….Elmer Fudd
Date, October 7, 2010….
Twenty two years since the Holmes committee expressed its response to a CDC visit to Incline Village by slapping the name “Chronic Fatigue Syndrome” on us, as a result of not being able to call it CEBV…and ME literate doctors walked out of the room.
Sixteen years since the Fukuda redefinition tried to erase the physical connection of the patients in the Holmes study group.
Fifteen years since Dr. Marc Loveless testified before Congress on CFS Awareness day that he had “treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!”
A year minus a day since the first paper linking XMRV with CFS was published in SCIENCE.
A year minus two weeks since grass roots advocates from all over the country started buzzing about the CAA’s apparent lack of enthusiasm and support of the WPI and all things XMRV. (See http://www.cfsuntied.com/archivedblog.html#crossroads )
Eleven months since our concerns about the CAA’s agenda were voiced in http://www.cfsuntied.com/archivedblog2#whassup , initiating a huge response and flood of concerns that were all forwarded to the CAA at THEIR request…and then never addressed with us.
Seven months since Dr. Vernon’s article, “Playing a Weak Hand Well”, and the CAA’s lack of response to our questions about their stance on DSM5 went largely unaddressed… http://www.cfsuntied.com/archivedblog4#caaxmrv
Five days before the kickoff of CFSAC 10/2010, which sports an agenda that looks like it belongs in the ‘90s…
Today. October 7, 2010, Kim McCleary issued a note “From The CEO’s Desk”. The president of the CFIDS Association of America said that she heard the announcer on National Public Radio state that “we use our inside voices to bring you the news”. She likened that to the “inside voice” of the CAA as they pursue their activities of stimulating research, reporting on the success of their grantees, and sharing information about upcoming events and important publications.
http://www.cfids.org/archives/2006-2010-cfidslink/october-2010.asp
I have been thinking for some time now that the CFIDS Association of America is not in the business of grass roots advocacy, nor is it in the business of political advocacy on the behalf of those who cannot speak for themselves. They are in the business of advocating for the types of research that they see fit to pursue under the guidance of their Science Director, Dr. Suzanne Vernon. If that’s the case, I sincerely hope that they define the pursuit of science-needs-as-perceived-by Vernon/McCleary as not just their Primary agenda, but as their complete agenda. An inside voice will suit that task well. It certainly has not suited their forays into political patient advocacy.
If they have been a science and research identity dabbling in grassroots advocacy and political patient advocacy, maybe that explains their complete misunderstanding of the appropriate faces to put on The Faces Of CFS. Perhaps it is naivite, ignorance of the history of the illness, that made the degree to which they worked hand-in-hand with the CDC for so many years seem appropriate to them. Possibly that explains Dr. Peter White’s inclusion in a physician education resource put out by the CAA. Maybe that’s why Cort Johnson surmised that the CAA didn’t know who Peter White was. http://www.forums.aboutmecfs.org/showthread.php?1911-The-CAA-Pamphlet-to-Educate-Doctors
Maybe that’s why Kim McCleary has been resistant to a restructuring of the CAA to meet the needs of the patients, as a true National Advocacy Organization must do.
If that’s the case, that the CAA is a Science and Research Organization, then by all means that’s what they should do. But I was confused on this issue, as they’ve more or less acted as if they were the CFS national advocacy organization for as long as I can remember. In which case, an “inside voice” hasn’t really done us much good over the last 25 years.
So I asked them.
“AIDS advocacy stopped using their inside voice when they realized it wasn’t working. It’s nice to be calm and reasonable. Unfortunately, we didn’t really have that luxury. The lack of shouting and demanding has cost many of us a quarter …of a century of living our lives. That is a heckuva lot of human resource wasted.
“If you are a science and research organization, then by all means do it, and do it well. Let us know that this is your primary agenda, and not advocacy.
“If you are an advocacy organization, then by all means advocate WELL. Listen to what the patients are saying. Take THEIR concerns and rally for them. Present CFS to the world as the crippler hijacked by government that it is. Don’t whitewash or play nice with those that try to keep us on the fringes of society”.
