these services at the expense of their own health.

    I feel some roles can only be filled by someone who has actually experienced CFS but we simply dont have enough energy to do everything ourselves. I feel it would be beneficial if we took more of an advisory role and employed a non CFS/ME person to coordinate and run the service. We could decide what that service would include and use feedback to decide on direction and improvements.

    Many people find group situations too stressful and exhausting and would prefer one to one conversation. Organising and coordinating a county full of one to one meetings would be too exhausting for anyone with CFS/ME. But if we used Bobs brilliant Yahoo idea and employed someone competent with an appropriate personality type we could find so many new ways to meet and find the practical local support we need.

    We could use Bobs idea to choose to meet people according to their personality and interests and expectations.

    Group meeting are generally too widely spread and people tend to choose a particular group based on whats nearest. But we all have such different needs and expectations of support. Some prefer to campaign while others would prefer to have a light chat.

    So many of us are so lonely but find talking and listening too exhausting. I feel we need to focus on the quality of our support. Having a coffee with one likeminded person we have developed a rapport with on Bobs yahoo idea may be far less exhausting and far more rewarding than several group meetings.

    I know the government and medical profession should be providing us with the practical help support we need but the reality is they are not, and many of us are not able to cope or manage until we succeed in changing their unjust policies. I feel we need practical emergency solutions to help us urgently.

    There are so many more ideas such as

    A free or subsidised DIY person.

    A specialist benefits advisor that understood CFS that could visit you at home (employed or trained by us, someone you could trust)

    Debt advice especially trained to understand CFS/ME...... Etc.

    There are so many more options.

    Please watch the film Us Now.
  12. justy

    justy Donate Advocate Demonstrate

    Hi Pebble, i am very lucky in that i live with my husband and 2 of my 4 children, so i have regular contact with loving people. However i do still feel very isolated. I live in a very rural place, half a mile up a bridal path with no neighbours. The nearest town is 4 miles away (its tiny) and i cant get there by myself. I spen very many hours every day alone. On the weekends my family often go pout for trips etc and i cant go so again moire time alone. When i fist relpased 3 years ago i found the isolation excruciatinggly unbearableand felt like i was going to go mad. Being so out of society for so many hours a day made me feel very vulnerable when i was at my sickest, i was constatntly scared that something would happen to me and there would be nmo one to help for 9 or 10 hours. Now im a bit better and ive also got very used to it.
    I cant get to a support group - although i would as im a very sociable person. What i would really like is just to have one friend who i could meet in real time who has M.E. I have made good online friends, but someone local who i could hang out with every now and then would be great. Unfortunately living in suvh a rural place makes it almost impossible to find out if there are any others sufferers nearby to me -also this is extrememly unlikely!
  13. pebble

    pebble Senior Member

    Hi Justy,

    Sorry to hear you are so isolated also.

    I feel having one central point for each county would give you the choice of the kind of support you need as your needs change.

    Our condition varies so much I feel it is vital to have a more fluid solution.

    Bobs yahoo idea would give us contact with each other to choose and adapt the kind of support we need as our needs change without exhausting us with phone calls and would be safer than sharing phone numbers and addresses.

    We could choose to meet one to one or in interest groups or anything we like. We decide.

    We would all have local knowledge and contacts. Anyone housebound could chose someone more mobile or we could encourage local businesses, charities or locals to help out with lifts. We could design a logo to advertise businesses or charities or people that support us.

    We could also work with other charities such as changing faces. Many disabled people face discrimination in the work place. We could unite to support each other. For example there was a solicitor who despite her qualifications had great difficulty finding employment because she was a burns survivor. There are so many people able to work / drive but who are discriminated against and cant find employment. We could all help each other.

    There are so many possibilities.

    Have you seen the film?
  14. pebble

    pebble Senior Member

    I realise we are all very ill and our time, energy and concentration is extremely limited.

    Loneliness and isolation is such a huge problem for so many of us.

    I really believe the film Us Now is vital to finding new and better solutions to such a huge problem.

    Existing solutions are not working. We need new and different solutions.

    The film Us Now is so full of so many new ideas and new possibilities. It encourages a new perspective and mindset. I cant remember how long the film is but even if it is an hour, I feel it is definitely worth investing 1 hour to solve such a huge problem that affects so many of us.

    It is only my opinion and I would really appreciate it if someone else posted their opinion of the film before we started to brainstorm.

    If others posted their opinion of the film more people might be encouraged to make the time to watch it.

    I realise we are all drowning in priorities and we simply dont have the energy to meet all our priorities.

