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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Is being a member of an ME support group holding you back?

Discussion in 'General ME/CFS News' started by Graham, Jul 9, 2016.

  1. Graham

    Graham Senior Moment

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    There is an idea amongst some medical professionals that being in an ME support group, whether local, online or national, prevents us from improving. Recently, with a lot of help from my own PR support group, I created this relaxed analysis of why that idea arose, and why the logic was wrong. I didn't think it would be of general interest, but it seems to have taken off.

    http://meanalysis.blogspot.co.uk/

    As usual, my first draft was a lengthy, rambling affair, typical of a retired maths teacher, but my friends sorted me out.
     
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  2. Denise

    Denise Senior Member

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    @Graham - it is a very good piece and very much appreciated. :)
     
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  3. Living Dead

    Living Dead Senior Member

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    This BS isn't exclusive to ME/CFS. How many of you haven't heard that you better start thinking positively, because "research has shown" that people who are optimistic with regards to their health live longer? The obvious explanation, that people are realistically optimistic because they have better health, and realistically pessimistic because they have worse health, is ignored.

    I believe this type of argumentation comes from anxiety and fear of life's uncontrollableness. These people have a need for control, and they cannot emotionally handle the facts that good health is about luck, not mind over matter. They cannot handle the fact that these illnesses can hit them.
     
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  4. Graham

    Graham Senior Moment

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    There's a pretty common belief in the utterly false idea that positive thinking can cure all sorts of things. But many illnesses have support groups that are accepted by medics. There seems to be a general impression that our support groups are angry, negative and destructive. It's all rubbish, of course: our groups reflect the usual range of characters, and you would find the same frustrations with the way that the illness impacts on our lives as you would with people who have arthritis, MS etc. The difference is that we also are justifiably angry and frustrated with some of the medical profession for the way that they treat us, and I think that is really why they don't like us getting together.
     
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  5. A.B.

    A.B. Senior Member

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    Uneducated, isolated, insecure patients are easier to manipulate and exploit. They don't like us being together because support groups help with all these and patients stop believing the BS. Their business model only works as long as people believe in the therapy.
     
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  6. Chrisb

    Chrisb Senior Member

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    CBT does stand for "Controlling Behaviour" Therapy, doesn't it? I keep forgetting.
     
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  7. msf

    msf Senior Member

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    Yes, I used to be a jetsetting, deal-making millionaire businessman before I joined an ME support group.*

    *Sarcasm

    These people are morons!
     
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  8. Groggy Doggy

    Groggy Doggy Who let the dogs out?!! Woof! Woof!

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    I agree, We are very ill and fighting against large industries with lobbyists that pay our elected officials hundreds of millions of dollars to manipulate the system. We are very ill and fighting against corporations with floors full of attorney's waiting to pounce on us to deny our benefits.

    But we are now considered a threat since our peaceful protests are in front of government buildings (despite many of us are in wheel chairs and others that can only show their presence by a pair of empty shoes)

    AA (alcoholics anonymous) has been shown to be a successfully proven model since 1939; formed long before we were brainwashed into believing that a medicine cabinet full of drugs was the cure to all of our ailments. Connection and support are important to both sick and healthy people alike.

    So don't buy into the BS. Stay united and keep supporting each other, because thats the ONLY way that things will change.

    GD :dog:
     
    Last edited: Jul 9, 2016
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  9. Being in the French Resistance kept you back from peace, advancement and prosperity
    At least from the eyes of a Nazi

    Just a thought :p
     
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  10. ahmo

    ahmo Senior Member

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  11. Horizon

    Horizon Senior Member

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    I can't disagree with the assertion more, notngetting together with other people and bitching about it doesn't eliminate the problem. People aren't healthy and seeking out groups and becoming ill. We suffer anyway so why not support one another, share coping tips and empower eachother. Especially with our illness being so isolating and misunderstood.
     
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  12. eastcoast12

    eastcoast12 Senior Member

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    This x 100
     
  13. barbc56

    barbc56 Senior Member

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    Yeah, it's holding me back. It's holding me back from experiencing a lot more misery and grief. :rolleyes:

    I think it depends on the individual and the type forum to be effective for patients. There needs to be a match.

    Also, yeah, why are they focusing on me/cfs? It's asinine!:mad:

    @Graham
    I haven't had a chance to read your blog but thanks for writing this! I have a feeling I won't be disappointed.

    Some think any support group can be enabling. Bull hockey!

    Edit again.

    Read it. Loved it. The cartoon is spot on. Again, thanks.

    One question. Do you have a hard time getting members who attend regularly as this DD has it's ups and downs. For those who can't make it to a meeting, a forum is a life line.

    Something just came to me that might be helpful to patients is if the support group reaches out to those who can't attend. Sometimes just having someone to visit can be therapeutic. Perhaps some groups already do this? The logistics of finding these people might be difficult but I wonder if there is a way to get around this?

    I'm just brainstorming here.
     
    Last edited: Jul 9, 2016
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  14. *GG*

    *GG*

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    Yeah, that's funny. I have found lots of help via In person support groups, and online. I do better than most on this site. Been here since 2009, try to give back when I can!

    GG
     
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  15. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Some individuals just need the opportunity to add their voice to the conversation about ME; Support Groups can do just that, and boy what a difference that can make for those who feel isolated. Knowledge is power, and it is the combined experience of the group that can empower an individual, who otherwise may not have the understanding to cope with their illness.
     