I was directed to this link on the CFIDS Association Website:
http://www.cfids.org/cfidslink/2009/030401.asp
I’m not sure the CAA understood my comment, although I think maybe they did. I definitely do not feel answered. I see by the information in the link they’ve provided that they need to reduce printing and postage costs. It looks like some of their donors have backed off. It seems that they want to focus on their grants, their grantees, and their science agenda. But I didn’t see anywhere in that link where it defined the organization as a Science and Research outfit, or as a Patient Advocacy organization.
I rather hoped they would be definitive and state hands down that they were a Science and Research organization and not THE national patient advocacy organization. That would explain a lot. It would mean we need to develop a national patient advocacy organization from the ground up.
Otherwise, for me, the communications breakdown has become complete if my disease’s national patient advocacy organization thinks an INSIDE VOICE is the way to go.
LOUDLY,
Khaly
CFS Untied
This is just another example of Kim McCleary’s total disrespect for the people who suffer from ME/CFS. The CFIDS Association keeps confusing ME/CFS advocacy with the old “Romper Room” children’s TV show. First they gave us the citrus explanation of retroviruses and now they’re touting using “inside voices.” These people obviously have no understanding of the group of sufferers for whom they say they are advocating.
ME/CFS sufferers are an amazingly intelligent and creative group of people. We must be just to have survived for the past 25 years. The CFIDS Assn. of America does not speak for me, and I am going to start telling everyone that.
They just keep adding insults to the injuries they have been doing us for the past 25 years.
Patricia Carter
http://www.mecfsforums.com
Khaly — Very well said. You’ve even given the CAA a possible route to recreating themselves usefully and the all the exact reasons they are, as stands for at least a decade and more, useless. You’ve been more than generous.
I think there are two reasons the CFS community hasn’t before now challenged the CAA as strongly as we might have: 1. We are all so damn sick, especially the neurocognitive and pain symptoms that it’s just been too hard to marshal our arguments and repeat them insistently and 2. We did not have an alternate focus to make marshaling those arguments worth the effort. It’s certainly true for me: A number of years ago I just gave up totally on them but didn’t see any reason to do anything about as I was simply trying to cope and endure like most of us. But now with the WPI and XMRV we have that focus. The WPI has shown what a active and focused research institute can do in just a short period of time. And if the add real treatments to that, well . . . hard to see any reason for the CAA to exist. But as I said, you’ve very generously given them an option, a reason to be; will they take?
Michael
No, they didn’t take it. From the Facebook conversation:
Khaly Castle:
Jenny, I have followed the links supplied to me both here, and that you have posted on my blog, but I still have one, simple question. Does the CAA still consider themselves an advocacy group?
Khaly Castle:
@ Robert, not trying to be confrontational. I would like an answer. If the CAA is no longer acting as a national advocacy group, an inside voice is appropriate. If they are not, then an inside voice is not appropriate, at least not anymore. It’s been decades.
Jennifer Spotila:
@Khaly, the answer is yes. The Board discusses issues related to advocacy all the time (and as recently as our last meeting). As can be seen from the history of the AIDS movement, there are many strategies and tactics for advocacy – and …a combination of strategies from a combination of groups is most effective. The Association is a strong advocate for CFS patients on many fronts and in many ways. But that does not mean we will use every possible tactic. And using or not using a particular tactic is not what determines whether a group is a national advocacy group.
If the Association was claiming that every advocate must do it the way we are doing it, I would be the first to disagree. There is no single “right” way to be an advocacy group, or to be an individual advocate. I’m seeing more widespread empowerment in the CFS community, and that is a good thing. More advocates, more groups, more voices, more diversity, more discussion – in my personal opinion this is a necessary step.
I agree with Robert Miller that infighting and finger-pointing will only hurt us as a community. There are plenty of entities out there that would like to divide and conquer, rather than dealing with CFS straight on. Unity doesn’t mean we all do the same thing in the same way. Unity means pursuing our common goal in cooperation with each other. United, we are mighty.
Khaly Castle:
@ Jenny
Thanks. The thing is, CAA has positioned themselves as an advocacy group, THE national advocacy group, for years. Many senior advocates have approached Kim over the years to discuss a restructure that would allow for the advocacy… needs of the patients to be met. Kim has been resistant to that. So although no one group can do everything. this one could have done a whole lot. It chose instead to use it’s inside voice.
I could accept this if the org has repositiioned itself as a science/research org. Not as an “advocacy” org.
