Discussion in 'General ME/CFS Discussion' started by golden, Jun 20, 2013.
I should say in the very severe years, all day was the worst time to do anything.
Yes I have had all sleep /wake combinations possible i think and have had times when am /pm /evening /night have been the best .
Its daft as part of a depression differential diagnoses stating M.E. people are better in the morning depressed people are worse in the morning. I have just been reading that on a CBT site.
I strongly agree with the health element . What would help me is to be around people who were introducing me to healthy things and getting enthusiastic about it too. Not using an M.E.meeting to load themselves full of coffee and scoff down cream buns.
There is nothing conclusive about any particular diet and M.E. and so I believe it has to be individual (but healthy ).
So there is paleo , raw paleo , vegetarian , vegan , mcdougall , macrobiotic , and on and on and on...
Now I find I am best on a plant based diet. And I am STRONGLY now feeling its been very good for me stopping all Gluten...
But my point here is with M.E. we have people who need to have a dairy free diet , a gluten free diet , chemical free diet , meat free diet ,
when mine busy themselves organising swimming, aerobics , shopping trips and gatherings around pub meals which rarely have anything catering for these dietry requirements... (let alone a pub atmosphere )...
are they actually just excluding people with M.E.? Its like joining a coeliac group and them offering only wheat products to you !
They get charity funding for that too.
What would be good social events to do ? I dont know .
Centering around unhealthy food and drink is off my list .
I do like learning things. I would enjoy learning skills (especially if later I could make money from it )
Does anyone know where to find an M.E. advocate to employ ?
At one point I would have paid someone to help me.... with the benefits , doctors etc . but its finding knowledgeable people who will fight tooth and nail for me -....
Also, where do advocates train? It would be very good for M.E. groups to employ advocates for practical help.
I was at the beginning of a support group started 7 years ago that is growing still. We've been luck to have various people step in, including healthy people of members, when others have been sick. Although it's hard for me to attend regularly, we have an even bigger e-mail list that is reasonably active to share local info.
I think what's important and, kudos to our founders for this, is to lay ground rules and enforce them as needed. For instance, speakers are screened to some extent, people can talk about different therapies but no "pushing" treatments onto others, no rudeness, confidentiality, etc.
Regarding stuff like the setting or food, those are more peripheral considerations. The main thing was to start something. If someone brings food to share and it's not to your diet/ taste, don't eat it and don't expect people to be accomodate for everything although we have rules about no/ minimal fragrance.
At one point, someone tried Skype meetings for the homebound but I'm not sure where that is now. Skype is free teleconferencing if you have a computer, with or without video.
I agree food is peripheral.
obviously if someone brings themselves a sandwich to the meeting - that doesn't bother me in the slightest ...
it does become rude and exclusionary when you PAY to be there and yet they only offer caffienated drinks (given the illness-this shows lack of empathy and understanding)...
Then having group meetings centred around food eg.at pubs etc. when the menu doesn't accommodate everyone and they couldn't care less about that.
I am thinking of making a complaint to thecharity funders because I think that if you are not going to support people with M.E. then you are misappropriating funding.
I like what you say about the food being peripheral as well. I think everyone has a different level of expectation, some are easy to please they are so grateful for anything (that would be me)ha ha . And others want more, which is good in it's own way as it can improve things. I think just have to be careful to be constructive and not destructive.
I may sound harsh. I know. I seem to still have the 'sting' of it in me
It was more painful to me watching people being excluded than being excluded myself.
Constructive and destructive go together really. I do have expectations of an 'M.E.' group to accommodate for its M.E. members - or else whats the point ?
Skype sounds like a good idea .... I could stay on the couch and the group could take me to the pub ha ha Skype sessions at the pub
like your sense of humour golden ha ha
And then there is the ME/CFS support group on Second Life--there you have an animated avatar and can use audio or regular chat. They have regular meeting in a virtual support center. (no virtual cakes or caffeinated drinks! )
I should hope not ! lol
I vaguely heard of this second life...
Occasionally when it hits the news and effects real life in some way.
I tried to look up the M.E. group (becsuse I am nosey ) but couldnt find it ...
It sounds good idea
Do people go to work on it there and make real money too? or is that a myth I have picked up?
the Second Life meeting is here on Mondays at 6 or 7 and for an hour or more after that, SL (California) time ( Sushi this is a change in location; MU closed their sim but Curtin uni gave us space). if anyone has trouble getting there, ask alex3619 or Traskin
Sadly its both real and a myth. You make Lindens, second life money, but the conversion rate to real money is such that you would be better off working for peanuts. Yet some do this kind of work for pocket money - I am yet to be convinced there is much profit in it. Where there is limited profit is where you make something then sell it - virtual clothes, avatars, etc. So you can make money, but I think the only people making real money is the Linden corporation.
We recently shifted venues as Murdoch Island where we were closed down.
