How long?

[leaves]

How long do you guys think it will take before there is treatment available for XMRV + people?

 

[Victoria]

Leaves,

my immediate reply is "how long is a piece of string".

But seriously, if they can identify one (or a collection of very specific triggers or viruses conclusively), then they will make some more headway.

I'm not sure that XMRV is going to be the full answer - yet. But since there are so many symtoms (& varying degrees of those symptoms within each patient), I don't believe there will ever be a one size fits all treament or cure.

I believe that each patient is unique, & each symptom needs to be addressed in the context of that person's overall health.

One needs to look at the genetic DNA, the environment, the lifestyle, the race, the sex, their age, their previous health, as well as diet, job, mind & spirital health & so on.

I think restoring the body's natural immune system will go a long way towards improvement.

There could be hundreds of different treatments used on their own, or together, to bring about an improvemt or cure.

But, restoring the body's natural defence system will be a good start.

Leaves, I wouldn't hold my breath thinking a cure is just around the corner. It's too complex a condition.

(How many years does it take to put a new drug on the market with FDA approval)?

 

[heapsreal]

also a good reliable test is needed that regular doctors can send you for also.

 

[JPV]

How long do you guys think it will take before there is treatment available for XMRV + people?

3 years, 6 months, 9 days, 4 hours, 8 minutes and 12 seconds...

But seriously.

I really don't know how you can expect anybody to have an answer to this question. Most viruses are difficult if not impossible to cure. How long has it been since AIDs was discovered, 25 years? There's still no cure, perhaps there never will be. That's the best answer I can give you.

Dr. Peterson, one of the WPI team members, has gone on record saying that there is no evidence that XMRV is the cause of CFS/ME. In his own words, it may just be a "passenger" to another condition. As far as I'm concerned, considering the medical community's inability to find a cure for practically any virus, I really hope that it's NOT the cause. It baffles me to no end that people are so excited by implication of this discovery. As far as I'm concerned, it's a disaster.

 

[Tembo]

Im guessing also that this could be a looong road. However didnt JudyM say in one of her Q&A Sessions to this very question "six months" ? And this was a while back too.

Surely if they do confirm that XMRV is linked to CFS they will be able to start trying things on us asap.
Heck I hope so......Ive waited 19yrs......

 

[leaves]

Hi Jpv and others,

I do not expect a cure, I do expect a treatment.
I don't expect a precise answer, just an estimate.
Whether I like it or not, I am infected with this virus, I would not say I'm enthusiastic about it really. This retrovirus may be a pasenger, so let me redefine;

given that xmrv is not a passenger how long do you think it will take before treatment becomes available?

Why? Beceause I am curious and a firm believer in the wisdom of crowds.

Xoxo
leaves

 

[garcia]

I really don't know how you can expect anybody to have an answer to this question. Most viruses are difficult if not impossible to cure. How long has it been since AIDs was discovered, 25 years? There's still no cure, perhaps there never will be. That's the best answer I can give you.

I think what people will settle for right now is treatment to improve quality of life, not necessarily a cure. Just to be able to think on demand would be good.

Dr. Peterson, one of the WPI team members, has gone on record saying that there is no evidence that XMRV is the cause of CFS/ME.

Do you have an exact quote JPV?

In his own words, it may just be a "passenger" to another condition.

I think he was just elucidating all the possibilities.

As far as I'm concerned, considering the medical community's inability to find a cure for practically any virus, I really hope that it's NOT the cause. It baffles me to no end that people are so excited by implication of this discovery. As far as I'm concerned, it's a disaster.

I hope its not the cause too. But I fear that it is. And right now my fear vastly exceeds my hope based on all the evidence I've seen, and everything I know about this disease.

If it is any consolation, it was always going to be something viral IMHO, and it was always going to be something serious given the devastating nature of the disease. I don't think there was much chance we were ever going to dodge this bullet.

 

[Adam]

Hi Jpv and others,

I do not expect a cure, I do expect a treatment.
I don't expect a precise answer, just an estimate.
Whether I like it or not, I am infected with this virus, I would not say I'm enthusiastic about it really. This retrovirus may be a pasenger, so let me redefine;

given that xmrv is not a passenger how long do you think it will take before treatment becomes available?