Jennifer Spotila:
Khaly, I appreciate your honesty. Kim does not set the strategy of the org. The Board does that. You and I can agree to disagree on the strategy we chose. Patient advocacy is a broad category, and the Board is confident we chose the place i…n that category for our organization.
Well done, Khaly.
I’ve noticed over the last couple of years that the CAA is shifting more towards research and doing less advocacy — probably (hopefully?) because they’ve begun to realize that they are really shit at advocacy/PR whereas they’ve actually managed to fund some interesting research (e.g Snell/Stevens test-retest finding regarding metabolic dysfunction). I just think they can’t bring themselves to admit they aren’t really much of an advocacy group anymore even if we in the ME/CFS community already realized this awhile ago.
Would write more but my arms are too weak.
Yeah, this donor has pulled back from them. I’m now sending all my money to WPI, which is actually doing something useful for patients.
Send those e-mails, phone calls and faxes everyone. We are the advocates so make your voices heard. My money is also going to WPI.
Funny how the rabbit always got the better of Fudd. Good comparison.
I feel a Carol Burnett type Tarzan yell bubbling to the surface.
Thanks!
lol @ Heidi.
LOVE the Burnett Tarzan yell!
I used to be a big supporter of the CAA. No longer since the XMRV finding my money is going to the real research institution in the world WPI!!!
Exactly!
This isn’t about emotions, it’s about people loosing their lives.
This isn’t about differing opinions, it’s about being active in advocacy.
This isn’t about new groups, it’s about having a voice because of the WPI’s research.
CAA what have you done for ME/CFS today?
Thanks Khaly for another insightful blog…love the title. I too saw the “inside voice” comments and thought it ridiculous! I’m trying to remember my daily advocacy emails and faxes. Forgot my dog at the groomer today…got a call just b4 closing. Luckily I was able to scoot down there b4 they locked the door. I HATE brain fog! It’s a good thing I don’t have little kids any more…I’d be forgetting them somewhere too!
CFIDS has done a lot re Research into other areas besides XMRV, Important areas showing biomarkers, biological basis of ME/CFS, meaningful demonstrations of Post Exertional Fatigue/Malaise, other Infectious areas and Brain functioning and more.
The graph by Snell/Stevens showing comparison of ME/CFS and FMS vs Controls and MS is worth a Million words.
The Webinars have been excellent, presented by International experts, viewed by many all over the world and access to archived video and slides which can be printed, all for free is a phenomenal resource.
So they are basically a Research Science organization – and we do really need this.
Advocacy is crucial- everyone seems to be stumbling for now – we seem to be doing much more fo ourselves and need more co-ordination.
There are so many excellent groups on Facebook, withmany, many active, superb supporters, but too many it seems is becoming very decentralized.
We all support each other and understand each other, and that is fantastic.
Hopefully all our leaders and soldiers -with strong needs but weakened bodies-will have a more co-ordinated strong body to get to the next level of advocacy and real help which is despertely needed.
We need doctors to help us, diagnosis, and treatments to help us get better and get on with life.
We struggle so hard to get a few dollars at a time from people who have no money, birthday present donations, have made valiant efforts with time to get votes to raise money in contests -$20,000 for P.A.N.D.O.R.A. and NEI diseases, etc.
It’s time our governments, Canadian, American, U.K. Australian, N.Z., and all others involve in these patient advocacy groups) recognize this and pitch in and help save our lives too, and make them worth living(out of our beds, wheelchairs and homes)
Lots more I could say, but crashing nwo.
Why would ANYONE give one more penny to the CFIDS Association. They have never represented the patients!!
Dear Khaly,
Welcome to my world!
I was raised by a great salesman for a father and a great advocate for the unborn for a mother. So, when i collapsed in 1987 and could not swallow solid food for a couple of months, and could barely roll over in bed to pee into a bucket, i said, “I need to find out if other people around the world are suffering like i am”. I worked with Mr. Barry Sleight and his wife Michelle Freeman as lobbyists when the CAA’s “newsletter” was four pages, single spaced, xeroxed document. Marc Iverson was a smart and tough guy who was also quite ill. His father had money and was the part owner of the largest non-union steel company in the USA. My father was the father of seven with 5 in private high school or college. when tax rates topped out at 70%. so we had NO money, just the truth and some brains on our side. Marc’s first Editor, Ms. Karen Freese, asked me to write for their newsletter. I tried to convince Marc Iverson that we needed to get Washington on our side. He told me “We are going to concentrate on Research until we find the cause of this illness”. and i said, “I am afraid that there will me millions of causes of this crappy disease, that hit
predisposed people, usually during a highly stressful time in their lives. So, Marc, we will need a LOT bigger war chest than what you have”. He thought he was smarter than the rest of us, and he went his own way.
