XMRV Positive in the U.K.

[usedtobeperkytina]

Now that is the big question isn't it?

First thought is anti-viral drugs, being tested now, one such study already published. AZT showed affective in vitro, none of the other drugs tested (those used with HIV) worked.

Coffin said the nature of XMRV, that it doesn't replicate often, means drugs meant to hinder replication may not have much of an effect. This also adds to evidence that it isn't just XMRV causing the illness.

So we don't know what it means as far as treatment yet. I am using antiviral supplements, sleep aid, cortisol and synthroid. I will soon be adding Co Q10. Lots of water, fewer sweets and simple carbs and pacing with rest periods.

Since even some biological differences are noted in CFS patients, it may be that even when we know the cause and effect, treatments may vary to each patient. Again, there may be a dysfunction that is caused by XMRV (and possibly another factor) but the dysfunction continues even after the initial cause is gone. Basically, the body can't heal. This may explain why we are all so different in symptoms and even biological abnormalities. For example, many have multiple chemical sensitivity. I never did.

XMRV may not be the whole picture, but it looks like it may be the biggest part of it. So we will need many more studies as to the relationship between XMRV and CFS.

Tina

 

[Sparklehorse]

Now that is the big question isn't it?

First thought is anti-viral drugs, being tested now, one such study already published. AZT showed affective in vitro, none of the other drugs tested (those used with HIV) worked.

Coffin said the nature of XMRV, that it doesn't replicate often, means drugs meant to hinder replication may not have much of an effect. This also adds to evidence that it isn't just XMRV causing the illness.

So we don't know what it means as far as treatment yet. I am using antiviral supplements, sleep aid, cortisol and synthroid. I will soon be adding Co Q10. Lots of water, fewer sweets and simple carbs and pacing with rest periods.

Since even some biological differences are noted in CFS patients, it may be that even when we know the cause and effect, treatments may vary to each patient. Again, there may be a dysfunction that is caused by XMRV (and possibly another factor) but the dysfunction continues even after the initial cause is gone. Basically, the body can't heal. This may explain why we are all so different in symptoms and even biological abnormalities. For example, many have multiple chemical sensitivity. I never did.

XMRV may not be the whole picture, but it looks like it may be the biggest part of it. So we will need many more studies as to the relationship between XMRV and CFS.

Tina

Man this damned illness is so complicated! Thanks for your very informative and interesting comments.

 

[Jimk]

I was going to make a tongue-in-cheek remark that, of course since you are British you must have cognitively induced your positive test (wink, wink, nudge, nudge)... but I think I'll indulge instead in doing some psychological diagnosis of the British XMRV researchers: I would have to say, as a mental health professional myself, that they have been afflicted by an intellectual disorder called "premature capitulation." It happens sometimes to academics who are so anxious to maintain their pet theories that they "can't hold back," as they say, during the act of intellectual intercourse... er, discourse.

I'm actually about to cross the water to England soon, so perhaps with your news I should be more frightened knowing that I could "catch it" whilst traveling (see, I'm practicing my British). Oh, I forgot, I already probably have "it" anyways.

More seriously, I offer my support for your vindicating results, if not my congratulations. I have a hard time being happy for anyone with our affliction. I am, however, overjoyed that you have something definitive in terms of eventual treatment to look towards. So many of us have been taking shots in the dark for many years with one treatment or another.

 

[natasa778]

i think low copies can also cause disease. some people think viruses can cause disease even if they are not replicating..just by releasing proteins while they are latent.

Viral latency can change host gene expression, even in absence of viral proteins being produced

 

[calzy]

very funny Jimk...

 

[bullybeef]

Could I ask, if there is anyone based in the UK (and the Republic of Ireland) if they feel up to posting their results on this thread? The more prevalent XMRV is here in the UK, the more pressure can be placed upon the powers that be to introduce specific NHS testing in partnership with the WPI.

However, I understand this is a very personal, delicate and sensitive issue, so I completely understand if you wish to keep your result to yourself. So please don’t think you have to.

Cheers,

BB

 

[Knackered]

Could I ask, if there is anyone based in the UK (and the Republic of Ireland) if they feel up to posting their results on this thread? The more prevalent XMRV is here in the UK, the more pressure can be placed upon the powers that be to introduce specific NHS testing in partnership with the WPI.

