I have a question or two.

[Knackered]

Sorry if this is the wrong section!

How long do we have to wait until we find out whether XMRV is the cause of our illness?
If XMRV is found to be the cause, can we be treated? If so, can we be treated with currently available medication?
If XMRV is found to be the cause and we can be treated, how long will it be before treatment commences? (I'm in the UK)
What level of illness should we expect to have once we're treated? Will our symptoms be gone completely?

I'm 27 next, I haven't worked since 2004, I want to get better and get back to working/studying before I'm too old with no work skills.

 

[Kati]

Sorry if this is the wrong section!

How long do we have to wait until we find out whether XMRV is the cause of our illness?

Knackered, first we are all waiting for study replications. Hopefully the independant study results will start to trickle by January and on, and as late at the summer for other studies. The authors of these studies will likely seek out publishing their own results and that takes time too in order to get acceptd. We have been told by clinicians that treat CFS/ME to expect some negative results- due to poor population choice (definition of CFIDS can be inconsistent) and poor technique would be the usual culprit. Or maybe no one could replicate the study, which in my opinion is very unlikely.
If XMRV is found to be the cause, can we be treated? If so, can we be treated with currently available medication?

If the studies are replicated, then people would get rushed to get tested- commercial testing would come out and hopefully be available in the UK usung your medical insurance. UK has been living in denial of what I can hear for ME patients. It may take longer there. There is apparently some drugs being tested already in vitro- test tubes. I am not sure if it is confirmed or not- but some of the HIV drugs will certainly be tested and then likely some clinical trials will occur in order to find the best treatment for all of us.

If XMRV is found to be the cause and we can be treated, how long will it be before treatment commences? (I'm in the UK)

We will know a bit more in January when Dr MIkovits will address the public in California and via webcasting- through pro-health. Keep posted.This forum is one of the best to get to the news.

What level of illness should we expect to have once we're treated? Will our symptoms be gone completely?

[A retrovirus stays in your body forever should you have it. However it is hopeful that we can be treated like for HIV patients and lead a normal life. I am certainly hopeful because I am not done with living yet!!! Nancy Klimas, HIV and CFS/ME dr said on a public talk recently that now is not the time to give up. /COLOR]

I'm 27 next, I haven't worked since 2004, I want to get better and get back to working/studying before I'm too old with no work skills.

There is good hope for you and for all of us. Keep an eye for Dr Jonathan Kerr in the UK, perhaps line up to be a patient in his office, join a UK ME group to keep up to date with the latest information and advocacy work, if you have money, give to research, because government grants will only delay research. Private donation will be used right away and hopefully speed up research and get us well on the way to recovery. I cross my fingers for all of us.

 

[Knackered]

UK has been living in denial of what I can hear for ME patients. It may take longer there.

I'm hoping that if XMRV is found to be the cause and currently available medication can treat it, it will be generic. If it takes a while for the British government to start treating the illness I'll pay for my own if it's possible.

 

[Kati]

I'm hoping that if XMRV is found to be the cause and currently available medication can treat it, it will be generic. If it takes a while for the British government to start treating the illness I'll pay for my own if it's possible.

Knackered, I would start researching the doctors that are doing the actual researches in the UK. Of what I hear, most doctors over there are extremely non receptive in accepting the concept of an infectuous illness versus a psychiatric illness. Network with other UK PWC and find out who is the one that is most likely to enroll patients in clinical trial.
The other possiblilty for you is to start getting tested for some of the other markors of the the disease, cytokines, Rnase-L, Natural Killer Cells, (look up VIP DX and there is an enumerations of the testing- also co-infections like herpes family viruses, mycoplasma, Lyme disease, etc... depending oin your worse symptomes.

In regards to clinical trials, if you can get in, you'd get your meds and testing for free, which would be a good deal. If you are going that route make sure you are aware of all the possibility of treatments especially if you are in a randomized study with chances of getting only a placebo.


What I have also done is gathered a folder of my medical information, so when I meed a new specialist, they can check out my history if they need to or I can find some information easily without relying to my brain which is a bit mushy thses days.

 

[Knackered]

Of what I hear, most doctors over there are extremely non receptive in accepting the concept of an infectuous illness versus a psychiatric illness.

My doctor thinks it's an immune system problem and doesn't think it's caused by a retrovirus, I brought it up with him and he dismissed the idea. I don't discuss my illness with him any more, or with any other doctor for that matter, it seems any attempt is futile.

Knackered, I would start researching the doctors that are doing the actual researches in the UK.

Network with other UK PWC and find out who is the one that is most likely to enroll patients in clinical trial.