    This film really could be the key, the spark we need to solve a huge problem that has eluded us for so many years.

    Im sorry my first post was so unclear. I and so many others find big blocks of text so off putting and difficult to read, I tried so hard to keep it as brief as possible but I tried to say too much with too few words which really didnt work.

    The ideas and comments posted so far are brilliant and Im so glad you did post them, thank you so much.

    I would have been so upset if there had been no response. If we hold off the brainstorming until weve seen the film we will all be singing from the same hymn sheet.

    Theres no hurry. I realise it will take a few days for people find the time and energy to watch the film but I feel the film is vital to finding new perspectives and solutions.

    Some people will not be able to watch it. I am not banning anyone who hasnt seen it from posting.

    I just feel there are so many more possibilities after seeing it.

    I feel it would be more productive to hold off brainstorming until we have had time to see the film rather than try and catch up and rewind later.
  15. Bob


    England (south coast)
    Hi Pebble,

    I'm really sorry, but I can't watch the film at the moment...
    I have a problem watching long videos on my PC because it's a desktop, so I have to sit up at a desk to watch videos on it, which I don't like doing.
    And I also have such a long list of stuff that I need to do at the moment, including other videos that I'd like to watch...

    I really understand everything you've been saying about isolation.
    It's been a real problem for me on so many levels, especially when I was at my most severely ill, and I couldn't leave the sofa, or arrange anything for myself or even think for myself. When it's a painful exhausting struggle to even drag yourself to the kitchen to make a cup of tea, life becomes quite desperate.

    Like you say, there's a problem getting help with practical things, like DIY, form filling, dealing with admin, getting to appointments, shopping etc. I've never been able to get any help with anything except shopping and an occasional meal cooked for me (both of which i'm really grateful for).

    Because many of us don't have money, we can't afford to pay to get help with anything, and the government doesn't provide any help, unless you know how to negotiate through a million hoops.
    When you've got no money, and no help, and you can't do anything for yourself, it can feel desperate at times, can't it.
    I've felt isolated, frustrated, desperate, and despairing at times.
    I'm in a much better situation with my life at the moment though, and my health has stabilised, and improved significantly.
    So I'm not seeking sympathy in this post, but I'm describing my level of empathy.

    I've been thinking for ages about these problems that our community face, and thinking about what we could do on a community level to help each other.
    But I'm afraid that I've not come up with any answers.
    If we all had loads of energy and money, then we would all be able to help each other so much more.
    But none of us has spare amounts of either.

    In my local area, we do have a small active Yahoo Group, and a small number of us arrange meetings through the yahoo group.
    Most of us originally met through the regional ME society.

    Pebble, not having watched the film, I don't quite know what you have in mind, but are you talking about using technology to bring individuals and communities together?

    Are you asking about how it maybe possible to find someone who you have things in common with, with related interests, who you could form a friendship with, and preferably in your local area, who you would be able to socialise with?
  16. pebble

    pebble Senior Member

    Hi Bob thank you for your post,

    No problem, I do understand,

    so many of us are drowning and some will simply not be able to watch the video but you have proved that is not a shootable offence because your ideas and contributions have been and are brilliant, thank you.

    Its just I cant possibly explain all the new possibilities in a post. Its not so much the information in the film its the perspective you gain from seeing it.

    I understand that what Im suggesting sounds too utopian without seeing the film but it is perfectly reasonable and achievable after seeing the film.

    But please dont feel pressured, we all have enough of that already. I know some will just not be able to watch it.

    Im only asking, for any who possibly can, it will be worth it.

    Your question.

    Pebble, not having watched the film, I don't quite know what you have in mind, but are you talking about using technology to bring individuals and communities together?

    Are you asking about how it may be possible to find someone who you have things in common with, with related interests, who you could form a friendship with, and preferably in your local area, who you would be able to socialize with?

    Absolutely yes to both but also much more.

    For us to take a more advisory role to employ someone to carry out our instructions as a CFS/ME community in each county.

    You are so right none of us have money or energy to spare.

    Im hoping each CFS/ME county will decide what they need and have one central point run by one non CFS/ME employee to coordinate and carry out our services.

    I have dealt with many advice charities and find they do not understand CFS and dont adapt their service to compensate for our disabilities.

    For example, many of us find talking exhausting yet National Debt line refuse to allocate a specific advisor so that every time you call you have to explain your self again. They have notes but you still have to fill in the gaps.

    CCCS do provide specific advisors but their selection process in selecting staff is nowhere near as good as Consumer Direct.

