New Update From Dr. Jamie: XMRV and antiretrovirals

[CBS]

Is there actually evidence that people are dying from CFS? I don't mean suicides, but disease-related deaths that can be proven?

Very little has been done in this area. The only article of note was by L. Jason and it is limited - "The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS." This is clearly a non-representative sample it but at present, ME/CFS is never listed as a cause or a contributing factor to death. An additional problem is the cohort issue. ME/CFS by what definition?

That said, the following paragraph concerns the ages of death of those patients included in the Jason study:

If one examines national rates of death for these conditions, the ages of death for these three conditions [heart failure, cancer and suicide] among the patients with CFS are considerable earlier. The median age of death for cancer in the United States is 72 (Reis et al., 2003, versus an average age of 47.8 for the CFS sample), the average age of death for suicide in the United States is 48 (Centers for Disease Control, 2003, versus an average age of 39.3 for the CFS sample), and the average age of heart failure is 83.1 (CDC, 2003, versus an average age of 58.7 years for the CFS sample). What this suggests is that those from this memorial list who did die of cancer, suicide, and heart failure were considerable younger than what would have been expected from the general population, which means that CFS might have increased the risk of death for at least this sample.

http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Causes of Death - CFS Patients.pdf

Health Care Women Int. 2006 Aug;27(7):615-26.
Causes of death among patients with chronic fatigue syndrome.

Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S.
DePaul University, Chicago, IL 60614, USA. Ljason@depaul.edu
Abstract

Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed.

 

[ixchelkali]

I certainly applaud her honesty. Symptom presentation is obviously not sufficient for telling who is XMRV positive or not (see - me; quite functional testing positive while others with worse symptoms do not)...everythings a little trickier than one would wish.

I think Dr Jamie makes an important point when she says "Quantitative measures will be necessary." Considering the relapsing/remitting nature of the disease, add to that a possible Herx-type reaction if the immune system begins functioning again, and possibly a slow response to the antiretrovirals, and I don't see how you can possibly have useful clinical trials until there's some accurate way of measuring viral load.

As for Dr. Deckofff's day in the airport, one possibility that I have not seen discussed is that the ARV's could be doing their thing but the disease process has already caused systemic damage that is not simply going to disappear once the original infection is brought under control. Look at all the success we've had in treating polio and now post-polio syndrome is a huge issue in "former" polio patients. I simply don't think we're all getting a "get out of jail free card" regardless of what we learn about XMRV/MLVs.

I've been thinking exactly the same thing. Even if retrovirals work to arrest XMRV/MLVs, it's possible that it won't reverse damage already done to organs. For instance, if XMRV crosses the blood/brain barrier (as seems likely), there could be damage to the hypothalamus, leading to the out-of-whack HPA axis we see in ME/CFS. Even if the virus were eradicated, how long would it take the body to repair that...if it could at all?

I think that if XMRV is damaging our immune systems, then getting it under control, thus allowing the immune system to fight off the myriad infections that ME/CFS patients have, would have to make us feel better. But I don't think it's going to be a magic bullet for those of us who have been sick for a long time. I think for many of us, recovery will be a long, slow road (and we may never completely recover). But I sure would like to get started along that road. Frankly, even if I don't get "well," just getting somewhat better sounds darned good to me.

 

[ukxmrv]

If worried about the "relapsing/remitting" nature then use patients like me who have never has a remission. In MS they often tailor the type of patient in that way so they is a precedent.

XMRV+

 

[undcvr]

There are a lot of antiretrovirals that were developed for HIV that turned out not to work for HIV but are still "on the shelf." Some of those might turn out to be useful against XMRV, and some have at least passed Phase I trials so would be starting at first base.

That's assuming that antiretroviral drug therapy is even going to turn out to be what we need.

I still think that it is going to turn out to be a retrovirus bcos they target immune cells alot. Some docs r looking into entero retrovirus as well. It is knw to cos gastrititis or IBS too. So there might be a connection there as well and since they are all retroviruses the same ARV might work on some of them. Personally for me, i think cfs is an immune system disorder which allows all these infections into us and depending on what is attacking u at that time or where u are, diff viruses can then set it. It explains the myraid of different symptoms that we have.
If that is the case then XMRV is a cross species virus ( murine: from mouse) so it might not be it. It cud be too new. Of course that is not to say that it has been around all this while and just happened to be opportunistic. But it seems more likely to be a virus that human being have been exposed to for a long time that MOST OF THE POPULATION have already built resistance to, is infecting us. In that case I wud look at older viruses, and viruses that have been with us for a long time.
It still has to be a retrovirus because retroviruses seem to have an affinity for our immune systems, *huge sigh here* and this is what is happening to us.

Someone on PR posted that Joe Dirisi tested several cfser with the Virochip. XMRV wasnt that consistent, instead HERV was. (Human Entero retrovirus) another one that turned up quite abit was HGRV (Human Gamma retrovirus).

What really really concerns me is that sooner or later everyone with cfs will evetually sucuumb to the virus attack and be diagnosed with either lymphoma or leukemia. It makes sense cos the virus hides out in the B cells and as I understand it in CD57 cells. And like many other viruses that hide out in their host cells (human papilloma - cervical cancer), (HHV8 - Kaposi) they eventually turn them cancerous.

 

[shannah]

Hi ix,

I think Dr Jamie makes an important point when she says "Quantitative measures will be necessary." Considering the relapsing/remitting nature of the disease, add to that a possible Herx-type reaction if the immune system begins functioning again, and possibly a slow response to the antiretrovirals, and I don't see how you can possibly have useful clinical trials until there's some accurate way of measuring viral load.


If you've seen the Mikovits in Sweden talks yet, she mentions that they have testing for viral load now. Cort covers it in his summary.

"Not only does this test cut down the assay time now by almost a month but it can also quantify how much virus there is; ie it seems they finally have a way to measure viral load. Not being able to measure viral load has been a sticking point for those who call for treatment trials; most retrovirologists want to be able to measure how effectively anti-retro viral drugs are knocking down the virus - this test appears to give them the ability to do that."


http://forums.aboutmecfs.org/content.php?313-Dr.-Mikovits-The-Sweden-Talk

 

[Rooney]

I wonder when this new assay will be available at VIP DX?

Waiting for the better test.

 

[Jemal]

Dr. Deckoff-Jones made a new post:
http://treatingxmrv.blogspot.com/

It's less negative about antiretrovirals then the post mentioned in this thread.

 

[alex3619]

Hi Alex,Not seeing Chia but someone who closely follows his protocol in some patients. Chia may test tissue from the colon but enteroviruses can definitely be found in the lining of the stomach and in the duodenum.

Hi CBS, I have confirmed that I was wrong, that it is stomach biopsies KDM is doing. I got this, indirectly, from a patient. Bye, Alex