Project ENOUGH!!!

[awol]

Hello all,

If you are new here you will not recognize my username because I rarely come here lately, however I just wanted to let you know that we have just started a new project over on the other forum aimed at coordinating efforts to ensure that good science gets funded, bad science gets refuted, public awareness grows, and alliances are built with organizations for people with related illnesses or issues.

I am not interested in hopping around between forums so I hope to be able to let the project evolve over there, but all help is welcome. I hope you will join us over there in our discussions to build a big, strong, dynamic and coherent patient advocacy effort.

 

[awol]

I should add that, as we are all sick people, we are really hoping to have quite a few people to distribute the work in small, ME/CFS sized bits

 

[jspotila]

I am not interested in hopping around between forums so I hope to be able to let the project evolve over there, but all help is welcome. I hope you will join us over there in our discussions to build a big, strong, dynamic and coherent patient advocacy effort.

Awol, I thought that forum was invitation only. Am I incorrect?

 

[shannah]

Hello all,

... I just wanted to let you know that we have just started a new project over on the other forum aimed at coordinating efforts to ensure that good science gets funded, bad science gets refuted, public awareness grows, and alliances are built with organizations for people with related illnesses or issues.

... but all help is welcome. I hope you will join us over there in our discussions to build a big, strong, dynamic and coherent patient advocacy effort.

AMEN!!! ENOUGH IS ENOUGH!!!

I'm sick and tired of the smoke and mirrors!!! All intended to cloud and deter the real issues moving forward. I'll be looking for this 'other forum' but a link or a hint would be nice.

 

[V99]

It's an excellent idea. We have to keep demanding solid research, we have to highlight faulty, misleading research. Keep voicing are displeasure, and demand things change. There are thousands of us. If we all keep doing what we can, when we can, we will win this battle.

 

[shannah]

It's an excellent idea. We have to keep demanding solid research, we have to highlight faulty, misleading research. Keep voicing are displeasure, and demand things change. There are thousands of us. If we all keep doing what we can, when we can, we will win this battle.

The news of Zamboni's work with MS came out several weeks after WPI's announcement in October I think and it seems to be gathering much more attention and openess for research than XMRV. Could it be that the MS community is better organized and much more vocal than us?

 

[V99]

I think MS has more supporters who are not ill, and quiet a few more million in the bank. The MS society in the UK raised about 30 million last year, and ME charities 400,000. Also, ME patients find it difficult to overexert themselves. Really I think the big reason, is the psyche lobby, who have been attempting to shut this research down. Government's don't want it recognised, so they have used the poor negative XMRV studies as an excuse.

 

[awol]

Awol, I thought that forum was invitation only. Am I incorrect?

The forum is no longer invitation only, however I should warn that a majority of members there are very very unhappy with the CDC, and what has been perceived as the CAA enabling the CDC. We do hope to keep the atmosphere over there friendly. Some subjects could, conceivably cause high levels of unwelcome tension.

 

[jspotila]

The forum is no longer invitation only, however I should warn that a majority of members there are very very unhappy with the CDC, and what has been perceived as the CAA enabling the CDC. We do hope to keep the atmosphere over there friendly. Some subjects could, conceivably cause high levels of unwelcome tension.

Thank you for answering my question, Awol. I'm happy to hear the forum is no longer invitation-only. However, what you describe does not sound to me like "all help is welcome." The way I read your statement, the majority of members on the other forum are of the opinion that the CAA has somehow enabled CDC's misguided CFS research program. You also say "some subjects" may cause high levels of "unwelcome tension," without specifying what subjects those might be. I don't want to misinterpret your statement, but it sounds a little closer to a warning than a welcome.

 

[awol]

all genuine help is welcome. Some types of arguments are not.

 

[jspotila]

all genuine help is welcome. Some types of arguments are not.

Thank you, Awol. That sounds fair enough.

