Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 10, 2014.
Ta Simon (and Prof Lipkin)!
I've written about some small scale mecfs microbiome research here (Gut bugs misbehaving? The microbiome and ME/CFS), but its' not on the scale of Ian Lipkin's new study and none of which has produced a 'prior result' that would guide treatment trials. If I've missed something, please let me know. Ian Lipkin is talking about results 'within a year' from this study, which I find very encouraging
As for Big Data, I agree it needs the right expertise and it's not one of Lipkin's qualifications - but he has assembled a team of biostatisticans at Columbia, precisely to tackle this kind of work.
I agree with Sasha about diagnosis (and am equally happy for people to take part in the Amercian Gut Project) - the patients in this study have very carefully diagnosed (Canadian Consensus Criteria) and the diagnosis is confirmed before new samples are taken.
I'm in. We are fortunate to have a researcher of Dr. Lipkin's caliber focusing on ME/CFS. Let's get behind this research in a big way!
Looking at the past history of ME/CFS funding you'd have to say that nobody is going to do it for us.
Terrific, Marco, thank you. That's an interesting point about how much many of have spent on treatments that have gone nowhere (certainly I have been down that route).
If you really want theme viewing you can watch Ian Lipkin's lecture at Oxford last year - a good chunk of which is about Contagion as well as some really bad science movies:
We are working on it. The pressure will most likely need to come from Congress and of course a more unified voice from the ME/CFS community. More to follow on this plan very soon . . . Lots of working on this as we speak.
And invest in me managed to raise £100,000 for a gut study that is happening now too
Very true! I think they raised the money first over a considerable period of time (2 years?) before deciding what to spend it on (somebody correct me if I'm wrong). It would be interesting to know what would have happened if they'd specified the project beforehand. I think that's crucial to rapid success - an exciting project that everyone wants to get behind.
But you're right, £100k is a lot (about $150k) and the UK is only about 63 million people - a fifth the population of the US. The US (and us overseas patients donating too) should be able to crack $1 million in about five minutes.
I'm very interested that Lipkin thinks treatments might involve restricted diets amongst other things. I've always caused myself a lot of stress and angst about diets. Mainly because I am not convinced enough to have the willpower to stick to them and then I feel guilty. However, if it was proven that a restricted diet could definitely help I might finally summon up enough willpower to follow one
I will certainly donate
I remember reading of a young woman who went to KDM in Belgium. She hadn't been ill for very long and he, like he does with many of is his patients, put her on a rotation of antibiotics and probiotics. She completely recovered. Yet I have heard of others who have had similar treatment of abx and probiotics from KDM with some improvements, not always, but not full recovery. I wonder if treating the gut early on in the illness increases the chance of full recovery before the downstream changes of long term immune system activation, I think it's great that someone of Lipkin's calibre is interested in our illness. I hope we can raise the funds
No reason at all to feel guilty for not sticking to diets that do not have good evidence of benefit! There are so many things that could be helpful, but could be unhelpful or worthless than PWCs could drive themselves crazy if they felt pressured to do them all!
My philosophy is to regard everything I try - supplements, prescribed drugs, diet changes like a lottery ticket. Give it a go.
Nowadays I'm careful not to put too much investment in (ie more belief, money, or effort than I can afford) , see what happens, sometimes I get lucky sometimes I don't. I have been fairly lucky and got some really good results. It works for me because its good to have a supply of low-grade hope.
I donated to Maria's Norwegian Rituximab thing (and maybe the UK one too, can't remember) and I'll be donating to this one too. More lottery tickets.
How refreshing, after the interview with Dr. Unger!
Dr. Lipkin may lose out to this kind of thing...
I believe that Dr. Lipkin used the CCC in defining his cohort. Would he be willing to elaborate?
