New, Improved Project ENOUGH!!! thread

[awol]

Please, try to stay on topic!



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.

 

[V99]

I'm a team one bunny, anyone with me?

 

[awol]

If you are in fact ALREADY DOING any of the activities listed above GREAT! But please, join the project anyway so that your efforts can be coordinated with other doing the same thing and so that you can share your experiences.

 

[taniaaust1]

thanks for this better thread.

So team one is basically about making sure articles online are correct?

hey V99, or maybe we could both pair up and organise a strike force against the CDC.. keep trying to get the answers we seek and push for CDC to openly recognise ME and what it is on their site and encourage others to do the same. This team could make sure as many CFS/ME people as possible know that the CDC says ME is different to CFS and encourage others to join in this push too. It could be called.. bringing the CDC crap into the light

I kind of think there needs to be a team to be dealing with the CDC crap and encouraging others to do the same as after all they are so responsible for many things.

This area seems to be missing in the project ENOUGH.

 

[V99]

Team one is any information that is misinformation. CDC, Websites, newspapers. All of that and more.

Team 5 get to knock the CDC studies into the gutter.

So Tania what is about the CDC that you want to change first?

 

[taniaaust1]

Team one is any information that is misinformation. CDC, Websites, newspapers. All of that and more.

Team 5 get to knock the CDC studies into the gutter.

So Tania what is about the CDC that you want to change first?

I think their response to your email to them the other day was crap... just a flob off. It didnt clarify things to me. They still havent replied back to my mail.

 

[taniaaust1]

I want it made clear on their site what they think about ME and what they mean by that.. the ME they talk about having neurologic and muscular signs, the kind which is often connected to outbreaks.

That to me dont sound anything like the what the English refers to as ME.
........

If i cant get clear stuff on their site.. i want to get the info from them.. by emails or whatever. That's a start. A project ENOUGH group to push for answers? All the other groups are about getting info out.. how about a group for getting info from.. and to push for CDC change.

Kind of what the CAA should be doing...

 

[V99]

We should make sure this information gets to the CFSAC, and in the UK the APPG on ME, etc. Not sure what the group, or groups, is that deals with these things in Aus is called? We need to expose their crap (for want of a better word) Also the media. We may be able to join up with group 2 to disseminate information on this issue. Let the world know about the manipulation.

We should build a list of email and letters, any contact, that has been made. When did you send the message, when did you receive the message, or are you still waiting. What country are you from, as this obviously effects the response you get. How is the disease viewed in that country. Put it all together.

 

[V99]

Here's something to consider. If the CDC controls disease, and ME occurs in outbreaks, why do they have nothing on their website for this disease, and how do people get diagnosed. I will definitely be sending another email to them.

 

[taniaaust1]

In Australia things are a bit different and doctors seem to be allowed to treat CFS/ME by whatever views they follow whether it be the Wessely school or the Canadian Consensus school.. neither seems to be frowned upon by the medical profession over here. All that was bought on by a huge backlash back in 2002.

With the government putting out info books and the CFS/ME organisations following suit and hence about the same time putting out their own booklet (recommending the CC CFS guidelines and giving an overview of them) to the same sources. Hence there are two different guidelines doctors can follow. (Well at least in the state of Australia Im in.. things may be even more confusing then that as each state in Australia had working independantly separate CFS associations!!! Only extremely recently things are starting to merge).

Many doctors here thou when they get a CFS patient.. head to the CDC site to get info. And that is why even here i view it as very important to get it better. Doctors here are following Canada, America (CDC) and England.

Canada's views are great.. Englands is probably too hard a case right now.. CDC thou.. maybe hope of change there with pressure.

 

[V99]

Do you have anything slightly like the CFSAC or APPG on ME? And what is the official name that is used? or is it like the two definitions circulating?

 

[awol]

Something to note:

The forum where this is being organized has both a public section and a members only section. If you visit, but are not a member, you will not be able to access the threads discussing this project. You must actually join to read.

 

[PANDORA]

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

Please, try to stay on topic!



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.

 

[V99]

Would you make a new thread for this Marly. It would help to know which project is which.

 

[taniaaust1]

Do you have anything slightly like the CFSAC or APPG on ME? And what is the official name that is used? or is it like the two definitions circulating?

Two definations circulate to be used (at least that is how it is in Sth Australia). Our local State government put out book on it.. and the CFS association put out another.

i dont know what our Australian health system is called.. i think its different in different states? I'll look that up as i know there was a dispute over CFS/ME back in 2002 (but i dont know if that just involved one Australian state or whether guidelines were trying to be introduced for them all.. it was all disputed thou and as far as i know, no compromise ever happened, hence doctors can diagnose by definitions and follow criteria they wish).
..........

