Hillary's newest blog post is something everyone needs to read!

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Luciebee

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If you haven't already seen it, Hillary Johnson's latest post is more than worthwhile. It has to do with some 'anonymous' posts that were on the CDCchat.com site that are, IMHO, quite likely to have come from the inner workings of the CDC. You read them and be the judge. She also has a link to ALL the messages that were posted in that particular thread, which someone has done a marvelous job of transcribing.

I did manage to get some page captures out of there, but the thread is now locked on that forum.

Here's the link to Hillary's forum:

http://www.oslersweb.com/blog.htm?post=643435
 

zoe.a.m.

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I agree that the messages do not sound like the average CFS/ME patient's. However, I wonder if such a board could exist at the CDC.

Either way, this only pushes me further in the direction that I've been thinking since the CFSAC meeting which is: How do we make this legal? I am not, and I doubt many people are, litigous or excited by the prospect of being involved with a class action suit or congressional investigation. Who has the energy?! At the same time, it seems increasingly clear that something has truly been amiss in a way that will result in premature death and has resulted in hardship on a massive scale. Even if the WPI and others can figure this out themselves, it doesn't abdicate the CDC of their lack of response or research, botched research, or downright criminal action. I know that we care about getting well and preventing others from having the same suffering, but at what point do we have the obligation to take this elsewhere?

I hope this doesn't strike anyone as an attempt to stir the pot in a way that won't be helpful to CFS/ME patients or that would undermine CFSAC's work and other groups. I don't wish for that to happen. I am genuinely curious about this. I doubt that things go to courts so often because people want to embarrass or admonish someone or a group, but because there is so often no other way to take a serious injustice public.

What type of proof is needed to instigate a real investigation?
 
A

Aftermath

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Hearings/Lawsuit

Congressional hearings can be held on any matter--all of it takes is enough to get some elected officials interested.

A successful class action lawsuits against the CDC is very unlikely. The federal government is next to impossible to sue, because under the long-established legal principle of sovereign immunity, the government itself has to consent to being sued. This is next to impossible.

A lawsuit would have a better chance if we all went there on a rainy day and slipped in the lobby.
 

zoe.a.m.

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ha!

A lawsuit would have a better chance if we all went there on a rainy day and slipped in the lobby.
Hilarious, but true! It's something to keep on the back burner if nothing else pans out I guess!

Well, since I don't think taking the government to court is the best thing for anyone, it's okay by me. I know of sovereign immunity but I guess I've seen too many episodes of Boston Legal!

I can't even imagine what elected officials would be interested in such a lukewarm topic, but thank you for answering my questions and adding a little humor into the equation!
 
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The comments are still there, just disassociated with the root article so you can't access them without a direct link.

http://www.cdcchatter.net/index.php?name=Comments&sid=769&pid=0&mode=nested&order=0&thold=1

These are most certainly comments from CDC employees. Here are a few samples...