What's PWC?

I'd have no idea how to go about that. Can anyone from the UK help me?

The other possiblilty for you is to start getting tested for some of the other markors of the the disease, cytokines, Rnase-L, Natural Killer Cells, (look up VIP DX and there is an enumerations of the testing- also co-infections like herpes family viruses, mycoplasma, Lyme disease, etc... depending oin your worse symptomes.

The price is prohibitive, I live my life receiving 90 per week which is 150 CND. If I ever come in to any cash I will.

In regards to clinical trials, if you can get in, you'd get your meds and testing for free, which would be a good deal. If you are going that route make sure you are aware of all the possibility of treatments especially if you are in a randomized study with chances of getting only a placebo.

I have no idea where to start. Is there anyone from the UK on this forum who knows what I can do?

What I have also done is gathered a folder of my medical information, so when I meed a new specialist, they can check out my history if they need to or I can find some information easily without relying to my brain which is a bit mushy thses days.

I don't have any medical information, since I became sick I've had no support or anything. I visit the doctor once every so often to get a repeat prescription and that's it, there's no discussion regarding my illness. It's as though I'm just left here with nothing.

 

[spit]

I'm not from the UK, but I think getting involved in clinical trials works basically the same as here -- institutes and teaching hospitals and large clinics, etc, will often post information about upcoming studies, the criteria that patients must meet to join them, etc. I'd scan through this site and others related to CFS to try to find anywhere near you doing research on XMRV, and then look at the lab/institute/clinic web page to see if they have anything about becoming a participant in a clinical trial. Lots of googling, really.

Your problem would likely be the same as mine, though, if you don't have much in the way of records. I have basic testing that came out normal, but no in depth testing that would be diagnostically helpful, and I haven't been diagnosed with CFS. In my case, I may or may not even meet enough criteria to be included in any kind of research -- they're looking, usually, for the most "typical" and unarguable cases they can find. Still, it might be absolutely worth it to you to try to find a study that would take you, you'd get some access to doctors doing specific testing if nothing else.

Overall and otherwise, I'd say -- hang in there, keep on eye on stuff, and give all this some time to unfold. I'm in the same boat. Had to quit school and can't work, and I'd really like to get back to it the best I can sooner rather than later, if there's any chance of doing so. But my best guess is that we're looking at -- if everything goes well and XMRV is in fact causal and so forth, so the best case scenario -- around another year before it's replicated enough to be widely accepted, and probably around a year to two years after that to filter into the front lines of the medical folks.

I feel like I've been left with nothing, too, and I totally hear you on that. It's like hitting a brick wall, sometimes, or feeling like you've dropped out of medical awareness and nobody can be bothered to keep looking at your health -- they shrug, you go home, you continue feeling like crap. Very frustrating to feel like that. I really hope that some answers are going to come our way in the next few years, at least something that will help a good number of people going through this.

 

[Robin]

According to Dr. Bell, we'll know within the next six months or so if XMRV is the cause of CFS. There is speculation that some of the drugs currently used to treat HIV might help suppress XRMV infection, which can be used in clinical trials immediately. Other compounds/pharmaceuticals that are not yet on the market would take a few years to go through testing. I have no idea about treatment in the UK, sorry! There are too many contingencies to answer the last one; I don't think anyone knows how well people would respond to treatment, but it's possible that we could be fully symptom free. Let's hope.

I'm 35 and haven't worked since 1995. You're making me feel old.

Sorry if this is the wrong section!

How long do we have to wait until we find out whether XMRV is the cause of our illness?
If XMRV is found to be the cause, can we be treated? If so, can we be treated with currently available medication?
If XMRV is found to be the cause and we can be treated, how long will it be before treatment commences? (I'm in the UK)
What level of illness should we expect to have once we're treated? Will our symptoms be gone completely?

I'm 27 next, I haven't worked since 2004, I want to get better and get back to working/studying before I'm too old with no work skills.

 

[Martlet]

And you make me feel even older.

I won't add to the answers already given because they are very accurate. I don't know where in the UK you live, but I just did a search for doctors and came across this BBC site:

http://www.bbc.co.uk/ouch/messageboards/F2322273?thread=4476258

If you scroll down, other patients are recommending specific doctors they have found helpful. And finally, the ME Association has a line you can call to try and connect you with a more understanding doctor. You can call ME Connect on 0870 444 1836.

And please, stay with us on these boards.

 

[alice1]

PWC stands for Persons With CFS.
This is a great board for info but I do hope you find a group back home that can be supportive and helpful.

