Annette Whittemore on Nevada Newsmakers again

[eric_s]

Hi Nina

In my opinion, HGRVs to a good degree are make or break for the WPI. And to a part it's the WPI that has made them that. But the BWG or even Lipkin, as far as i'm concerned, won't necessarily be make or break for HGRVs, even though they are very important.

This is just my opinion and of course the WPI are free to do whatever they like, as far as the law allows them to do so. They can continue with their institute and people can donate to it, go there for treatment, etc. We are all free.

Sorry if this sounds a bit hard, but in the end we have a very big and serious problem. There are a couple of millions of people in the world who have this illness and they are without much help and face all sorts of adversities every day. The situation is very serious. So i feel like we need to set pretty high standards, if we don't, we will not be able to solve the problem or not in time. Of course too high standards might also hurt, that's true.

I agree researchers have the right to be wrong, but the WPI were very aggressive and confident about their findigs. If they aree right, then i think they did it very well. Also, as you know, i have always supported them and continue to do a number of things that will hopefully lead to more support for them. If they are right, then they deserve their place in history. But fact is, that we are not entirely sure yet, if they are correct about XMRV/MRVs. If they are wrong, then things look a bit different. It's not that i would want them to close then, that's really up to them or maybe even up to courts, depending on the circumstances, but i think that me, personally, i would look for another place to place my hopes on and to support. Because i would feel that they are not our best bet. But like i said earlier, we are all free and can choose for ourselves what we think will help us most. The problem is that we don't have so many alternatives and this is probably one of the main things we should try to change. How could one rather small institute solve this disease? They should have hundreds of employees and a budget of some billion $ for that, probably. And even if ME/CFS research had these resources, it would probably not be best to place them all on one institute. I hope a lot they will be right and they will get much more funding and can grow, don't misunderstand me...

I really have a lot of sympathy for the Whittemore family and for the WPI and am grateful for what they've done, but in the end this is not only about sympathy, but about the destiny of myself and millions of people, so it's the results that matter most. But that's really just my opinion.

 

[Andrew]

A few thoughts:

1. Overall it is uplifting and encouraging.

2. WPI is a neuroimmune institute, not an HRGV institute. So if HGRV falls through, that shouldn't mean the end of WPI. And I assume that if HGRV does fall through, the flood of donations will fall to a trickle. But it won't be me who stops donating. Because they will still be one of our best hopes.

3. I would feel much better if the New Jersey center were underway, because it's usually better to have more than one place. But with the economy the way it is, I wonder if it will ever happen.

4. It is always risky for WPI to speak only of the dramatically successful cases. Then everyone comes there expecting a miracle. That's what happened to Goldstein, and the backlash led to the end of his practice.

 

[free at last]

I think it's extremely sad and potentially very harmful to patients that a certain group of people (with the help of the media) has managed to create a situation where many now feel that HGRVs is the make or break for the WPI. It is not.

The WPI has a right to be wrong and continue their research IF that was the case, which we don't know. If every researcher following a wrong lead would have to close their labs and quit, 99.99% of them would be gone by now. It's certainly not the WPI's fault that this area of research is a political minefield.

IF (and I don't believe they are) they were wrong about HGRVs, I want them to carry on for as long as it takes to find the cause(s) and treatments for ALL of us. If we don't support them in this, who will?

I'm so sick of all those bystanders and "sceptics" who do nothing to further our understanding of this disease and just keep judging and slinging mud.

That being said, I found the interview very encouraging.

You are so right about this, sadly im not sure everyone will be so forgiving, im thinking goverment health agencies scientists ect, will have to see what happens. But they had to do what they did, they did the right thing 100% thank you for helping me see that more clearly if i havent in the past, im am of course secretly still hoping it will go good for them with the BWG. i dont however think it will, how i hope im wrong. i suspect they will find xmrv, but i belive it will not correlate as well with the other labs causing more confusion not less. Again we will have to see. its been nearly a month now, i wonder if any news will come soon ?

 

[SpecialK82]

A few thoughts:

4. It is always risky for WPI to speak only of the dramatically successful cases. Then everyone comes there expecting a miracle. That's what happened to Goldstein, and the backlash led to the end of his practice.

