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Am I the only one who hopes that XMRV is not the cause of CFS/ME

Cort

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I'm always slowly improving and I think I will continue to but sure, I hope XMRV is it; if its XMRV then they can and will study it and will find out a way to deal with it. I think it would be FANTASTIC to have a retrovirus :). Better that than a multi-systemic disorder that our research community is not well adapted to research. Just my two cents.
 

VillageLife

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I hope XMRV is it; if its XMRV then they can and will study it and will find out a way to deal with it. I think it would be FANTASTIC to have a retrovirus :). Better that than a multi-systemic disorder that our research community is not well adapted to research. Just my two cents.
I second that!!
 
C

Cloud

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For myself, it may be best if xmrv turns out to be insignificant for a couple reasons. First of all, I have been making significant improvements without addressing the xmrv directly. Secondly, it's likely I wouldn't be able to tolerate the anti-retroviral meds anyhow. So, for my own interests, it would seem best to have xmrv turn out insignificant. But I have to agree that for our community as a whole, it would be best to finally have a single cause that can be addressed directly and would encourage this new momentum of recognition and research to continue.
 
B

bluebell

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TWhat would be a worry is people diagnosed with ME but are subsequently found to be conclusively XMRV negative. That maybe a big problem in long term.
I think about this a lot. It's possible that XMRV negative folks might be left out in the cold (or, worse, be pointed to by the psych folks - "oh, wait - THOSE are the people we were talking about). But it could just as well go the other way. Once it's shown that people don't just sit in bed moaning "Argh" for no reason, clinicians might be willing to spend more time trying to figure out what is going on in a patient who is XMRV negative. Certainly researchers would be suspicious about another pathogen and research money might flow. I don't think a whole lot of anxiety is warranted - things basically could not get worse, so I assume good news on the XMRV front would be good news all around.
 
C

Cloud

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VIP has been cranking out some % of xmrv- results on people diagnosed with ME/CFS by qualified docs all along. Like all the other questions, we just have to wait on the science....but unless they were getting some false negatives, it doesn't appear that xmrv could be the sole cause of ME/CFS. Yet, I do suspect that Dr Judy is right in that we may be looking at the worst infectious disease epidemic in US history.
 
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From what I understand XMRV acts differently than compared to HIV and HTLV. I think XMRV goes dormant and then can be activated.

I think of it like the Vietnam War, where the immune system battles, the enemy makes an attack, the immune system responds, but can't do away with it. So there is a see saw affect.

Like in the Vietman War, the virus hides in tissue and doesn't spend a lot of time out in the open (in the blood).

This would explain why it was only discovered in 2006. If it was open and constantly active, it would have been found before now.

But, I suspect, my intuition, is that there are more retroviruses that act similar to XMRV. We still need to resolve the DeFreitas question.

All of these different retroviruses may be causing different forms of CFS and Fibromyalgia.

Tina
 

bullybeef

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The rumour I have heard is VIP will retest negs using the new serology test. The sooner false negs can be ruled out, better. I do wonder if they had the same issue with HIV, because the most used HIV test is the serology test.
 

Daffodil

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with HIV it took them about 3 yrs to come up with a very accurate serology test.

did you guys hear about the 3 documented cases where HIV was passed on to a child by the mother pre-chewing food for the baby?
 

Sean

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I think about this a lot. It's possible that XMRV negative folks might be left out in the cold (or, worse, be pointed to by the psych folks - "oh, wait - THOSE are the people we were talking about). But it could just as well go the other way. Once it's shown that people don't just sit in bed moaning "Argh" for no reason, clinicians might be willing to spend more time trying to figure out what is going on in a patient who is XMRV negative. Certainly researchers would be suspicious about another pathogen and research money might flow. I don't think a whole lot of anxiety is warranted - things basically could not get worse, so I assume good news on the XMRV front would be good news all around.
Good point.
 

anciendaze

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vague diagnoses

I suspect part of the resistance to the idea that CFS/ME is an infectious organic disease comes from the common failure by some psychiatrists to exclude organic problems. We keep worrying about vague diagnostic criteria diluting research results on CFS. We don't normally consider that vagueness works both ways. People with organic illness do turn up in psychiatric wards. If Wilson's disease, just to pick a wild example, did not produce a distinctive copper ring on the eye, many patients with that problem would be diagnosed as having a primary mental illness with somatization. Some do turn up in mental wards, anyway.
 
