"We Are Not Alone" on CFIDS Assn web site (by Suzanne D. Vernon)

Yes I know that for sure. Did I say any different?

I didn't say things were great over here, did I? I thought I was pretty careful not to say that. If you read my post again I think you'll see that.

 

So what are you doing Justin to inform the powers that be that we need more funding?

I would note that CAA is one of the few groups that does advocate for us at the federal level; they present CFS as a very disabling condition that costs the US economy alot of money and affects alot of people. They ask for more money. They are trying...they are virtually the only ones trying. Through their advocacy system they send out 1,000's of emails to legislators asking for more money, asking to keep the CFSAC going, asking for Centers of Excellence. They employ a lobbying firm in Washington to assist them with that.

Their collaboration with the CDC on the media campaign enabled them to send poignant messages about CFS over the airways and in ads in magazines and elsewhere that millions of people saw. The FACES of CFS traveled around the country to high shopping malls and heavily trafficked areas - all the while stating how serious CFS is. Sure they may have done things you have disagreed with but the fact is, while you were complaining tirelessly about them, they got millions of dollars from the federal government and created the first CDC funded media campaign for a disease ever.

What has it gotten us? It has gotten us things. The attitude towards CFS isn't great here but its a heck of alot better than it used to be. Take a look around at the big media sites; the Mayo clinic and sites like that. You won't like everything you see there but you will see CFS treated as a legitimate albeit mysterious disorder. Its not treated as a psychological disease there or in the medical textbooks. It wasn't like that ten or even five years. Who is responsible for that? It sure wasn't you and it sure wasn't me. If anyone had a hand to play in that it was the CAA. (There are no other hands - do you get it? There's nobody else.)

Constantly running down one of the few organizations that is actually working for us is counterproductive in my opinion.

 

"Hey, I've got a worry...What if that Thing can read our minds?​

Then hes going to be real mad when he gets to me!​

-The Thing From Another World (1951)​

 

Thanks, that is great to hear, good on him. I wish him luck. He should obviously then wait for a positive study and in the meantime refrain from telling people what they should think and especially how they should feel about something.

The fact that CFS/ME or autism etc are controversial has nothing to do with patients' views or actions!!

It is only due to the decade long oppression and refusal to look the reality in the eyes.

 

sarcasm

So what are you doing Justin to inform the powers that be that we need more funding?

cort: maybe it's just me, but recently...like the past week or so, the tone of your posts have been very harsh and sarcastic...when i read them i feel like you are responding to people with a slap in the face first and then your answer. i don't know if that is your intent...but i just thought i would reflect that back to you.

i know the tone of many posts have been tense and harsh lately, but if you as the leader of this board slip into that same voice it is very dangerous. it reminds me of a toddler who starts to bite and so the parents start to bite him back to teach him a lesson, to get him to stop biting....a very freaky strategy if you ask me : )

please take this feedback in the the spirit it is given.....to save the board from the harsh tone and anger that has been developing on here lately.

a day or so ago, i noticed posts from someone new, judderwocky...they are like a breath of fresh air here....insightful, knowledgable and kindly in tone. i hope we can all get back to that.

warmest regards

 

Thank you Shebacat, I felt the tone was off and that it needed to be told, I wrote a reply that I removed in fear of making it worse or to be told "if you don't like it, you may leave" which seems to be going left and right these days.

 

Yes, Cort, I understand that there were some positives from the CDC and CAA collaboration. I was focusing on the funding situation, and in that context I totally stand by my words. We are the same or worse in inflation adjusted terms as we were for the pitiful amount of NIH funding we were getting a couple of decades ago (although, to my knowledge, none of it is being misappropriated anymore so we are actually getting more funding in actual non-misappropriated dollars).

You have challenged me before about what I have done for advocacy before. As I responded previously, to my great frustration I have not been able to do much, just writing letters, emails and posts when I can scratch together some energy. I don't think it's fair to try to compare my output to that of an organization staffed by healthy people whose management is, imo, clearly overpaid.

You have PMd me that I need to tone it down or 'enjoy' other forums. I am getting frustrated with fighting with you and so I will probably be posting less and going over to another forum that is not moderated so strongly.

I have reviewed about 200 medical textbooks and written reviews about most of them on Amazon in reference to their ME content. I found two out of about 200 that were substantially accurate. The med textbooks are in the dark ages and basically regurgitate the Wessely et al. reviews from BMJ and other journals.

 

Thanks for your work Justin- I hope to see you around. Somehow, somewhere. Your voice is important.

 

Kati, Thanks!

 

You're accurate. Its become more and more difficult for me personally to maintain a moderate tone. I don't if its just because its a 100 degrees in my apartment or because I'm just tired of the negativity. I really believe that the Forums need to take a more moderate tone...that there's too much bickering...too much aggression and really just too much negativity going on. Generally what I react negatively too are really negative posts.

I know my reactions just fuel the flame and that doesn't work....but somehow I feel we've got to turn these Forums over to people who can post moderately, and who want to post in a constructive manner - basically people who want to work things out - rather than be right about X, Y or Z or want to affix blame to whomever.

I do speak to people who've either left the Forums or don't post as regularly because they're simply afraid to say anything that might blow up in their face. It disturbs me that the Phoenix Rising Forums are becoming known as a kind of no holds bared, aggressive, inflammatory Forums. That's never been my way....

I came across a view posts of people slamming some DHHS official for saying that the link between CFS and XMRV had not been fully established. They treated him as if he was part of some conspiracy - but what he said was true in his eyes..until we have a positive validation study no researcher in the world could say otherwise - they would be out of their job. I realize thats a kind of technical point but honestly that really grated for me - nobodies ever heard of this person - he has no connection to CFS at all - and hes already gotten wrapped up in some conspiracy. It was a little thing but that got to me....

I do realize that the uncertainty about XMRV's fate in the research world has increased tension levels and things will calm down at least a bit as the studies come out.