i was bed bound and broke, but said that we need advocacy. I finally convinced my father who had a 35 year track record in business, and 12 years in Washington, D.C.
as the chief lobbyist for the richest man in the world, to work for FREE to help us, if
the CAA would only pay secretarial costs. stamps. phone, stationary, and typing.
and Iverson said, “No, i want to hire this young gun for $10,000 to 20,000 A MONTH”
so, i started May 12th International ME/CFS AWARENESS day from my bed”. i said that we needed to LOBBY our governments around the world and show them all the tax losses they were experiencing by letting so many hard working people twist in the wind. I said that the actual losses in Tax revenue and increased medical expenses were MUCH greater than ANY amount they would or could spend on quality research! When the CDC estimated that there were 4,000 to 10,000 Americans sick with CEBV, which they STUPIDLY and cruelly changed to CFS, I said that there were at least 250,000 people homebound or bedbound, and 500,000 people who could only work or attend school part time, and more than 5,000,000 people who were one viral, chemical or physical insult away from complete and crushing disability”. I said back in 1989, that i estimated at least $9 billion in losses each year in the USA
Marc always wanted to push the science over the advocacy. I was pushing the opposite. He didn’t get what he wanted, so he stabbed me in the back and lied to my face about paying for 22,000 posters for the second May 12th to be put into his 1994 spring edition of the CFIDS chronicle. We wanted to link MCSS, FMS, GWS, ME and CFS for ONE day each year on Florence Nightingale’s Birthday on MAY 12th! and i asked for the poster to have the RESCIND, INC. return address so that i could try to recoup the $50,000 I spent to get the word out worldwide in 1994 for May 12th! Florence suffered from Brucellosis which closely resembles today’s lyme disease. she was a teacher and a nurse, and a crusader of sick soldiers in the Crimean War. She was also bedbound for 50 years. she couldn’t have loud noises or bright lights in her room, but she still started the first ever school of nursing and she inspired a Swiss Banker to Start the International RED Cross in her honor! I got her name from Dr. Bryon Hyde of Canada, one of the top M.E. researchers in the WORLD! Since my father was the lobbyist, i said we needed to LOBBY Congress and the Military, because “That is where the BIG MONEY IS!”. There were already more than 5,000 sick gulf war I veterans with symptoms that closely resembled M.E. and CFS and FMS. Now, there are more than 285,000 claims from sick veterans. that is 1 in 4 soldiers in the entire US contingent for Gulf War I. Dr. William Reeves, the point man at the CDC on CFS for 2 decades, was ALSO the point man for sick gulf war veterans. I think we should test sick veterans to see if they suffer from XMRV viruses. So, anyway, the CAA took our hard work, and our money and ran with May 12th and Lobby Day. i relapsed REALLY severely, after suffering $1200 phone bills per month,
and 8 hours per day, when i was too sick to sit up in bed.. between 1993 and 1994 trying to link groups around the world to help keep May 12th going. to keep the blue ribbon campaigns going. to keep the drive for high quality research paid for by our governments at least started..
and the CAA decided it was better to suck up to the CAA than fight them. and we lost 2 decades until the CAA saw what many of us saw as early as 1988! We called Reeves and Strauss crooks way back in 1988 for Strauss and 1992 for Reeves! it took more than 15 years before the CAA did the same! They once had 180,000 addresses on their mailing list. they are now down to a few thousand. You know who has mostly run the place into the ground. They did do SOME good things..the Webinars are good.
Dr. Chuck Lapp told me that they did training seminars for 1200 doctors…
but paying $150,000 a year plus expenses and paying $20,000 a month for a young lobbyist with a brief track record, when they could have had a 35 year PRO for free.
they made some really big mistakes. and all of us paid a high price for their mistakes!
