2nd XMRV Positive in the UK

[bullybeef]

It is really amazing that you have 'come out' and allow us the knowledge of XMRV prevalence in the UK. Something I imagine is at a quite difficult thing to process. I also understand how difficult it is for those people whom wish to remain anonymous. You probably don't know how to understand this change in your diagnosis. I wish you all the luck in the world.

If I could ask a question: Has you GP or consultant changed your diagnosis from ME/CFS to XMRV positive?

 

[Countrygirl]

XMRV in U.K.

Dys, just catching up with your remarkable news :victory: :victory: :victory: Thank you so much for sharing this. I do hope that this great result will bring about positive changes for you. :Retro smile:

What is the reaction of your G.P. to this? or or :innocent1: or :worried: or even :victory: ?

Don't be away for too long. We need you. Have a good :sofa:.

With my very best wishes and :Sign Good one:

C.G.

 

[joyscobby]

Dys. is on a well deserved time out so being a week on and now a bit more with it I will answer. Apart from Knowing my status I have not spoke to my GP about it as he is power less to do anything. There is no place for him to refer me to. After all XMRV allegidly does not exist in the UK and they are 1000% sure of that. The powers that be who have been denying us for years are denying us even further. Perhaps, they are now thinking well 998%, or the true statistacil equivelant, but they will never admit it.

On a personal note I was at my practice yesterday but not to see my GP but a routine blood draw. The usual stuff done every year that never shows up anything. I had to try and explain to the nurse that I have tested positive for a retrovirus that is not meant to exist. I had to because of the risk to her. She was really good and said something about when she does HIV. She did not dismiss me and knew I was only trying to keep her safe. My GP did pass me and he smiled at me but I know he will be at a loss as to what to do. I do not think I will be discussing it much with him as at the moment it is not realy a medical isuue but a political issue and the last thing I need is him getting caught in the crossfire.

Please keep on sending messages to Dys. It meant so much to me and I know it will to him, in a PM to me he said well we are kinda unique. Even though there are now two of us we are very much lone voices in a hostile territory.

 

[Hysterical Woman]

Joyscobby, Dysauto

Joyscobby, Dysautotonmia

Huugggsssss

 

[Dainty]

*hugs* is about all I've got too.

On a personal note I was at my practice yesterday but not to see my GP but a routine blood draw. The usual stuff done every year that never shows up anything. I had to try and explain to the nurse that I have tested positive for a retrovirus that is not meant to exist. I had to because of the risk to her. She was really good and said something about when she does HIV. She did not dismiss me and knew I was only trying to keep her safe.

Oh no! This just now reminded me that there was one time a nurse giving me an I.V. did so without any gloves on. She said she preferred to do it that way because she could feel the patient's veins better and thus do a better job. I really hope, if I'm XRMV-positive, that I didn't infect her.

I know I couldn't blame myself for it because it was completely something she did of her own accord and apparently on a regular basis, but I'd still feel horrible.

Didn't mean to hi-jack the thread or anything, just....*sigh*

 

[thefreeprisoner]

Dysautonomia - THAT IS AMAZING.
Stunning news in all possible respects.
Hope you are ok. Thinking of you.

Rachel xx

 

[anne_likes_red]

I sent a message to Dys in this thread earlier so will now add a ,

Plus one for Joyscobby (I'm so glad to hear the nurse treated you with respect).

And to Rachel.... a BIG teehee @ your signature :tear: !

 

[DysautonomiaXMRV]

Thank you for all your messages, it was like a birthday party reading all those
messages with smiles and happy comments. Cheers.

Having problems logging in at the moment, and cannot edit messages or send PM replies.
(Glitch with the system or someone's cross).

Either way, it's very kind of you all and I do appreciate every single word.

Lets hope that in the next few months, many more people can be tested and
have a better plan for their future instead of being stuck in medical limbo.

 

[JillBohr]

I want to congratulate you as well.

Hey Dys,

Thank you as well for posting your results here. I am so pleased to see my friends over the pond proving that XMRV does exist in the UK. Please take it easy but stay on here because I love reading your posts.

 

[DysautonomiaXMRV]

Do you have Canadian Criteria CFS? If you do I'm gonna get the test done I think.
I'm excited as hell now.

Hi. Yes. :Retro redface:

Or if you want to play NHS pass the parcel: (Open the box when the music stops and get a free insult from a clinical psychologist). It's actually over the years chronologically it goes something like this.........

Post Viral Fatigue Syndrome
Persistant Infective Syndrome ?!
ME
CFS
Dysautonomia

Then when I met Simon Wessely's friends it became:

Somatization or Conversion disorder.


