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XMRV Testing-FYI

Advocate

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Derisi Assay

The paragraphs below were posted on a listserv, and I have permission of the author to re-post here. The author said that he does not know if the Derisi Assay can detect the XMRV virus.
.........................................

A patient of Dr. Dan Peterson mentioned that he will getting the Derisi Assay soon. For those of you who are not familiar with the test, it tests for 70 different viruses.

The Derisi Lab( @ UCSF) was used by the CDC when the SARS outbreak occured to identify the virus casuing SARS. The report was featured on a investigative TV show like 20/20 a few years ago. (The report or transcript might be available to access on the internet, worth seeing.)

The Derisi lab has the genome of almost every virus known to exist in their data base, so I can see why Dr. Peterson would want to use that test on a CFS patient.

Sue B.
 

Andrew

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According to the Science article supplement, the subjects:
...included but were not limited to perturbations of the 2-5A synthetase/RNase L antiviral pathway, low natural killer cell cytotoxicity (as measured by standard diagnostic assays), and elevated cytokines particularly interleukin-6 and interleukin-8. In addition to these immunological abnormalities, the patients characteristically demonstrated impaired exercise performance with extremely low VO2 max measured on stress testing.
I wonder how many of use have been given these tests. I wonder if it would be worthwhile to get these tests.
 

Cort

Phoenix Rising Founder
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Good for you Kati!

In the latest article in the New York Times Dr. Mikovits was quoted as saying in the test will be ready within weeks not months (!)

I would note that that test will be a substantial revenue producer for the WPI - which of course will feed my back into the research; a win-win for everybody.

That statement that Andrew posted suggests that only perhaps 25 or 30% of the patients will test positive for this. Dr. Mikovits has been quoted as saying saying everybody. I hope the second is true.
 

Kati

Patient in training
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That statement that Andrew posted suggests that only perhaps 25 or 30% of the patients will test positive for this. Dr. Mikovits has been quoted as saying saying everybody. I hope the second is true.
I hope nobody is left behind... aside than CDC
 
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I think I must have been tested for this years ago

Many years ago, a friend referred me to Immunocomp Lab in Ga. for participation in a study and treatment, since my immune system was not working. They confirmed the incompetancy of the immune system cells I had, and how few in number they were. They told me that CFS was a form of leukemia that ruined the immune system. They treated me with IL2, TNF, GMCSF, making a vaccine, after I sent them my blood routinely. I injected the vaccine into my lymph nodes for 2 and 1/2 years. The wonderful MD treating me there died suddenly, and treatment ceased; they closed up. To continue treatment would have cost 5 or 6 thousand a month with another MD. The treatment made me feel like a "new person" each time I injected it. I believe it saved my life. Sounds like they knew about this virus then. They are describing it as a form of leukemia, as Immunocomp told me.
 

Andrew

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That statement that Andrew posted suggests that only perhaps 25 or 30% of the patients will test positive for this.
I don't remember getting this impression from anything I read or posted. If you are talking about the tests the subjects were given, the quote states that the sample was not limited to people who tested positive on those tests.
 
C

cold_taste_of_tears

Guest
I read on another forum from a friend that the forthcoming test for XMRV by VIP labs won't be availabe to Europeans due to the samples 'degrading in the post'. :confused:

Surely we can send it by plane within 24hrs to Nevada? Or even less.
 
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sicktoolong-thank you for posting

your treatment that helped you feel so good . I think this is very important. There's a drug called PROLEUKIN that is an IL2 in clinical trials for the treatment of chronic viral infections. Hopefully we'll get an acceptable treatment soon. Best wishes!
 
C

cold_taste_of_tears

Guest
Thank you Andrew.

I am guessing though that this is an 'American only' test, at least inititally.
Maybe I'm wrong, it would be incredible if it was available over the pond
but I would imagine the lab in the states is working overtime to produce
this so quickly and thus probably would expect an exclusive deal on it at first.