May 12th now has more than 500 listings on Google as of this week from all over the world. I do think that the WPI has done more good with less money than our government has in the past 25 years! but, i fear that XMRV is not going to be the answer for all of us. I do think that middle aged white men got a scare last year when the Science article came out and they said, “Gee, Maybe I could get prostate cancer with XMRV in it!” and that got more than 325 articles in the worldwide Media when Dr. Alter and Dr. Shyh-Ching Lo from the NIH and FDA mostly backed up with Dr. Lombardi and Dr. Judy Mikovits had claimed in their Sept. 2009 SCIENCE article. Hopefully, we won’t all be positive for a nastly retrovirus like XMRV, but at least we will get some respect and some serious research money. Louis Pasteur said more than 100 years ago, “The antigten is nothing, the terrain is everything!” I think that is more true today than ever. more later. But Khaly, many people have said over the past 22 years what you wrote today. we just seem to be rediscovering the wheel!
Thanks Tom!
Yes, more true today than ever. I’ve been in your world for a while now. The more things change, the more they stay the same!
K
apologies for ignorance, but what is the CAA?
Hi Cheryl
CAA = CFIDS Association of America
Khaly, I hope you will publish my comment although I disagree with your post. Your question to the Association on Facebook was answered with the link you mention here, but also with a quote from Kim’s editorial, specifically: “There are many, many unmet needs that warrant being addressed through different approaches taken by individuals and organizations with varied skill sets and unique strengths.” The other link provided in that answer (http://www.cfids.org/about/default.asp) describes the Association’s mission and strategy to fulfill that mission: To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.
Everything the Association does is based on that strategy, and that strategy was set by the Board of Directors (half of us are patients). But I think it’s important to see that it’s not just research. Expanding public investment in research, in particular, is a big part of the strategy. And the Association is succeeding here, too. In the last year, the we succeeded in having the appropriations language quoted above included in the Appropriations bill. The Association was also successful in having CFS listed as an eligible condition for funding from a program at the Department of Defense, the first time EVER in CFS history! No one else worked on that – just the Association. I don’t mean to create the impression that the Association thinks this is enough, or is satisfied with these successes. Until federal funding for CFS research is proportional to the economic and personal toll of the illness, the Association will not be satisfied.
The Association does not use ACT UP like tactics. That’s not who we are. But that is not to say that we think there is no room for ACT UP like tactics. There is a need for many different tactics, so that in combination we can all be successful. In the early days of AIDS activism, ACT UP was not the only group and those were not the only tactics. I think it’s the combination of methods and voices, and diversity of groups, that will ultimately help all of us succeed in finding the answers to this disease.
Thank you for your reply, Jennifer. Yes, I expected we would disagree on this, and that’s okay. I understand and appreciate your commitment.
The CAA has been at this for 20 years, and without rehashing the entire history of the disease and the organization, there have been a lot of unnecessary political alliances and not nearly enough necessary loud and rallying awareness maneuvers.
The advocacy efforts of the CAA have been riddled with political faux pas, such as including Peter White’s information on CBT in an educational packet for doctors.
To not understand how this is politically and scientifically damaging to the people who suffer from this illness after many years in the game seems untenable.
Even Cort noted that he thought the CAA “made a mistake” in the way they handled the announcement of the October 2009 XMRV “Science” paper. Whether it pans out or not, it was a GOLDEN opportunity to push huge inroads into an awareness campaign.
Thanks for replying
Khaly
“To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.”
That’s not a strategy, it’s a mission statement.
I have seen no group using ACT UP tactics anywhere.
There is more the CAA can and should do, but you won’t.
CAA (CFIDS Association of America) lost all credibility when they threw us under the arthritis umbrella – I’ve had pain doctors want to CUT NERVES to relieve fibromyalgia, which is an ever-moving target. With idiots like this on the loose it’s not an umbrella – it’s a target. Thanks for saying so eloquently what we all know – they ain’t OUR advocate.
I don’t understand. I really don’t. How can anyone think that Kim McCleary has what it takes to do the job after her 20 years at the CAA? That’s a long time, right?
We still don’t even get respect for this awful disease. Patients and others in the CFS community have been alienated by the boatload. The lobbying has been incredibly ineffective. Other illnesses make progress even without Act Up type groups. I’ve seen all the excuses. They don’t hold water. I don’t even see any real sense of urgency from her.