Overthehills, my problem is food is one of my only pleasures left and it would take a lot of will power for me to keep to diet strictly. I managed one ten years ago for three months and it was so hard. I did feel a bit better for a short time. However, to cut out all my favourite foods ans really tackle my cravings I would have to b convinced it would work
Other treatments I do have the philosophy of let's give it a go with no great expectations but diet is different for me
@esther, thanks for your absolution, it is appreciated. Would you only go down the restricted diet route if Lipkin showed good evidence it would benefit? I think if I. Am honest to myself I would only manage it if I was presented with good evidence for the Benefits of denying myself foods I enjoy. I don't eat much gluten as causes upset tummy but apart from that I don't cut anything else out at the mo
I don't think I have donated to a specific research project for several years. Funds never really permitted me to. But this one has just received a donation I am delighted to report
This project, the interview, the many discussions, the sharing of concerns with Columbia, and the final article itself, have taken more time to put together than I think anything else I have worked on since joining Phoenix.
It is well worth supporting this effort I think. I was skeptical at first - as is my want - but I do think this is a very necessary area to investigate - along with the continuing cytokine work.
ME Science is turning the corner and I have started to feel more positive that something will come of all these high-powered and significant studies.
It's been a 14 year sentence for me thus far, it's great to finally be seeing scientists of caliber appear so confident about my disease. Hell, even my father was convinced - and that takes some doing, believe me
N.B. Don't forget when donating, to specify that you would like your money to go to the Microbiome Study. Just to be doubly sure it gets to the right one
Yes, make sure to do this.
I know exactly what you mean. I saw Dr Myhill and she is completely dogmatic about a Paleo diet. It was really hard to get the mental energy together for something like that, and at the time I was so sick that food was one of the very few pleasures left. The paleo diet made me feel worse by the way! anyway I'll stop going OT now - hope those who can will support this appeal..
At the time invest in Me said they wanted to set up the first research centre and clinic for pwme in the UK at East Anglia university which would offer research then translational (is that the right word?) treatments to patients. So there was a target so to speak which is why I think people got behind it. As it happens the money is going towards the gut study at the. University. Am not sure where they are at at getting a doctor to see patients. I think they are having problems with the university to agree to it. I think it took about 18 months to raise the money, but perhaps it was 2 years, sorry can't remember
Thanks OverThehills. I consulted dr m and also found her very dogmatic re stone age diet. Low carb makes me feel very ill too. I do better with some starch. I probably would do better without the sugar but it's my small daily treat. Sorry for going off track
lol - happy to help! I'm really not keen on trying anything unless there's good evidence it will actually be helpful. I think that living with a health problem is hard enough already, and I don't want to waste time and energy on needlessly medicalising extra parts of my life. I prefer to just play about and do what I feel like, and tbh, I think this is probably marginally better health-wise too.
I understand why other people want to try different things just in case the happen to find something that works, but I don't think that this approach should be seen as 'better' or more noble than mine. It is easy to slip into thinking that if you're ill you have a responsibility to recover (and this is sometimes laid out as an explicit part of the biopsychosocial model of disability), but I really don't think that's reasonable if there's no good evidence for how to recover - it just becomes an unfair pressure.
Anyway, best of luck to all, however we decide to manage things. Hopefully researchers like Lipkin will progress in a way which means that we no longer need to work out how to best live with on-going health problems!
Thanks and congrats to all those involved.
I'll be sure to make a donation at the end of the month, even if it's not a big one. (That way I'll be able to take some credit if it leads to a useful treatment!)
It occurred to me that the more we can raise a patients for this study, the more it would help put pressure on those in authority with the money - just as MEandYou helped persuade the Norwegian government and research boards to fund the Rituximab trial.
I'm strongly in favour of advocacy (thanks @Wally for all you do) and wonder if the money we give, as well as our voices, can help pile on the pressure.
(@Ember Dr Lipkin said he's planning to use a NIH cohort - pretty sure that was the one recruited for the XMRV study but made available for other studies too and I thought that used CCC - but presume you would know.)
You can also try a Google Site Search
Separate names with a comma.