    Accessing CAB is also really difficult, having to make appointments, not being able to predict when we are going to be well enough and the energy and organising to get there. Also it is such a lottery weather you speak to someone competent and helpful or incompetent and difficult.

    Stress, fear and frustration are so exhausting.

    Explaining CFS or talking to someone who doesnt understand CFS/ME is so exhausting.

    For example for help with filling in benefit forms.

    Imagine if each county ensured there was at least one specialist advisor who was specifically employed or trained and selected by us whom you knew :

    1. You could trust.
    2. Will really understand CFS/ME.
    3. Will be suitably qualified and experienced in their specialist area.
    4. Will have had their style/personality carefully considered before selecting / employing them.
    5. Not have to waste energy and concentration trying to explain a condition that is so exhausting to explain.
    6. Have the option of them visiting you at home.

    If we had better quality local, practical specialised advice and support we are far more likely to win more claims, get better results and have better outcomes.

    Imagine how much more energy we would have if we had more money and less stress.

    We already have so many excellent online charities, websites and forums.

    I was hoping this new concept of ground level local support would only focus on things that cant be achieved online.

    Things that require local knowledge and practical help such as coordinating a rotor for home visits for whichever specialised services we decide we need. ( each county may be different)

    Another possibility could be.

    Anyone on this forum clearly already have the IT skills and access to a computer.

    Many may not have any interest in going online but many would love to be able to access this forum but do not have the IT skills or access to a computer or the energy to find out where to start to learn.

    Because many of us have difficulty with our short term memory (and so many other reasons) it would be too daunting, difficult and stressful to learn IT skills in a standard IT course.

    A new concept of local ground level support for each county could provide the opportunity for people to have the choice to learn how to access CFS/ME sites one to one or in small groups for free at a public library or IT centre.

    Once they have the confidence they can then access the sites independently.

    Better quality local practical help could seriously improve our standard and quality of life.

    We dont have the energy or the money to do it ourselves but we can create it if we take an advisory role as a CFS/ME community for each county.

    Money is such a huge issue I will be posting another thread in the finance section.
  17. invisible ME

    invisible ME

    Hi all,

    I watched the film (Us Now) that pebble recommended. In the interests of furthering this important discussion, I thought I'd take a stab at providing some cliff notes. Obviously, as pebble notes we won't all be able to watch it, but may be interested in the general topic.

    The film makes an argument for a broad-based collaborative/participatory/grassroots approach to organizing, government, and decision-making. In particular, it illustrates the impact of technology (i.e. internet) in bringing together disparate groups and individuals...for a variety of purposes including: social networking; sharing of resources (especially but not only information); community-based decision making and problem solving; governing; etc.

    "Us Now" argues that problems are often better solved at a grassroots level, rather than in a top-down institutional model. In other words, when tackling a problem, the more people/groups/points of view included, the better the solutions. While acknowledging that there are limits to this model (in some instance "expertise" is preferable to broad consensus - i.e. surgeons' medical expertise vs public opinion), the film provides some compelling examples of how this approach has generated interesting solutions or ideas:

    - wikis, open source software, collaborative government (i.e. avenues where voters are consulted and provide real feedback on policy, etc)
    - social networking, internet forums, community banking models
    - gift economies where services/knowledge/resources are shared and organized (often in part through the internet) with little or no financial compensation
    - expanding and/or working outside the sphere of official, organized politics in order to generate more space for consumers and citizens to impact decision-making

    These ideas can be implemented in various ways and for various purposes, according to the film. Such a collaborative model could lead to wider participation, with more diverse perspectives being heard. Anything from organized politics, to local community-based groups, to play can be re-conceptualized. The film points to the failure of organized politics, traditional institutions, and corporations to provide fair and relevant quality services.

    Potential weaknesses with collaborative models include:
    - people/groups who are excluded (i.e. do not have access to technology)
    - problems associated with majority rule (i.e. insufficient protections and forums for "minority" opinions, populations, etc.)
    - attempts at subverting the model or harassment (i.e. trolls)
    - instances where there is a genuine need for expertise, and how to define those instances
    - others??

    Consider this my partial attempt to convey the gist of the film for those who cannot watch. Please feel free to add/correct/etc.

    Pebble, I'd be interested to hear more about how you see these ideas being relevant to the topic of loneliness and isolation. I think elements of this forum constitute a good example of the kind of collaboration discussed in the film.

