WPI UK XMRV testing/study

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Yes, Diva, she said we would get our individual results by letter.

I wondered if there would be a questionnaire - seems odd otherwise - they could be testing anyone.

Jenny
That's great to get the results. I think what UKXRMV is saying that if you are negative then it could be on your NHS records and that could "prove" in future that you're not ill - correct me if that's wrong.

I would like the results sent to me & I'll decide if I share the results with the GP.

Yes it's a bit too vague isn't it with regard to their testing criteria. Hopefully more news to come soon.
 

coxy

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i'd just like to point out that patients in the uk as far as i know may not even know what criteria they've been diagnosed under, i certainly have never been informed of it, & i was diagnosed by a so called reputable neurologist.
 

bullybeef

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I have emailed my consultant's secretary to let him know I am taking the test and to ask him by what criteria I was diagnosed. Looking forward to his response. He is highly regarding and had to move hospitals because he views ME as a physiological disorder. But it would be interesting to see how he feels about me taking the test.

Personally, I would want my results sending directly to myself. It is a good point that if I’m negative, my GP and consultant need not know, for the time being.

I asked this question elsewhere, does anyone know whether they would do both the serology and culture test?
 
K

Knackered

Guest
If XMRV is the cause and you're Canadian Criteria with a viral onset I don't think there's anything to worry about. The only thing that worries me is not knowing how on earth I could have got a retrovirus, I got the illness in my early 20's so I've never really had that many sexual partners, I've never had a blood transfusion or anything like that either.

Bullybeef:
http://chronicfatigue.about.com/od/diagnosingfmscfs/a/cfs_canadian.htm Look here. It fits me like a glove, even down to the frequent urination and IBS.
 

bullybeef

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If XMRV is the cause and you're Canadian Criteria with a viral onset I don't think there's anything to worry about. The only thing that worries me is not knowing how on earth I could have got a retrovirus, I got the illness in my early 20's so I've never really had that many sexual partners, I've never had a blood transfusion or anything like that either.

Bullybeef:
http://chronicfatigue.about.com/od/diagnosingfmscfs/a/cfs_canadian.htm Look here. It fits me like a glove, even down to the frequent urination and IBS.
Thanks for the link.

Ever since I felt like there was something wrong, I had many viral infections over a 3-4 year period. I had some blood tests done recently that show widespread inflammation and increased cholesterol. I have been told they could be ME biomarkers, although very unspecific.

Ironically, I was diagnosed with colitis (although the consultant said is was the normal) prior to my ME diagnosis. Abdominal pains are one of my strongest symptoms and I have been having some severe pains over the last few days.
 
K

Knackered

Guest
Thanks for the link.

Ever since I felt like there was something wrong, I had many viral infections over a 3-4 year period. I had some blood tests done recently that show widespread inflammation and increased cholesterol. I have been told they could be ME biomarkers, although very unspecific.

Ironically, I was diagnosed with colitis (although the consultant said is was the ‘normal’) prior to my ME diagnosis. Abdominal pains are one of my strongest symptoms and I have been having some severe pains over the last few days.
I think most people who have been testing positive for XMRV have been people who can pinpoint the start of their illness to a single event, I was hospitalised with a virus that I never recovered from for example. Dr Judy said she believes XMRV is able to become active after a massive assault to the immune system. I've spoken to people from the UK on this forum who are positive and they fit Canadian criteria almost perfecftly with a specific viral onset.
 

maryb

iherb code TAK122
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I've spoken to people from the UK on this forum who are positive and they fit Canadian criteria almost perfecftly with a specific viral onset.
Mine was following a severe viral infection, am hoping that doesn't mean I will test positive, but I suppose you have to accept the result:(
I've never had a blood transfusion either.
 
G

Gerwyn

Guest
Thanks for the link.

Ever since I felt like there was something wrong, I had many viral infections over a 3-4 year period. I had some blood tests done recently that show widespread inflammation and increased cholesterol. I have been told they could be ME biomarkers, although very unspecific.

Ironically, I was diagnosed with colitis (although the consultant said is was the ‘normal’) prior to my ME diagnosis. Abdominal pains are one of my strongest symptoms and I have been having some severe pains over the last few days.
my cholesterol has gone thru the roof how did your tests show inflammation
 
K

Knackered

Guest
Mine was following a severe viral infection, am hoping that doesn't mean I will test positive, but I suppose you have to accept the result:(
I've never had a blood transfusion either.
I wouldn't worry Mary, if you do test positive there's at least chance for recovery in the future.
 

gracenote

All shall be well . . .
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I think most people who have been testing positive for XMRV have been people who can pinpoint the start of their illness to a single event, I was hospitalised with a virus that I never recovered from for example. Dr Judy said she believes XMRV is able to become active after a massive assault to the immune system. I've spoken to people from the UK on this forum who are positive and they fit Canadian criteria almost perfecftly with a specific viral onset.
I fit the Canadian criteria, but I can't pinpoint the start of my illness to a single viral event.