Fingers crossed we can all get it, at the end of the day the more ME CFS patients who report they have XMRV the better as the CDC will have to do something.

Maybe we can have a thread here on patients who are positive.
 

Kati

Patient in training
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I am guessing though that this is an 'American only' test,

I disagree with this- I think a lab will take a sample and the money regardless of nationality, as long as the sample arrives in the best shape possible. \

People send their samples all the time from Canada to USA, so I wouldn 't see it a problem.
 
C

cold_taste_of_tears

Guest
Near Miss?

I still think this is can be done for people in the UK, if sent promptly and stored at the correct (stable) temperature. I am hoping the director of marketing (with respect), may not be aware that not all patients would
simply 'post' the blood sample in a brown paper padded bag, but send it frozen on dry ice at great expense and having the blood prepared for transport in a local hospital maybe. There has to be a way, logistically.



However here is what I learnt from a friend....... :(

"Unfortunately, we cannot offer the test in Europe because of the time
difference and temperature changes the sample would experience and it
would be rendered unsuitable for analysis.

The test will be available in the USA in about 3-4 weeks as it is
undergoing final validation and licensing."


Marguerite Ross, Director, Marketing & Client Relations, VIP Dx /
Redlabs, Reno, NV,
 

Alexia

Senior Member
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Hi,

I live in Portugal and last year I sent some samples for testing to a lab in Seattle using DHL and it was there in 36 hours. It worked fine so I guess we living outside the USA could also have the test done unless the blood needs to be there in less then 24 hours.
 

Marylib

Senior Member
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Getting tested

Hi

Call me thick-headed, but I can't understand why anyone would need to be tested at this point, except to help researchers.

I suppose if you have extra money, maybe it is out of curiosity?

I guess most of us will wait until something is firmly established and a treatment is available. If this does pan out, we may need to save our pennies to afford an antiviral, eh?

Marylib
 

Tony

Still working on it all..
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I think we can safely say that there is no facility to test for xmrv antibodies in Australia....yet. Once the WPI finalise their test then the technology can probably be licensed to a lab willing to do it. I would think many would jump at the chance.
 
C

cold_taste_of_tears

Guest
Hi

Call me thick-headed, but I can't understand why anyone would need to be tested at this point, except to help researchers.

I suppose if you have extra money, maybe it is out of curiosity?


Hiya, here is my reply to you very valid question.
I'm not having a go at anyone here - just trying to explain the situation of why XMRV test will be a stunning day to so many people with ME (CFIDS).

It's long because it matters to me, to explain the situation, and because I care about the truth.

Firstly, I don't have the extra money as I don't work and never have. I'll have to get it paid through family generosity to start with. Thankfully, they support me.

For me personally, XMRV test and access to it, is about safety and staying alive. Over here in the UK, it's not un-common to get no health care at all from your GP (family physician). The government here have ordered that ME (CFIDS) is 'managed' not in hospitals, but in the community under a 5 minute consultation with a GP (family physician)! This is called 'Primary care'. ME (CFIDS) is to be managed like this, not 'Secondary care' (hospitals).

As we all know, the diagnostic equipment lies inside the walls of hospitals, the experts do also, and certainly not in a 12x12 room with your family GP who is running a mother and baby clinic, giving immunisations, and planning their next skiing holiday in the Alps.

The mind-set of a 'white coat' doctor (what I call a real doctor), is entirely different of a 'doctor' a GP who sits on a desk, makes phone calls, and gets called out to the occasional road traffic accident. A hospital doctor deals with life/death on a daily basis, and stands over people's beds, talks at length and isn't interrupted by an incessantly ringing desk phone.
These doctors, we are prevented from seeing. We see people who graduated 17 years ago and cannot spell ME (CFIDS) never mind, know or acknowledge what it is. This is at best unfortunate, and more realistic, criminal.
It is not possible to 'manage' a patient in a 5 minute chat, we need to be in hospitals and see a huge array of specialists. This is not possible under socialised medical care, simply too expensive.