I agree. I love WPI and the hope that they have given us all, but to only mention a couple of seemingly dramatic results seems a bit unbalanced to me. If I didn't know anything about ME, I would think that it could be controlled/managed fairly easily with correct treatment. I don't think that this was the intention but that is the way I heard it.

I will get excited when we hear about measured results, # of patients, statistics, % improvement and how WPI is treating differently than other CFS docs around the world.

By the way, I want WPI to succeed 100%, I guess I'm just getting frustrated with the lack of progress/useable information.......sigh.

 

[eric_s]

i suspect they will find xmrv, but i belive it will not correlate as well with the other labs causing more confusion not less.

The good thing is that in this study this wouldn't be a problem. It would be enough if the WPI or any other lab was able to tell cases from controls well enough. Then they have proven there's something there and they are able to detect it.

 

[alex3619]

Hi, just to let everyone know - Sam Shad replied to my email with a brief thank you note. Bye, Alex

 

[grant107]

Eric, the WPI are trying to help very sick people. I still think it is a retrovirus. It may not be called XMRV but it must be a retrovirus. People on retroviral medications are being helped so it must be a retrovirus. I am planning to go on viread this month. You do not sound supportive to me.

 

[glenp]

Here 2

Hi, just to let everyone know - Sam Shad replied to my email with a brief thank you note. Bye, Alex

I also got a brief reply from Sam Shad.

 

[free at last]

The good thing is that in this study this wouldn't be a problem. It would be enough if the WPI or any other lab was able to tell cases from controls well enough. Then they have proven there's something there and they are able to detect it.

I thought about this Eric, but wont the nay sayers say its contamination, or some other anaomaly ? i suppose it all depends how well they pick them out. but if its not definiative. ( lets say variable hits at best ) Im not sure it will convince anybody. Not even some on here. Let alone my GP. I think it may depend on the consistency. the more consistent the hits. the harder it will be to explain it away ? Maybe im not looking at it right ? Its september, wonder how much longer. Would be good to know if i really do have this virus, incase i need specialist treatment. Something feels badly wrong lately. I belive this virus migh cause cancer, after years of carrying it. once the immune system stops fighting, and parodoxically less symptoms. other stuff happens, more seriouse stuff. Its all quite scary really.

 

[paddygirl]

SAM SHAD

I emailed Sam Shad, thanking him for the interview. I would like to KEEP him interested.

sam@shad.reno.nv.us

Hi Glen, if you look at some of the old interviews between Sam Shad and Annette, you will see he mentions at some point that a family member is a sufferer. Many of those segments are on the WPI Youtube channel.

He seems like a really nice guy anyway but as we all know some of our best supporters have seen this illness up close and personal

Helen

 

[eric_s]

Eric, the WPI are trying to help very sick people. I still think it is a retrovirus. It may not be called XMRV but it must be a retrovirus. People on retroviral medications are being helped so it must be a retrovirus. I am planning to go on viread this month. You do not sound supportive to me.

I also know they are trying to help people and have given hope to many, including me. I'm just trying to stay objective. So, as far as i'm concerned, what matters is if they are right about things or not. As long as i believe they are right, i will support them 100%. But if i would have to change my mind and think they have been wrong about XMRV, then i would seriously question wheter they are who i want to place my hopes on and who i want to give my/our limited resources to. As far as antiretrovirals go, i think there are cases where there was improvement and cases were there wasn't, but i don't have any data. I think in the end what's really needed to answer that question would be a real drug trial, blinded, placebo-controlled, etc.

As far as being supportive, i have donated to them, i would guess around 200$, that's not a lot, but then also i'm not very rich. And i hope to be able to provide funding for them (and others) through some projects we are working on. But only as long as i think they are the best recipient for funding, if they are not, i guess it would not be smart to give it to them instead of somebody else. It's really a very diffficult situation, because at least for me, XMRV makes a huge difference as to how i see the WPI. If they are right, then they are heroes, if they are wrong, then obviously they did not do the best work possible. They would still have moved the community, given people hope and brought attention to ME/CFS, but probably also at a price. It's quite hard to guess how high that price would have been, how much damage it would have done.