There is also an ME or related meditation group there that some may like, as well as more regular meditation groups. We are less a support group than a discussion group: we do support people who need it, when they need it, but mostly we discuss stuff. Some of that is advocacy, or medical science, and some is jokes, movies, or recipes - whatever people want to talk about. There are a number of ME artists on second life, and we still have some of their artwork around I think though much of it may have disappeared over time - I am not sure.
Shame about the Lindens
I dont have the right equipment to join...
Is it the second life has to be a reflection of real life ....
if not i would join the cycling group (if there is one - i LOVE cycling)
There probably is! Some of us used to pole dance there!
ha ha - really ? i am way behind on computer games (manic minor on spectrum like behind ) and technology ....can hardly imagine the second life .....
i felt a bit bad actually after finding out there was an m.e . group on there saying I am off ...joining the cycling group
don't worry about that! the point here is to find something that works for you. If video game cycling works for you (and your computer will handle the program; it seems you had some doubts about this), go for it!
Ive been to various ME/CFS support groups over the years or mingled with those who were trying to start one up (they are often hard to start up as most will be too sick to attend on the da). Our local ME/CFS association (Im in Sth Australia) .. has small groups about the state started by different people which they advertise in their mag.
On the rare occassions someone has taken me, Ive enjoyed many of these. They have have had a rule of wearing no perfumes.. which is good as I probably wouldnt have gone otherwise or if I had may not have been able to stay. That is an important rule for any ME/CFS group to have.
I can thou remember one group meeting where I felt very very out of place. I was at a CFS/FM talk.. well aware that I was the sickest there.. everyone else was appearing fine (and also sharing all the things they'd been up to..all stuff I couldnt do.. nearly all on that occassion only had FM).. and I was slumped in a chair, too weak to be sitting well about to end up on the floor, wondering why I earth I went. Most of the time when Ive gone to a ME/CFS support group meeting thou, Ive been well catered for (and went cause I knew they had the catering for a more severe ME/CFS people) eg mattress or a lounge I could lay on while there. I think its very important if you run these groups to provide something for those who have to lay, so they can still attend if they wish and not have things so there is no way someone who wants to attend cant as you arent catering for the more severe group.
I had a bad experience this year with my local Seaford ME/CFS support group. Monthly meetings were advertised in my local paper and I used very valuable support time up in being taken to it (time which could of been used by my support worker to inside make a few meals to freeze as I was going without many meals). I got taken to where the group was supposed to meet as advertised, as I desperately needed (and still do) to find a good GP in my area who has some ME/CFS patients (not necessarily a specialist but a dr who is really aware of the complex and severe illness we have.. my ME/CFS often impacts treatment of other things so I need a GP who understands this or will really listen).
Anyway.. my support worker took me there.. and we waited and waited.. only to end up finding out that that group hasnt even met there this year. So I wasted my valuable support time for nothing. Seems the group never cancelled out the ads for their monthly group when they stopped running it.. (and there was no contact number in the ad about the group either so one couldnt even check on it.. all one could do is go and then find out it wasnt even running anymore).
If you decide to try to run a support group and advertise it.. please please include contact details in your ad so people can check on the group before they try to attend!! If you stop running it.. make sure all advertising for it is removed or stopped.
I'll be soon trying out another ME/CFS support group who I think meets about every 6 weeks (they said they may be able to get someone to pick me up). (Im glad I saw this thread as I was supposed to contact the person to go onto a mailing list weeks back but had forgot)
I have often felt that the most effective support we could have would be if we could get some sort of organisation like the Macmillan nurses or Marie Curie Cancer Care setup running for us.
Trained specialists who will visit and give all the appropriate support needed - including help with benefits and form filling.
Are youse lookin' at me?
I'm quite shy with strangers, and can find it hard to start talking, then sometimes I can't stop! I can hear myself rambling on and going off on tangents of tangents (UK people will probably be familiar with comedian Ronnie Corbett's monologues) and thinking "Shut up, me!" I sometimes get disorientated in the middle and realise that people are looking at me and listening to me, and panic! Maybe this is common in ME. If so, the others will understand.
I don't have a local group. There was one set up for FM a few years ago, and I was told I was welcome, but as others have said, mornings are a no-no for me, and that's when their meetings were. This was said to be so that participants could pick up their children from school, so I guess they didn't have the same problems as me, e.g. not being able to afford to run a car, not being able to concentrate enough to drive perhaps, and/or not having the strength to drive for long.
There have been threads and at least one blog on here that seem to suggest that there is a higher incidence of Asperger's in the ME population than in the general population. I myself seem to be borderline Aspie. There are quite a few aspects of the conditions that overlap, and also possible causal factors, notably leaky gut.
Why wouldn't a 97-year old woman have ME? And I think we are generally agreed here that ME is a lot more than tiredness.
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