Discussion in 'General ME/CFS News' started by Sasha, Aug 14, 2013.
15:30 – 16:00:
23:20 – 23:55:
I think if he meant he found an endogenous retrovirus (as described by Bob above) he would have pointed that out to try and help quell the storm over the finding especially since no endogenous retrovirus has been shown to cause disease, at least not yet. I can no longer keep up with much of the research but I believe there is still work on endogenous retroviruses in M.E.
I believe he was forthcoming on this topic because he's going to publish soon and he didn't want to be accused of a cover-up once all the data became available. I also believe based on his statements that he found a replication competent retrovirus, either a recombined endogenous retrovirus or one contracted externally - I'm guessing the latter) that for some reason he believes will not pan out for M.E.
I find it interesting that after this initial, and pretty extensive, survey of blood and CSF - despite not seeing a pathogen that he believes is causative that he will find a pathogen that gives us so many flavors of the disease and measured disease state.
Replication competent retroviruses would be capable of generating an immune response.
Endogenous retroviruses are latent in DNA and incomplete and would not affect the immune system.
I don't know what sort of retrovirus was found by Lipkin - surely retroviral "fragments" if in blood would need to originate from a tissue where they are replicating?
I agree this is a summary of Lipkin's talk on the CDC call. I was 99% sure it was Cort based on the writing style and I think his response to the first comment confirms it.
I just listened to the recording. He was using the High Throughput Sequencing technique they uses to "find over 500 viruses" and that they found "retroviral sequences". They were found only in Dr. Montoya's patient samples which may be why he thinks this won't be a "pan out" CFS but it needs to be explained.
I don't know how much of a sequence this technique obtains but since he didn't call it a viral protein or fragment he must have some confidence that it's an actual, replication competent retrovirus and not an artifact. Since he also went out of his way to say there were no novel pathogens found that this must be an existing retrovirus - which in human terms is a short list.
I apologise for forgetting who it was who it was (edit: it was Sasha here), but someone stated that Lipkin wld SURELY understand the process of applying inside out and would be best for doing this! which is why i was somehow astounded that he was appealing to US so hard abt pressuring congressmen, although it's a totally reasonable appeal. Again would've helped if he'd given a ballpark of how much he needed (we don't even know how much is carved out of the CFI's $10mil for the pathogen study).
While all those are great institutions I want to add to what currer said... that honestly I challenge anyone to come up with a more esteemed person to research into our illness than Prof Lipkin. PERSONALLY, I feel we should fundraise for him. Face it, have we EVER got such a high profile and trustworthy person to look into that most basic thing which is what causes our illness?!?!? It frustrates me when places get $1m donations which then all goes into a study of, of all things, PEM. I'm sorry.
Again surely if anyone's going to get a grant it's going to be someone with the stature of Lipkin, so when he tells us three times in what, 40 minutes that he needs money, it just seems a foregone conclusion to me that efforts to fundraise should be focused on him. THis is someone looking for the cause of our illness. Which pardon my common sense would seem the most logical place to start.
currer...demeirleir seems to have collected quite a bit of evidence in support of the HERV theory. it was never my favorite theory but i am starting to think he is right
Rather than update a 45 min old post, I'll write one more to clarify the retroviral sequences being found only in Dr. Montoya's patients.
I've listened to a recording, specifically the part speaking about retroviruses, and Dr. Lipkin clearly says that they were found in Dr. Montoya's samples and apparently only his samples. "I'm going to be very clear in telling you although I'm reporting this at present in Professor Montoya's samples neither he nor we have concluded that there's a relationship [of the retroviral sequences] to disease"
In his presentation, Lipkin said he had only 10% of the money he needed to complete the tests on the fecal material collected from the patients. I emailed him and said some of us are willing to fund raise, and I asked how much more he needs. I also asked what the conduit would be to contribute the money. Hopefully, he will not overlook my email in is mail box.
If anyone here has some ideas please add them. As far as I'm concerned, we are lucky to have Lipkin. He is a world class scientist who is highly motivated to find something. He is not the type to give up easily. But if this moment slips away from us, I don''t see another one coming along any time soon.
One thought. Who were those people who asked Obama about CFS, and who are now in touch with his administration. Maybe they could explain how this is a chance of a lifetime, and we need financial help. Maybe they can pull some strings.
If they were doing testing there, I would do the 2 day test when I went to see Dr Rey. I have to stay 2 days anyway. It might be a helluva trip home, though, via plane and car. No, wait, I'd have to stay another 2-3 days for them to collect the data. (Fatigue scale? Seriously? Can't we do some objective measures? ) It's starting to sound like only people very close to the testing site(s) are viable candidates. That severely limits the patient selection, imo.