But like i said earlier, it's really also a personal question, if you think i'm not supportive, i don't mind you believing this. And if somebody thinks he will support the WPI no matter what, that's that person's decision, just as somebody else might decide otherwise.

 

[eric_s]

I thought about this Eric, but wont the nay sayers say its contamination, or some other anaomaly ? i suppose it all depends how well they pick them out. but if its not definiative. ( lets say variable hits at best ) Im not sure it will convince anybody. Not even some on here. Let alone my GP. I think it may depend on the consistency. the more consistent the hits. the harder it will be to explain it away ? Maybe im not looking at it right ? Its september, wonder how much longer. Would be good to know if i really do have this virus, incase i need specialist treatment. Something feels badly wrong lately. I belive this virus migh cause cancer, after years of carrying it. once the immune system stops fighting, and parodoxically less symptoms. other stuff happens, more seriouse stuff. Its all quite scary really.

I only know a little about statistics, but i guess it's like you've said. They need to be able to pick them out well enough. You can calculate how big the difference in the number of samples that are found to be XMRV+ between cases and controls has to be, so that the chance for this result being due to chance would be, for example, smaller than 1/100. If they pick them out well enough they can prove their result is most probably not due to chance, so they have proven there's a difference between cases and controls and they are able to measure it. And since they are looking for XMRV or related viruses that difference would most probably be the presence of such a virus. But even if it was something else that would be a nice find.

 

[Daffodil]

a dusty miller says he is interested in finding the virus and says it would be "relatively easy" to find out what we are infected with, but his hands are tied because of ethics committees and funding. that makes no sense to me.

if the lipkin study is negative, the wpi should just invite miller into their lab and let him find the virus if its that easy.

 

[eric_s]

So does he say he believes we have a virus, just not XMRV? Do you have a link, this sounds like some interesting statements he made.

 

[eric_s]

I just read the article on CFS Central again and maybe we have misunderstood the statement made there. It said they expect results to be made public in the next month. This could have meant "in September" and not "within 4 weeks". That would fit with what i read on the WPI's Facebook page, that they expect the results to be released at the IACFS/ME conference.

 

[Daffodil]

eric...yes i got the feeling that he thinks its a virus and he said that i probably feel better on the ARV's because of an "off target" effect. i guess my statement about inviting miller to WPI is naive....then WPI would own the rights..this is really all about money and recognition now. well, i guess that isnt fair...but it seems like that plays a very big part.

i cant give you a link..it was in email.

did you say the lipkin results would be out in a month?

 

[eric_s]

Hi, Daffodil, no, what i said was about the BWG's phase III results. I guess the rights would not be a problem. And if Dusty Miller would want to do something he would probably have all the necessary equipment where he is now. Probably money is a problem. I think Lipkin will do a pathogen search in samples from pwME/CFS, so if it's so easy he should find it...

 

[Daffodil]

i dont know.....if dusty miller says he can easily find the culprit, i am sure it wouldnt take long for us to collect the money to send. its all such BS. and we could just drop dead. im sorry i am so bitter..but there has been no news for months. there is no respite to our suffering and no one seems to care enough

 

[eric_s]

If he could do that then why doesn't he just ask the NIH, CDC or the president, if necessary? I mean if you can offer a solution for 1 million citizens and maybe (at least in the long run) save billions of $, i don't think money should be the problem.

It these don't pay, then there should be private capital available, if they can make profits from what he finds. Or philantropists.

Lipkin has said the same, if somebody can pay for it, he will be happy to do a pathogen search. It always seems to come down to this. That's why i think it's one of the most important things for our community, especially the organisations, to try to raise money.

I'm sure the culprit can be found and with enough resources dedicated it should not take too long, but i don't think it's extremely easy, beacause so far nobody has found a pathogen that seems to be resposible for every case of ME/CFS. Maybe XMRV will be this, but that's the only candidate at the moment, as far as i can remember.

If he really thinks there's a virus and he can find it i think it's his responsibility to let everybody know about that and try to get this done.

 

[Daffodil]

its all about who will own the rights to what is found..i know thats what it is. miller said "relatively easy"..if he can say that...how hard can it be?