Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 10, 2014.
Thanks for letting us know, Tuha! Brilliant
Here it is (thanks Tuha): https://www.facebook.com/CII.Columbia/posts/10202414687581465?stream_ref=10
Canary film: https://www.facebook.com/canaryfilm/posts/361930483944691?stream_ref=10
And if anyone'd like to add me on FB just 'cause that's one more channel of communication and it's easier to share things, feel free to add me; please just tell me whether you're from PR or we have mutual friends or whatever so I can approve you faster: https://www.facebook.com/Rom5hope
My educated guess as to whether a pathogenic human microbiome would produce useful information relevant to humans is no. It appears likely to me that even a healthy human microbiome would cause illness in a different species, just as a healthy monkey/rat/mouse/pig/dog/horse microbiome would probably cause illness in a human.
With Lipkin's reputation and apparent expertise and intelligence I am surprised that he would even seriously consider such research, unless it were to satisfy regulatory authorities prior to clinical trials.
But, like I said earlier, an animal model plays no part at all in the research that we're being asked to fund now. This $1 million project is to determine whether there's an association between particular pathogens in the gut and having ME. We need to know if that's the case, just as we needed to know whether XMRV was associated with having ME. That's what started the whole cascade of enormous, unprecedented interest in our condition over the last few years: apparent evidence of the link between a specific pathogen and having ME. Even though that didn't pan out, it caused all these new scientists to notice our disease and get involved. Once we've established a firm association between ME and a pathogen (or pathological process), we're in business and that's when more and more scientists will leap on the bandwagon.
We desperately need this study.
You make a lot of good points and I agree that replicating a human microbiome in another species (whether it be healthy or the unbalanced one Lipkin is hypothesising) is a very difficult task and is likely to be for the most part unhelpful, it is however only suggested as a possible route to go and I don't think much will be done with it even if it ends up being looked at. I think we may be blowing this small suggestion out of the water, certainly this study is not worth overlooking because a small potential part of it may or may not use an animal model - which may actually be of use as there is little work done to date trying to replicate human gut microbiome in animals and we could learn something that may even aid further studies in the future. As a firm advocate of the leaky gut hypothesis i'd have thought this study would be something you'd think is worthwhile, I know I myself like to pick out the problems in studies that I think are promising in hope that the problems can be ironed out.
I totally support @MeSci's right to raise her heart-felt concerns about research using an animal model.
We can promote the study, and fundraise, while acknowledging and accepting people's concerns.
But just to be clear, this study does not incorporate any animal testing.
The only reference to animals in @Simon's article is the following:
Re: Concerns raised or questions asked.
We will be contacting Columbia and seeking more information to hopefully provide some more reassurance where necessary. The replies will be posted, or a further article will be generated, as soon as we can.
It is only Day Three and the Group is really only bedding down. We just need a bit more time to hand-over from the Content Team to the Group and then to work back through the comments, here and elsewhere. Hopefully, many questions have been addressed, but outstanding ones will be raised as will concerns.
I have just read the proposed study carefully. I think is a very elaborated and intelligence way to approach and perform a good trial, to try to find out a possible microbial cause (or at least implicated factors) for ME/CFS. I hope it can be finally done.
One of the main goals is to find the "bad guys", right? Well, I think we know some of them very well, and other not that much, but in any case, they should contribute to the possible success of the study. I am talking about the "old guys" (EBV, CMV, HHV6...), the "old and now more famous guys" (Borrelia, Batonella, Chlamydia, enteroviruses...), and of course, he's talking about these bugs probably be hidden in the WBCs... Well, I want to remember that Dr. Kenny De Meirleir et al found plasmacitoid dendritic cells (specific macrophages of the gut) expressing HERVs (Human Endoretroviruses), and probably guilty for an excessive and improper immune activation leading to CFS symptoms--for these cells to do so, they must interact with some of the guys I mentioned before!!!!
So.. I think a lot of work has been made so far, and it is time to put it all together. I root for this study, hoping it counts with the evidence available up to date.
