Discussion in 'Action Alerts and Advocacy' started by Orla, May 7, 2010.
Yes, that's a good guideline, along with seeking the truth!
Old fashioned takcety boot, at that, hehe
I had famil move to East and West coast USA and Australia
Just to point out (for clarification), that Miller was appointed Afme medical advisor last May, but the comments I posted yesterday were recent, about the PACE Trial. I just thought this thread was a good place to put it as it can be useful to have the evidence (so to speak) in one place. In this case it shows a continuity of attitude on his part.
Thanks for posting, Orla... It was very helpful.
Yes- thank you for these Orla and for highlighting the connection. That's been very useful.
I thought the patient organizations where meant to be by the patients for the patients... I have yet to meet a patient who thinks GET and CBT is great.
Who runs AfME? Can anyone explain to me why the heck in the world anyone would want that as a spokesperson?
I think big patient organisations like to have medical professionals as advisers to make them look professional. In the UK, there may be few doctors that interested. But I don't know how hard they looked and I agree with the general sentiment of what you say.
Dr. Miller was one of the co-signatories of skeptical/questioning Rituximab comment
Dr. Miller was one of the co-signatories of skeptical/questioning Rituximab comment - see:
Discussion thread: http://forums.phoenixrising.me/show...S-More-research-needed-quot-letter-in-PlosOne
White, Miller & Crawley respond to request for UK to adopt Canadian criteria
White, Miller & Crawley respond to request for UK to adopt Canadian criteria:
Thread at: http://forums.phoenixrising.me/show...-to-request-for-UK-to-adopt-Canadian-criteria
Unbelievable. The only real reason to put in an effort, as a patient or care taker in a non profit, is pushing for positive change. And there they are, having built an organization, and it's being used to promote ME as a psychological disorder (or at least a disorder where psychologial intervention is the right thing). Who would put in hours and weeks of their spare time, for free, to support such an organization? Is the leader feeling they are mentally ill, or being care taker of a mentally ill person, and thereby seeing ME as a mental illness? If it's not a "one person organization", than what does the dozens of other active people in the organization think? One of the very most important reasons to do non profit work, is to me, to do exactly the opposite of what's being done over there. Is there's something I've missed? Are the leaders really care takers or patients?
It's a patient organisation with lots of paid staff who aren't patients or carers - not always the best combination in the ME world I think given decisions have to be taken carefully.
I read here that their leader had ME for two decades. So, why the heck in the world doesn't she (or the entire board) protest when they've got people working against the whole cause, of which they should be working for? Does anyone know her?
If there is a more or less consensus that GET and CBT are things money should be spent on, than I really think patients should join the organization as members with the sole purpose of electing a new board. I don't know how they do it, but it's normal that people are appointed to a couple of years on the board, and the paying members elect whom sits there once every couple of years (only that just a small fraction of the members actually use their voting power).
I found their info on GET and CBT. Although it's more moderate than what their spokesperson Miller writes, they seem really supportive of both GET and CBT.
Doctors who have worked in the military and have the appropriate specialty training can sometimes have unconventional careers.
Action for ME is run by a group of trustees. The names are obtainable from Companies House as AFME is a company. This is a UK charities "thing".
Although ordinary patients can join as "members" they are in fact subscribers and have no voting rights.
Historically when happened is that Action for ME evolved from a group called the ME Action Campaign. This was a solid, campaigning group that was anti psycho-babble. The group sadly was taken over by people who believed that ME was fatigue and it went horribly downhill.
The trustees run it as a closed shop. Up to a couple of years ago the "subscribers" were not invited to the AGM's. This has changed though and last year that held an AGM that people could go to.
Sadly, "subscibers" have no voting rights and cannot vote the current trustees out or have any influence over policy. The trustees (in my experience) don't usually answer letters or anything like that.
There is no mechanism to keeping them in check (i.e. stopping them using "ME" when they don't represent patients with ME). We have tried the Charities Commission but there is nothing to stop a charity doing this.
When the MEA (ME association) faced the same problem with Trustees being elected who supported psychobabble we members were able to vote them out at the AGM. AFME doesn't allow this. It's a disgrace that they can get away with it.
which is why I reject IVI's outlook, as our system is viciously, evilly, inherently CORRUPT and it's evenbeen extending to charties for some time.
nobody note how charities are now so vociferous, lead by well paid...hounds...barking braying after more revenue, hm? it is NOT for the good cause, it's "the ends justify the means and my expesnive meal ticket!", all self serving bullshit.
it's another lucrative cash cow for the corrupt professional classes/system.
UK's been getting carved up for sale for last 30 odd years, not much left.
To Hell with them all.
(not saying all charities are rotten, but take a good long look at them...especially in regard to their leadership and outlook on fundraising..."Money changers in the temple")
and, oh yeah, the psych warfare psych spooks spewed lies for decades that bioweapons weren't that bad, etc etc, at the behest of their masters (during the Cold War).
I fact, they are orders of magnitude more lethal and troublesome than nukes.
This sounds a lot like CAA here in the US. They don't let members vote, the board self perpetuates and ends up getting controlled by Kim McCleary so she can support CDC and collect $178K per year. It's all disgusting.
You can also try a Google Site Search
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