Let's "adopt a sequence" (with funding) of an XMRV isolate!

[citybug]

One thing WPI could do to improve their donation set up is to have a Memo or Note area. .. I'll be sending an email to the contact listed on WPI's site mentioning this

I've been wanting this too. Thanks for writing to them.

Is there any difference between donating through xmrv global action or here? Is it just to keep track of total?

 

[KnightofZERO]

II.)

I've been wanting this too. Thanks for writing to them.

Is there any difference between donating through xmrv global action or here? Is it just to keep track of total?

Here is just to keep track of the total--- I thought seeing other people donating would encourage us that we aren't acting alone but as part of a team (and also we can keep track of donations) --since XMRV Global Action is doing the same thing (see Fickly's post below) to my understanding there is no difference at all except there you can set up automatic monthly donations whereas obviously you can't do that here.

Also if people want to post Donation Suggestions like that SeaShel mentioned the WPI facebook page seems to be checked regularly and might be good to post your message there in addition to emailing them. :Retro smile:

 

[Frickly]

Hi kdp,

With regard to your question below. If anyone would like to donate through XMRV Global Action it is easy to set up a monthly payment through facebook. I send $10 per month to WPI through the XMRVGA Cause. In our bulletin I asked that all persons donating in the name of "Adopt a Sequence" post a message on our cause board so that we can keep track.

Take care,

I've been wanting this too. Thanks for writing to them.

Is there any difference between donating through xmrv global action or here? Is it just to keep track of total?

 

[Frickly]

WPI post

This was posted on the WPI facebook page. Lets keep this going!

"Let's Adopt a Sequence- a friend of the WPI began this on about me/cfs board. Thank you "http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1388843

 

[cinderkeys]

If we want to get fundraising efforts off the ground, I think we need to elaborate a little bit.

1. What knowledge will we gain by sequencing?
2. What benefits will this have for ME/CFS sufferers?
3. What benefits might this have for the 3.7% of the population that is healthy and XMRV-positive?

I have a general sense that any knowledge about XMRV is a good thing, but resources are scarce, and I don't have a clear picture of how sequencing will do more good than other kinds of costly research. It's likely others won't know either.

 

[PoetInSF]

She says WPI hasn't been able to get funding "because of the efforts worldwide to make certain that XMRV has nothing to do with CFS." [from a personal email]

Now THAT is hysterical.

Most of us are poor, to say the least. However, if we were to donate only 5-10% of the money we spend on supportive treatments, vitamins and the like we could easily above and beyond $2,500.

My suggestion: save money till you know xmrv has something to do with CFS. Sequencing genes will do absolutely nothing for you because it does absolutely nothing to prove that xmrv has something to do with CFS.

I'll tell you, this is the same kind of BS that WPI pulled by offering XMRV testing before establishing XMRV has anything to do with CFS.

 

[Frickly]

Cinderkeys, I totally agree with everything you said. I think this is an awesome and creative idea that will get people excited about donating to WPI. However, We need to put a little more work into it and promote it further.

PoetinSF, I am personally offended by your comments. I do not think there is anything "hysterical" about this and I hope the moderators delete you hostile remark. In fact it is very important to many people. If this is not something you want to support then why post here?

 

[Knackered]

Now THAT is hysterical.


My suggestion: save money till you know xmrv has something to do with CFS. Sequencing genes will do absolutely nothing for you because it does absolutely nothing to prove that xmrv has something to do with CFS.

I'll tell you, this is the same kind of BS that WPI pulled by offering XMRV testing before establishing XMRV has anything to do with CFS.

What the hell is wrong with you? You slate the WPI and Judy in most of your posts, what's your problem? Why are you so angry?

 

[Martlet]

Moderator: Poet, that "hysterical" comment was out of line. I hope you will delete it.

 

[Adam]

Originally Posted by PoetInSF
Now THAT is hysterical.


My suggestion: save money till you know xmrv has something to do with CFS. Sequencing genes will do absolutely nothing for you because it does absolutely nothing to prove that xmrv has something to do with CFS.

I'll tell you, this is the same kind of BS that WPI pulled by offering XMRV testing before establishing XMRV has anything to do with CFS.

What the hell is wrong with you? You slate the WPI and Judy in most of your posts, what's your problem? Why are you so angry?

Do we really have to revive the donkey...hmmm?

I got an idea. Instead of posting write poetry instead.

I'll tell you

, you will, will you, THAT'S becuase you are some kind of authority is it?

No?

Now THAT is hysterical.

 

[KnightofZERO]

edited the title post

II.) I have edited the title post to try and make it more inline with everyone's suggestions. Mods, please edit title post at your discretion to make it more readable and as new information becomes available. I have been very ill lately and will likely not be able to make further improvements until at least Wednesday of this week.

One of the main purposes of starting a thread was so people could feel encouraged that we are all working together as a community. So please if you make a donation at least post and say something like "made a donation."

Please everyone let's try to use this thread only to:

A.) Make a donation and add any personal comments about your illness, this thread etc.
B.) Promote *alternate* ideas that you believe would be more effective by posting once to direct people to the thread you made for said idea.
C.) Add or update relevant information as you believe is necessary.

*If you want to criticize the idea or a public figure in ME/CFS research please simply use the poll to say you don't like the idea &/or start your own thread for that purpose*

 

[Frickly]

Dr. Mikovits answered Sequencing Questions

Cynderkeys valid points below prompted me to contact Dr. Mikovits and she replied with the following.

If we want to get fundraising efforts off the ground, I think we need to elaborate a little bit.