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It would be impossible with today's science to currently 'cure' any case of decades long severe ME , due to the tissue damage caused by excessive free radicals.
I'm going to assume, for the sake of my sanity that you are wrong. ;)

The fact is that we just don't know for sure - the one thing we do know for sure is that the amount of research being done is practically nothing compared to the impact of this disease. This is a fact we should be telling to almost everyone we meet.
 

bullybeef

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I do suspect the shrinks are only looking for plausible excuses why ME is a physcological disorder, we know that they know it isn't. To go by the book they have to give reasons why it is, It's just baloney. Remember it is all down to money, and to reliably reject disability/insurance claims.
 

free at last

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xmrv Is something that has drawn me into this forum, after never really getting involved with ME groups. I searched for years to understand a cause, then xmrv dangles a carrot in front of my face, giving me a possible explanation for the illness, and a reason why i had to suffer with little help from doctors, I always belived a virus was to blame because of the way the illness onset, but of course was that virus xmrv ? what i find interesting is this, if xmrv was the cause of my early viral attacks leading to the diagnosis of ME, Then how come the primates infected with xmrv did not develop fevers and flu like attacks ? either one has to have been infected years before, and it takes so many years for the virus to kick in ? or xmrv can not by itself produce these type of flu like attacks leading to chronic ME /CFS type illness ( both of these scenarios could account for the healthy xmrv positive population ) or i am not infected with xmrv and it is not a cause of the viral like illness that lead to chronic ME symptoms for many years.

Its possible i was infected early on ( as a young man ) then caught another virus, and xmrv then does something else, the two strike theory others here have mentioned. I know this, if xmrv is causative of ME /CFS and if i was diagnosed correctly, and if i have xmrv. Then the virus does not seem to destroy the host at all, but seems to
have a initiall abillty to cause or help cause flu like fevers leading to chronic illness.

But the immune system over time seems to strike ( it takes years ) a balancing act of letting the virus stay at certain levels within the body, when those levels become critical the body mounts a defensive, and puts it to bed, untill such time xmrv mounts another attack, its also possible a gradual release of cytokins into the blood stream occur daily weekly ect, as a direct response of the immune system trying to live in harmony with this lifelong virus. over many years ( say 15 ) the immune system actually gets pretty good at either mounting frequent mild immune attacks responses against xmrv keeping the status quo

Or the immune system generally teaches itself over time, not to react too much against the virus, because it has learned the battle is futile. But still the immune response does occur, just not as much ( most likely mild frequent immune responnses against xmrv ) How do i know all this, because for arguments sake 1 im assuming i am xmrv positive, 2 i am assuming its causative either directly or the two strike theory ( xmrv weakens the immune system leaving it open to infections ) yes even yeast type infections could be a problem with this senario. ( i have had these problems, still do ) 3 i have recovered quite a lot in the last few years, argueing that the body can strike a deal with xmrv, which makes sense because of the healthy xmrv population.

So much of this makes perfect sense yet somethings do not. im bothered that the primates didnt produce fever when infected with xmrv, but of course they shouldnt because of the healthy xmrv positive people we know about. either xmrv does indeed take time to develop into a fever producing illness or it takes time to weaken the immune system so infections become more dominent, and or once this happens, our immune systems actually learn over time how to live in harmony with xmrv.


Maybe the abillty to live in harmony, is the key here folks, explaining healthy xmrv people, no fever in primates, and the abillty for chronic illness to improve, once xmrv goes problematic in the immune system

Should add i dont have a clue what the hell im going on about. But hope other more knowledgable people can see my points, and pick up clues from me trying so hard to figure this out, through my life experiance. Yes i hope its Xmrv It would explain my life, and reasons for having that life, and if i relapse, could offer hope for me PHEW. Not sure what other hope there is really, the science paper really was that exciting wasnt it, its not jumping on the bandwagon, its seeing exciting evidence suggesting xmrv is indeed striking a immune balance harmony with our immune systems, though its possible not all immune systems will react the same ? lifes full of guesswork.
 
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Firefly, I don't know if it will make you feel better, but my husband of thirty seven years does not have ME/CFS despite me being sick when we married.

Of course, I don't know if he has XMRV (or if I do!) but in all the years I have known patients, I have never come across a couple where one became ill after they got involved. I am not saying it doesn't happen but it is not common. Nowhere like AIDS.

The normal HIV precautions should be enough. They are sensible anyway for a new relationship because you don't want to get an STD anyway.

