From the 1st annual XMRV conference

[Navid]

going on a road trip w/leela

Even if a bad road trip was riddled with bad weather, flat tires, road construction, an overheated radiator and static on the radio, getting rid of the passenger who farts continuously, thinks it's funny to cover your eyes while you're driving, and won't stop whingeing, definitely improves the quality of the journey, I'd say.......................leela

this is hysterical....thanks for the belly laugh!!!!!

 

[Otis]

Well it's quite late in Belgium already and I have a terrible day, but nevertheless I want to ask you something about the delay tactic? Does anyone of you think that the discovery of xmrv, e new retrovirus, linked to MECFS is a well kept secret so far from the public, because aknowledging this fact will unleash fear and confusion like with HIV?

Love,
Berthe

I think (all) the governmental agencies will always paint the least-scary picture and will stall for time. What I found dumbfounding after the Lo-Alter study finally saw the light of day was that in nearly all the press reports the question of the prevalence of a retrovirus in the general population and the blood supply was completely obscured over debate over the "contradictory" studies, the lengthy histories of CFS, etc., etc.

I don't wish to panic the public unnecessarily but I've been saying (as have others) for quite a while that without a push from a concerned general population we won't see the kind of real impetus for research and treatments that we all deserve.

The genie can't be stuffed back in the bottle but it can be imprisoned in a slightly larger container unless we get some serious (inter)national attention.

 

[Otis]

If it turned out that XMRV was not a causative factor, it is *still* a big deal, because life with a retrovirus is no fun! PWME/CFS"s systems are already pounded with multiple infectious agents, including herpes family viruses (EBV, HHV, VZV, CMV) which also never go away. In people with healthy immune systems these things can lie dormant with little to no effect. For us, causative or not, a retrovirus would be a major player in why our immune systems cannot keep up with the things healthy people live with asymptomatically.

To add on to that great point, one of Judy Mikovits' best responses in the Q&A goes as follows:

Retroviruses are not ubiquitous and theyre not generally benign so the kind of biology that weve looked at with HTLV1 with the HTLV1-associated myelopathy and the acquired immunodeficiency virus, HIV. Thats a reasonable hypothesis. So it has not been a passenger in the other human retroviral-associated diseases so there is no reason to expect that it would behave other than another human retrovirus. But of course this is the first human gammaretrovirus. So Sandy (Ruscetti) knows in that family of viruses the envelope is both an oncoprotein and a neurotoxin. We heard yesterday about HIV creating a dementia distinct from the immune deficiency based on the viral envelope protein, so these are all hypotheses that were following.

So under the best of circumstances this type of virus does serious damage just by being present.

Even if a bad road trip was riddled with bad weather, flat tires, road construction, an overheated radiator and static on the radio, getting rid of the passenger who farts continuously, thinks it's funny to cover your eyes while you're driving, and won't stop whingeing, definitely improves the quality of the journey, I'd say.

I didn't know you traveled with my brother-in-law.

 

[leela]

So Sandy (Ruscetti) knows in that family of viruses the envelope is both an oncoprotein and a neurotoxin

Otis, that sentence of hers stood out like a giant billboard to me too. Not only does it indicate the serious potential damage the virus can do,
but it really serves to silence those voices who were not able to speak the word cancer in the same sentence as CFS--as if one were comparing cancer and a paper
cut. There were folks at the meeting who seemed to think it was impossible for one pathogen to have different outcomes. In one sentence she cleared that RIGHT up!

 

[Sean]

So under the best of circumstances this type of virus does serious damage just by being present.

That is my take on it. Even if it is a passenger virus, it is pretty unlikely to be a benign one. And the evidence so far suggest it is not just a passenger.

 

[Berthe]

I think (all) the governmental agencies will always paint the least-scary picture and will stall for time. What I found dumbfounding after the Lo-Alter study finally saw the light of day was that in nearly all the press reports the question of the prevalence of a retrovirus in the general population and the blood supply was completely obscured over debate over the "contradictory" studies, the lengthy histories of CFS, etc., etc.

I don't wish to panic the public unnecessarily but I've been saying (as have others) for quite a while that without a push from a concerned general population we won't see the kind of real impetus for research and treatments that we all deserve.

The genie can't be stuffed back in the bottle but it can be imprisoned in a slightly larger container unless we get some serious (inter)national attention.

Thank you Otis. I think exactly the same but am not able to express it in English.
The question is therefor: What can we do to push it? I would love to write a good article about and send it to some Dutch and Belgium magazines. Does this sound stupid?

Love
Berthe

 

[Recovery Soon]

Thank you Otis. I think exactly the same but am not able to express it in English.
The question is therefor: What can we do to push it? I would love to write a good article about and send it to some Dutch and Belgium magazines. Does this sound stupid?