    Thanks all for your thoughts on this topic all, I've enjoyed everyone's comments so far!
  18. Zavier

    Zavier [banned as spam]

    All the solutions are good and watching movie is the best one and going for walk with your pet also a good solution. Because loneliness is created by our own self and if we remain busy in any work then loneliness can never come in your life.
  19. pebble

    pebble Senior Member

    Hi invisible ME,

    You are a genius, thank you so much.

    I have had the film for a few years and have watched it many times but I could never have explained it so eloquently. Your summary is so accurate and well balanced.

    Thank you so much.

    What I love about the film is not only that it so full of so many new ideas but how they can spark so many more.

    While acknowledging that there are limits to this model (in some instance "expertise" is preferable to broad consensus - i.e. surgeons' medical expertise vs public opinion), the film provides some compelling examples of how this approach has generated interesting solutions or ideas:

    Im so glad you mentioned the expertise point.

    I am afraid people might think my ideas are too simplistic and utopian but I am a realist.

    If I had to have an operation I would definitely prefer to have one person holding the knife than the knife being directed by a stadium full of football players.

    I also feel that we know best how it feels to have CFS/ME.

    We are best placed to understand specifically what our needs and difficulties are.

    No one can be better motivated than us to find solutions to those difficulties.

    At present we are being fobbed off and are not receiving the help support and investment we need.

    It is so much cheaper for the medical profession to continue to fob us off.

    Upton Sinclair said:

    "It is difficult to get a man to understand something, when his salary depends upon his not understanding it!"

    It is not in their interest to change.

    We want change, they do not.

    They have and will continue to resist our attempts for change.

    They are using our disability of lack of energy against us.

    Thats why we need to employ non CFS/ME staff and take a more collective advisory role.

    I also love Socrates ideas on logical thinking and the importance of questioning our assumptions.

    How he compares thinking to potting and he couldnt accept that every opinion was equally worth listening to any more than every pot was equally capable of holding water.
    I found it relevant to CFS/ME and the medical profession.

    I am not asking anyone to watch it.

    It is definitely not instead of or as important as Us Now but if anyone is interested there is a 25 min programme.

    Not compulsory!

    Only if youre interested.

    Socrates on Self-Confidence (Logical thinking) SERIES 1 EPISODE 5 (25 mins)
  20. pebble

    pebble Senior Member

    Before brainstorming new ideas for better alternatives I feel we need to:

    1. question our assumptions.
    2. have a clearer understanding of what our difficulties are, specifically.

    I ran a similar thread elsewhere. Here are some difficulties, please add to the list:

    Difficulties with the current fixed group meetings.

    1. Many cannot get to fixed group meetings.
    ( too far, too ill, too isolated, no transport etc.)

    2. Others may get to fixed group meeting but take days to recover.

    3. Many group meeting are scheduled every month/ every 2 months. As our condition varies so much if we are not well enough on the fixed date it can be such a long time before the next opportunity to meet.

    4. Many find a group situation too stressful and exhausting.

    a) Speed. Many find it difficult and exhausting to think, speak and listen quickly enough to keep up with conversation. (even one to one)

    b) People who are more severely affected may find it difficult to keep up with the speed of the less severely affected.

    c) Difficulties with short term memory can be embarrassing. Forgetting names, words and loosing threads.

    d) Loosing concentration.

    e) Group situations can be so much more draining because it involves using so many of our senses. Even if we are listening to one person we will also be picking up on the group dynamics and body language and reactions of the others.

    f) Multitasking, conversations in groups can split and there can be several conversations at the same time.

    g) Many find any kind of conflict or even threat or possibility of conflict too exhausting.

    h) A clash of personalities can result in people feeling they cannot or would rather not attend a particular fixed group.

    i) Pressure. If an argument does arise it can be devastating and leave someone feeling they can no longer attend the fixed group.

    j) The dynamics of each support group is different. The dynamics of each group also varies over time and as members get to know each other and come and go. Each group is lead and influenced by the person who set up the group and those who attend. Some find joining an established group difficult and worry they wont or arent genuinely accepted. Some can feel threatened if they feel a new member may change the dynamics of the group negatively.

    k) There are so few groups that people generally chose a group because it is the nearest. The groups will be made up of many different personalities, interests, needs and expectations. Some may need to chat some may need to campaign. It will be difficult to ensure all have the opportunity to achieve what they need in such a small space of time.

    l) Some have MCS and are affected by people wearing perfume.

    m) Finding a suitable and affordable venue within distance.

    n) Setting up and coordinating the meetings takes a huge amount of energy.

    Please add to the list so that we can have a clearer understanding of specifically what our difficulties are before brainstorming solutions.

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