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  16. Graham

    Graham Senior Moment

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    Hi @barbc56 . Glad you liked it. The suspicion of support groups covers all of them, from AfME to small local support groups, from the Facebook ME Chatroom to smaller online groups like Brainfog. Such a generalization is daft!

    Our local support group has around 30 members, and we meet up for tea/coffee once or twice a month. Sometimes there are only two of us, sometimes a dozen, but there never has been a time when everyone manages it. There are a couple of people on the list who are unable to make any of the meetings, but we exchange the odd emails (and emails from me can be very odd), and share bits of news, send cards etc. They aren't really up to visits, as they have family and have little spare energy for visits (although we do offer). Rather than view it as an ME support group, we think of it more as people getting together for a coffee, so it doesn't really matter how many can make it.

    As far as advertising the group is concerned, we tried posters in GP surgeries, health food centres, supermarkets, church groups, local hospital .... but the most effective way is to be listed in the local free "magazine" under clubs and societies. I've also got a website (meetup.org.uk) that has a map of the UK with pins for each of the groups. It started up just covering the South-East, and only recently have I discovered how to use Google Maps and expand it to the whole country. You are welcome to have a pin! AfME also have a map and MEA have listings: originally AfME had listings, and both listings were unreliable, which is when I set up the site with help from friends. It also has some basic introductory stuff for newbies: when I first went down with it I found the sheer volume and depth of stuff online about ME too overwhelming.
     
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  17. JohnCB

    JohnCB MEow

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    It is very hard to keep such listings up to date. ME support groups are up and down, er, like a thing held up by elastic. When a group is formed it can be a long time before anyone tells the list maintainer and when a group becomes dormant, nobody tells them anyhow. I don't know what the average life duration of a local group is - it may only be a few years while you have someone with the strength and desire to maintain it.

    Any voluntary group has problems maintaining an effective team to run the group, especially when there has been someone who has taken on a larger part of the work. Sometimes they can be impossible to replace even in a group for healthies. The difficulties are much greater in groups like ours. It seems to me that it is even worse for ME groups as we rarely seem to get healthy people to take on energy draining roles. Most health based voluntary groups seem to have non-sufferers running them - not so for us.

    I was on a committee of a local ME group for a while but I did struggle with it. They wanted me to take an official role, one of the standard chair, treasurer, secretary, membership but I resisted that, but I did take over the newsletter, which was in fact a magazine which we sent out about three times a year. There were many members we never saw: I think they just wanted to feel they belonged to something, that they weren't alone. The newsletter was their only contact.
     
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  18. Graham

    Graham Senior Moment

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    We had a large, local group like that, @JohnCB , but it collapsed as people couldn't be found to take on the duties. That's why, from the start, our local group never had any structure like that. One of our meetings is regular, and for the other one, two of us decide where and when to meet for coffee, and we tell the others by email. That's pretty much all there is to it. We changed the regular meeting recently after discussing it at one meeting and sending an email out. If you do something like this on your own, you sometimes end up by yourself for coffee, so if there are two of you, at least you have company, and if, like us, you enjoy gardening, a garden centre is ideal!

    As far as keeping the list up to date, it isn't that hard. The person in charge either checks each link is live, or, better still, sends out an email once a year to all the contacts on the list, and removes any that get no reply. Most of the south-east groups on my site have been running for quite a few years: only two or three have gone.
     
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  19. JohnCB

    JohnCB MEow

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    You are forgetting @Graham just how recent all this new-fangled interwebs stuff is. It is quite new that you can expect most members of an ME group to be available on email. I imagine that there are still some people with ME who do not have email. When I was doing this stuff, I would say that the majority were not online, not even all the committee. It's good that we can communicate this way now. I was an internet early adopter and I was extremely glad to have this means of communication when I had to leave work.

    When I joined my local group a few years after that, I actually did a pitch to the group about the advantage of having a website. Nothing happened then as the committee meeting descended into internal politics about the groups name of all things. The group did create a website several years after that, when the chair had effectively become an autocrat and someone did it under her control. I could have done it a lot more cheaply, in terms of hosting fees. I did take it over eventually and I cancelled the original contract that cost a hundred pounds a year, but we had to pay an exit fee to keep the domain. I got it hosted with the company that also did a personal site for me, for twenty pounds a year including domain name registration.

    I agree with you about the big organisation problems, the value of informal coffee mornings/afternoons and so forth. We even did a garden centre visit one time too. It's great that we can arrange by email now, but when I did it we had to list them in advance in the newsletter. We did it all the same as it is a good idea. I do have personal experience of hosting an empty room once or twice. We had the policy of not doing too much so as not to overload hosts in these circumstances. Informality was key.

    I've dropped out of these activities now.
     
  20. Graham

    Graham Senior Moment

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    Fair comment, @JohnCB ! My son went down with ME in 1989, so I do remember the pre-internet days - that was when the earlier group that I mentioned was running. I went down with it in 1999, and created the website in response to the massive increase in internet usage. Only one of our members is not online, so I give her a ring when we have the dates of the next meetings. It makes it all so much easier. It also means that there is no need for a big newsletter: we can send out news, links to videos, etc. whenever anything crops up, and can ask for opinions on proposed changes before discussing them at a meeting of just a few of the members.

    It was a pretty lonely experience with ME before the internet!
     
    Last edited: Jul 10, 2016
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