Why? Beceause I am curious and a firm believer in the wisdom of crowds.

Xoxo
leaves

Hi Leaves

I read up everything on here and elsewhere and decided I needed a goal. Not for everyone I understand but for me I needed an age by which (if I test positive) I would receive treatment (on the NHS) if XMRV proves causal etc etc. I estimated 2/5 years. Two years if you can access private treatment, five if you can't. I am waiting on the UK study to find out if I am positive, which I hope I will before the year is out. However, allowing time for the drug trials and reliable testing methods to be adopted by the NHS and then more detailed clinical analysis of indivdual patients by doctors, NICE approval of ARV's, I end up at five years from now.

FWIW that's my best guess.

Hope it's sooner. If you get in on a drug trial it would be.

all the best

Adam

 

[Daffodil]

leaves.....i know the WPI is named after peterson, but is he still part of the WPI? i am not sure.

klimas once estimated 2 - 3 years (if i recall) for a new drug to become available for XMRV.

but i wonder if she foresaw all these negative studies and all this political resistance.

sue

 

[sidonie]

Even though XMRV was a passenger it is an infectious virus and it would be doing some harm.

 

[VillageLife]

I've heard rumours that the process of drug treatment will probably move quite quickly.
We have got to get some positive studies!!

 

[thegodofpleasure]

My guess on timescale to approval of effective treatment

I think that it is fair to say that anti-viral treatments already exist that will (in combination) prove to be effective against XMRV. (Dr. Illa Singh & others have already done ex-vivo studies to test the efficacy of the prime contenders to do this.)

The critical step is demonstrating a causal linkage between XMRV and ME/CFS and thus setting in motion the regulatory process for approval of suitable treatment regimes. Assuming that this happens, the big Drug Co.s will then become very influential in how long it takes.

So, before all this can happen, we get back to the need for the publication of results from properly conducted replication studies, in order to confirm (or refute) the findings of the original Science paper. That process has already taken much longer than most people expected it to take and we still don't know how much longer we will have to wait.

The whole process might be taken in a different direction if the principle tissue reservoirs of the virus are identified soon and these enable novel testing & treatment methods which are both safer and more effective than the anti-virals that we are currently aware of.

My guess on timescale?

Optimisticly: Replication studies - min. another 3 months - probably 6 months in order to get substantial weight of evidence i.e. 2 or more
Causational studies + 2 & 1/2 years (including approvals)
Treatment protocol approval + 1 year
Total : nearly 4 years.

I stress that this is just my opinion and I'm genuinely interested to hear what other people think.

Regards

TGOP

 

[redo]

How long do you guys think it will take before there is treatment available for XMRV + people?

It depends on how you define an available treatment. If you mean a treatment your doctor can prescribe you on label, then I think it will take about -- an eternity.

First you would have wait for a positive replication study, then I guess the replication study will be questioned because there have been so many, mostly PCR studies, which have failed to find it.

After that I think some or all of the patients in the science study will be offered a treatment trial.

If the trial is successfull that wont be enough to make it a on label treatment.

After that, a new and much bigger group would have to first be tested, and enrolled in a larger study, where perhaps half would recieve placebo and half receive drugs. And if that's successfull, I hope we don't get a new debate over whatnot about the trial.

So it will be years and years to wait, and the scenario above is if everything goes well... It doesn't seem to me that the interest for getting a study where they actually replicate the original study is that high to the CDC. Seems to me they are quite content with doing a half hearted effort. I hope this would change, but it wouldn't surprise me if this wouldn't be prioritized even after positive replication studies. On one hand the original study is being criticized for not having a quantitative PCR (meaning a PCR which shows viral load in the blood...), and on the other hand those who do replication studies doesn't care about doing a PCR in their study, which is identical to the one in the original study. Obviosly it's known that measurements of viral load haven't been done in the original study, and yet they go about it as if it's known that the viral load in the blood is so high that they don't need to have a fine calibrated PCR to find it. They can just use a PCR which have never been calibrated for a positive human sample, and assume that it works.

