Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 10, 2014.
' Good Gut Hunting'. I love it. Very original!
Sorry - my link won't open for some unknown reason (at least for me). This may be the study in question but, if not, it is a good enough one!
Here's an alternative link in case the pdf one doesn't work.
Re the point about HIV, this is a different issue, as HIV is known to be caused by a specific virus. I don't think this is likely to be the case in ME, at least not most cases. Lipkin may have previously been looking for specific pathogens but I think he may have changed tack. This recent PR article may clarify:
Re other evidence for treating ME successfully by changing the gut microbiota through diet, supplements, antibiotics, etc., there is also the small Maes and Leunis study
@Simon, does the campaign still want name suggestions (post 179)?
If so... Cash for Cure // Fund Microbiomic Exploration // Cure Wanted // The Million Dollar Answer // No stone unturned. // Explore. Record. Cure. // Battle of the Bugs // Lipkin hates loves your guts!
Perhaps Lipkin could auction off the naming rights (of new bugs) to the highest bidder (with a guaranteed lowest bid of course)?
Hi Ren - we're no longer in the market for names - currently drawing up a shortlist from the ones produced on the dedicated thread for that - sorry you missed it! Thanks anyway.
I love that idea of an auction of naming rights! I'll add it to the list of possibilities.
I am surprised that Lipkin suggests this - although I take on board it all depends on the findings of the study - as I know quite a few people have tried this, especially KDM patients, with not significant benefits in many. I remember reading about one girl who went to see KDM after only being ill for a short while and did the abx probiotics rotation and did recover. I wonder if abx and probiotics work better at the start of the illness before the immune system gets very dysfunctional, all speculation of course
Anyway I still very much support this study and all the work Vli and team are doing in trying to get funds raised
Please note, I have taken 20 or so posts from this thread and created a new thread here
Please try to stay on topic on this thread.
PROHEALTH An Interview With Ian Lipkin - An Ambitious Project to Study the ME/CFS Microbiome
Good news: ProHealth have picked up the appeal/interview, and hopefully this will bring in a few more donations!
If you can tweet, or facebook like or otherwise promote the ProHealth piece that would really help the appeal. Thanks
Well done Simon
Does anyone have an update how much has been raised so far?
Our contact for this at Columbia returned today and I am happy to report that as of today, we have raised $14,186 from 154 donors
Not a bad start, but still a way to go. Thanks to all those who have already donated.
ME Association bringing Ian Lipkin over to UK for conference and raising money for his trip
Thanks to the excellent new ME Global Chronicle newsletter for giving this appeal a mention:
They also carry a brilliant editorial from Prof Leonard Jason:
Ian Lipkin has mentioned more than once how impressed he was with the way HIV/AIDS campaigners pressured government to do more. He was a newly-qualified physician when he arrived in San Francisco in the early 1980s, just at the then-unamed AIDS epidemic was taking hold; at that time many doctors were reluctant to treat these patients and he told me about some of the problems he had persuading colleagues to let provide novel treatments to his AIDS patients. He also mentioned how some of the first HIV research was funded by private donors, work that persuaded a relucant government to fund more research.
I have reached a similar conclusion to the cause of CFS/ME and I support this study 110%
The-Human-Microbiome & Acquired Mitochondrial Disease
Update on amount of funds raised (every Friday!)
Thanks to all of you, as of today we have raised $14,895 from 169 donors
Our disease is NOT caused by Lyme, mold, herpes viruses, gut bacteria, or anything these specialists are trying to look for and treat. These are infections our bodies should be able to control.
It is AUTOIMMUNE. see the new paper: Transcriptional de-repression of ERVWE1 following influenza A virus infection.
Again, the ONLY researcher I am aware of, who is looking at this factor, KDM/Lombardi/WPI.
Why do we continue to support the search for pathogens? I find this very frustrating.
Of COURSE we will have pathogens, gut inflammation, differences in gut flora. This is a given.
I urge you to support those who are narrowing in on the true cause.
some HIV drugs helps some people because they act on HERV. Ampligen helps some people because it makes us produce interferon, so our bodies can again control the infections.
I am so scared that these pathogen studies will be more of a waste of precious time some of us do not have.
Taking a cue from Wally's comments, I added an extra $25 on behalf of those patients who cannot afford anything at the moment.
(Excuse delay in donating, had to clear a couple of largish and unavoidable bills first.)
Is there any chance of getting an update on how the crowdfunding project is progressing? Are there updates on another thread that I'm not aware of? I wish I could help, but I can't do anything other than contribute funds, and I'm a bit anxious that we not lose momentum.
See post # 235 above.
We are I think able to confirm that we should have our primary plaforms - website and Facebook pages and twitter feeds - launched before the US conferences begin 19/20 March at which both Montoya and Lipkin et al will all be presenting. Hopefully, the presentations and interviews, will provide a boost to the campaign efforts so we wanted to ensure the platforms were in place by then. Also if any announcements are made with regard to publication of papers pertaining to the CDC Broadcast last year from Lipkin, or Montoya's more recent seminar on the subject, then the campaign would - we think - also benefit. Any announcement would of course likely be made at these conferences.
So, we are resolving issues relating to: name, platforms, donation methods, content, logo's and images, lining up interviews on video etc. etc. and expanding our network of contacts to reach a much wider community across the world. We will shortly be engaging with members of the medical community who we'll be hoping to bring on board including those who were involved with the blood study, that Lipkin spoke about in his CDC broadcast.
The conference presentations will be followed up with articles that can help continue to raise awareness of the campaign, and we have people at both conferences to record and pass back information as it happens.
We have also posted this article above to co-cure, and we have a Spanish translation that I will hopefully publish this week. Further translations of the campaign work - and the campaign itself - are something we would like to work on and are approaching others to help us do this.
So, hopefully, you should see the fruits of this voluntary labour in coming weeks and as a result we hope the campaign contributions will really start to stack-up.
Hope that helps.
You can also try a Google Site Search
Separate names with a comma.