However, I understand this is a very personal, delicate and sensitive issue, so I completely understand if you wish to keep your result to yourself. So please dont think you have too.

Cheers,

BB

I think DysautonomiaXMRV said he'd get his results today or yesterday, not sure whether he'll post them though.

 

[XAND]

Dysautonomia did you get your test results already?

Dysautonomia did you get your test results already? Can somebody confirm the source of that 60% of UK people that got a positive in the american lab? Will WPI disclose this information?

XMRV IgG Antibody test is out in the next 4-6 months I think from VIPdx.

As for the 67% of the WPI study in the initial first study having XMRV, that is very high indeed for patients who tell a doctor they are exhausted and have neuro symptoms with no other evidence. (If, for example one took 100 people in a room who 'think' or are 'told' (guessed at) they have MS (with no other test), and 67 of them tested positive on a blood test for MS - that would be a remarkable achievement). Especially, as once the test is refined and completed, the acccuracy will get higher. We are lead to believe the Antibody test for people with Neuro Immune disease leading to classic symptoms of ME CFIDS, runs up to the 80% rate when tested for XMRV.

The average joe public with Chronic Fatigue (told they have CFS) would never score this high for XMRV (67%) on PCR/Culture . Conversely the patients at the WPI no doubt have all sorts of horrible symptoms of organic disease - which XMRV would cause and which the Canadian Criteria for CFS allows for. The Wessely UK XMRV study, discounted anyone with organic disease, and used an invalid detection method. Hence they got 0%, which would be statistically impossible.

Seriously diseased people (rightly or wrongly) have been given the label 'CFS' - the same as people who are not organically ill, but psychiatrically ill, or just ill for other reasons. One can argue, (ironically) that people who test XMRV+ don't have CFS, but XMRV and have been misdiagnosed. I would agree.

1) So we have people saying Oi, hands of CFS you are mentally ill and I am not (fair enough).
2) So we have people saying Oi, hands of CFS you are not mentally ill and I am (fair enough as CFS Criteria allow for the mentally ill).
3) And we have people saying Oi, I don't have CFS, I have neuro immune disease but got the wrong label. (fair enough).

Allowing for this very real situation, you can see that no way in God's earth would 67% of the above test positive for XMRV.
You'd need to select group 3 at least.

67% tested positive for XMRV and it's so high because the WPI made sure, they were very sure these people had Neuro Immune disease beforehand, by using the Canadian Criteria for CFS, not some Criteria about being tired and having a headache and depression. (Which is now the average person's experience of 'CFS' thanks to very lax and poorly defined Criteria in use today).

In the UK, especially, there are people who are stroking their faces, and saying 'No' in their heads - and claiming to have CFS. If CFS is unexplained tiredness caused by neurosis then they do have CFS. If CFS is a neuro immune disease, then they do not. If CFS is unexplained organic disease, then they do not.

Would people who stroke their face or say 'no' to vanish symptoms away have a cancer causing immune supressing retrovirus causing significant inflammation and cardio respriatory symptoms etc etc? Nope. And if these people get tested for XMRV they won't have it. Many of these people are on this board if you read the sections of the forum. They are told they fit the criteria, so they have the same label as someone who has a tube up their genitals and cannot feel to pee due to nerve damage. Ludicrous, but that's the state of play.

People with Chronic viral infections, deficiencies, sleep disorders, won't have XMRV either, and they'll also test negative - despite being told they have CFS. Only a small percentage of people on this forum will be XMRV+ by the very logic of having an 'unexplained' illness with no specific single Criteria, and no other way to test for it. CFS is an idiotic word and should never have been used. It's a free for all, anyone can join the party - unless using Canadian Criteria.

Now we have (literally) countless reasons to have 'CFS' and people testing negative for XMRV which they needed to have to get help, and recognition from the medical profession.
It's a huge mess, and entirely caused by Government health agencies being infested with psychological theories. Theories that are alive and well today.

It causes friction to say the very least. One could argue quite rightly, this board is not about XMRV, but CFS and ME.

Certainly if I was XMRV+ I'd be an extreme minority on here, and that's no bad thing as until someone 'officially' changes what CFS is, then XMRV is not CFS or ME.
The good news is, when one does test positive, all the in-fighting and arguments end. People can allow people to have theories on mental processes and CBT, and whatever, as they are no longer in the group of people with the label and their life is no longer threatened by 'CFS' theories.