I have watched the Reeves shop for about ten years now and shook my head at the antics that he and his people have engaged in. None of it was truly directed at CFS research, but instead, was useful to all chronic/acute diseases. Yet that money for CFS was wasted. The advocates are screaming that CDC knew of this virus back in the 90's and that millions are sick, disabled and dead from cancers, heart disease and suicide. This isn't a good situation and I have waited to see how long Reeves people could get away with this stuff and with the Emory Mind=Body Program. Reeves is cooked since they all believe that Reeves is getting paid from his contractors. But the advocates also think that money isn't really at work here - more a conspiracy of WHY Reeves and his people refused to work on real research and kept CFS in the psych arena. Boy is the proverbial STUFF going to hit the fan soon. I just don't understand why Reeves played this type of game for so long.
This is the link to the paper that Dr. Elaine DeFreitas wrote up in early 1990 and released in 1991 to the public. This document and her research were killed off by the CDC and NIH. Dr. DeFreitas' reputation and career were damaged and other's took note and did not study this virus any further for fear that their reputation and career would also be damaged by the CDC. The CDC MUST be investigated top to bottom and not just for CFIDS research and possilbe improper federal funding (again, as they did in 1999 and got caught and brought before Congress).
Oh, and it really does NOT matter if the CDC can or can't replicate since the CDC/CFS has been so discredited by a one year old institute that doesn't even have a building up yet. The CDC/CFS group's opinion is valueless now. Sorry, that's the truth. Read the blogs and posts on the Internet. No one cares what the CDC says about CFIDS. The anger out there at Reeves is stupifying. Sad really.
Reeves, the coward, did NOT show up but Mike Miller did. The screaming about Reeves and the CDC was loud and clear.
Apparently, the new CANCER-CFIDS virus will be replicared in the CDC Retrovirus lab. The virus has already been replicated in a number of private labs, so the CDC Retrovirus lab better play it straight. This has become a very serious situation and the public is mad, not just the CFS people but public at the CDC for various reasons.
In fact, this "virus" has been known at the CDC since about 1991 and yet the CFS shop did nothing with the data or research. So yes, we do know the advocates are going to be enraged with the CDC and with Bill Reeves in particular with this study and the data now just coming out that this virus was first discovered in 1991. Heads will fall after this study reaches more of the CFS advocates. Reeves and his people better get their resumes together and get out of Dodge quick! THEY, the advocates, are calling for Reeves head and Congress is involved, my understanding from a few folks up there. Not good. We don't need Congress on our backs again and this is going to do it.

Reeves: you really mucked it up for the rest of us. I need my job.
We can't replicate the XMRV study because our samples aren't from patients meeting the 1994 Fukada definition or the 2003 Canadian consensus definition.
Let's be honest here: The CDC/CFS groups does NOT want to replicate this viral study because it only makes Reeves, et al look even more pathetic. Get real. The data is out there and there is NO excuse for Reeves and his people anymore. NONE. A number of other research orgs are replicating and the WPI has the largest tissue bank going back to the Incline Village cluster. The above statement on XMRV just does not cut the mustard and the researchers and public know it. Knock it off. CDC/CFS/Reeves got caught big time and Dan Peterson will read the riot act in DC on the 29th of Oct. A good time will be had by all - except the CDC.
Whining? Does this reflect the real attitude at CDC toward sick people? If so, this explains the complete lack of progress at the agency in CFS and other diseases. Fire the people who think this way, and hire scientists who understand that they work for the people of this country.

Reeves needed to get the boot long ago, and others who use pop psychology to blame people for their own diseases, as though a bad attitude could explain bacterial and viral ailments symptoms.

I hope the new director is reading this website and gets out his new broom for a clean sweep.
We (I can't say where I work at CDC) do believe this is the case with CFIDS. We also believe that a single virus does in fact set off a number of other viruses that ripple through the entire body. We have quite a bit of data showing the damage to the body, including the brain, and it is frightening and compelling.

We also fear for the nation's blood supply and the fact that this "new" virus has been out there in the blood supply and out in the public unchecked for quite some time. There is great fear that a virus, like H1N!, might "set" this "new" virus off and either kill quickly or cause several cancers that seem to be in high proportion in the CFIDS people, as opposed to the general pop. WE are scared. I pray our worse fears are unfounded but that is not what the evidence is showing right now. Sorry, I have to remain anonymous. I too need my job since I have 3 kids in college and a wife out of work.
Maybe it is time for me to look for a new job elsewhere. I have heard the rumors and read some serious documents (from Congress, NIH, even CDC) on the topic of the CDC's involvement in CFS and I can only conclude that there is something very wrong going on with Bill Reeves and his staff.
They have moved the CFS work to the Virology department and away from Bill Reeves. Reeves is cooked, stick a fork in him. It's over.
Investigations into the CDC for the last 30 years of CFIDS neglect is now underway.
And the CFIDS sick and advocates KNEW that Reeves did not have the gonads to show up at the HHS/CFSAC meeting, Dr. Mike Miller went and had to listen to the attacks made against the CDC and Bill Reeves, over and over and over.
Very bad day for the CDC.
There is now borderline hysteria about the nation's blood supply and the XMRV virus being in it for the past 3 decades. What does this mean? It means that this cancer causing virus has been in our blood supply and may have caused thousands or more likely millions of cases of cancer from blood transfusions, much like AIDS/HIV.
This is a scandal of epic proportions and the CDC is the bull's eye target for this situation.
God help us all. Cancer causing virus in the nation's blood supply for over three decades? This is well past CFIDS and into the whole population.
 

MEKoan

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I hit stumble thumbs up for Hilary's blog, as always :D, and got to write a "review".

I did not put CFS or ME, etc., into the tags. Everyone interested in that angle will find the blog. I want the fishies who don't know why they should be interested in our plight. I put: cancer, retrovirus, XMRV, cdc, bloodsupply, scandal

Review
Hilary Johnson's continued coverage of the CDC mishandling of Myalgic Encephalomyelitis which may have loosed a cancer related retrovirus (XMRV) into the blood supply and infected millions of people.

Scary and fascinating.


This is the hook I'm gonna keep tugging on. This isn't just about us any more -- it's about everyone.
 

zoe.a.m.

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This is the hook I'm gonna keep tugging on. This isn't just about us any more -- it's about everyone.
Exactly!

Under certain circumstances (such as accidently flying a bomber into the Empire State Building) it IS possible to sue the U.S. Government under the Federal Tort Claims Act. The FTCA permits private parties to sue the United States in a federal court for most torts committed by persons acting on behalf of the United States. The FTCA enables a limited waiver of sovereign immunity. I am looking into it with Federal specialist attorneys as things develop. There may be some interference with the civil rights of patients in the case of medical abuse. These actions would award attorney's fees in the case of a win, which would be huge.

It will not help matters for the CDC that they misappropriated CFS research money, and that Reeves turned on his bosses, spilled the beans and secured whistle blower status. When it all adds up, it will likely be a picture of wanton indifference to public safety and patients rights rather then a few well-intentioned bad calls on CDC's part. Time will tell.

If you are looking for reparations for decades of suffering and neglect, it would be easiest to look to the M.D.'s that treated you badly. In particular, M.D.'s that were not specialists in psychiatry that gave you a psych diagnosis are in trouble. If they had no diagnosis, they are in the clear. But if they labeled a patient as a psych patient without adequately exploring other co-morbidity causes, they are toast depending on how they noted your medical records. It would not surprise me to learn of M.D.s secretly attemting to redact incriminating comments about patients in their records as we speak. In most jurisdictions, the statute of limitations would be two years from the time XMRV is reasonably confirmed as the cause of your CFS symptoms to bring a private action against those M.D.s for damages, which could include negligent or intentional infliction of emotional distress, negligence, and medical abuse. These actions are lining up in the pipe with a number of different tort firms, just waiting for the research to firm up before dropping the hammer and serving M.D.s. Malpractice insurance is going to be going up in the U.S. if XMRV pans out as the cause of CFS.
I have wondered about people suing individual doctors for this purpose, as the doctors would likely try to pass the blame to wherever their "medical education" comes in (public health offices, training, for the young ones--med school?). I, personally, don't want to sue doctors (though a few I have dealt with are dangerously incompetent). Doctors blaming lack of education and information would be far more easily heard than have been patient's concerns and even CFSAC's recommendations. I don't think the Secretary of Health could refuse to listen to this.

I thought of a lawsuit because of the well-known differences between civil and public(?) suits. Just as car companies make a decision about whether to recall a model based on if the money they lose will be less than will result from death/injury civil lawsuits, there isn't a lot of morality in these type of decisions. It comes down to money.

Is it possible that the AMA or another major association of physicians could be held liable for patient abuse and neglect? Certainly if the CDC has known even of associations of viral/bacterial complications in CFS patients and if they have had biomarkers reported to them and did not follow up or give the support needed to practitioners, some criminal neglect might be present.

I don't mean to take away from any other type of suffering or marginalization (because it is widespread), but underserving or refusing to serve certain populations cannot be acceptable, and CFS patients are one of these populations. We have been denied medical help, treatment, disability, home care or assistance, etc.

Would it serve if CFS patients state-to-state lodged complaints against doctors/practitioners who refused to treat them, even symptomatically or who maintained that it was a mental illness? I believe you're correct Levi that, if a doctor gives no diagnosis, they are on relatively solid ground. Though, if someone goes into the ER with obvious infection and is not treated because they list CFS as an existing medical condition--that seems like something tangible. I'm guessing that if it's happened to me it's happened to others. Who could even say how long it would take to even get all of one's own records from numerous doctors to see what has been diagnosed?

Do we need XMRV to prove the lack of sufficient care and obvious abuse (in some cases) that has been going on for decades for something that was already known to be a serious illness amongst at least a number of practitioners? I'm not looking for revenge, but it's clear that change needs to happen soon. I am hopeful because of the excitement over XMRV, but it seems there are windows to having a leg to stand on in the case of CFS, and I'm wondering how I can best use this one.
 
M

martinwhite

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CDC staff are NOT sympathetic towards CFS, worried about their jobs.

#2 11-02-2009, 08:56 PM
caledonia:
"It sounds like our advocacy messages are getting through."

I would NOT make this asssumption. These people mades some very nasty and demeaning comments on CFIDS and being forced to deal with it because of Congress, not because they believe. There were several very cheap, nasty shots at the CFIDS sick and the waste of money on CFS at the CDC. What you saw were some CDC people who feared for the reputation of the CDC and worried about their jobs when yet more bad news comes out on the CDC. They did NOT appear to be sympathetic or supportive of CFIDS. Do NOT make that mistake and be lullied by it. I believe that Hillary Johnson also meant that in her blog as well.

If you read the site carefully, the site is NOT run by the CDC but by a former CDC staff member for CDC staff to discuss things without reprisals and to vent. The background on the website and its originator are ON the website for all to read. So, although this website is not an official, sponsored CDC website, it is meant for CDC staff (and outsiders if they knew about it).

I would NOT give the CDC staff credit for any kindness towards CFS. That would be a big mistake.
Also, go to the SEARCH box at the bottom left side of the front page and put in CFS and you will see all the old comments that were removed. Nothing earth shattering in any of them. And the nasty cheap shots at us are hurtful and come from stupid-sounding people.
Sorry, but the bottom-line is that the CDC is still not our friend but our very worst enemy...
 

starryeyes

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Also, go to the SEARCH box at the bottom left side of the front page and put in CFS and you will see all the old comments that were removed. Nothing earth shattering in any of them. And the nasty cheap shots at us are hurtful and come from stupid-sounding people.
When I went there and Searched for CFS I didn't see any disparaging remarks about CFS. Can you post some of them here in full, because if you take out snippets, then some of the remarks can look disparaging. So far, all the comments I've read have been supportive of us CFS patients.

tee
 
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These people mades some very nasty and demeaning comments on CFIDS and being forced to deal with it because of Congress, not because they believe. There were several very cheap, nasty shots at the CFIDS sick and the waste of money on CFS at the CDC. What you saw were some CDC people who feared for the reputation of the CDC and worried about their jobs when yet more bad news comes out on the CDC. They did NOT appear to be sympathetic or supportive of CFIDS. Do NOT make that mistake and be lullied by it. I believe that Hillary Johnson also meant that in her blog as well.

If you read the site carefully, the site is NOT run by the CDC but by a former CDC staff member for CDC staff to discuss things without reprisals and to vent. The background on the website and its originator are ON the website for all to read. So, although this website is not an official, sponsored CDC website, it is meant for CDC staff (and outsiders if they knew about it).

I would NOT give the CDC staff credit for any kindness towards CFS. That would be a big mistake.
Also, go to the SEARCH box at the bottom left side of the front page and put in CFS and you will see all the old comments that were removed. Nothing earth shattering in any of them. And the nasty cheap shots at us are hurtful and come from stupid-sounding people.
Sorry, but the bottom-line is that the CDC is still not our friend but our very worst enemy...
There's no reason to believe that everyone who works for the CDC is against CFS or loyal to Reeves just because they work there. Certainly everyone has their own opinion. Lumping everyone into one group by saying "these people made nasty comments" is not going to win us any allies at the CDC. Certainly there are CDC employees just as enraged over this scandal as we are:

"The CDC MUST be investigated top to bottom and not just for CFIDS."

"The data is out there and there is NO excuse for Reeves and his people anymore. NONE"

"Fire the people who think this way..."

"I can only conclude that there is something very wrong going on with Bill Reeves and his staff."

"This is a scandal of epic proportions."
 

Samuel

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When I went there and Searched for CFS I didn't see any disparaging remarks about CFS. Can you post some of them here in full, because if you take out snippets, then some of the remarks can look disparaging. So far, all the comments I've read have been supportive of us CFS patients.

tee
See my post below.

Perhaps we can find a place in the CDC where nobody is against us and move the whole program (but not any people) to that place?
 

starryeyes

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Sorry, can't produce a link, but there was a thread starter that said that a retrovirus result was going to be published. It talked about whining.

Interesting that the date of that post was October 1, days before publication.
Samuel, are you talking about this site?: http://www.cdcchatter.net/index.php

I can't find what you're talking about. What did you put in the Search Box and which page is this post on?

Also, have you seen how many posts are validating us there? I still have yet to find a negative post.
 

Samuel

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For what it's worth, it's this one. But again, I found the date to be more significant.

http://www.cdcchatter.net/index.php...sid=769&pid=13389&mode=thread&order=0&thold=1

"Science article coming out linking CFS to endogenous
retrovirus. If we can't cure AIDS, will there be any better
luck with this one? Don't think so. But the CFS advocates
will still be whining to beat the band for miracles on the
cheap."

Note that they got the endogenous part wrong and that the
date was October 2 (I thought it was October 1). Also note
that the grandparent article appears to be missing. Click
on parent to get to the parent.
 

starryeyes

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Thanks for posting that. Well yeah, we will be whining and complaining and rightly so. I don't know. I don't see that as indication that all these workers at CDC think of CFS in disparaging terms. There's always some negativity everywhere anyway. What I was pleased with is how many of them appear to really get what CFS is and also support us, the patients.

I'm not sure what you're saying about the dates. Is it that they knew about XMRV before the article in Science came out?
 
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Please write/email your Congresspeople!

Congressional hearings can be held on any matter--all of it takes is enough to get some elected officials interested.

I'm glad some people understand this. Some are in Washington for us right now. :)
Please email and/or write to your congresspeople! Let's keep the advocacy ball rolling.

Thanks,

Maxine
 

starryeyes

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Yeah we need to be addressing our Congress leaders and Senators. Now is the time!

Now what exactly should we tell them? That the WPI is on Capitol Hill right now?


About the CDC workers: they continually state that they are not allowed to share anything with other agencies or other medical institutions. They seem very frustrated about this. They also complain that they are not allowed to have a dissenting opinion about how things are done at the CDC ever. Many of them state that they need their jobs insinuating that if they didn't they would be walking out. Some even state they weren't in medicine for the money, they truly wanted to help others and they are dismayed by how atrociously we've been treated.

Notice though how Reeves has no qualms about asking the WPI for the patient data and serums because he doesn't know whether they tested men or women or little boys or little girls and he's all confused even though the CDC has supposedly been studying CFS for the last 25 years and said they have patient serums of their own.
 
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Yeah we need to be addressing our Congress leaders and Senators. Now is the time!

Now what exactly should we tell them? That the WPI is on Capitol Hill right now?
------
Hi teejkay,

Good question - I would appreciate other people's input. What I am saying is that I would like Sec. Sebelius to be aware and act on the recommendations made by the CFSAC.

I also always mention that in light of the research done by WPI, and the possible link between CFS and XMRV, I am concerned about the blood supply. I believe someone else on another thread posted that they had a friend who recently gave blood and that the Red Cross worker told them that there was a no problem in giving blood if you have CFS.

Take care,

Maxine