If a nationwide search was done for a new CEO I’m confident exceptionally qualified and experienced people would be found that could do the job better. I think it’s irresponsible not to even look.
Precisely.
Thanks Roy
This will be my only comment on this as I can use my energy for better things to help patients.
Did people read the entire piece From the CEO’s Desk?
” It’s encouraging to see new groups starting and people getting involved – for the first time ever or the first time in a long time.”
All the “he did and she did” will NOT help US. There are ACTIONS happening now, because You as patients have been Acting. The CAA has not rested or taken a break from Doing (as I and many others have) in whatever capacity they have been able to. I agree they are Not ACT-UP advocates, but they are doing things that most here do not see or hear about. Such as getting the CFSAC charter renewed, who else here was working on that? We all have our Duty to act or engage if able, but we can not depend upon a “One Stop Shop” to do it all for Us.
NPR has a vast following and the announcer’s term of “We use our inside voices to bring you the news,” does not mean you will not get the news, it is of course your choice to turn to FOX and listen to anchors Yelling to get that same message, but it is the same…
All the Energy being spent on attacking any Group or Researcher doing anything to help Patiens could be better directed in my opinion.
If this type of infighting is seen by our health agencies, they already know what to do to prevent us from moving forward. The “Time for Action” campaign is getting emails from every group and site, that is what we must do to move forward. Just people and Patients working together to help Patients.
Why are people like Marly therefore getting into “he did and she did”?
People are free to speak as they wish too, and they should exercise this right. The CAA, PANDORA, anyone, should be able to handle criticism. Even harsh criticism considering their actions, or lack of. None of these groups have even dented the CDC’s stranglehold, or the ICD-10CM proposals. If groups are getting in the way of what others know needs to be done, they will tend to push through. Trying to stop others is unhelpful, divisive, rude and oppressive.
You have little idea of what people are doing without stating it. Correcting the behaviour of groups like PANDORA and CAA is only one piece of the puzzle. To carry on as normal is insanity, its time to change direction. If you don’t like how people want to do it, don’t join in. You don’t have to start talking about a fictitious place called unity. Humans have never had that and never will.
I haven’t and can’t follow all of the bureaucracy.
We need a lot., in many differetn ways.
We can appreciate what is done in positive ways, don’t need anyone being against us.
Last Webinar pointed out something I hadn’t considered before.
We need more research, different areas, and hope to get beneficial answers re causes and treatments.
-Government should fund a lot more Research
-not enough money for all research requests
-if considering various applications for grants, they are much more likely to give to the one which has strong preliminary data, than one with just an idea
-the CFIDS research, 3 topics preseted were very convincing of being worthwhile to continue working on and worthwhile of receiving govt funding
-work CFIDS research has done is extremely beneficial
Webinars and publications of this research is also extremely important in education and awareness of many aspects of ME/CFS
———————————————
WPI has done an amazing job in research as well.
so far it has been in one area ,one very big area, that we are aware of, re XMRV
We have all rallied behing them in amazing numbers ad advocacy
They do have excellent advocacy themselves -in people, money and contacts
Annette and Andrea are doing an amazing job- in public, in the press, and on support groups
-they have contacts and are broadcasting a lot too
The WPI center will help people a lot too
However, I’m still not sure what it will do for people who cannot afford the money or are too ill to travel there
They are not getting into people’s homes to help with daily life
Ideally, the government, CFSAC, some organiztion, whatever has to co-ordinate that everyone can do what they are best at, and be able to help us all
The WPI will get treatments for everyone because of their discoveries. You won’t need to go to them, in the future it will be on your doorstep.
CAA is very good at talking around “the elephant in the room” Myalgic Encephalomyelitis – the epidemic disease shut down by CFS. There’s not enough awareness that CAA, by failing to act up strongly when the situation demanded it, helped CDC cover-up the epidemics of M.E. with CFS and then got paid by CDC to brand that lie in the dreadful CFS awareness marketing campaign.
CFS stopped the research dead in its tracks, it was a terrible insult and the fact that there was a global epidemic in need of urgent public recognition demanded that somebody act boldly. CAA was the patient organisation and it failed to do the most important thing. CAA has been built on this coverup of their involvement in the CDC coverup of this epidemic, a crime against humanity.