So either Somatization causes XMRV, or XMRV is in people with ME also called CFS in America.
Take your pick, and the winner gets a cuddle. :tear:

 

[DysautonomiaXMRV]

Hey Dys,

Thank you as well for posting your results here. I am so pleased to see my friends over the pond proving that XMRV does exist in the UK. Please take it easy but stay on here because I love reading your posts.

What a gentlewoman you are Jill, thank you. We must start up a business plan together half way across the atlantic on 'Rat Island' to avoid paying tax. May I suggest some ideas? I would think something along the lines of 'fatigue felons Inc':

Lets achieve national notoriety for XMRV by:

1) Entering ourselves into a game of 'statues' for over 30's and taking on the local population who all happen to suffer from hyper-activity. (If you aren't over 30, try some grey hair dye or find a friendly silver back gorrilla).

2) Entering ourselves as proficient in the ability to count ceiling tiles, and offering this service to eccentric people for a small
charge.

3) Entering ourselves as proficient in driving mean psychiatrists to hospital, with the engine turned off.

4) Entering ourselves into an open jail and promptly tell hillarious jokes to puddles - thus impressing 'burt the basher' so much he invites us onto his private yacht in Monaco, steered by devastatingly attractive male models - none whom are gay.

5) Stay on Phoenix Rising and develop a form of CFS X-Factor. There will be only one entrant. The only person without
chronic Laryngitis.

I'd put $10 on number 5 personally....

 

[DysautonomiaXMRV]

. I wish you all the luck in the world. If I could ask a question: Has you GP or consultant changed your diagnosis from ME/CFS to XMRV positive?

Thank you, unfortunately though I'm not Irish so the lucky may amount to selecting pub crinkle cut chips rather than McCain oven baked.

To answer your question, no my GP has no changed my diagnosis or has any interest in the result.

Although this is annoying, in their defence although a GP is a qualified doctor, they are also a 'manager' and they need to be told how to 'manage'.

If some people with the diagnosis of ME or CFS have XMRV, then our GP's have no idea what to do without be told what to do, because it's socialised
health care and not private. Every decision, every 'referal' needs to be justified and allowed.

Is someone who is told the 'best evidence' for treatment being psychological rehabiliation and exercise - going to be allowed to be refered to an immunologist?
Morally yes - but structurally, no. The immunologist will simply say to the GP. What am I to do?

According to the NHS, XMRV doesn't exist in the UK and this 'evidence' was given to them by IC and Simon Wessely who is a
CFS expert. Apparently.

So unless we're going to wait another 2 years to be 'official' we need 'evidence' XMRV is damaging our bodies.
I am hoping Dr Mikovits will enlighten us on Friday (tommorow) in her talk.

If I was able financially, now I would be planning further tests:

Natural Killer Cell Enumeration Panel
T-Cell
B-Cell Count
Oxidate Stress Assays
Inflammatory Cytokines/Chemokines

These can be obtained through spending lots of money (NHS won't offer them)
at VIPDX in America and Or RedLabs in Belgium, in Europe.

So to recap, without interest from the NHS in the UK - we'll have to play doctor (as usual)
and 'show' our doctors what XMRV can do. Or indeed what 'CFS' can do.

Only then will they take an interest, and only then can our state doctors 'get away' and
not be ticked off, or blocked, in refering us to an immune clinic.

The whole point of all this after thousands of pounds of more testing, would be to achieve the
holy grail of ME or CFS.

To have Infectious Disease, and/or Immune Disease/Immune Impairment written in our medical file.

Then we are socially equal, and then we are freed from past theories on hysteria and fatigue.

We need more science FACT and less THEORY!

 

[Katie]

Hey Dys, congrats on the retrovirus... still can't do these posts, feels so wrong!

I was very interested in reading what your next steps would be funds allowing. I've been half playing with that in my mind should I be XMRV positive. I was thinking about RedLabs in Belgium for follow ups depending on my GPs enthusiasm for NHS testing, we've not discussed ME much. We may end up sitting on our results for a while.

Good luck, I hope that your future leads to some treatment and improved health.

Katie

 

[Adam]

Repeat after me - must not think what might have been. I think you are very brave taking the test. You do not say what you feel about the outcome? Take care.

 

[Adam]

That was funny. I don't laugh enough. I just laughed. Lucky for me my Consultant is a believer and has stopped at CFS diagnosis.Seen him right from the start after hospital admission 13 yrs ago when my gait was so bad my wife thought; Mad Cow Disease. No jokes please. She thought I was on my way out. My Doc is now a Proff. If it wasn't for him I would never have got early retirement and state benefits. I owe him.

