Retrovirus Positive CFS Patients Show Enhanced Response to Ampligen(R), an Experiment

Well, what do I say? sraym01's post was reported for sexism and I must say that I agree. I almost wish my grandmother was alive to read what he wrote because I think she would give him a piece of her mind. Born in 1905, by the time she was nine, England was at war with Germany so, for four years, she shared in the deprivation war brought. By the time she was married, the hunger marches had begun, and by the time she had a couple of children, the world had entered the Great Depression. She struggled through that, making ends meet on my grandfather's meagre income and had just about afforded a radio in time to hear the announcement that England was at war with Germany. By then, my grandfather was showing signs of heart disease so his role in the war was as an air raid warden while my grandmother struggled to feed a family on wartime rations. She gave birth to her last child under the stairs while German bombers flew overhead. After the war, they finally afforded a house with an indoor toilet. Halleluia! Then my granddad died and my grandmother raised the rest of her children and me, and my cousin, all alone on a widow's pension. Not bad for a weak and feeble woman, deprived of a provider!!!

 

What an amazing woman.

 

Well, of course I think so :Retro smile: but I know a lot of women of her generation struggled through all sorts of deprivations, heaped upon them by the Depression and a couple of World Wars. Healthy men were away fighting while women held the fort at home and I marvel at them. So, it just blows my mind when anyone tries to suggest that they were not accustomed to stress, that this is somehow a modern woman's disease. I'm even more flabbergasted by the suggestion that women are somehow not "in shape," thus are more susceptible to illness than men. Perhaps someone should tell the actuaries that, because they seem to be under the impression that women, by and large, outlive their husbands.

 

I apologize for my insensitivity everyone, I did not mean to offend. By no means am i trying to pick on woman, simply trying to rationalize this confuing process aloud. I realize 97% of all people are healthy and are brave individuals who handle stress and I'm not blaming anyone, simply looking at all tthe risk factors and trying to see how it fits the theory of affecting the rare few that do get sick, I know there are a ton of factors and many are out of anyones control. To answer you all I just believe my mother may have cfs and I have simply been investigating as she isn't really capable of doing so. She seems to have many of the same issues and many of my hypothesis are simply connecting dots from really the only one I know who may have it. I do own a very modest position in HEB in my tfsa and that's it. No agenda's, simply being brave and putting my theories out there as occasionally it envokes debate and good things come from that. I'm sorry from my investigations thus far I do believe in the drug but I suppose I'm not the most sensitive in my writings. I think I best observe from the sidelines from now on.

 

martlet your grandma is most impressive! what dif times.

sraym cool with me, thanks for facing the music

I was 29 and fit as hell when this happened to me, didnt have kids, was definitely still playing in my life, I don't think I had a lot of stress, in a way I still don't as I pace myself bigtime and didnt do the kid thing so mostly accountable to myself, but of course the stress for me is trying to factor in this cfs/me b.s., so hard to predict and commit to things cus don't know what stamina or pain level will be

 

Hi gu3vara,

I am thinking along the same lines as you. They might not test positive because the virus is deeply embedded in tissues or has suppressed the immune system to the point where it cant fight XMRV any more, or both. This is just speculation of course, but I really like finding anomalies like this: it means that if we can understand what is happening we might learn a lot about XMRV.

Bye
Alex

 

This study seems to add some support to the idea that XMRV may be another secondary infection of CFS similar to HHV6 and EBV rather than the primary cause of CFS. If XMRV is the primary cause of CFS the way that HIV is the primary cause of AIDs then every person that has CFS must be infected with XMRV/MLV. This would mean that the XMRV negative patients would only be negative due to false negatives in the XMRV/MLV diagnostic test. However, false negatives in the diagnostic test should have no effect on treatment outcomes, since everyone with CFS would be infected with XMRV/MLV, with some just not showing up on the diagnostic test. The fact the XMRV positive patients responded much stronger to treatment with Ampligen than XMRV negative patients means that something else may be causing CFS which damages the immune system, which then allows XMRV to infect some CFS patients as a secondary infection. In this case, assuming Ampligen is an effective treatment for XMRV infection, the XMRV infected subset would see greater improvement in symptoms compared with the XMRV negative group, just like treating for HHV6 would show a greater improvement in symptoms for HHV6 positive patients compared to HHV6 negative patients.

As I mentioned before, its CFS that we want to treat, cure, and prevent. If XMRV/MLV is the cause, then great, we are all the closer. If not, then at least it has brought CFS a great deal of attention from the research community, and thoroughly demonstrated beyond doubt that CFS is a severe, debilitating physical illness (you don't get major co-infections of retroviruses with a psychological illness). We should use this opportunity to focus research on finding the cause, prevention, and treatments for CFS, regardless of its connection to XMRV.