This situation is futile, but it's how it is. It's total luck if you find someone on your side, and even if you do - the second you are referred 'into' care in hospitals (e.g. cardiologist, neurologist etc.) to the white coats - then you're often rejected anyway, as they don't believe or have 'time' to deal with 'someone as complex as you'. Even if they are perfectly kind, respectful people, they have another patient waiting, and so you are not in their mind. You can go 'back' to the family GP. Which is a dead end.

To reduce costs, each 'specialist' cannot order tests. They must 'refer' you to another specialist. This takes months (minimum 2/3 - usually 6). Up to 9 months to get this next appointment - due to the demand on the service.
This is unheard of in Canada. A GP (non specialist) can order any test he/she likes - they are, after all, a qualified doctor. This is not the case here.

Be prepared then to wait up to a year for an appointment with a highly respected doctor. Also be prepared to have an ambulance not given, you must pay cash. A 75 mile round trip costs my family around $1300. (Remember we are paying taxes already for a 24/7 364 day service).
Neurotics don’t have a 'clinical need' for an ambulance, and 'CFS/ME' is treated with behavioural therapy according to the government and it's 'evidence based' medicine.

If you fail, you are a failure. If you succeed on mental illness therapy, you are praised. I have been told to my face I am 'fool' and that I 'sabotage' their programme of 'rehabilitation' for relapsing on graded exercise. This again, is by the very top people in the UK who 'advise' the government of ME (CFIDS) and who claim 80% cure rate through psychiatry of severe ME patients.

So if you tell your general medical physician (in hospital) you have cardiac problems, and they agree you need an echocardiogram - they need to 'ask' a cardiologist to have the test. This takes time. Why? Well neurotics (they call ME CFIDS this), are put to the back of the cue. There is a system, who goes first, who goes last.

A 75 yr old who's a smoker, has 5 kids and had a life - they go first.
A 16 yr old with ME CFIDS who has nothing, they go last.

Period.

This is my experience both as an in-patient, and an outpatient.
In a ward, despite often arriving first, I am seen last. Always.
This is the reality of state health care that can treat you how you damn well want. Be lucky if you get any food. My ex-girlfriend has to bring me food, they (staff) don't have time if you miss meal times. If you get low blood sugar be prepared to have a panic attack and scramble for the candy bar - no nurse will come see you - you're officially insane/attention seeker with that label 'CFS/ME'. Again, this is my experience.

I'm a 6ft hairy ex mountain biker. I'm not a push over. Yet somehow I become this feeble little weed who the entire ward hates. Why? Because of what doctors write.

'Skips school to avoid sport'.
'His mother has no friends and those that do tell her lies'
'He is convinced he has some sort of immune disorder, brain disease'
'Bullied and weak'

Nurses read this, and nurses form their opinions very rapidly. It's their job.
Chinese whispers, spread. If one medic decides to 'do you' - then they will.
These words and read by the next person, and the next, and the next.

Being mad, crazy, neurotic a liar - then becomes part of your patient DNA.
I've had one Nurse actually throw an ECG in the bin (to hide the result), and deny she ever took it - all because we fell out. I dare not tell a soul, what if it happens again? Yes this happened once in nearly 20 years, but it happened.

Whilst I am in the ward, I am under her spell. I can't walk out, she is on night duty. So I watch my step. This is extremely stressful and very very scary - be you a man or a woman, an adult or a child. Why?

Because severe medical symptoms, effectively infantilise you. You become 100% dependent on staff, and 100% dependent on them to come to you in an emergency. I never reported that nurse, I could now maybe, I moved city to escape them.

l get an appointment eventually. Yet they can block the test (if they are hostile towards ME (CFIDS). Or they do it, find nothing and that's it - goodbye. NO CONSULTATION. You never get to meet them!!!!!
You meet a 'technician' not the consultant you wait up to a year to see.
So a total waste of time. Often they aren't there, or you see a junior doctor.
That's not good enough, I want to see the professor, or the consultant not someone newly qualified who knows nothing. Yet you have no choice, this is state health care. Choice does not exist, one size fits all.

