The ME/CFS Society of NSW Inc.

This one certainly got around

What are the practical implications though? I mean, exactly what would societies have to do in order to cater to those who cannot leave bed? Some suggestions above are tangible, others are a little lofty. Practical ideas would be great! What sort of activities would be suited? What is the average attention/awake span of someone with severe ME/CFS?

I would have only classified myself as severe for about 6 months and then moderate/severe after that for a bit (and currently on the mild side of moderate/mild). In that time, watching a video or listening to audio tapes or getting online were all out of my reach for a decent amount of time. I have a lot of trouble understanding exactly HOW severe the classification of 'severe' is. It sounds good, but in order to cater for this sub-group more specifically, societies will need more specific details. Are we talking bedridden? housebound? hospitalised? with cognitive dysfunction? with photosensitivity? What is the general definition of "severe"?

The problem then moves to the fact that if the list provided includes every possible sign/symptom, that it would be virtually impossible to cater for them all. The same would go for those classed as moderate or mild, the sign/symptom list is so vast that trying to work around all of them would mean that very few if any activities at all could be held without having to apologise to a considerable amount of people. I mean, I have no problem apologising to people who are unable to attend due to the event being unsuitable or booked out etc, however I'm a little concerned that the idea is to apologise to those people by the reason they cannot attend, that'd be a LONG list.

Also, by catering for those who are bedridden, I'd not like to think that any society would discriminate against those who are more able or recovering on the basis that they are not sick enough. Its bad enough that the world in general is unaccepting of those with ME/CFS who appear physically able, but I'd hate to see that spread into societies and fellow sufferers.

So, list of questions Discussion topics only, I'm not really agreeing or disagreeing with any, just figure they warrant discussing

What is the definition of "severe" ME/CFS?

Exactly what are those with severe ME/CFS able to?

Why is it felt that societies in general are excluding this severe group?

Do those who are moderate and mild feel excluded also? Would they feel excluded should such recommendations as above be introduced wholus bolus?

Do you feel this exclusion is intentional and targetted? if so, why?

If those with severe ME/CFS expect more services and preferential treatment (activity materials, places at suitable events, and other resources) than those with mild or moderate ME/CFS, should yearly dues reflect this?

What specific things do you feel could be put into place to better cater for this group?

I think its great that those with severe ME/CFS are standing up and asking for what they feel they need, but bring on the moderates and milds too!
Stand up and ask for what you feel you need, be practical and specific, but give the societies some options as some things are very hard to accomplish and may take some doing to get it right (and do be nice, you catch more flies with honey than vinegar... just be really persistant honey )

Feedback! fantastic Welcome aboard Topaz

OK, well, we are going to need some sort of definition, otherwise trying to cater for those severely affected is going to be even more difficult. How far away from bedridden can you go while still falling into the category of severe? I'm not trying to be limiting here or exclude people who can occasionally get the mail (I was so excited the day I walked to the mailbox, so I know where you are coming from), its just that its easier if we have a 'target audience' because at the moment its still pretty broad.
I know ability is going to vary, but in order to target activities we are going to need some guidelines as to what is completely silly, and what is OK for some and what covers most people on most days etc etc because it seems that currently we are missing the mark and I'd really really appreciate some guidance here.

The pressure to assist isn't aimed at severely affected members, its aimed at members (and members friends and relations and the general public and so on). The society is run by members for the members and that has good points and bad points. On the current MC, we have 5 sick people (none of whom are 100% recovered) and 1 carer and very few volunteers to help out. We run ourselves ragged trying to get everything done.
I wish there was a way we could afford to just pay for all the drudge work to be done and let everyone (including the MC) get on with getting better, but unfortunately its just not realistic.
I think I can safely say that NOBODY on the MC expects anyone to do anything they are unable to do. That is fine! We can't have everyone making themselves sicker in an effort to help, thats just counter-productive. By the same token though, we can't really stop asking for assistance because we really do need it, and if we don't ask it is rarely forthcoming All we will ever ask is that if you can, please do. We promise to thank you bundles!

I totally agree, we need to cater to as many members as possible. HOW? We need to know what the members want. We are currently doing what members need in the way of advocacy, councelling and general raising of awareness, etc but thats the stuff people hardly ever see. What do those who are severely ill want?

I can't think of many occasions where people need to go to the office. Are you referring specifically to meetings?
We have to have a central base, and it happens to be in Chatswood. Dreadfully inconvenient for some, great for others. It is set up for teleconferencing and has full disabled access. If you can think of any other ways we could make it more accessable to those who are severely affected, let us know and we'll do our best. I can assure you that the location of the office was not chosen in a way to exclude those who are severely ill. Public transport is close, it has full disabled access and there is a couch available for snoozing. We really did try to make it as accessable as we could.

OK, fee structure. Tricky topic. Currently everyone is getting the same deal, no bias towards the healthy or the sick. I'd personally be a bit uncomfortable making that distinction, but we may as well explore it a bit. I'll grab Greg (the treasurer) and see what the figures are like. I'll get back on this one.

I'm glad the idea isn't a new one, hopefully that will mean this place will be buzzing soon Would a chatroom be beneficial too? I've held off on setting one up until the forum got moving, but if people feel it'd be beneficial, I can put it on the To Do list