I imagine the feeling of being pulled out of the group of 'CFS' is like coming to a long exhausting fight, for everyone.

 

[Knackered]

Can someone please link me to the Canadian criteria or list the criteria in bullet point form.

Edit, just found it, seems I'd fit the Canadian criteria.

 

[coxy]

Hi, sorry i don't have the energy to keep going through this whole thread to see if anyone new has tested positive, is there anyway uk patients could have a separate poll for uk & other countrys for that matter that are xmrv positive or negative?

 

[Countrygirl]

Hi, sorry i don't have the energy to keep going through this whole thread to see if anyone new has tested positive, is there anyway uk patients could have a separate poll for uk & other countrys for that matter that are xmrv positive or negative?

Without checking,Coxy, I think it is one positive and two negative. I stand to be corrected, but can't trawl through all the posts.

Any news Dys.XMRV? Here's hoping you will get the result you want - I think...just possibly......your name is a slight clue.....

B.W.

C.G.

 

[DysautonomiaXMRV]

Dysautonomia did you get your test results already? Can somebody confirm the source of that 60% of UK people that got a positive in the american lab? Will WPI disclose this information?

No, sorry XAND, I do not have my result yet.
My Doctor is not back at work until tuesday 19th so I will have to wait until then, or longer.
(On the VIPdx blood form we have to put address of referring doctor and cannot have results sent direct to our homes).

I will post my result, with proof (photocopy of my form).
I will be totally honest, and still post evidence, even if it is negative.
There is no shame in being negative as it's only an initial test that's not even finalised yet.

All (except the immune) of my symptoms of explained by Dysautonomia, so I'm curious to see
if XMRV could cause Dysautonomia. Many people with Dysautonomia support people with 'CFS' or ME
but sensibly keep way out of the label of 'CFS' or ME -because they realise the stigma attached to it.

All one needs for a diagnosis of Dysautonomia is a TILT test in a Hospital, and preferably other
autonomic tests also. Out of principle I fight for ME 'CFS' patients by openly stating I have POTS. I could have thrown away the
label ME or 'CFS' a decade ago but chose to state I have both. (I honestly believe that ME 'CFS' causes
Dysautonomia, or the other way around) so it would be wrong to lie and pretend I don't have the label
ME/PVFS as I do.

Back to XMRV........60% positive from recent London group sent off to USA was what someone said online
on a forum, not published info sadly. The people who would know would be the company the UK people
used to send the blood off from. Maybe there was an 'insider' who got tipped off from VIPdx and/or read
patients results. Who knows.....

VIPdx could only confirm positive results in UK if a lab worker at the company searches through results, and matches them to addresses in the UK.
Presumably if this is done anonymously (no names) it doesn't breach confidentiality and is quite harmless. It would be good to know the numbers
of people testing positive who sent off the blood to the States.

I would imagine that this is logistically next to impossible, due to work load.
There must be thousands of people send off blood to VIPdx.

 

[ANGELONDUTY]

HELLO ALL............NEW HERE.

HAVE POSTED IN A FEW PLACES,SHORT POSTS...BAD DAY.

BUT.....I DID WANT TO REPORT IN...... THAT I HAVE TESTED .......POS TO XMRV-DNA.....NED-RHA (?)
( & FOR ALL HERE THAT HAVE TESTED NEG.....DON' T LET THAT DISCOURAGE U.........THERE'S REASONS FOR THAT...& U ARE ' STILL SICK ! ")

I LIVE IN USA IN NORHT CAROILINA. GREW UP IN HOUSTON TX. AGE 58.
SICK...........YEARS.
& HAVE BECOME ' A RESEARCH QUEEN ! '........THAT CAME OUT.. BREAT CANCER, 10 YRS AGO !

PS....PLEASE CK OUT SOME OF THE RESONS BEHIND THESE ILLNESSES..SOME POST HERE REG THAT ! ( THE TRUTH ' MUST PREVAIL ' W/ THIS !)

2nd.........VERY IMPORTANT.........SUPPORT THE WHITTEMORE PETERSON INSTUTITE ! THEY ARE PRIVATE ! & GETTING OUT THE " REAL STUFF "....! NO GOV.....$ ! !