This is all done to reduce waiting times, and costs.
You thus return (months later) to the white coat who is on your side - who shrugs, and says too bad. From here you go back to the family physician (GP), who says there is 'nothing wrong with your heart' and now any talk of chest pain can be stopped. Ok? As if you've been a naughty boy and should learn to behave.

You cannot walk (or wheel in) to a private hospital, even if you have a wad of cash. You have to get referred to a private hospital (from the state doctor - very very hard - they feel insulted).......or go on a mission and 'beg' for a private appointment. Only then if they agree to see you (they then inform the state doctor you are seeing them behind their back).

So you get there, and you're now paying cash (remember no health insurance plans exists for chronic disease in the UK).

You ask to see a cardiologist, they agree. Guess where you often go, or even see? The same state hospital already used and/or the same doctor!!!! They recognise you, repeat the test reluctantly, and send the 'evidence' back to your GP. It's hilarious in a kind of bad dream way. Yes you can avoid this by travelling out of county (state), but you can't when you're very sick as you can't travel - save charting an ambulance at great cost.

Now what would be the last resort - go to a private ER?
Guess what, private ER's do not exist in the UK - literally.

The few times I can get out of my home I never have blood pressure taken, pulse, or any other physical examination. No respiratory tests for shortness of breath. Nothing. This is despite going there talking of lymph node pain, temperatures, infection (sneezing) and other obvious physical problems that can be observed, visually.

I've had doctors tell me when I complained of men’s problems 'we can't all be porn stars'. This is his response. Imagine a female complaining of gynaecological issues and this is her response. It wouldn't happen. But CFIDS (ME) to some people is a joke. We end up joking and laughing (I play along to see the level of their hatred) and I actually laugh and smile with him.
Hence he ends up saying that. He wiped my injection site with his bare finger, I was shocked, but I took it on the chin like a 'man'. We're men together - we're hard and brave. (Doctor and I). I do this because this is two men together. I feel shame and gross embarrassment about the state I am in.
Severe weakness is the reverse of 'male' identity - it destroys your sexuality and your status of a man. And thus with another man who finds this amusing, I thus laugh everything off, to try and not look weak in front of him. I remember patting him on the back as he walked down the corridor.

I have no idea why I did this, other than some vague psychological reaction to memories of 'man ness' that disintegrated form me, many years ago.

I leave the room and think, did that scenario just happen, err, yes it did.
Yes it's rare, yes he's the only doctor who's ever done that, but he behaved in a stupid manner because he seems me as a neurotic 'wacky' guy. So I did this for him. He swore, I swore. We were like two teens in a parking lot smoking. I've never since met a doctor who downs Lucozade leans back in his chair and says the F word. This person, is in charge of 'CFS/ME' clinical services from where I used to live. He's influential.

He attends bio-medical conferences, I recognised his voice on a DVD I got!
I also remember giving him (at the time I didn't know he went to these talks) a leaflet on Dysautonomia/POTS in ME, and he leaned over and whispered it's our little secret, and he put it in the drawer in his office. He didn't say it as a joke either. He said don' tell anyone I have this information. Huh?
No one else has ever suggested I study existential philosophy - when asking about vertigo. He did. So in the time I saw him, what did he do for me? Precisely nothing. It was all a game.

If over the years I manage to get private tests done (e.g. from the USA)
I am told they don't recognise private tests. It's as bad as that. It's very hard to get blood tests taken, you have to get permission for the doctor (state) from a private nurse. They can and do block it, by saying they are merely encouraging you to somatise and 'obsess' over your disease.

