New, Improved Project ENOUGH!!! thread

taniaaust1

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Thanks taniaaust1, it's very interesting to hear how things have developed there. All these countries are like parallel universes, each with a different outcome.

Are the charities there trying to counteract the Wessely type guy?
Nope.. one of the CFS/ME support groups over here.. allowed him to do article for the CFS/ME mag and are refering people to him. Which sucks!!

And my own states CFS/ME support group (SA) stopped doing their regular CFS/ME magazine due to money saving (they really dont have much money) and last year merged their EXCELLANT journal with the other state CFS/ME group who are recommending the Wessely school view guy. As i said.. all states were working differently. I think they've had many complaints over it but i didnt complain as i arent subscribed to it now that its merged.

So yeah.. things do have to be watched here to make sure english views dont end up coming in full force thou i dont think they will.. the CC CFS stuff is also strong here. The balance of two conflicting sides and many not trying to have a biased on which way people choose to go probably will stay.

My own CFS/ME state group.. have publically stated that only trust one CFS/ME doctor they recommend and there wasnt any others they felt they would as an association recommend.. (that was about 5 yrs ago now.. and as far as i know they are not recommending other doctors).. and he's very good (my CFS/ME specialist) and understands all the subgroup stuff and the different groups etc.
 

taniaaust1

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yes please dont start disputes on this thread.. as i will then be leaving it and asking for another thread.. there is more then enough threads on the board to put ones disputes in.

I did read dryes's post thou with interest as it made me aware that the CFS/ME doctors accrediation course which was online and i done.. couldnt have been the same one as being talked about as i didnt see anything wrong with the one i did. (unless my perceptions were completely different).

So what CFS accrediation course was it then which i did?? It was about 3?? years ago?? ive no idea now what country it was supposed to be for. anyone know of another one which was online for doctors and the medical profession?
 

awol

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Hi There,
This is Marly Silverman,
There is a cause-project on Facebook that could use your participation and I believe it could enhance what you are doing also. Check it out at
http://www.causes.com/causes/511536

The cause now has 634 members and it has raised $1,154. Spread the word.
Thank you for all that you do.
Marly
Hi Marly,

Thanks for your note. I agree that these are quite compatible projects, and I do hope that you will gain the support you need. It takes many branches of action to have an effect.

I would like to point out, however that so far, you, nor anyone else from your group has posted about this over on the other forum where Project ENOUGH!!! is being coordinated. It is quite important for you to do this because many members there refuse to come here due to irresolvable differences over certain subjects and over moderation styles. These members are among the most active and informed in the ME/CFS community and reaching them would likely benefit your cause a great deal.

I have joined your facebook cause, and will donate soon. I hope for an ever increasing amount of collaboration in the ME/CFS community over such initiatives.



Just so that everyone knows, the following threads here deal with Marly's initiative:

http://www.forums.aboutmecfs.org/showthread.php?6752-Looking-for-a-Positive-Man

http://www.forums.aboutmecfs.org/sh...nched-This-WILL-Get-the-Attention-of-MILLIONS!

http://www.forums.aboutmecfs.org/showthread.php?6682-ME-CFS-Awareness-Campaign-Please-Join!
 

taniaaust1

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Please, try to stay on topic! :D;)



All projects need a clear place to meet and organize and for Project ENOUGH!!! this will take place on the good science forum. http://www.mecfsforums.com/index.php Of course, once team membership grows a bit and the projects are a bit more evolved, team members are welcome to reach out to other forums as I have done here.



What is Project ENOUGH!!! ?

- Project ENOUGH!!! Involves investments of time and energy, not money.

- We fully understand that most participants are sick and may not have much energy to give. ALL contribuitions, large and microscopic are welcome and useful. Penny jars do eventually gather enough money to do something useful.

- Project ENOUGH!!! Is being coordinated by me, but is not "my" project. It is simply an umbrella project aimed at focusing the energies of PWME around the clear but general goal of ensuring that good science moves forward.

- The project is made up of teams. Currently there are 5. More could certainly be suggested if there is a hole in the outline I have proposed.

- Team 1 is concerned with making sure that the information available to patients and doctors is accurate, and is corrected if it is not.

- Team 2 is concerned with making sure the media is aware of the complete story of CFS and the need to cover it. A timeline of bullet points that can be sent with letters is already nearing completion.

- Team 3 is designing and organizing public awareness campaigns. Their current focus is the urgent need for accurate testing and screening of the blood supply, and preliminary research clarifying exactly which and how many diseases XMRV is implicated in. Peer reviewed papers now show that the prevalence of XMRV in the healthy population is somewhere between 2 and 4, possibly even 7%. People need to know about this.

- Team 4 is building alliances with other patient groups for diseases in which XMRV might be implicated, or, for diseases that have been similarly marginalized or neglected by research. There is a thread with more information on this here. http://www.forums.aboutmecfs.org/sho...eases-outreach This team in particular badly needs volunteers.