I have no idea where XMRV fits into my picture.
 

gracenote

All shall be well . . .
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Did it just come on gradually? Do you feel like you've always got the flu?
I became very fatigued during my first pregnancy and never regained my previous energy level, but at that time it was just fatigue. (Eventually, they found I had Hashimoto's.) It was 7 years later, in 1982 after my third child was two, that I crashed.

There had been a couple of times, right before my crash, when I became very reactive after driving home with my car windows rolled down. Although I'd never had any sensitivities or allergies in the past, I would be exhausted and my whole body would ache for a couple of hours. Around that time (and it's hard to piece it all together in retrospect), my then husband got some sort of virus and became very ill for a couple of days and then got completely over it. For me it felt more like I kept getting a flu that never made me really sick, but that would go away and then come back, but never really leave.

Within a few months, I went from being an active mother, volunteer, and part-time student, to becoming mostly housebound (though not bedbound), unable to think, quite chemically sensitive, and all the rest of the classic CFS symptoms.

The first doctor that diagnosed me with CFS thought it had probably started back in 1975. Other than pregnancy, and a lot of personal stress at that time, I don't know of any other factors that could have triggered this illness. I did have a month long flu, in the spring of 1972, that was hitting many people very hard, but I recovered completely from that.

As I said, I have no idea where XMRV fits into my picture.
 

MEKoan

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I'm so happy for all of you!

This is a brilliant stroke on so many levels. They are not idiots and would not feel this degree of confidence were it not warranted. They are addressing the issue head on and involving an off site lab. Since this is not a study simply including a number of people who most probably have ME/CFS will suffice given that the point of the exercise is to establish the presence of XMRV in the population and not to determine the % of PWME infected.

Brilliant!

It's about time you guys got a break!

I'm so happy!!!
 

bullybeef

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my cholesterol has gone thru the roof how did your tests show inflammation
Hi Gerwyn,

My serum C reactive protein levels (CRP) was high and my erythrocyte sedimentation rate (ESR) were high. My GP suggested these results prove hgh rates of inflammation, but they aren't specific. The results don't show exactly were the inflammation is.

I also had two separate readings showing I also have alergies. Plus, three readings showing low blood count, and like I said about the liver function test. But I showed no evidence of EBV. I am awaiting my next appointment with my consultant to discuss these results.

Incidentally, I found these blood tests on the NICE website!! That is why my GP agreed to do them.

Here's the full list:

Investigations recommended by the UK National Institute of Clinical Excellence to exclude medical causes of chronic fatigue:

Tests that should usually be done:

urinalysis for protein, blood and glucose
full blood count
urea and electrolytes
liver function
thyroid function
erythrocyte sedimentation rate or plasma viscosity
C-reactive protein
random blood glucose
serum creatinine
screening blood tests for gluten sensitivity
serum calcium
creatine kinase
assessment of serum ferritin levels (children and young people only).

Additional serology tests that should only be done if the history suggests the possibility of a recent infection:

chronic bacterial infections, such as borreliosis
chronic viral infections, such as HIV or hepatitis B or C
acute viral infections, such as infectious mononucleosis (use heterophile antibody tests)
latent infections, such as toxoplasmosis, Epstein-Barr virus or cytomegalovirus.
 

willow

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Brilliant news that JM and WPI are keen to prove XMRV exists here.

Does anyone know what precisely we would be consenting to when we give our blood? Is it purely for XMRV testing or might it be used for other purposes too, e.g. genotyping?

What happened in the US? Did you have a consent form to sign?

I trust her and her motives are admirable, but some people's aren't.... And it's always good to know what you're getting in to.

Thanks, I don't want to trouble Judy again if I don't need to.
 

ukxmrv

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Hi Willow and all,

I sent an email to Dr Judy M with some questions (including consent) and she said that she is flooded under the emails.

She has asked for people to hold fire for a little while and let her finalise the study.

For anyone concerned about confidentiality, results will go to the PATIENT only

She has many emails to answer from people asking to join the study. Don't despair, she will try to include everyone so please don't email again
 

mermaid

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Hi all. Greetings from another Endlander - well right at the end of Endland as far west as possible. Thank you for the greetings in the thread from Countrygirl, and pm from fingers. I wrote this note last night and then went to send it and it was black hole time for a while as the forum was sorted out.

Anyway I dithered about the testing and assumed I was far too late - have numerous problems in getting tested as so far away from anyone, no car, no money, not well to travel, but what the heck, I emailed in the end last night and got accepted along with the rest. Will see what develops in the next few weeks .....