That means no blood tests with an infection will be performed (other than at best a full blood count), no tests for asthma/shortness of breath, no tests for any new onset of symptoms - everything is put down to 'CFS/ME' which is put down to a mental illness. This means patients are unnecessarily kept in a severe state of disability. No cancer screening, no nothing. I have shown doctors of late, reduced oxygen saturation with shortness of breath. NOTHING has been done. Not even a letter back. This is how bad it is.
(I did this with a machine I got, at great expense). It saves the readings to your PC and you can download it and print off the results to a PDF file.
It's verified for medical use, it's not a toy. They know exactly what it is, and what it means.

In the USA you have something called an annual check up - to try and spot disease before it progresses - this is cheaper for insurance companies than to get a huge bill for a disease that has developed in the future.

Diabetics get an annual check up over here, and that's about it. Even this was hailed as some kind of incredible breakthrough discovery. Why? Because it has to be funded and the state has to find the money. Someone has to fund a diabetic nurse, an eye check up, a foot examination, and someone to take BP, weigh people and take blood. (This is all an annual check up is).

No one else gets this. The NHS (state health care) only does this, because diabetic are at grave risk of death if their disease is out of control and no one has checked. Disease like MS and ME (CFIDS) are a lot slower in general.

In the UK, having a check up (asking for one), is met with a response of 'why do you want one? or 'what do you think we will find?'. So severe patients are left to rot basically. In a paradoxical situation, the worse you get with ME (CFIDS) in the UK, the worse you are treated - as they are told you are neurotic and an attention seeker. A very common phrase I am told is 'So what do you want us to do?'. I have no idea, I'm not a doctor - is my response.

Even in hospital wards where I have been for over a year (not weeks) of my life, one is given an enforced CBT/GE/Pacing programme. Physio, or a psychiatrist/clinical psychologist. If you mention how ill you feel, you are told to stop speaking, as this is evidence you are 'somatising'. If your parents defend you, they blame them in your medical records, or try and prevent them from visiting you in hospital.

In my medical records it alludes to my mother may be poisoning me with steroids. I even have the blood test result for this. They've also tested me for lithium. I don't take lithium. It's a known drug for mania.

Remember, this is 'state' health care - they can ban you, you have no right to be in a hospital, they can discharge you. You do what they say, or else. Where else do I go, when bed bound? You aren't paying directly, but in taxes. There is no credit card being charged....so you have no ability to protest. If you do, you are censored, or in my case warned to keep your mouth shut, or in a psychiatric ward, warned they may drug you.

Remember, in the UK there is no private health insurance for chronic disease. A full blood count, ends up being $800, so unless one pays cash, it's impossible to access medical care.

Patients are thus put in danger, or in extreme danger in terms of having something as serious as chest pain, arrhythmias - and being refused referral to a cardiologist, even in ER. In ER they simply refuse to refer, they say go back to the GP. The GP is told 'CFS/ME' is a mental illness or 'long term tiredness' by the government, and so you get totally neglected.

This is my life, and this is why it is essential I get the test. The second I 'prove' a physical underlying cause - I will gain access to basic medical care - which has been my dream for nearly 20 years. I sit in car parks outside ER with chest pain, if it's not acute. Maybe for hours, well always for hours, but maybe the whole day. My parents come up to the hospital in another car, I just lay there with food and water and get pushed to the toilet in the hospital then come back to the car. I do this to protect my life, and I do it as I am mocked in ER, for being mentally ill, in the 'belief he has something wrong with his heart'. I have a positive diagnosis of Dysautonomia/POTS on a TILT test, and vaso-vagal syncope though! The discrimination and hatred towards me, never stops. It's not always, not everyone is like this, but I go to one hospital. The staff get to know you, you become (over the years), the guy who comes in 'all the time' and 'we've never found anything'. So you become a laughing stock.

The doctors here, genuinely think CFS/ME is a mental health problem and this is how patients are locked in psychiatric wards, despite not even suffering from depression or being sectioned under the mental health act! I agreed to this (black mailed) on condition I get an MRI scan. That's why I agreed to be locked up. I did however think they'd let me out, but they didn't.