No. That sounds highly intelligent. I am all for scaring the public- without hesitation. The medical establishment's decision to ignore us for decades has spiraled into a situation where Nation's Blood Supplies are potentially at risk, and the public has every right to know this fact- and how it happened.

The public will never care about CFS. They care about themselves, and understandably so. But we would be foolish not to capitalize on this situation, which is not squarely being discussed with the public.

Tell everyone you can, far and wide, the Blood might be tainted- Because Governments ignored millions of sick people for decades.

 

[Sing]

The genie can't be stuffed back in the bottle but it can be imprisoned in a slightly larger container unless we get some serious (inter)national attention.

Otis, I think your metaphorical picture here is so apt! Thanks--

 

[anciendaze]

I would like to add my observation to the response to the contamination issue. We have results which show a difference between patients and controls with considerable reliability. If the contamination is doing better at diagnosing the illness than the clinicians who implemented the 'empirical definition' it would make sense to study how the contamination is doing this. (See Jason's paper about a 38% overlap with primary depression.) Even the Huber study found substantially more positives among patients, so this is not simply a matter of 'true believers' getting results they want.

 

[leela]

I would love to write a good article about and send it to some Dutch and Belgium magazines. Does this sound stupid?

Certainly not! Please proceed

 

[leela]

The genie can't be stuffed back in the bottle but it can be imprisoned in a slightly larger container unless we get some serious (inter)national attention.

Love this. Let's also hope the genie deosn't get stuffed into that larger container with Otis' brother-in-law!

 

[Otis]

I would like to add my observation to the response to the contamination issue. We have results which show a difference between patients and controls with considerable reliability. If the contamination is doing better at diagnosing the illness than the clinicians who implemented the 'empirical definition' it would make sense to study how the contamination is doing this. (See Jason's paper about a 38% overlap with primary depression.) Even the Huber study found substantially more positives among patients, so this is not simply a matter of 'true believers' getting results they want.

Well said. Add to that - even a layperson (that is to say I lay on bed a lot) like me can (using the same tool the scientists use) compare the available sequences from Silverman, the WPI and Lo/After and see the genetic diversity of these sequences that completely contradicts the contamination theory.

 

[leela]

Is It TIme for Science to Reinvent Itself?

I have been giving a lot of thought lately to these assays, and the issues surrounding them, and to clinical trials, and have come to the conclusion that scientific procedure is now outdated, and needs to be revised.

Let's take double-blind placebo tests or what have you. Recent evidence shows that placebo often works as well as medicine (we'll not go into why here) so given that, does it not now seem unscientific to proceed in comparing a trial medicine to a placebo? Not to mention, it is cruel to the patients in those trials who are hoping to receive the treatment and become well. Seems like an ethics refresher is needed there as well.

Why not simply
-Agree what defines a disease
-Choose a patient population that fits those parameters
-Administer trial medication
-Measure if they improve

You already have a built in "control" in the sense that sick people will either:
-improve
-stay the same
-get worse

Just because it was decided by concensus some time ago that the current scientific methods
were the most accurate or appropriate, it doesn't mean they are still so. With the new info about placebo, it seems absurd to be using that as a measure against which to determine the effectiveness of any medicine.

So much of the argument going on in the XMRV replication studies seems to be related to another problem I notice in academia all the time: The terms are self-defined, and therefore all argument remains within a closed set of constructs. I realise this is part and parcel to much scientific study, but it can lead to a dangerous set of flaws in thinking, and in seeing reality for what it is, rather than how it appears within the confines of your predetermined criteria.

Perhaps this query belongs in a different thread--should I move it?

 

[illsince1977]

I have been giving a lot of thought lately to these assays, and the issues surrounding them, and to clinical trials, and have come to the conclusion that scientific procedure is now outdated, and needs to be revised.

...

Perhaps this query belongs in a different thread--should I move it?

All excellent points you made in post 654, Leela. I think it bears further discussion and perhaps you should start a new thread so we can discuss it thoroughly. Let us know if you do.

 

[leela]

All excellent points you made in post 654, Leela. I think it bears further discussion and perhaps you should start a new thread so we can discuss it thoroughly. Let us know if you do.

I have started a new thread, for those interested in exploring the subject more deeply:
http://www.forums.aboutmecfs.org/sh...cience-to-Reinvent-Itself&p=124415#post124415

 

[pete]

Leela , presumably with your new system we could all start doing that and see if we get better. The problem is the cost of Isentress especially in the UK. The trial may not work as well with just the other two. But I think it is important to have the test first , if it is XMRV neg we seem to have less data at present and the trial might have to wait a little. The hints that were dropped at the conference and elsewhere seem to encourage us to try if XMRV pos . There are other problems we find just doing nothing. That is not without risk .