big new post from Hillary Johnson

[Otis]

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

Here's a link: http://oslersweb.com/files/dear_sirs_I_am_sick0001.pdf

 

[SOC]

Here's a link: http://oslersweb.com/files/dear_sirs_I_am_sick0001.pdf

Wow. And these people are supposed to be concerned about our nation's health....

I haven't yet read Osler's Web. Has the CDC ever said anything about this disgusting exhibit?

 

[Bob]

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.

Thanks for that, muffin... you make it sound like it's well worth reading, and that you got a lot out of reading it...
All the snippets that i've read have always been fascinating... but... 700 pages?!? Can i really get through that and then remember any of it?!?

 

[Bob]

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.

Yes, I see this as a serious upcoming problem for our community that no one has started to address yet due to the excitement surrounding XMRV. What of those who get left behind without an XMRV diagnosis? It looks like it might be a very significant proportion of us, like 50% of us, who get tested XMRV -ve.

I'm sure that the CDC would love to divide us... What's the saying? "Divide and conquer"!

But the good news is that Judy Mikovits has promised that no one will be left behind... that she won't forget about any of us... And I'm certain that Annette feels exactly the same... This is exactly why the WPI was set up in the first place... to help people with CFS who have been neglected by the establishment, and left behind.

 

[V99]

Simply we stick together, and those with XMRV fight for those without, and vice versa.

 

[gu3vara]

Considering some people with negative XMRV here are showing improvement on ARV, I wouldn't worry too much about that. The infection might just be hiding like Lyme, where false negative exists and must be diagnose by symptoms. If XMRV is an official cause of CFS, I don't think anything other than another retrovirus (DeFreitas retrovirus perhaps) could be the cause of it.

 

[natasa778]

Some of those XMRV -ve could be false negative BUT also remember what Alter mentioned in the leak, they came across 'related' MulVs in humans. I guess those would not be coming up on commercial XMRV tests, and if present would be more than capable of damage. Hopefully Alter paper will draw attention that other possible retroviral culprits should get a closer look at!

 

[Otis]

Great point Natasa. I'm very curious about that, a new window may be opening on human disease. Can't wait for the paper!

 

[V99]

I agree, the chance that negative is still not negative, even from the WPI, may mean it won't be a problem, also the possibility of other MuLV's.

I say, go CFS team.

 

[MaryAnn]

I too agree and don't know which is more scary - having a retrovirus, or back to having no answers. This could be why Dr. Lerner has some who get better; maybe they don't have XMRV, or maybe it hasn't developed into "full-blown" XMRV (HIV into full-blown AIDS), or maybe the immume system in these people has been able to stave off and partially recuperate depending on other pathogens receiving tx, or, lastly, maybe it just hides out in tissue/bone marrow?

 

[*GG*]

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!

Yes, this would be good!

 

[usedtobeperkytina]

I love the idea of having a retrovirus. Of course, I am past childbearing age, already married and don't have any children. But if I don't have a retrovirus, as has been said, I might have some other pathogen which would involve the same issues.

I suspect that there are many retroviruses that have yet to be discovered. XMRV seems to have unusual features of disappearing from the blood. It also has "triggers", indicating some periods of little or no activity. All of this, of course, contributes to why it was only discovered in 2006.

How many others are there like this one or with other unusual features? As has been said, someone needs to pull out the DeFreitas work and take another look.

Tina

 

[Dr. Yes]

Simply we stick together, and those with XMRV fight for those without, and vice versa.

There is a very good scientific reason to 'stick together', even if XMRV- patients really do not have XMRV or any other retrovirus. That is because they obviously have a disease with very similar symptomatic hallmarks, and thus may have common disease mechanisms at work. Assuming XMRV is causal/co-causal in many or all XMRV+ ME/CFS cases, it will still not necessarily be easy to untangle the mechanisms by which it brings about ME/CFS. Comparing the pathophysiology of XMRV+ and true XMRV- patients could be helpful in shedding light on these mechanisms. For example, if a given abnormality in cytokine profile or neuropeptide expression level is seen in the XMRV- group, one could look for that as a higher priority among the many possible parameters to check in XMRV+ patients.. and of course vice versa. If there are similarities in the downstream pathway of disease between XMRV+ and XMRV- ME/CFS (CCC-defined) populations, then studying one group can help our understanding of the other.

 

[usedtobeperkytina]

I also suspect that even the soon to be determined standardized test will not catch all of the XMRV positives. I don't know why I get this feeling. I know they are looking at antibodies. I also know that antibodies will show if person is exposed. But, I just have an intuition that there still may be a snag. HIV seems to have the opposite problem. If you come back positive, you have to be tested again to confirm. And it is for antibodies.

I guess it just seems like such a hard virus to find, I don't think it will every be easy in testing. But I could be wrong.

Tina

 

[Angela Kennedy]

I love the idea of having a retrovirus. Of course, I am past childbearing age, already married and don't have any children. But if I don't have a retrovirus, as has been said, I might have some other pathogen which would involve the same issues.

I suspect that there are many retroviruses that have yet to be discovered. XMRV seems to have unusual features of disappearing from the blood. It also has "triggers", indicating some periods of little or no activity. All of this, of course, contributes to why it was only discovered in 2006.

How many others are there like this one or with other unusual features? As has been said, someone needs to pull out the DeFreitas work and take another look.

Tina

Am I right Tina that you meant " I DON'T love the idea of having a retrovirus"?

 

[usedtobeperkytina]

no, I DO love the idea of having a retrovirus. I know someone with HIV that is fully functional and has been for over 13 years. How much I long for that.

Tina

 

[gu3vara]

It's far better to have a retrovirus than a mysterious autoimmune/genetic illness for which there is nothing that can be done, I'm on the same side.

 

[SOC]

no, I DO love the idea of having a retrovirus. I know someone with HIV that is fully functional and has been for over 13 years. How much I long for that.

Tina

I'm with Tina on this. I'm not planning on having any more kids, I know I'm really sick with something that is degrading my quality of life severely. I, too, look at HIV patients and think, "If I can have that quality of life for 25 more years, great!"

On the other hand, I really, really wish that there were a different explanation for my 18yo daughter who has low-mild symptoms. She has career, partner and future children issues, and a lot longer to live with a retrovirus.

Sometimes its just a matter of perspective.