 

[flex]

Hi jspotila,

I am glad you have acknowledged this

"(many believe).....that the CAA has somehow enabled CDC's misguided CFS research program." Is this the official belief of the CAA and if so why have they not spoken out publicly against the CDCs misguided policy. Surely for $180, 000 a year that is Kim Mclearys job.

If they have not spoken out about the CDCs misguided policy surely by definition this makes them enablers.

 

[Dx Revision Watch]

I should add that, as we are all sick people, we are really hoping to have quite a few people to distribute the work in small, ME/CFS sized bits

A general point:

I would like to see acknowledgement on forums that not all members, active or currently inactive are "sick people".

A proportion of members will be partners, relatives and carers of adults, young people and children who are too unwell to participate in forum discussions or take part in campaigning and who rely on advocates to represent their interests.

Suzy

 

[V99]

Absolutely. If anything we need you more, because you can do more. To all those fighting for loved ones, thank you.

Enough is enough!!!

 

[Dx Revision Watch]

That was a general point, V99.

This is not a project I am volunteering for, myself, and I am no longer involved with the "other forum".

Suzy

 

[Hope123]

Aside from the practical aspect that I am simply too sick to engage in another forum, my concern has been that having a group formed to be "against" something (whether the CDC, CAA, etc.) is not going to be as productive as a forum that is "for" something. Now, I'm being unfair here because I have not looked at the other forum but I guess my style is more aimed towards inclusion rather than exclusion. I do know however that social movements usually take a variety of tactics from conservative to radical to work.

 

[aruschima]

I tell you how it works over at ME/CFS Forums

I am relatively new to ME/CFS Forums,
but this is how it works over there:

We disagree on EVERYTHING and tear each other in to pieces,
until we are ALL completely confused.
Than "The big boss" comes in, that's AWOL
she calls in the super high IQ army.
They sort EVERYTHING out and have it under control.
(Exempt, the super IQ top boss seems to have always problems with his crappy computer and
another seems to hit the bold option allllllways in the wrong moment)
Anyway, than , well than we have a big group hug
and EVERYTHING IS FIIIIIINEEE !

Real good team work!

 

[flex]

I had difficulty understanding the above so I put it into google translate and this is what came out:

I have been on ME/CFS Forums for a number of months ,
it is wonderfully scientific over there:

We agree on the truth over xmrv but the CDC tears it in to pieces,
until the press are completely hoodwinked.
Awol has started a truth and scientific project
she calls in the super high IQ army.
They sort EVERYTHING out and have it under control.
(Except , the super IQ top bosses at the CDC always seems to have problems with their crappy studies and
they hit the BS option allllllways in the most opportunistic moment like with holding the Alter paper)
The truth is represented by those in the know but this upsets the CDC.
Anyway, we have a big group of liars on fake advocacy groups
and EVERYTHING IS Fiddled again !

Real good team work!

 

[jspotila]

Hi jspotila,

I am glad you have acknowledged this

"(many believe).....that the CAA has somehow enabled CDC's misguided CFS research program." Is this the official belief of the CAA and if so why have they not spoken out publicly against the CDCs misguided policy. Surely for $180, 000 a year that is Kim Mclearys job.

If they have not spoken out about the CDCs misguided policy surely by definition this makes them enablers.

Just to be crystal clear, I said that some people believe this about the CAA. I did not say it was true or correct. The CAA works to expose, protest and correct CDC's misguided CFS research program. Please do not take my statement out of context or twist my meaning.

 

[flex]

jspotila,

I did not say that you said or believed the CAA enabled the CDC. It is clear I said that many believe the CAA enables the CDC.

"The CAA works to expose, protest and correct CDC's misguided CFS research program".

These are your exact words from your last post so I cant see how you can say I have taken you out of context. It appears that you are confirming that the CDC has a misguided CFS program. Please can you give us some major bullet points on how the CDC program is misguided and ask Suzanne Vernon and Kim Mclearly to put their names to the statement and pass it onto the press.