Another member of the XMRV +tive club

free at last

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Yes I get the muscle twitching in my legs and buttocks a lot but all over really, have to laugh sometimes if its in the side of my chest it feel like a mouse stamping out a message with its little feet:) or should I not mention mice;)

Where do I think I got it - well I think I know in fact I'm positive it was from infected hormone injections for IVF treatment. Before that time I was a fit healthy active person, had horses, dogs used to drive all over the country at weekends to show them, after the treatment gradually went downhill, then got the stress and the virus which the XMRV needed to begin its dirty work.
looking back I can see the pattern, hard to when you are living it.
So thanks to the nuns who donated their urine for the hormone content and infected me:( That makes me sound such a b**ch and I was grateful at the time, they didn't know and the medical staff trying to help me didn't know - we do now and should be doing something about it not still arguing whether its all in the mind.
Lol Mary no mice mentioned around here is good for me
Very interesting that you also get this muscle problem ( from now on i may call it Marys dancing mice syndrome )
Seriously this really excites me to see others xmrv + that have this same problem, because if there is a nerve damage connection to xmrv producing this twitching, then clearly this not just the innocent carrier virus that some are suggesting. and could in some cases turn out to mean that ME/CFS type symptoms with muscle spasms might actually indicate xmrv infection ?

More needs to be discussed about this i think Mary, maybe a poll for example. one thing is for sure twitching is heavily implicated with a lot of ME/CFS paitents, i caught twitching from sleeping with some one. XMRV is heavily implicated with ME/CFS patients so does xmrv cause nerve spasms, in some or a lot of xmrv + patients
Interesting question Mary can you remember when your twitching started, was it within weeks of the injections ? and did you notice the twitching before you got ill like me ?

Cheers Sushi and Mary for discussing this, seems like clues can be got from interactions with each other maybe
 
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Sorry for the delay to your questions Silver M i sent a long one but the net ATE IT lol.
Its not easy answering your questions but ill try
Since the WPI did there groundbreaking study finding 68% ( then later somthing like 95% ) of 101 ME /CFS patients, there have been numerouse studys that have failed to find the virus, No one is sure yet exactly why, but certain theorys have been put foward poor pcr only testing ( the WPI Did 4 different tests to find the virus, not just pcr ) the patient selection may have been poor, meaning they have been suffering more from depression and fatigue, rather than CFS/ME chronic illness. geographic clustering of the virus in certain areas was another theory put foward for the negative studys. which i find unlikely as the wpi has found the virus a large percentage of 50 patients tested at Ashford middlesex, the blood was flown to the states for testing, and xmrv was found, even though two uk studys found zilch 0 ?

Contamination is something that some uk experts have been pushing a lot ( the recent papers you mention is a example ) But that is something strongly denied is the cause for the results of the wpi, as far as i can tell ( which dont mean much ) i tend to think there results are not contamination, another study done by the NIH in the states also found a retovirus in 32 out of 38 ( if i remember correctly ) ME/CFS patients the virus they found was a variant somewhat different, but from what i understand of the same family of retroviruses as xmrv, the conclusions from this study, were that yes ME/CFS patients did seem to be infected with a retrovirus, and that although the virus found was a little different, being 95% similar to xmrv suggested this result backed up the conclusions of the wpi group.

Another interesting thing is since then, xmrv has apperently been found in the NIH samples, which if true, suggests this really could be the answer a lot of us patients have been waiting for.

More studys are due soon to try and answer a lot of the questions you ask. Some patients have been taking anti retroviral drugs ( hiv drugs ) such as AZT to see if lowering the virus load improved there symptoms, there have been mixed results from that, so again we are not really sure about anything just yet. but more answers will becoming one way or another.

I personally belive its the cause of a lot, or most of my symptoms for 16 years including the muscle twitching, which as you can see im discussing with sushi, and Mary, trying to understand what xmrv can actually do to people. so question to you Silver M do you get muscle twitch ? i dont meant the occassional flicker in your eye ( everyone gets that occassionaly ) im talking chronic twitching where a whole muscle can be jumping away by itself ? Anyway hope this info helps. sorry it took so long to help clue up a bit about this virus
Free
Hi thanks for your reply,

Firstly to answer your question, yes I get muscle twitching, have always felt it was because of my inflamed CNS as I get sensory sensations as well, such as tingling, burning and creepy. I tend to get the twitching in my upper thighs. I wouldn't say it's any more annoying than any of my other symptoms, I am just aware of it when I get it.

With regards to the rest of your post, it seems from what you say, that the whole retrovirus thing is still very early days, at the moment? I think I understand it a little more. The only concerns I have is what it could mean to my family, with its possible 'infectious' implications. Could it be possible that we all have this retrovirus, and it just lays dormant, until something triggers it? I understand some viruses do behave that way...

Have non M.E/CFS patients been tested as well? Should I be tested, and if so do they do it in the UK? I did wonder whether or not to do this, because tbh it seems that even if they do find it in my blood, there isn't much at the moment, that can be done about it??

It certainly is quite mind boggling, and I will admit I find it a bit beyond my understanding, some of you guys seems almost like doctors yourselves when you talk about it, so all the 'language' for me is a bit confusing lol.

What i find a little confusing is why some institutions seem so intent on bashing the research, its almost like their trying to hide something, not wishing to appear to be a conspiracy buff or anything (which I'm not) but I often wondered if this whole things was a result of our environment today, and some of us are just so darn sensitive to all of it. I mean if you fill your goldfish bowl with rubbish, your goldfish is gonna get sick, and probably die right?
.
 

free at last

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Hi thanks for your reply,

Firstly to answer your question, yes I get muscle twitching, have always felt it was because of my inflamed CNS as I get sensory sensations as well, such as tingling, burning and creepy. I tend to get the twitching in my upper thighs. I wouldn't say it's any more annoying than any of my other symptoms, I am just aware of it when I get it.