- Team 5 is preparing rebuttals for scientific journals, along the lines of what they already did in Retrovirology. From now on, the hope is that ALL papers published on the topic of ME/CFS have our stamp of approval or disapproval, backed up by extremely solid scientific analysis. No more BS.
I'd like to say thank you awol.. :)

as your post got me and another Australian into discussions and we've got motivated and are trying to now do something which will help Australians with ME/CFS by gathering info most of us dont know but should (this can help when we are doing letters and contacting people etc), about our country and the ME/CFS situation and getting the info which should be easily available out there for all.

(i didnt even know what our national health system was called.. i knew englands, i knew Americas.. but didnt even know what health system i was under where i are. lol that is kind of sad but i think this is probably common in the Aust ME/CFS community).

I dont know of any online coordinated informal Australian response...so a group of us Aussies since your post, have started to formulate a plan to help the Australian ME/CFS situation improve and have already formulated a few steps of the plan and started our project today, everone is just doing whatever they feel comfortable with. (not bad for a days work :) )

Anyway.. i dont know if you'd like to include what we are doing and our group into a project ENOUGH group that are just Aussies trying to help Aussies (what anyone does in any country can only help the other countries!! and maybe ideas will be formed by what we do). Aussies are extremely multi-cultural and i cant imagine any of us just wanting to stick to a set forum, so our group will be connecting up throu MANY different forums including of cause the two main Australian CFS ones. Everyone is free to connect however they wish.

Im hoping you can accept our efforts into project ENOUGH and the other site be okay with us working throu multi-forums. (i'll post a thread at your sites forum about participating in our Australian CFS project soon.. its been far too busy just throu this forum today with the Aussie project).

.. basically our group is just Aussies who'd like to participate in any of the following areas in a gathering of forums

*putting some time into sharing knowledge of Australia ME/CFS milestones and events with each other
*gathering info to add to this knowledge and help keep the knowlege current (this knowledge is all kinds of things eg Australian CFS history, people eg ministers etc we can advocate to in Australia, to important CFSstudies which have been done or are currently being done here).


Step one and two of our project is to create an Australian CFS wiki page, it only just has been started on today so has a ton more work to do there.. as yet we dont have much of the info we want on it
http://www.forums.aboutmecfs.org/sh...+Project:Australian+CFS+ME+History+and+Events
.. We are also about to start a second wiki page to connect to our first we are creating. The second one will have the members of parliment and other ones we can advocate to here in Australia and also suggestions of areas in which this kind of thing needs to be done.

Once we have these two pages completed (or if people want to do so while the pages are being done).. Then we all can move on to focus onto the avocating (with easy info already there at our fingertips).

I was surprised today just how many things came up in a group of us today discussing all this (discussions went on all day.. 6 page thread from just the aussies talking about this today). http://www.forums.aboutmecfs.org/showthread.php?6895-To-the-Aussies

wondering if you will spread the word that we are doing this throu project ENOUGH or not?? (as i said.. i plan to post about it at other site when im not so busy).
 

awol

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Hello Tania,

I think it is wonderful that you are doing this! By all means work away via other forums, and set up a branch that deals specifically with Australia. The Australia effort would probably no longer be a direct part of Project ENOUGH!!! but you are certainly welcome to coordinate the effort and tap into the resources of our project. I have no problem with that. I do, however hope that any coordination of strategy specifically for our project can be kept safe in a single, semi-public incubator for ideas to exchange and develop in a healthy way between teams. Some ideas, while developing, are not ready for posting everywhere or for more public forums.
 

V99

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It's all part of the big giant push patients and career are now mounting. Australia will feed into the UK, USA, etc. and vice versa.

Countries are not isolated, and we know that the psychobabblers are linking up, as it can give them strength. We have to do the same.
 

V99

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Come on guys, join up. You will get nothing if you don't ask and fight for it.
 

awol

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Tania,

kim500 on the other forum has proposed starting a team 6 for international outreach, kind of like what you are proposing. Do you want to get in touch with her and Daisymay?
 

Mark

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Hi Marly,

Thanks for your note. I agree that these are quite compatible projects, and I do hope that you will gain the support you need. It takes many branches of action to have an effect.

I would like to point out, however that so far, you, nor anyone else from your group has posted about this over on the other forum where Project ENOUGH!!! is being coordinated. It is quite important for you to do this because many members there refuse to come here due to irresolvable differences over certain subjects and over moderation styles. These members are among the most active and informed in the ME/CFS community and reaching them would likely benefit your cause a great deal.
Hi Awol,

I really appreciate your efforts in highlighting the important issue of co-ordination of campaigning and key information exchange, and the losses to efficiency which affect us all when we are divided.

I'm interested, though, in the request to campaign organisers (and I would guess the same logic applies to some other information, maybe to many or most types of posts) to post to your forum as well because some of your members refuse to visit Phoenix Rising and so are unable to read information posted here which might be of interest and value to them.