That is my life, and other peoples in this country. A test changes everything. A test means I will not be locked away again, or have to humiliate and worsen myself to please a room of psychiatrists and doctors who think I have 'unexplained physical symptoms'.

For my own safety I avoid seeking medical care, due to the fact it is written in my medical records I 'seek medical care' = hysterical.

They actually mock me that I am convinced I am physically ill. When this happens to you, despite having a diagnosis of SVT (Heart Arrhythmia), and Dysautonomia on top of severe ME - then each day is terrifying. I never got out my front door, and live next to a hospital. I am refused diazepam for anxiety. I get 4mg per month, to 'travel' to the doctors, which is 300 yards up the road. I am told to snap out of it. I have Dysautonomia,
I cannot snap out of it - the condition makes me nervous, and react sub normally to stress, effort, standing up, etc. This is ignored.

If you warn them they are being cruel they threaten you with expulsion. I cannot go anywhere else. Not that I 'go' anywhere anyway.

I think people in America simply cannot believe this is legal, but in a socialised medical care system it is legal - the state can do what they want to you, and they did and do, to me and others because this started when I was a teenager and now I'm middle aged. (That's literally pages and pages of awful comments and lies about me and my family - entirely fabricated). I have tried legally to have these comments removed, I cannot due to their claim they are merely 'opinions' of me and not statements of fact. I thus cannot take them to court.

It took me 12 years to get a brain scan for example, and for many years I ate off the floor. I resort to urinating in soda pop bottles and having my parents (or no ex girlfriend) parade my bodily fluids to the sluice room. All the other patients who cannot make to a toilet, get a nurse. This is find humiliating. The nurses are told to ignore you, I have this in writing. 'limit patient contact', and 'write down everything he says'. When was the last time you were in hospital and someone ordered that?! (This was an AIDS ward, not a psychiatric unit).

All this neglect is due to the fact they believe I can quite easily get out of bed and walk to the toilet like 'all the other patients'. I am always told of ME (CFIDS) patients who come in bed ridden and walk out the hospital in weeks - through the wonders of behavioural therapy.

This would not have happened if I had a basic 'test' to show an underlying severe immune defect.

I had an RNase-L test 10 years ago, they said in writing 'He seems to think some wonder drug will cure him'. When I mentioned Ampligen.

When I show them my Natural Killer Cell test, again in writing they say they will show this to an immunologist (they never did) and in the mean time, recommended anti depressants.

With XMRV I will announce to the whole room of outpatients that I am infected, and they'd better not come near me. They'll either lock me up again, or actually listen to me and given me access to an immunologist - remember the last one shut me in an AIDS ward and did nothing and ordered people (staff) not to talk to me. This person just happens to be directly involved with the government 'plan' for ME (CFIDS) using CBT/GE/Pacing and they believe ME (CFIDS) is a 'psycho-social' phenomena.

Welcome to great Britain, and very soon (thanks to the CDC) welcome to the United States as I see these doctors are being used by a certain Bill Reeves.
These people who abused me, are now the new angels of the CDC.

XMRV is going to liberate us, and save us from the angels of death.

Example
http://www.youtube.com/watch?v=7mZMpvtD3rg

Example
http://www.youtube.com/watch?v=cDeu_OlMivU

Example
http://www.youtube.com/watch?v=DNucQzY_fG4

Example
http://www.youtube.com/watch?v=NvA9lxfAQKM

Example
http://www.youtube.com/watch?v=BFU1DjKnJAE
 

Kati

Patient in training
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19,630
Hi

Call me thick-headed, but I can't understand why anyone would need to be tested at this point, except to help researchers.

I suppose if you have extra money, maybe it is out of curiosity?

I guess most of us will wait until something is firmly established and a treatment is available. If this does pan out, we may need to save our pennies to afford an antiviral, eh?

Marylib
Validation- if nothing shows up in the blood work your dr is ordering, your dr is doubting there is something wrong with you, ou got to prove the insurance disability there is something wrong with you, this is the perfect test to be done.