With regards to the rest of your post, it seems from what you say, that the whole retrovirus thing is still very early days, at the moment? I think I understand it a little more. The only concerns I have is what it could mean to my family, with its possible 'infectious' implications. Could it be possible that we all have this retrovirus, and it just lays dormant, until something triggers it? I understand some viruses do behave that way...

Have non M.E/CFS patients been tested as well? Should I be tested, and if so do they do it in the UK? I did wonder whether or not to do this, because tbh it seems that even if they do find it in my blood, there isn't much at the moment, that can be done about it??

It certainly is quite mind boggling, and I will admit I find it a bit beyond my understanding, some of you guys seems almost like doctors yourselves when you talk about it, so all the 'language' for me is a bit confusing lol.

What i find a little confusing is why some institutions seem so intent on bashing the research, its almost like their trying to hide something, not wishing to appear to be a conspiracy buff or anything (which I'm not) but I often wondered if this whole things was a result of our environment today, and some of us are just so darn sensitive to all of it. I mean if you fill your goldfish bowl with rubbish, your goldfish is gonna get sick, and probably die right?
.

Hi again, yes i think if the virus is infecting Humans then im afraid it might be likely your partner has it, 50% of family members may infact have it. But i want to counter that rather disturbing news for you by saying me and my partner have been together over 20 years and she has not got ill with this, so dont go thinking just yet that you need to panic. also something i didnt mention was between 4% WPI and 6% NIH study healthy controls were infected, meaning anything between 4 and 6% ( Correct me if im wrong anyone) of healthy
people seem to also be carrying this virus. which at first seems reassuring for those healthy infected individuals.

But as you mention its possible certain triggers could lead to the virus becoming a problem at anytime. i may have carried this virus for about 15 years before i got ill. i belive my triggers may have been long term cannabis use ( it doesnt have to be that ) other triggers might be alcahol over a long period, chemical exposure mold exposure. lots of long term stress probably quite a few more i cant think of. then my second trigger after possibly carrying this virus for possibly years was some kind of virus attack, i had repeated flu like infections with temperatures, then the temperatures went, but the ill flu like attacks did not, and have continued to the present day.

though now i dont get them as much it doesnt last as long, and somewhat less strong than my first 5 years of illness with this. All of this is my guesswork, you need to take some of what i say with a pinch of salt as i could be wrong. Im just telling you what i ( and a few others on here ) are starting to belive
But your right i think about triggers, because if that part was nonsense then i dont think we get those healthy 4% xmrv infected people ?

I get the feeling you have so much to learn about the politics of ME in the uk. For many years Psychiatrists have been trying to tell our govement and GPs that ME/CFS is a psychiatric disorder. not a biological one. As such some prominent health care proffessionals have staked there intire career on these theorys, so of course if a virus is proven to be a cause, then they lose face, they lose there careers most likely.And really should be apolgizing to all of us, for trying to convince the world that this illness is all in our minds. Some psychatrists are even also working for insurance companys, and by keeping the ME illness a all in the mind illness. Insurance companys dont have to pay out as much money as they might have to, if proven to be biological disease. There is also a number of ME goverment documents that have been classified secret for the next 70 years.

It sounds like the xfiles i know. dont take my word for any of this, check up this information yourself. you will know i speak the truth. So there you have it. some in this country want to keep us as psychiatric patients, and they may not be lying when they do there negative studys, only the patients they chose for a xmrv study were ones who were more likely depressed with fatigue. as biological disease markers in some patients were screened out, and those sicker ( physically sicker ) patients were excluded from the study. Check info on professor Simon Wessley. Phew

Hope im helping you get up to speed with this mad world of ME. Its a crime against sick people is what it is. in time when you learn more i think you will agree. I dont know of any reliable testing in the uk google vidpx xmrv testing, thats the one most use. I was tested by the WPI and NCI One last thing its possible ( again there has been conflicting studys on this ) xmrv can cause cancer. sorry to tell you that. but yes its possible i think.
Cheers
 
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I have to say Freeatlast that I have never been treated by any of my doctors, Neuro or GP as if this was all in my head, in fact my Neuro made a point of telling me he defo did not think it was (except for the lesions of course lol), just that I was a difficult case, and that he was sure that at some point it would all become clear, he said I was in a medical sieve waiting to drop out 'his words'. My Neuro diagnosed me with M.E. My GP has been convinced that due to my high familarial (both sides of my family) 'auto immune' connections (proven by a geneticist) that that's what were dealing with, but they are frustratingly hard to diagnose. The only thing I find frustrating is they really have no idea how to handle this or how to treat it, and can only deal with symptoms. So I have been blessed I guess not to come across, so far any of those 'its all in your head' contingent.

I have a pretty open mind when it comes to all this, my grandfather was on Christmas Island (during the bomb testings), and even now the MOD wont accept responsibility for all the unusual deaths among the men there, covering their asses (he had Lupus and blood disorders due to radiation poisoning), so i am not in the least bit surprised that some contingents would try to do that, in this case. You only have to look at the history of MS to see how this happens.

I must admit, that even tho this is all a bit beyond me, I do find it fascinating, and am watching the research with interest, and hope that perhaps we will finally get some answers, that we all deserve!
 

Sushi

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Silvermane and others who cannot afford testing.
For those in the US, Medicare did cover both my XMRV tests at VIP. I was very surprised and of course this doesn't mean they will cover everyone's--but I do know one other whose tests were covered. I guess some of it depends on the person reviewing it at Medicare.

Any reports from private insurance about coverage?

Sushi