Tom Hennessy spoke at the first international CFS meeting in 1989, demanding that the awful name be changed and the f word dropped, to outstanding applause from the doctors present, and appeared on the Larry King show – priceless media coverage! He advocated tirelessly for M.E. Thanks Tom. CAA failed to capitalise on this, their “inner voice” said there’s more money to be made by selling the CDC lie and so they did.
CAA failed to act when it could make a difference and sold out to the corrupt CDC, sold the patients a lie which has cost their lives for the past 25 years while paying themselves obscene salaries. I don’t know how they keep up this pretence in front of those who know the truth, while sucking in unaware believers with their sweet talk. They should be ashamed of what they have done to us.
Give your money to WPI, if people were paying attention they would know that WPI’s focus is on every aspect of M.E. and similar diseases, the current focus on retroviruses is understandably necessary because it has brought us the scientific attention that was taken away in 1988 – when it was known that a retrovirus was suspected. The cause was in sight, and CAA helped cover it up!
Bob there are actions happening now because WPI went for the long-suspected cause and found it, got the scientific and media interest that was lost because of the pathetic sounding CFS and even more pathetic definitions that fail to describe the disease M.E.
How long has it been CAA’s mission “To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment.”? Does anyone know what their mission used to be? Not that it amounted to much, but for the record we should know.
Their website is as useless as the CDC site. No mention of the disease prior to 1985, no mention of the epidemic history since 1934, no mention of the disease being named in 1956, no mention of M.E. classified as a neurological disease by WHO in 1969, no mention of the Ramsay Definition published in 1981. One big CFS lie by omission.
How an established neurological disease suddenly became an “unexplained syndrome” is at the heart of CAA’s involvement in the deception. Its sickening.
Here are some of the earlier mission statements I’ve found:
Mission Statement
(From http://www.prohealth.com/community/organizations/cfidsaa/index.cfm)
The mission of The CFIDS Association of America is to conquer CFIDS. The Association wages battle against CFIDS on five important fronts:
•Building recognition of CFIDS as a serious widespread medical disorder
•Securing a meaningful response to CFIDS from the federal government
•Stimulating high quality CFIDS research
•Improving health care providers’ abilities to detect, diagnose and manage CFIDS
•Providing information to persons with CFIDS and enabling the CFIDS community to speak with a collective voice
(From http://www.immunesupport.com/93fal006.htm)
The CFIDS Association of America, Inc.
PO Box 220398, Charlotte, NC 28222-0398, 800/44-CFIDS, FAX 704/365-9755
Mission Statement:
To conquer CFIDS and related disorders and to inform and empower those affected by these disorders until a cure is found
You can’t conquer a disease if you use derogatory or invented terms with definitions that don’t describe the disease and you can’t inform and empower patients with misinformation that excludes the epidemic history and formal classification of that disease. The CAA has never been grounded in the truth.
With regard to what Tom Hennessy had to say about Marc Iverson, the founder of CAA, Marc eventually realised his mistake and tried to change the organisation’s focus to be more outspoken but could not win over the implacable Kim who most of us know is only in it for the money. He resigned in 2001.
His resignation letter states that he favored a more aggressive approach and opposing CFS/CFIDS: “I favor and the CEO opposes immediately adopting a very aggressive stance opposing the discriminatory and incredibly damaging name CFS/CFIDS (chronic fatigue syndrome/chronic fatigue and immune dysfunction syndrome) and I believe efforts to change public attitudes are virtually hopeless and wasted with the present name”
CAA would not listen to the founder of the association, and have persisted with the failed strategies that Marc Iverson outlined in his resignation letter. CAA is on their own mission to keep themselves in a job, not to do what should have been done about the M.E. epidemics and the patients suffering.
http://www.co-cure.org/Iverson.htm
I meant to say that by persisting with the failed strategies they were keeping themselves in a job by keeping the patients sick and ill-informed of the true nature of the disease they were suffering from. True advocacy would have meant telling the truth right from the beginning of the CFS coverup and demanding recognition of M.E. and a proper neurological definition so that patients could be properly diagnosed and research could select patients with the disease, not mixed groups of patients with the CFS label. “Efforts to change public attitudes are virtually hopeless and wasted with the present name” and this has proven to be true. They should have listened to Tom.