I understand the logic of this, although it's also a bit curious to ask for help in reposting selected information that might be suitable to your members who refuse to come here; it seems as though it could be characterised as "please everyone repost also on our site everything which we might be interested in, because some of us refuse to visit Phoenix Rising to obtain the information there".

Because I recognise there is a genuine problem here, as mentioned above, can I propose an alternative solution? There are several people - including yourself - who are members of both forums, so what seems to make some sense to me is to organise a group of people who repost the most relevant and valuable content from each forum onto the other. That could help those people who are uncertain of the detailed differences between the groups, and do not wish to cause offence by posting material that is unacceptable to one site or the other.

I would read "this week on the other forum" avidly, no doubt...

And more generally, those sort of round-ups and repostings, cross-postings, summarisings, are so key. I would read regular round-ups of content from multiple sites. We need more librarians, dammit! :Retro smile:

Hey: here's a technical framework for this sort of thing: use free blog networks.

Systematically repurpose selected highlights from multiple ME/CFS sources as blog quotes, and amalgamate blog rings. Provide a clearing house. Something like that.

Any of this making any sense?
 

awol

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I should add Mark that I am not against your idea in principle, however if I am actually going to do something useful, like outreach and helping with the rebuttals we are writing, I simply do not have the extra energy to do the summarizing for people. If people want to promote their projects that is great, but it should not be up to someone working on their own project to also promote the projects of others. We have limited resources.
 

awol

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A final comment. :ashamed::D

If there IS someone out there who wants to take on the role of writing a "this week on the other forum" blog. That would certainly be welcome!
 

Mark

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I thought I should quote you in full awol but my point wasn't really about Marly in particular but about the general case. I had understood that this was your general note to campaigns and projects. I'm not sure that it is not up to someone working on their own project to also promote the projects of others - there's no automatic obligation, obviously, but a large part of the work of promotion is co-operation, surely - how do you ask someone to promote your own project and say that you are not prepared to support theirs? Mutual approaches are surely more efficient in the face of limited resources? Of course that's not to say that you are obliged to support anyone and everyone, but a degree of flexibility is obviously a fundamental requirement for building a significant co-ordinated network.

I don't think we need one ring to rule them all, but a few olympic style rings probably wouldn't hurt...
 

Mark

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A final comment. :ashamed::D

If there IS someone out there who wants to take on the role of writing a "this week on the other forum" blog. That would certainly be welcome!
And I hesitate to say 'a final comment', but we can agree, I think, that if somebody else wants to do this job, in either direction or both - and similarly for any other friendly forum(s) or sites - then that would indeed be cool.
 

taniaaust1

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Tania,

kim500 on the other forum has proposed starting a team 6 for international outreach, kind of like what you are proposing. Do you want to get in touch with her and Daisymay?
yeah i will.. so we can let people know what we are doing here for Australia and hopefully some other Aussies would like to join into the current activities. :) (no one is in change as everyone is joining in and doing whatever they feel is best, all are equal). No reason thou for Aussie group with what are doing so far for any kind of secrecy.. no plans of government attacks on Australia government :p .. by being open, others can see what we are discussing and doing and hopefully join into our informal things to help make things a bit better

i understand a need for secrecy of what you are up to thou when dealing with places like the CDC or maybe wanting to discuss the CAA. Need to think and get one step ahead of the CDC!

cool.. i just saw the CDC has replied back to one of my queries :)
 

awol

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I thought I should quote you in full awol but my point wasn't really about Marly in particular but about the general case. I had understood that this was your general note to campaigns and projects. I'm not sure that it is not up to someone working on their own project to also promote the projects of others - there's no automatic obligation, obviously, but a large part of the work of promotion is co-operation, surely - how do you ask someone to promote your own project and say that you are not prepared to support theirs? Mutual approaches are surely more efficient in the face of limited resources? Of course that's not to say that you are obliged to support anyone and everyone, but a degree of flexibility is obviously a fundamental requirement for building a significant co-ordinated network.

I don't think we need one ring to rule them all, but a few olympic style rings probably wouldn't hurt...
Mark,

This is blatantly unfair to me, since I have in fact on all of my threads and on theirs, supported their project. They have not returned the favour.
 

awol

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UPDATE:

A team 6 for international outreach has been added to Project ENOUGH!!!

This team will attempt to build connections internationally with different ME/CFS organizations, and ensure that access to important information is available through translation. If you speak a second language other than English, your help would be greatly appreciated here!
 

V99

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Hi mark

There are quiet a few people who pass information around to multiple forums. It's the only way to get information out to the community. It is in the bested interest of everyone if we all support patient projects like this. It takes no effort what so ever. Not sure why anyone wouldn't. Right now there are two brilliant projects on the go. Project Enough! and the media campaign. They both go together and have nothing to do with a particular forum, it's all about the patients.

Just to be clear, I don't even know where you are getting your assumptions from.