New update from Jamie Deckoff-Jones MD

RustyJ

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She laments the lack of progress in taking up ARVs

http://treatingxmrv.blogspot.com/2010/07/experiment-in-progress.html

The experiment in progress
Coming up on eleven months after publication of the Science paper, sadly my email (which includes treating physicians) is still my only source of clinical information besides what's happening in my own household. It would appear that fewer than twenty people have tried antiretrovirals for X infection. Of those, about a third are at least some better (on one to three drugs), about a third are not better (on one or two drugs) and about a third didn't tolerate the drugs long enough to learn anything. As far as I know, no one has been harmed.
 

muffin

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One interesting commentor on this blog

"Toadlily said...
Thank you so very much for keeping us all in the loop! And how sad (yet not so surprising) is it that chickens get more support than us?

When the humans with 'prostates' in the current bio-political .gov arena figure out that they (and their prostates)are in danger and have been for 20+ years; and that by ignoring CFS for so long they have endangered themselves and their wives, and their children, well then, I expect we will see momentum build. It kinda makes me wonder if officials at the CDC already have antiviral prescriptions filled for their family members.'

Muffin-->> I too wonder if the CDC/CFS people and "others" have not made certain to have the right meds ready to go OR they may even have or have had their own family on these meds. This was an interesting point. The CDC KNOWS that there is a Retrovirus and it is real. They know it is found in aggressive prostate cancers. They also must know that XMRV has been found in the sick and in the non-sick. If I were working at the CDC, I too would find out what meds might kill of XMRV and fill up on those meds - esp. when the rest of the Postive studies come out and people are fighting to get those meds. Makes sense to me given that Reeves and his sociopath followers and his sociopath British buddies (Weasel, White, Sharpe, others) KNOW darn well that this virus (and prob. other viruses as well) have been out in the public for 30 plus years. All the US and UK SOCIOPATHS know damn well what's going on and what viruses are out in the public. Don't think they don't know...
 

taniaaust1

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When the humans with 'prostates' in the current bio-political .gov arena figure out that they (and their prostates)are in danger and have been for 20+ years; and that by ignoring CFS for so long they have endangered themselves and their wives, and their children, well then, I expect we will see momentum build. It kinda makes me wonder if officials at the CDC already have antiviral prescriptions filled for their family members.'

Muffin-->> I too wonder if the CDC/CFS people and "others" have not made certain to have the right meds ready to go OR they may even have or have had their own family on these meds. This was an interesting point. The CDC KNOWS that there is a Retrovirus and it is real. They know it is found in aggressive prostate cancers. They also must know that XMRV has been found in the sick and in the non-sick. If I were working at the CDC, I too would find out what meds might kill of XMRV and fill up on those meds - esp. when the rest of the Postive studies come out and people are fighting to get those meds. Makes sense to me given that Reeves and his sociopath followers and his sociopath British buddies (Weasel, White, Sharpe, others) KNOW darn well that this virus (and prob. other viruses as well) have been out in the public for 30 plus years. All the US and UK SOCIOPATHS know damn well what's going on and what viruses are out in the public. Don't think they don't know...
You give them far more credit then I do.. I personally think Weasel, White etc are too stupid to even believe there is a virus out there in us.

We need to start being Monicas and those with CFS need to start having affairs with presidents world wide. Those of us that is who arent too tired.

(Just in case anyone took me seriously... this is a joke).
.................

One third is improving on those drugs. That dont sound all that good to me as many of us have ups and downs with the illness and it is likely that at least some of those third, are just in one of it's better phases currently.
 

Jemal

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Ai that new post does not sound optimistic at all. Or is that just me?
Well, I thought it was rather negative as well. But thinking about it, she's just reporting the truth. I guess I was hoping for a simple solution to this illness...

One eye-opener for me was this:

It seems to me that the inflammation and autoimmunity that becomes established as the illness progresses is the body doing what it is supposed to. It knows the virus is there and responds accordingly. The confusion with invader and self isn't going to just go away, when the virus is integrated into the DNA of existing cells, even if we stop it from replicating.
This sounds logical.
 

heapsreal

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after reading the link, i think she is saying that the people who a responding poorly have had this illness for a very long time and the damage is done, she also mentions co-infections. I still think co-infections make this illness difficult to treat and i think cfs comes in subsets eg ebv, cmv, hhv6, xmrv etc and combination of these things as well as bacterial, yeast infections etc. Hopefully all the stuff on xmrv will help towards sorting this stuff out along with dr lerners studies on herpees infections in cfs and all the other cfs experts studying there particular infections involved in cfs.

cheers!!!
 

leaves

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Yeah I am pretty sure I have XMRV since birth, so that is almost 30 years. Things are not looking too bright then.
 

SOC

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Yeah I am pretty sure I have XMRV since birth, so that is almost 30 years. Things are not looking too bright then.
I suspect that one can live with XMRV for a long time without really bad effects. Perhaps when it gets to a certain point (XAND) that we start to do permanent damage. I'm guessing (completely wildly) that the damage point may be around the time that the patient becomes housebound.

So maybe if you haven't been really ill the whole time, you won't have permanent damage....?
 

RustyJ

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Yeah I am pretty sure I have XMRV since birth, so that is almost 30 years. Things are not looking too bright then.
Leaves, I also believe I have had the disease from birth. However I recently had a 6-month period where some of my energy returned and I was even doing light weights on a daily basis without coming down afterwards. I was on ALA for 4mths prior to that - don't know if that was the reason. Anyway, what I am trying to say is that I would be very happy to get back to that level of health, even if it wasn't a full recovery. There are many cases of people partly recovering. There is hope.
 

RustyJ

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Yeah I am pretty sure I have XMRV since birth, so that is almost 30 years. Things are not looking too bright then.
I thought the main message Jamie had was that there is a lack of support in the ME community ( both patients and professionals) for taking ARVs. I don't think she was really saying they are not effective or that there will be less improvement for those with long-term illness. She was saying that we might have to take the ARVs for a long time before there is very significant improvement.

There is not enough support (and plenty of criticism) for those desperate enough to try ARVs, so when they experience worsening symptoms, in the absence of reliable information, they drop the treatment. This is not evidence the treatment does not work.

In my view, those who have experiences of improvement after days or weeks of treatment may actually be experiencing the normal ebb and flo of ME or coinfections.

The ARVs currently being used were for developed for HIV. HIV is a different beast to XMRV - that has been said time and time again. As far as I know none have been trialled in a clinical sense on ME patients (at least no studies released).

With HIV, simply clearing the virus from the blood significantly slowed down replication and perhaps limited the spread to tissue reservoirs (and helped with symptoms?). In fact I am not sure how effective ARVs are for clearing HIV from reservoirs.

XMRV seems to rely on cell to cell replication. It may already have reached most tissue or organ reservoirs by the time it is significantly impacting on our health. In other words it may be more embedded than HIV at that stage. We don't even know enough about the tissue reservoirs to know whether the currently used ARVs are effective in these areas.

You can bet many more ARVs are being studied and ultimately others will prove more effective for ME.
 

justinreilly

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You give them far more credit then I do.. I personally think Weasel, White etc are too stupid to even believe there is a virus out there in us.

We need to start being Monicas and those with CFS need to start having affairs with presidents world wide. Those of us that is who arent too tired.

(Just in case anyone took me seriously... this is a joke).
.................

One third is improving on those drugs. That dont sound all that good to me as many of us have ups and downs with the illness and it is likely that at least some of those third, are just in one of it's better phases currently.
They have known this is an infectious disease all along. There is no other plausible explanation. They are clearly sociopaths.