SO BLESSING'S TO ALL........& I WILL LOOK FORWARD TO A CHAT ! ..... & SOME FRIENDS ! )
ANGELONDUTY

 

[V99]

ANGELONDUTY

Agreed, the truth will get out eventually.

 

[AndreaPring]

Hi Joyscobby,

I am starting up a post on my Facebook group created for all the results. I want to show that we are getting these positive results particularly in the UK. Would you have the honour of being the first to sign in and give us some details.
My blog is: http://www.dancingwiththesandman@blogspot.com and the Facebook group is: http://www.facebook.com/topic.php?topic=13614&uid=210561445782#/group.php?gid=210561445782 - the area for putting your results is under the discussion.

Thanks so much,
Andrea

 

[AndreaPring]

I've also created a simple poll at http://www.dancingwiththesandman.blogspot.com

Thanks again, this will help me compile the results.

 

[_Kim_]

I moved Dysautonomia's message and the responses to a new thread.

2nd XMRV Positive in the UK

 

[Indica]

This is really useful information.Thanks.

 

[free at last]

First congrats on getting the results you wanted Joyscobby, i can only imagine what a emotional ride that must be for you, one of the reasons i joined this forum after living with illness mostly on my own and not discussing with anyone other than my family was seeing the WPI paper. then i bumped into this forum, and a whole new world seemed to open up about trying to understand just what happebed 16 years ago ( and to the present ) The search for truth about this Has consumed me ever since. I was lucky enough to be part of the ashford 50, where apperantly 80 to 90% have tested positive by both the WPI and now the NIH. I await a result for my test, and am very nervourse. because to go through the things i did for that long, and test negative for every test the NHS did was both heartbreaking, and really pretty scary, because after that point, it was a case of your on your own now Jack, and left to deal with symptoms that i thought would eventually kill me. couldnt have been more scared at that point really. just felt very confused, scared and thrown on the trash heap of a CFS /ME diagnosis to deal with it on my own, and see what it eventually did. Now testing negative emotionaly i think i will be straight back on that scrap heap. And i so want to know my tormentor, if its not XMRV than i dont think i will ever know. Will be very confused amd despondent if that happens, im sure many can relate to these feelings.

Im also interested in the person asking about XMRV symptoms, onset of symptoms and how it progressed. if for no other reason, to determine if it really does fit the picture of my illness.
Which also brings me to this qoute

People with Chronic viral infections, deficiencies, sleep disorders, won't have XMRV either, and they'll also test negative - despite being told they have CFS. Only a small percentage of people on this forum will be XMRV+ by the very logic of having an 'unexplained' illness with no specific single Criteria, and no other way to test for it. CFS is an idiotic word and should never have been used. It's a free for all, anyone can join the party - unless using Canadian Criteria.

This strikes me as very true and is also very worring for the reasons outlined already.
But im not sure what kind of viral attacks could strike over a long period of time that would leave someone permantly ill. Having a sleep disorder im not sure has a lot to do with it, because that only started after the viral attacks with temps ( lots of them ) eventually leading to a chronic condition, but now with out temps
But still very ill, even to the point of turning green or pale white with nausea every other week for a very long time. So many symptoms its what i imagined aids to be like. Does this not fit the symptoms of xmrv infection can anyone say ? but if the qoute is correct then what other things behave like this other than a retro virus ? thanks for any input anyone
Congrats again on getting the result you wanted joyscobby i just want my result so at least i can figure this all out. seems like ive been trying to do that half my life
ps Anyone know when the ashford 50 results will be published, because thats when we will get our results apparently ?

 

[omerbasket]

I was lucky enough to be part of the ashford 50, where apperantly 80 to 90% have tested positive by both the WPI and now the NIH.

Wow, just a second fellow, you're saying that the NIH now checked these samples too? Because I don't think that we knew that until now (I mean, unless the fact that the samples were checked by the NCI too caused you to say that the NIH checked them, becuase the NCI is part of the NIH). Anyway, who at the NIH? Dr. Alter? Or perhaps it was actually Dr. Lo from the FDA?

By the way, from what was published until now it seems that WPI and the NCI found more than 60% of the patients to be positive for XMRV, but I don't remember them saying that it was actually 80%-90%. How do you know these figures?