Knowledge of personal trials, with the support of a doctor is very helpful for those who are about to design bigger treatment trials. In vivo experience is after all what we're after. Something might work on paper, but if it works in pratice, then we've got what we're looking for.

So I'd like to say that I am very gratefull for those who are being pioneers. Both them, and the doctors who are willing to help them.

 

[ukxmrv]

In the UK we face a further problem and a delay. The NHS and the NICE Guideline.

For people who have the money (or access to a system that provides drugs like Jimbob is using) the choice is there. Start treatment straight away or wait until clinical trials are done.

Even if XMRV is shown to be the cause of ME we still don't know (apart from invitro or patient experiments) how the treatment will work.

Then in the UK, even if clinical studies are done, we still don't know if the NHS will fund the drug. We may get fobbed off into waiting for NICE to recommend a treatment?

The NICE guideline for treatment of ME/CFS is up for review this Summer. Will they make us wait just how many years until they review it again? Will it take another attempt at legal action in the end to get treatment?

For those of us in the UK, we face the knowledge today, that even if clinical trials are held into drug treatments abroad, that is no guarantee that the NHS will provide them and NICE recommend them.

The questions should be

1. What treatments can we current afford
2. What can we get for free or under insurance/ state system
3. What level of proof will we individually wait for - or our system demand

 

[usedtobeperkytina]

Some considerations:

Singh has already identified likely drug treatment in vitro.

These drugs have already been tried in humans (for other diseases) for safety. We're not starting from scratch.

Often, treatment is determined at the same time cause is determined. So don't look for an announcement of "We found the cause, now let's look at finding treatment" model. There is the suspected cause (where we are now) and looking for treatments of virus at the same time. If the treatment that hinders virus leads to reduction of symptoms, treatment and cause are established at the same time.

Drug companies, surely, are going to see big, fast bucks in our illness.

But, testing method must be standardized, then study using that test that proves XMRV is higher in CFSers.

Tina

 

[grant107]

If those using antiretrovirals now get much better that will go a long way in proving the link between xmrv and cfs. I am putting a lot of hope in the workshop the NIH will be putting on in September. Surely, they will show some progress in their study of this illness. I, for one, am not willing to wait years for science.

 

[jimbob]

Im glad I got the chance to at least try something, because to be perfectly honest, I can't f--king wait another 3-5 yrs! 26 yrs, 2 mo. and 23 days is way too long to suffer. I don't want a treatment coming along when I'm too old and senile for it to matter. Sorry to be such a downer.

 

[ukxmrv]

Apart from the WPI, does anyone know who else would be interested in carrying out clinical trials into treatments?

 

[jackie]

this is exactly why i take long term high dose antivirals (4 yrs)....and because a good portion of my memory and cogntive problems have lifted. two years ago i wouldnt have been able to read or write here. (this was my most worrisome symptom...i can live with the symptoms of chronic viruses (vzv, hsv-1), pain, fatigue etc., pem) i'll take any and all the improvements i can get...however subtle or fleeting.

i understand that until specific antivirals, and if necessary, specific arvs are developed - we make do with what we have available (granted, not much!)

ive stopped reading about failed studies...I'M my "study"! (too many years have been wasted by the cdc for example, imo)

xmrv may change this...but in the meantime...im going to try whatever i think has a reasonable chance of improving my quality of life and to prevent a deterioration of my condition.

i also understand that it is not an overnight process (i might very well be taking av's for my entire life, to suppress these viruses...though ive been ill since birth and im 58)...and im prepared for that.

i had been on av's for over 1.5 years before i noticed a difference...so i continued on and the changes started to occur. but no one has the same reaction, either.

its a gamble until we get the right avs/arvs on the market.

looking at the dismal figures for government spending for me/cfs tells the whole story. this must also change..and quickly - as many of us are aging now, as well. j

 

[alex3619]

Hi everyone,

I think it is less about how long it will take and more about how fast we can make it happen. Best case scenario, twelve months. Worst case scenario, twenty years. We, and other stakeholders, can do a lot to make it one year rather than twenty.

All of this is conditional on the XMRV research being replicated and causal, (or at least co-causal), otherwise we are back to where we were before but with a whole new generation of researchers potentially interested in ME and CFS.

Bye
Alex