Before the last XMRV conference, members from the NIH met with CFS patients and offered an avenue for appropriate feedback about our concerns. I think it is appropriate to express our desire to the NIH that they fund a significant research program specifically into the cause and treatment of CFS regardless of its association with XMRV. For instance, wouldn't it be fantastic if someone of the caliber of Ian Lipkin in cooperation with other researchers such as WPI focused their attention on finding the cause of CFS, irrespective of its association with XMRV. If the proposed XMRV association studies prove positive, then great, we don't stop there, but immediately focus on demonstrating causation. More importantly if the association or causation is negative or inconclusive, we don't stop there, anymore than we stopped looking for the cause of AIDS, or SARS, or West Nile virus.

 

Free At Last: I'm truly sorry if you thought by my talking about the fact that some people recover -- very few as I mentioned -- that I -- or anyone on this forum -- was judging you. I don't understand that at all.

You may not believe me, but I've felt as angry and frustrated and suicidal too, especially this last couple of years. I don't know where you assume that because some people have gotten better that they might think you're a fraud or whatever, or that you have 'real' ME, and the rest of us don't? Truly sorry "Free", but I just don't know how to reply to your post.

 

Trust me on this Danny, it really wasnt anything to do with you, you just said the right words that got me thinking,

something i shouldnt do. the post was more to do with ignorance from a lot of people. but you need to trust me on this, that didnt include you, as mentioned you just wrote the words that got me thinking generally. it wasnt directed at you, i wrote that at the top before i started, probably should have been clearer on that, i can see why you may have thought it had something to do with you, it didnt. infact it isnt anyone in particular at all. ive talked to some really clever lovely people on here. but there can be a kind of superiour ignorance that i occassionaly pick up on, that makes me wonder why the hell i bothered writing here. dont know if anyone else gets that. but thats tough when you think you might belong to a group of people that actually get it. probably shouldnt have wrote that post Danny, it just seemed there is a real interest in those that partyly or fully recover, and ive been shouting from the rooftops for ages. but largly ignored. i dont get it. feel akward now. knew i would. probably time for a break for thinking and talking about this madness
Apologies if you thought it was about you. it wasnt. if it was, truley i would say. often as you can see i dont hold back, even when im wrong, which i might be here i duuno

 

Uggh,

Looks like I somehow missed this thread! Can someone recap any important "discoveries"?

thanks!

GG

 

I totally understand. No need for any apologies, and no need to feel awkward. Believe me, I've posted many times with no replies...seems like my posts often end threads!

I understand the need to vent too, and have lately come to realize that, like you say, sometimes, even as much as we have so many questions, and naturally want answers "yesterday", it's indeed very good for ones health to just step back for awhile and take a break.

take care,

Dan

 

As far as the increased numbers of women having ME/CFS - I know I and a lot of others got it at menopause and a lot of girls get it around pubity, also women having babies can often suffer relapses. One Dr - can't remember who - says the hormone changes during these periods put our bodies into stress. Part of the reason men are less likely to get it, is they don't go through all the hormone stress we do. Sounds sensible to me. It is the stress in our bodies - and this can be caused by all manner of things, sometimes hormones changing is one of them.

 

That's how I interpret this too. When he says "the xmrv antibody negative", he is referring to those who are xmrv+, but haven't mounted an antibody response. In other words, if your not mounting an antibody response, your going to be more ill. He is also saying that the xmrv antibody positive are the ones responding best to Ampligen. That's how I am interpreting this.

Anxious to get my Serology results now

 

I agree that they were trying to imply serology-negative patients might still be xmrv pos without actually saying it.

 

XMRV +, Ampligen No help

i was tested positive for xmrv, including for antibodies. and ampligen only made me worse. it over-stimulated my immune system and i got a fever each time. i was hoping perhaps that could be a positive, giving my immune system a boost to fight off a possible virus, but that did not happen.

also, no others in my group were helped by ampligen either, tho i know others, at different sites, have been helped.

oh, and my cfs is a severe one. and mine started suddenly with mono.

fwiw.

 

cansado.....9 months and little improvement? interesting. i know of many who improved almost immediately and many who did not. its so strange. i used to correspond with a woman in europe who said some take 3 - 4 yrs of ampligen to recover.

i think i read somewhere that even andrea whittemore took a year to start to feel better the first time she took ampligen (but of course this info could be wrong).

perhaps the amount of damage to the immune system or co-infections make a difference?

 

Jim

thanks for the info. How long were u on ampligen?

 

i unfortunately got the placebo for the first phase, so i got the 6 months of ampligen at the end of the blinded trial.

btw, i too have low nk function.

 

Ok, Interesting.
My NK cell activity was 5 on a scale of 8-170 by the time anyone thought to check it.
Scary stuff.

 

I know of another patient who had the classic CFIDS markers, was on ampligen for 2 years and didn't improve symptomatically but did improve clinically. She's around my age (mid-20s)

She did say her experience was the exception rather than the rule at the Peterson clinic and most people in the IV room swore by it.

It's all a crapshoot until we figure out which set of biochemical markers is most important for success. I do not think it will be XMRV status.