I don't know if this is any better - but I amplified the other lipkin recording a bit - should be a bit easier to hear...
I don't know abt the Obama ppl, but Bob Miller or his wife personally asked the president to prioritise CFS... correct?
edit: Andrew and thank you *so much* for writing to Dr Lipkin for us. Heaps and I wanted to do this, but you beat us to it
And AMEN on your second paragraph. Don't mean to sound like an old record but I really wanted to get this underway even though I have ZERO advocacy or fundraising experience. all i could do as an ignoramus was to post a poll but I KNOW there're ppl way more in tune with this who can get the ball rolling much better than me.
Lipkin indicated that he has been in contact with both Tom Frieden, the head of the CDC, and Anthony Fauci, the director of the National Institute for Allergy and Infectious Disease, and that they understood how serious m.e. was.
Frieden, as a relative newcomer to the CDC, bears very little responsibility for our situation. Fauci bears a great deal.
He was the prime mover behind the transfer of chronic fatigue syndrome from the NIAID to the purgatory of the Office for Research into Women's Health in 1999, where it has languished. Google his name and chronic fatigue syndrome and he is revealed as a major psychobabbler, endorsing fanciful and malign views peddled by the likes of Stephen Straus and Peter Manu.
By Lipkin's account, he has moved on.
Fauci could demonstrate this by moving cfs back into the NIAID. This would be only a beginning, a small gesture of good faith, but it would send a very important message to the larger medical world, that this is a life changing, disabling illness worthy of research and treatment.
And there you have our problem. Nobody sees it as a problem to anyone except us. With AIDS, yes, people were dying, but also their healthy family and friends believed AIDS patients were ill. Many, many healthy people were afraid of getting AIDS because no one was certain how is was transmitted. Even after it was determined that HIV is blood/sexually transmitted, there were plenty of healthy people who felt themselves at risk and therefore had some investment in discovering the nature of the disease and treatments. It was largely those healthy people who did the advocacy work. It was only later, when HIV could be detected before significant symptoms began, that sick (but functional) people became involved in advocacy.
We don't have a healthy population able to help with advocacy, or who are wealthy enough to pay our uncovered medical bills and donate substantial amounts of money to our cause. We PWME and the very few who are supporting us are already at our physical, emotional, and financial limits just coping with the disease with almost no help from social services, the medical community, or the government.
No one who is healthy is afraid of catching it from us. The few family members who believe we are seriously ill are often swamped with the cost and effort of supporting us. The rest of our families, friends, and neighbors don't think we deserve their support, and they don't fear they might be the next person to come down with this dreadful illness. Thanks, Reeves and Wessley.
What we do have that HIV/AIDS patients did not have is connectivity. The internet may be our savior because even the very sick among us can communicate at some level via the internet. It doesn't make the same impression as thousands of us marching on DC, but it can be powerful. We just have to manage our approach to meet our capability. I wish I knew how to do that.
havent they spent millions and millions on MS now? didn't that author of harry potter give millions to MS research? have they found an answer to that yet? is it really a matter of money?
well some may disagree but i'd much rather they had money to try find the cause than none at all to even make that first step. who doesn't want to find the cause of their illness???
As I understand it, while they don't know all the answers, they are now able to improve the prognosis in some cases of MS.
Also, that is just one example. I'm no expert but my impression is the prognosis for many conditions now is much better now than that it was a decades ago, following research.
Also, proper knowledge about our condition has the potential to stop so much of the doubt and psychological speculation we have to deal with, the relative lack of support we get, etc.
A transcript (in progress) of Dr. Lipkin's presentation is being posted here.
No Daddodil. Because of Congressional Sequestration, NIH funding is very tight as alluded to by Lipkin. Many research labs across the country are having extremely difficult time securing NIH funding. Unfortunately until the Congressional deadlock is abated, any research for funding will have to come via private foundation or donations for now. However, this does not prevent governments in other countries funding research in this area.
MS research has been ongoing for the last 70 years or so and only have a few drugs available within that time frame. Although significant strides have been made throughout those years, treatment for progressive MSers is still a ways off. New promising clinical trials are under way. The MS patient community is equally fustrated by the lack of treatment options, funding and the attitude of doctors as those in the ME/CFS patient community.
There is a excellent explanation at Simmaron Research on the recent Lipkin/Hornig/Montoya et al. CFI.
You could contact him too. It would certainly not hurt. And btw, I have no fundraising expertise either. I just thought having a goal would help with fund raising.
You can also try a Google Site Search
Separate names with a comma.