 

[garcia]

And the plus with the NHS is that no-one ever has to fear being turned away for lack of money.

That is true. People are regularly turned away for having the wrong disease though. At least with private healthcare you are the boss and can hire & fire at will, although neither system is perfect.

When people with ME/CFS criticize the NHS they aren't criticizing the system in it's entirety, just that part of the system that deals with chronic illness. Personally I think the NHS do a stirling job of patching up drunks on a Friday/Saturday night. However I do think tax-payers money could be better spent (i.e. curing those people too sick to work because they have the misfortune of having the wrong disease).

 

[Martlet]

When people with ME/CFS criticize the NHS they aren't criticizing the system in it's entirety, just that part of the system that deals with chronic illness. Personally I think the NHS do a stirling job of patching up drunks on a Friday/Saturday night. However I do think tax-payers money could be better spent (i.e. curing those people too sick to work because they have the misfortune of having the wrong disease).

"Private" care in the USA should not be confused with private treatment in the UK. We cannot hire and fire at will. Just as in on the NHS, we are dependent on whether the doctors we want to see will take us, but unlike in the UK, we are also dependent on whether our insurance companies will cover the tests and procedures we need. Americans don't have a limitless supply of personal money. Just read what people here are saying about living on disability - if they are fortunate enough to have it. In the UK, you never need to fear losing your home because of medical bills.

I've had good insurance and have a doctor whom I love, but I have never had the tests many here say they have had. Neither have I had the treatments some have had. No way would insurance pay for it and no way, even when my husband was working, could we have afforded it. I think I am probably in the majority. And I also think there is a lot of misunderstanding about the American system. We have 46 million people with absolutely no insurance. Imagine how they fare!

As for treating "drunks" on Friday, see my post above. I think Alzheimers is chronic, as is the leukemia that my son-in-law's nephew currently has. Both my friend and that little boy are getting the best treatment available, without regard to ability to pay.

 

[garcia]

Its true that Alzheimer's is chronic, but the nhs treatments are absolutely awful. Hardly state-of-the-art, more like stone age. Alzheimer's almost certainly has an infectious aetiology, but this is completely ignored by the NHS since it falls outside their blinkered paradigm.

I'm sorry to hear that you son-in-laws nephew has leukaemia. Just out of interest did he have a night light?

Like I said my criticisms of the NHS are not blanket, but merely the part of the NHS I have to deal with. I'm glad there are people with diseases who do well out of the system. As someone with ME I don't have the privilege of being one of them (this is after all an ME/CFS board and that is what we are concerned with here).

You are right I don't have to fear losing my own home in the UK. Mainly because I don't have the luxury of owning a home. If I did own a home, I'd sell/mortgage it and fly to the US to get some medical treatment.

"Private" care in the USA should not be confused with private treatment in the UK. We cannot hire and fire at will. Just as in on the NHS, we are dependent on whether the doctors we want to see will take us, but unlike in the UK, we are also dependent on whether our insurance companies will cover the tests and procedures we need. Americans don't have a limitless supply of personal money. Just read what people here are saying about living on disability - if they are fortunate enough to have it. In the UK, you never need to fear losing your home because of medical bills.

I've had good insurance and have a doctor whom I love, but I have never had the tests many here say they have had. Neither have I had the treatments some have had. No way would insurance pay for it and no way, even when my husband was working, could we have afforded it. I think I am probably in the majority. And I also think there is a lot of misunderstanding about the American system. We have 46 million people with absolutely no insurance. Imagine how they fare!

As for treating "drunks" on Friday, see my post above. I think Alzheimers is chronic, as is the leukemia that my son-in-law's nephew currently has. Both my friend and that little boy are getting the best treatment available, without regard to ability to pay.

 

[thefreeprisoner]

Ahh, the grass is always greener across the pond, eh?

I for one am VERY grateful we don't have the insurance nightmares that you do in the US. Having to wait for gall bladder surgery until it becomes an emergency?? That's just... er... am struggling for words here. (And that's not just the ME speaking.)

I'm intrigued by the system they have in Singapore, where you get a sort of 'health account' with money that the Government pays into every year and you can spend it on anything you want, which is backed up by insurance for real expensive diseases. Apparently their healthcare system is superb, but I've yet to hear a person from Singapore talk about their own experience of it.

Anyway, I think I am veering this discussion way off-topic. I just had to stick up for the NHS though.

 

[Martlet]

I've moved this discussion about differences between the UK and the US health care systems to the Community lounge.