 

[Knackered]

There is speculation that some of the drugs currently used to treat HIV might help suppress XRMV infection, which can be used in clinical trials immediately.

Which ones specifically?

I'm 35 and haven't worked since 1995. You're making me feel old.

Sorry, maybe it's kinda selfish of me to be moaning about it, it's just really frustrating.

You can call ME Connect on 0870 444 1836.

I'll call them tomorrow, do any of you know whether it's possible to get the VIP DX tests done on the NHS? Maybe ME connect know something about it.

And please, stay with us on these boards.

I will, thanks

 

[Robin]

Which ones specifically?

So far I've heard AZT and raltegravir. There may be more I'm not aware of.

Sorry, maybe it's kinda selfish of me to be moaning about it, it's just really frustrating.

Oh no! You weren't selfish at all. I didn't mean to minimize your experience, and I hope I didn't come across that way. It's horrible for everyone. It sounds like we got sick around the same age (early 20s) and I hope your tenure with CFS is MUCH shorter than mine.

 

[Marylib]

for Knackered

The group called "ME Research UK" is involved in XMRV studies. They are in the north I think. They have an excellent website and the people involved there are very nice people. Google them if you can and you can always phone or email them after that.

 

[Alice Band]

There are few opportunities to participate in bio-medical UK studies because most of the research funding is going into psychiatric research.

If you do want to be involved in UK research the best way is to be seen at a CFS clinic or contact a researcher direct.

For example I am seen at a CFS clinic and my doctor works with Dr Kerr. So we were used as some of the patients for his gene research.

Other researchers either approach a clinic or one of the charities. The ME Association works with Dr Gow and he asked for volunteers for one of his projects there.

For XMRV research there are some projects starting.

ME Research (used to be MERGE) have a project on XMRV but it is in Sweden and will use patients there.

Dr Kerr will be carrying out research with the WPI but he has already said he has enough patients (he has a lot of blood stored already for research purposes).

A group at UCH in London are starting a project but it is not know where the patients will come from.

There is no XMRV testing available on the NHS. Private testing is available through a patients group in London and will also be available through the Breakspear Hospital (they are finalising arrangements).

A few other places in Europe are offering testing at a price.

http://www.xmrvtesting.co.uk/index.html

 

[Dan]

My doctor thinks it's an immune system problem and doesn't think it's caused by a retrovirus, I brought it up with him and he dismissed the idea. I don't discuss my illness with him any more, or with any other doctor for that matter, it seems any attempt is futile.

Don't let this cause you despair. A week after the news releases about XMRV I talked with two doctors about this, here in Australia. I was shocked at one's response. He seemed completely uninterested. Who knows, maybe it's that humans don't do change very well, and people don't like having a new idea foist upon a structure on which they've been steadily working. I was relieved when another doctor I spoke with was keenly interested. I don't understand how a retrovirus would conflict with an 'immune system problem'. For many years researchers have suspected tiny pathogens as the root cause of aberrant immune function in many diseases.

 

[Eric Johnson from I&I]

......quite

 

[Eric Johnson from I&I]

Or rather, "what he said". I was responding to the whole post, not just the last line.

 

[spit]

Heh. In fact, retroviruses (and other viruses, often) are quite fond of causing "immune system problems", so that's neither here nor there. Get a new doctor if you can, is my advice to that, because he gave you a line of crap. I can imagine being skeptical of the XMRV stuff, but not being interested in it is a bad sign.

I think it takes quite a while for even well replicated research to filter to doctors. I suspect most don't ever crack open a journal again after they're done with school. And to be fair, I'm sure a lot of them handle a lot of patients coming to them with this study or that study that lack any context and have since been shown to be faulty or more complicated or whatever; I'm sure the temptation is to write stuff off until they hear about it through other channels. Of course, my sympathy there is limited, since the research that goes into "approved" diagnostic criteria (not only for CFS) and the like is sometimes terribly flawed, but is accepted uncritically. The medical world has its own set of sometimes stupid conventional wisdom, and it takes a lot to crack that -- it would annoy me far less if most doctors would bother to understand that they're even capable, as a group, of stupid conventional wisdom, and thus keep an eye out for it. But most don't.

 

[SickOfSickness]

Yes, don't worry about what MOST doctors will think. Just try to find one or two that will help you and have an open mind. When it becomes the hot new thing in the journals and on the news, it will still take a little while, but more will come around. It would still be better to have a doctor who believes you have real issues now. I think that DOs are more likely than MDs to be open minded about it. Also rheumatologists and anyone who claims to treat the whole patient.