1. What knowledge will we gain by sequencing?
2. What benefits will this have for ME/CFS sufferers?
3. What benefits might this have for the 3.7% of the population that is healthy and XMRV-positive?

I have a general sense that any knowledge about XMRV is a good thing, but resources are scarce, and I don't have a clear picture of how sequencing will do more good than other kinds of costly research. It's likely others won't know either.

From Dr. Mikovits:
XMRV a new human retrovirus that is associated with two very different diseases, prostate cancer and CFS. The initial 3 isolates from CFS were highly similar in sequence to those cloned from the prostate cancer patients. The difficultly in detecting by PCR XMRV in different patient populations both in prostate cancer and CFS suggests there may be more variation (difference) in the XMRV from different diseased populations than our limited data suggested. The WPI and our collaborators at the NCI have isolated XMRV from more than 250 different patients and regions of the world prostate cancer, CFS (including the UK), Fibromyalgia, chronic lyme disease and autism. To have full length sequences of isolates from different disease populations would provide extremely valuable insights in how/why XMRV infection might result in such different diseases..XMRV is ~8000bp (a very small virus) and each sequence must be of the highest quality possible. THis is estimated to cost ~$2500.00 per isolate and the information could be used to develop more sensitive diagnostics, therapeutics and move research forward as fast as possible in order to begin determine causality and develop treatment protocols for XMRV infected people with disease and prevention strategies for those who are infected and not sick.

 

[Jerry S]

I don't pretend to understand the science, but if Judy Mikovits says sequencing is important, that's good enough for me. In any case, money donated to the WPI because of the "Adopt a Sequence" campaign will be used for a variety of valuable purposes - not just sequencing.

 

[PoetInSF]

Moderator: Poet, that "hysterical" comment was out of line. I hope you will delete it.

That wasn't aimed at the author of the original article. It was about the comment that was attributed to Judy M. essentially saying "the world is against us". If that is not hysterical, I don't what is. Feel free to delete it though, if you feel we should not be allow to criticize Judy M or WPI.

While at it, I think you should be more vigilant instead about ad hominems towards members not supporting Judy M. XMRV or WPI. (This place is turning into a temple of WPI cult.) I can deal with those if you allow them, but I won't since that is against the forum's policy.

 

[gracenote]

Cynderkeys valid points below prompted me to contact Dr. Mikovits and she replied with the following.

From Dr. Mikovits:

XMRV a new human retrovirus that is associated with two very different diseases, prostate cancer and CFS. The initial 3 isolates from CFS were highly similar in sequence to those cloned from the prostate cancer patients. The difficultly in detecting by PCR XMRV in different patient populations both in prostate cancer and CFS suggests there may be more variation (difference) in the XMRV from different diseased populations than our limited data suggested.

The WPI and our collaborators at the NCI have isolated XMRV from more than 250 different patients and regions of the world prostate cancer, CFS (including the UK), Fibromyalgia, chronic lyme disease and autism. To have full length sequences of isolates from different disease populations would provide extremely valuable insights in how/why XMRV infection might result in such different diseases.

XMRV is ~8000bp (a very small virus) and each sequence must be of the highest quality possible. THis is estimated to cost ~$2500.00 per isolate and the information could be used to develop more sensitive diagnostics, therapeutics and move research forward as fast as possible in order to begin determine causality and develop treatment protocols for XMRV infected people with disease and prevention strategies for those who are infected and not sick.

Thanks Frickly. I emailed and left a message for Michael Hillerby of WPI last week and have not heard back yet. You chose the more direct route and got great info.

(I added a couple of paragraph breaks to Dr. Mikovits' quote.)

 

[citybug]

I think this thread is such a great idea and we are funding research in our small way. I think the genetic sequence allows them to look at exactly what XMRV can do, and how to stop it. There is past research about the parts of the sequences that are the same in mice that they can build on. No one will have the answers to how important this is in ME/CFS until the research is done, and WPI is doing it.

I wrote to Mike Hillerby too about some fundraising questions and got no answer either. I'm trying the info line. I don't want to bother Dr. Mikovits, but if someone has relationship with her, I think it would really help to have some budget information. People throw around that they have X millions without backup. If we had some line items for projects they want to do that aren't funded it would help in general. Here we have one, and it is being addressed!

 

[Adam]

Strange, I have not seen anyone on this forum criticise Judy M, or as I call her 'She who must not be criticised' who has tested positive for XMRV.

 

[cinderkeys]

Enlightened

Aha! Thanks Frickly. It just blows my mind that you could get a response so quickly from Judy Mikovitz herself.

So, if I understand what she's saying, sequencing the genomes of people with XMRV will provide data about how the retrovirus interacts with different genes. Depending on your genome, XMRV might increase your risk of prostate cancer, or ME, or both, or neither.

Does that sound about right? I want to make sure I comprehend this myself before attempting to promote to the masses.

 

[citybug]

I haven't been tested and I know there are a lot of negative tests out there. I think it is a reason why people here want to stand back and wait, but this is where the research is, and if we don't support it who will? I was in Kerr's study a few years ago and have yet to get the results, or treatment recommendations. It is untraditional to give information to patients, or to be concerned about their welfare, but that's why we like her.

 

[citybug]

So, if I understand what she's saying, sequencing the genomes of people with XMRV will provide data about how the retrovirus interacts with different genes. Depending on your genome, XMRV might increase your risk of prostate cancer, or ME, or both, or neither.

I think it is the genome of XMRV, not the people. Different people have slightly different XMRV. (In other studies they look at the genes of people).