Discussion in 'General ME/CFS News' started by Firestormm, May 30, 2014.
And with this new name will they still recycle the same boring information they've been using for the past 20+ years?
I don't know one thing they have done to help. They started some tissue bank last year didn't they? That sure is helping us.
Being a UK citizen, I don't know much about them, but they've funded some exceptionally interesting pilot studies recently.
From what I know they have done exactly zero that has made any difference in care, treatment, or policies.
"Since our organization was founded and named in 1987, we have been the leading organization focused on this illness. Over the years, we’re proud of our remarkable advances regarding this controversial and misunderstood disease.
Under the 22-year leadership of Kim McCleary, the organization’s first CEO, the Association played an integral part in developing a policy ruling for the Social Security Administration that recognized CFS as a disabling condition.
We are the leading private funder of ME/CFS research, directly funding $5.5 million in ground breaking research which has been leveraged into more than $12 million in additional ME/CFS research.
The organization fought to create and continues to advocate to sustain a dedicated federal advisory committee on ME/CFS research and education (CFSAC).
We helped expose the misappropriation of $12.9 million in CDC spending, restoring these funds to ME/CFS research.
We led the first-ever public awareness campaign for ME/CFS, led lobbying events, organized Congressional briefings and regularly deliver testimony at numerous federal hearings and meetings.
Four years ago, guided by a desire to move into a new era of scientific progress on ME/CFS, the Association made a strategic decision to heighten its focus on research. Our thinking was simple – the best way to use our precious dollars is toward solving this despicable illness."
If they got 12.9 Million restored, how come there numbers do not add up to more than that?:
"We are the leading private funder of ME/CFS research, directly funding $5.5 million in ground breaking research which has been leveraged into more than $12 million in additional ME/CFS research."
What other advances are they talking about?
Exactly. Name one.
I dont at all like that name change. Its another org just dumping ME and CFS together which only adds to the already confusion out there. They should of stuck to CFIDS.
Im glad we arent seeing a long list of all this org has done wrong over the years.. various things done and said over the years.
Take the most recent example of their long list of negative things they've done for us. They stopped advocating for our illness years back citing they were going to focus on research only but then stepped in and publically supported IOM rather then supporting all the experts in their letter calling for the canadian definition which would of been a big step forward.
Yeah thanks for what you've done. You've helped keep us all in the ME nightmare situation. Maybe this name change is just an attempt at leaving their negative past behind, the past of a not well liked much org.
Isn't it a bit ironic that a group representing a population who sometimes have cognitive problems because of the havoc this DD causes, change their name? As it is, I can't remember all the organizations nor what they represent.
Though I have to admit I've always kind of liked them.
The 12.9 million was the money the CDC misappropriated. That money was taken from the yearly allotted CFS budget over a period of several years and diverted to other (non CFS) CDC programs.
After the CDC was caught by the CIFDS Association although it was William Reeves who came to them acting as a whistle blower. Since IMO he knew it was only a matter of time before the CIFDS Association and others went to Congress on their own and did it to save his own rear end.
It is not the same 12 million the CFIDS Association raised and refer too in the press release.
the 12.9 million never had anything to do with the CIFDS Association and their direct funding. It was intended for the CDC's research and public awareness programs. The CDC was made to refund the money which if memory serves me right was spent on TV and radio public awareness adds.
I think it's good that they're going with "ME/CFS" instead of "CFIDS". The "CFS" is an unfortunate but necessary evil in the USA, where ME doesn't officially exist, and at least it's listed 2nd instead of 1st.
It also gives certain organizations, such as the CDC, NIH, or IOM, one less excuse to give us some new shitastic name under the guise of there being oh-so-many different names already. Uniting under one name helps a lot, even if we plan to go for a better one as quickly as possible.
Thanks for the links to those YouTubes.
Interesting that it looks like CFS/ME (not ME/CFS) was being used in 2007?
I used to get their newsletter years ago. Even though they used the term CFIDS in the title, throughout the magazine they would refer to it as Chronic Fatigue, sometimes not even adding syndrome.
And they act like the organization began with them. They totally left out who founded it (I've forgotten his name; a patient) and that they turned the organization around from what he was doing and turned it into the CDC's Trojan Horse that it is today, so off the mark that the original founder felt he had to leave.
To call Bill Reeves a "whistleblower" is to buy into the deception. After CDC moved the first criminal who diverted the funds (not all of it was ever accounted for let alone refunded to CFS "research") to another government post (he should have gone to jail and had to pay back what was not accounted for, lost his job and his pension but the good 'ol boys took care of their own), Reeves claimed whistleblower status so that no one could touch him no matter what horrible route he took CFS "research" on.
Let's not forget their "scientific advisor" is Suzanne Vernon, Bill Reeves' sidekick for many years. Her name, and that of Beth Unger, are on many of the Reeves pseudo-research papers. Since Kim McLeary had the "leadership" position for 22 YEARS and accomplished nothing significant AT ALL, what's to brag about? It's all smoke and mirrors with them, whatever name they use. It seems to be a trend with those who don't really want to solve the problem. Don't we have around 3-4 organizations now concentrating money and attention on changing the name -- again? In fact, the name Myalgic Encephalomyelitis was just fine back when the CDC plucked Chronic Fatigue Syndrome out of thin air and then spent $5 MILLION "branding" the intentionally misleading name into the minds of the US and the whole world. Changing names is just part of the shell game, intending to look like they are doing something while they actually are only jogging in place.
I think they should rename themselves the Damage Control Group instead.
For the record I don't buy into any of the CDC deception. That's why I said that he knew it was only a matter of time before the CFIDS Association and other went to congess ( because the buget numbers didn't add up) Reeves came to them. And that he did it to save his own but.
You can also try a Google Site Search
Separate names with a comma.