Wow. This thread has quickly become the latest hot topic. And rightly so.
But even after the guilty bug is found, what type of treatment would be likely to eliminate it?
Antibiotics, antivirals, herbs, supplements as well as a cohort of alternative medicine has already been self-administered empirically by many PWCFS.
What could be left that has not been tried yet....
I don't want to hijack this thread or cause any confusion, so have started what I hope will be a series of blogposts (time permitting) on important species differences relating to this line of research. The first one is here. You are welcome to leave constructive comments there.
I fully acknowledge and applaud Lipkin's proposed initial research, for which he seeks funding, as stated earlier. It was just undermined for me by that suggested proposed follow-up research, the quote re which I posted with its preceding paragraph earlier in this thread.
It's hard for anyone to draw conclusions from individuals with our binbag diagnosis dosing themselves with all sorts of different stuff for different periods of time with all sorts of confounding factors and without those patients knowing what bugs they were going after. Targetted therapy with a rationale based on specific testing would be a very different matter.
Has Dr. Lipkin applied for a NIH grant for this work and been denied? Because If I write to the NIH or congress etc.. and ask for them to back this research project, the first thing they are going to say is he needs to apply for a grant. We need some way for him to get money with out having to go through the grant process. Like when the CDC hired him for the XMRV issue or how the NIH coughed up a million dollars for the IOM mess.
Maybe someone could make a youtube video about Lipkin's study, to encourage people to donate...?
Just a thought.
As somebody who brought up the idea of crowdfunding for CFS research as a way to raise money for CFS research, I'm not happy about Lipkin coming to patients for money.
My original concept for crowd funding was to fully vet the research projects through a crowd sourced web review before funding anything. This would include a full disclosure on how the studies were designed and who is doing what. A full review would allow full input from all the experts before a dime was spent. Everybody's name would be on it with a clear vision and goals.
Additionally, crowd funding was intended to fund guys Like Rich Van K and other independent people who are not boxed in or associated with politics.
Crowd funding truley independent people outside the "establishment" with clear goals and much input from everybody was the goal.
Crowdfunding is a way to change funding, if done correctly. It provides a unique opportunity to fully vet a project. To select the best project, and to insure money is used correctly with accountability. Most importantly; to have an independent study that produces something useful for the community. Tangible and usable results.
Like I said to @Jon_Tradicionali and @Daffodil, members are free to donate or not to donate to Columbia whether it be for financial reasons (like @Bob said) or because they have doubts and queries about the study. I am compiling an email to Columbia that contains all these questions and as much as anyone would like them resolved as fast and as unequivocally as possible.
When I was helping (in a very small way) Simon put the article together I asked around for people's opinions on researching the microbiome for ME and heard from many De Meirleir patients and others who complained that funds should be given to their researchers, not Lipkin. My immediate gut reaction was (if you'll excuse the pun): well if you feel this strognly about it, why don't you try to organise a campaign for him? As should be obvious, even the person with the least experience or knowledge of these things (me) can initiate such a campaign--it's just that I need tons of help.
I am also a little confused as to why you think any results that Lipkin sees researching the microbiome would not be "tangible and usable" even if other points that you made are valid; but perhaps I'll let others jump in here.
Brief introductions to the microbiome
If you want to know a bit more about the microbiome and key research in the area I would recommend :Gut bugs misbehaving? The microbiome and ME/CFS (well, I would, I wrote it).
For a short and entertaining introduction check out the video below - only 5 mins, good animations and good science too:
I am happy to report that I just received an email from Columbia that says that yesterday (2/11/14) 66 gifts were received for the microbiome study for a total of $5,312. Thank you so much, everyone!!
Can people be aware that in the special instructions box you have to type in
for the microbiome study’.
I didn't see this until after I'd donated
I suggest you bung them an email or phone them - here are the contact details on the donation page:
You can also try a Google Site Search
Separate names with a comma.