This is such a time of transition it is very difficult for you. In ten years time we will know where we are and there will be guidelines we can follow. I hope that you find a way through it all.

Mithriel
Thanks for the kind words and good thoughts, Mithriel. Yes, I'm looking forward to better days and more clarity ahead, and hanging in there with the present uncertainty. Here's hoping for speedy answers.
 

ixchelkali

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I think about this a lot. It's possible that XMRV negative folks might be left out in the cold (or, worse, be pointed to by the psych folks - "oh, wait - THOSE are the people we were talking about).
You just put your finger on my secret nightmare scenario. What that nasty little voice that whispers to me in the wee small hours of the morning.
 

free at last

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What Bluebell said, I never thought everyone with the diagnosis of ME CFS/ has the same illness, seems obviouse to me that is not the case, truth be told i belive many different conditions could be causing overlapping symptoms that doctors percieve as ME CFS, but im not sure that makes it so at all.

From that veiwpoint its likely not everyone is going to test positive for xmrv, and i reckon it is a subset that could be getting ill with this. That doesnt do a lot for those left behind if xmrv turns out to be a big picture for a subset, unfortunate yes. But it can happen to any of us, i dont yet know if im positive. and i was left behind before, so it might happen again.

If there is different medical conditions causing symptoms to overlap, in people all diagnosed with ME CFS, then it may well turn into hunt your condition. after some may have found theres ( xmrv )

unfortunate for those still searching, but who said life was easy. This is all hypothetical as was my trying to make sense of the xmrv discrepencies, asssuming im infected, and matching my lifes experiances. Dont see a lot of that happening. I feel it could really show us some things, as could the poll and symptom checker. Its no use wishing for a easier illness. if its xmrv then thats it. if its not were in the dark again. I hate that dark place. I hope its our truth. if not i think i will go to my grave never knowing. But thats what i thought was going to happen. untill a carrot called xmrv was dangled in front of my hopeful face. Apologies letting the discussion drift a little, but once youve said no i dont want it. or yes it would explain everything. then some pretty important things can be discussed maybe showing real insights here. But i shouldnt probably be doing it, as i know so very little how these things work.

Was just hoping i made a little sense, that others who understand these things might think ahhh thats actually quite interesting, judging from the response as usual. i dont probably know enough. But my heart aches to try. apologies for making little sense then
 
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Your Not the Only One

I am conflicted over the whole XMRV thing. My husband, my son, and I are all sick. We all have been diagnosed with FMS and my husband and I have also been diagnosed with CFS. I have the VIDPX tests sitting on my table. If it were only me, I would have gotten the blood test done a long time ago. However, I am reluctant because of my son. I don't want him to have to live with knowing he has a contagious virus if this test comes out positive. Further, now they are saying it is not an STD and that it can be passed by saliva during a flare up. What if we all have this and the government decides to suddenly take it seriously. My husband and I work at a University. Will that mean the end of our jobs?

Have ya'all ever watched the comedian Chris Rock? He has a scit where he talks about AIDS and how the drug companies haven't cured anything serious since polio because there is no money in it. There is more money in giving people pills to treat the symptoms for the rest of their lives, even if the pills don't completely treat the disease. When you think about it, this makes sense. I wonder if that will be the case for XMRV?

On the one hand, I am excited that they are having some success in treating CFIDS/ME with drugs used to treat HIV and certain herpes infections (EBV and HHV-6). My family may be able to go on and lead a much more normal life. But, I am doubting that in the U.S. the insurance companies will agree to pay for these drugs for us.

I think we all have a long fight ahead of us, if XMRV ends up being the cause of ME/CFIDS.
 

Mithriel

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Polio was "cured" by a vaccine and there have been lots since then.

I sympathise with your worry about your jobs and your son but I think everyone deserves to know the truth about themselves. It used to be standard medical practise not to tell patients that they had cancer or things like MS but those days are gone.

If any of us have a retrovirus it doesn't matter whether we know we are infectious or not.

Mithriel
 

heapsreal

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Conspiracy theory which i lean towards is pills for symptoms, no money in curing illnesses it just puts doctors out of work, mmmmmm. CBT for cfs there guarenteed a number of visits with this sort of treatment, more $$$$$$$$$$ for the psychs. It seems the only people making real ground in cfs are those directly affected by it. Dr lerner had cfs, dr chia's son had cfs, im sure list go's on. I think we need more doctors to get cfs then we would have more people looking for a cure, lol