What happened here would be like if your CAA went completely against the CDC and distributed their own CFS guidelines to all the doctors (based on the CC CFS ones). That's basically what happened here. Doctors just follow their CFS knowledge on whatever it is...

 

[Cort]

Two definations circulate to be used (at least that is how it is in Sth Australia). Our local State government put out book on it.. and the CFS association put out another.

i dont know what our Australian health system is called.. i think its different in different states? I'll look that up as i know there was a dispute over CFS/ME back in 2002 (but i dont know if that just involved one Australian state or whether guidelines were trying to be introduced for them all.. it was all disputed thou and as far as i know, no compromise ever happened, hence doctors can diagnose by definations and follow criteria they wish).
..........

What happened here would be like if your CAA went completely against the CDC and distributed their own CFS guidelines to all the doctors (based on the CC CFS ones). That's basically what happened here. Doctors just follow their CFS knowledge on whatever it is...

It would probably be too expensive to do that here and I wonder if Doctors would change their tune based on a guideline sent to then. (they apparently get sent stuff all the time). The CAA did create a CME course for doctors that was radically different from what was present on the CDC's site and tens of thousands of doctors and practitioners reportedly took it. I don't think the course is being given for credit anymore though. Finding ways to get the course back would be the easiest way to change doctors opinions in a meaningful manner.

There is also the CFS Manual prepared by the New Jersey CFS Association that is available to doctors in NJ, Mass and I think Florida. Getting state health organizations to endorse the manual would be another way to get it into doctors hands.

 

[taniaaust1]

It would probably be too expensive to do that here and I wonder if Doctors would change their tune based on a guideline sent to then. The CAA did create a CME course for doctors that was radically different from what was present on the CDC's site and tens of thousands of doctors and practitioners reportedly took it. I don't think the course is being given for credit anymore though. Finding ways to get the course back would be the easiest way to change doctors opinions in a meaningful manner.

Yes expensive.. but our support groups paid for it and i think Alison Hunter Memorial foundation (set up by one who had died) may of helped a lot.

....

ahh yeah .. i think i did that course and got accrediation for it ***big grins made out i was a medical practioner*** It was quite good.
...

Yes.. getting something like that back would be very helpful.

 

[taniaaust1]

(trying to find more about the confusing situation in Australia) All the American states work in the same way when it comes to this illness due to the CDC dont they?
.................

http://www.mecfs.org.au/australian-research-institutions by that the Australian state of Queensland funded a $533,000 grant for a world first CFS study (this was 2009) . To that was added a $90,000 National Grant from the Mason Foundation to further investigate immunological dysfunction in CFS patients.

Looking at the initial findings of this study (2010) "Immune and hemorheological changes in chronic fatigue patients" This study looks to be a very good one. (the diagnostic criteria they've used in choosing their CFS patients included post exertional malaise/fatigue etc). Good to see Australian state government is funding some great research.

The Mason Foundation is apparently going to fund 60% of $90 000 (the other 40% goes to Dementia research) every year towards CFS/ME research till cure for CFS/ME is found if i just read up on things correctly.
...............

Each Australian state would have to be looked at differently as far as what is being done and thought CFS/ME wise.
....

wow i just found some interesting CFS studies going on in Australia http://www.newcastle.edu.au/research/expertise/135166.html .. weird, some of the funding is from eg Queensland Dept of Tourism, Regional Development and Industry (seems the Queensland government is pulling money from all over the place to put into CFS/ME) and is going towards "Development of a new clinical diagnostic/bioassay for chronic fatigue syndrome".

Very interesting list of current studies going on in Australia on that link.

 

[V99]

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?

 

[Dr. Yes]

The CAA did create a CME course for doctors that was radically different from what was present on the CDC's site and tens of thousands of doctors and practitioners reportedly took it. I don't think the course is being given for credit anymore though. Finding ways to get the course back would be the easiest way to change doctors opinions in a meaningful manner.

Let's not go down that road again Cort! As you well know, but others newer to this forum may not, that CME course prompted a storm of protest on this site, owing mainly to its attributions of exercise avoidance behavior to many ME/CFS patients and to its potentially harmful recommendations on exercise. Many of us urged specific changes in the course; the response from Jennie Spotila was that the course is no longer being offered for credit (as indeed it is not), so essentially the argument was moot. However, the fact that certain key sections were considered "okay" by the CAA still deserves to be addressed in full, as it is part of the philosophical divide on the understanding of ME/CFS science, treatment and politics that is the reason for the divide - and the frequent internet smackdowns! - over the CAA.

I do not wish this thread (in its second attempt) to be hijacked, but I thought it necessary to respond to that one point. Rather than rehash the arguments here, I suggest that anyone who is interested check out the thread that focused on that topic (it should be able to find it either with this site search function or with Google).

And now back to our regular programming. :Retro wink: