big new post from Hillary Johnson

[usedtobeperkytina]

It says she is not being told to publish her thoughts by her employer.

Tina

 

[Levi]

Oh thanks Gracenote and Tina. I read that wrong. I am glad she is free to publish away too. I guess she was taking a jab at the NIH for censoring Dr. Alter et al with that comment. I missed it. Hillary has probably dashed her chances for any future work in the public relations division of the NIH now.

That is exactly what she is NOT saying.

 

[Marco]

Unfortunately, this exactly what happens in large public bureaucracies.

Evidence based policy making is overturned and evidence is 'managed' to support the established policy agenda.

I agree with Hilary that you don't have to construct any particularly sinister agenda to explain this behaviour. Simply, HHS senior officials have allowed disinterest to turn to neglect and it is this neglect that may come back to bite them. I expect they are now in career saving mode and senior officials absolutely do have the power to do this.

They are however reponsible to the Health Secretary. What we need is independent scientists (not entirely funded by HHS if possible) to write to Kathleen Sibelius demanding that science be conducted impartially and to explain the witholding of the Alter study. She can't argue that this is normal practice so her response would be interesting.

In fact, who was the congressman or senator who pulled CDC up on the misappropriation of CFS funding?

 

[Alexia]

Finally I got to read it! It's great and very strong.

 

[usedtobeperkytina]

Marco

Marco, I was hoping more researchers would make public comments demanding publication. Not just send letter to Sebelius, but call a joint press conference.

In fact, I was thinking last night that the IACFS/ME should have a press conference and make the announcement urging publication.

Additionally, chairman of the CFSAC.

But, seems problem may have been solved. And when the FDA / NIH study is published, which seems likely, it will be stronger.

We will never know the phone calls that happened. Who knows what kind of behind the scenes pressure was applied. All we saw were the leaks and law press pressure. Could Dr. Vernon have been making some phone calls too?

Tina

 

[jimbob]

I just contacted ABCs Nightline about doing a follow-up (sequel) to my appearance on the show in the mid 80s with Dr. Gantz. They're celebrating 30 yrs on the air and this might be some of the stories they're looking for, especially since I still have cfs/me. Lets hope I hooked them!

 

[bettine]

No Wayne, that is not 'it', it is the article before that one, named: Rubber meets Road, here is a link: http://oslersweb.com/blog.htm?post=718351

 

[Hope123]

I just contacted ABCs Nightline about doing a follow-up (sequel) to my appearance on the show in the mid 80s with Dr. Gantz. They're celebrating 30 yrs on the air and this might be some of the stories they're looking for, especially since I still have cfs/me. Lets hope I hooked them!

Thanks for doing this jimbob!

 

[Otis]

Tina,

I do believe someone in the CAA is.in the loop based on the following explanation from Facebook for their apparently exclusive story on the publication of the Alter study. "The information comes from several well-informed people close to the study with whom we are in regular contact."

In this case I don't care how this gets published or reported and I want to see the CAA pounding on doors to keep science moving but I have some misgivings, that I can't really put my finger on, with an advocacy org developing and citing anonymous sources like a newspaper.

What are your thoughts on that Tina?

Otis

 

[grant107]

Could it be the CDC will say people with xmrv are a subset with a different illness and the rest are CFS(a psychological illness). That way they are both right.

 

[jeffrez]

Wow, am I the only one who had never seen that faux "letter" the CDC had up in its offices? That is an atrocity, almost on the level of a war crime, in my opinion. Mocking sick people in your society, just because you are completely and absolutely IGNORANT about the workings of the neuroimmune system and what causes CFIDS. A new low I didn't even think the CDC could sink to. I've seen doctors project their ignorance all the time - it's almost what defines them, in fact - but I've never seen anything as blatantly offensive as that. Wow.

 

[Wayne]

No Wayne, that is not 'it', it is the article before that one, named: Rubber meets Road, here is a link: http://oslersweb.com/blog.htm?post=718351

Thanks Bettine, much appreciated!

 

[Sasha]

I hadn't seen it either, Mr Kite, and I was sickened by it.

On the other hand, excellent ammunition for a future lawsuit!

 

[Otis]

Could it be the CDC will say people with xmrv are a subset with a different illness and the rest are CFS(a psychological illness). That way they are both right.

A distant possibility. We're going to need to stick together as those of us who are XMRV negative (assuming it's the cause) could get thrown into a CFS hell like that of the UK.

 

[jeffrez]

I hadn't seen it either, Mr Kite, and I was sickened by it.

On the other hand, excellent ammunition for a future lawsuit!

Absolutely. It was a deliberate attempt to humiliate and denigrate CFIDS patients, and also apparently an aggressive and intimidating "warning" to everyone at CDC who read it not to take CFIDS seriously or else be subject to the same kind of derision and ridicule displayed toward us in the letter. Can you imagine a letter like that about AIDS patients, or cancer patients? It's outrageous, especially in a place funded by our tax dollars.

 

[Bob]

I don't understand it... I keep thinking that i know so much about the ME/CFS story now, and about the science, after having been following all of this scientific research for so long... (I'm even starting to feel like an expert virologist now - I know I'm not, but I'm sure that we are all expert virologists compared to the CDC scientists!)...

But then i keep coming across totally new information that i've never seen before, that I think I should have seen before... This has been happening to me all week!

It seems to be a case of "The more I know, the more I don't know"!

Anyway, here are a couple of very interesting snippets taken from the following link, which is an interesting recent review of Osler's Web, on the Age of Autism website, which one of Hillary Johnson's recent blog entries mentions and gives a link to:

http://www.ageofautism.com/2010/07/oslers-web-a-prequel-to-autism.html

But the small cadre of doctors investigating the disorder, led by Dr. Elaine DeFreitas seemed to be making significant headway into discovering what was causing the malady. Specifically, it seemed to be an unknown type of retrovirus which would in turn reactivate infections of the Epstein-Barr virus, and human herpes-virus 6 as well as others.

DeFreitas found that in identifying the virus specific protocols had to be followed, such as not freezing the blood because it destroyed the cellular DNA in which the virus like to nest, the sample needed to be cultured for 10-12 days in order to generate significant numbers of the virus, and specific primers needed to be used.

In attempting to replicate her work the CDC did not follow these protocols...

Does this make XMRV sound like a serious case of deja-vu or what?!


And i didn't know that Dan Peterson had done this either:

“By mid-September, Dan Peterson’s pilot study of Ampligen was officially over. All the patients had undergone an elaborate series of tests including treadmills, metal status exams, MRI brain scans, and careful assessment for human herpes-virus as well as a range of blood tests. Eight patients experienced dramatic improvement by several measures.
Their performance I.Q. levels rose. Consumption of oxygen, tested by walking on a treadmill, increased “markedly,”

Peterson reported, in 60 percent of the patients, some of whom had greater than 100 percent improvement without engaging in any exercise program. Interestingly, Ampligen also reversed high levels of human herpes-virus 6 proliferation in assays by tissue culture.” (P. 355 of Osler's Web)

Johnson noted that Ampligen also seemed to cause the disappearance of the UBOs noticed on MRI scans, but when the trial was stopped the effect did not continue and the patients lapsed back into their previous state of poor health.

I think I really need to take the plunge and attempt to read Osler's Web! (I've always been put off attempting to read it by the sheer size of it!)

 

[muffin]

Bob: Read Osler's Web asap. You will have a far better understanding NOW of the retrovirus that Defreitas found and the CDC damaged (two different, completely opposite results found by CDC, says something).
Johnson's history on CFIDS is a keeper. It's a fast read even for a large book. You will gain a huge amount of insight to the whole sordid history of CFIDS and the CDC/NIH from the very beginings of the Incline Village outbreak. It's going to blow your mind and really enrage you so be on guard. But this book is a MUST READ for those that can read (I could NOT read when first sick and so read it about a year ago).
Osler's Web is an historical account of an epidemic that the CDC went out of its way to damage/destroy/deamn - this is our history and it should never be forgotten.

 

[alex3619]

Hi Otis

I completely agree with you. Any one of us who is not confirmed XMRV+ could still test negative. Nobody should be left behind.

Bye
Alex

A distant possibility. We're going to need to stick together as those of us who are XMRV negative (assuming it's the cause) could get thrown into a CFS hell like that of the UK.

 

[tolduiwuzsic]

where, where? i didn't see the faux letter....is it in hiilary's post?

 

[SOC]

A distant possibility. We're going to need to stick together as those of us who are XMRV negative (assuming it's the cause) could get thrown into a CFS hell like that of the UK.

As a patient group, we cannot let that happen. We all know what it's like to have an undiagnosed illness. Who better than those of us who finally have a diagnosis to advocate for support and treatment for those of us who don't yet have a diagnosis? How could we leave anyone in the CFS hell of Reeves and Wessely?