Discussion in 'Phoenix Rising Articles' started by Mark, Jul 1, 2013.
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I would like to see Open Medicine do a study in which they use the ERMI test to evaluate the relative moldiness of the homes of patients who are still living in the same place where they got sick. If (as I believe will be the case) the homes come up as being particularly moldy, then this would establish living in a moldy home as a risk factor for acquiring the disease.
This would be a relatively low cost study, and I have funding lined up from a wealthy entrepreneur who has an interested in mold illness and CFS. So far though, I've struck out at trying to get the people involved in Open Medicine to take mycotoxins seriously.
I wonder what would have to happen for them to change their minds.
Lisa Petrison, Ph.D.
lisapetrison at yahoo dot com
Hi Lisa - It must be very frustrating to be holding a big bag of cash for a project that you want done and not to be able to get it underway! I wouldn't expect OMI to be 'for hire' like that, though - they've drawn up a priority list of research based on their conference of experts and they're working through it as fast as they can get those topics funded. The project you're suggesting isn't on that list and didn't undergo that process of consultation and prioritisation.
Thank you Sasha
And additional thanks for the (hopefully) clarified position pertaining to charity status. Donors will be reassured about that I am sure. At least you should be able to legitimately claim your tax back on any donations.
Last time I checked there wasn't a great deal of detail about these proposed studies - other than the designation and fundraising desire - on their website; but I will check again later. It will be hard to organise the e.g. Rituximab study I suspect but that doesn't mean they shouldn't try. And others e.g. Invest in ME in the UK, are going about it in the same manner i.e. raising funds before having the specifics ironed out. Of course it would make me personally more comfortable if the cart had been placed before the horse - but that's just me.
I remain cautious however about Kogelnik simply because he is treating patients with Rituximab outside of any registered clinical trial or registered pilot. But that's just me and I don't really want to get into that. We did all of that on a previous thread. I'd be interested in learning some more about the team he has working with him at the Institute on a daily basis - the personnel and the infrastructure at some point.
Ember flagged a $1 million donation to OMI back in May, from the Edward P. Evans Foundation for that genetics study. Although it would suggest the cost of that project is significantly more than you have listed above? Though perhaps not all of it went to the one project. I don't know it was a while ago now. But at least then one project is fully funded. I wonder what the situation is now? Maybe there is some news on their website.
Thanks for the helpful article, Sasha.
Something caught my eye (bolded):
"A biobank of blood, cerebrospinal fluid, urine, stool, brain and central nervous system tissue and other samples will be collected both from patients and controls..."
It seems like a comprehensive list of tissue types!
Yikes - hands up who's volunteering for a brain biopsy.
Yep - they want our brains! Just not yet (I'm hoping).
Good spot, Bob and co. This is interesting as I have literally finished transcribing a talk connected to the proposed UK post-mortem tissue bank. One of the things discussed was the feasibility the practicality and ethics of brain biopsy; hence the need identified for a post-mortem bank. You can do live brain biopsy - but they are risky and require general anaesthetic of course. Also I am not sure (because I am a prat with no medical knowledge!) what use tissue that is able to be extracted from a live brain could be to ME science... Now if it was a post-mortem bank they were proposing, well I can see how that might be feasible: and a first for the USA if I am not mistaken.
Thanks for a great article, Sasha. I am always amazed by the OMI's ambition, and their ability to pull in the big players in ME/CFS research.
Bit puzzled by this, which seems to be covering the same ground as the larger ($) Mady Hornig/Lipkin pathogen study - hard to think they will do better than Hornig and Lipkin at virus detection... The OMI do mention other samples beyond blood, while the Hornig study is just using blood, and for some Cerebro Spial Fluid at this stage, though they hope to add more tissues later.
Various groups intend to carry out Rituximab research as well, before Fluge and Mella have completed their larger study.
I suppose they think that more good-quality research can only be a good thing, if carried out in areas that they think will be productive.
Replication isn't harmful, after all.
You know me so well !
Though really a replication needs to be careful to use the same methodology, or be explicit in why it is taking a different approach. Otherwise you can get, all too frequently, researchers asking similar questions but getting different answers where it's not clear if the difference is down to methodology - so nothing gets confirmed or replicated.
Hi Firestormm - I'd assume the OMI projects have been fully costed (the costs are pretty specific) and hence have fairly detailed protocols behind them - I wouldn't expect full protocols to go up on a fundraising website, though. The Rituximab/Valcyte study is very expensive and I'm assuming that the OMI is going after the government and other big institutions for that one - they'd need a full protocol for that.
IiME, on the other hand, have been explicit in stating that they don't yet have a protocol or a costing or (I think) any researchers or institutes on board for sure - they're intending to put those details up once they've been hammered out. I don't think that's the same as what the OMI are doing. I agree that there's a bit of a horse/cart issue with the IiME project and I look forward to seeing more detail. It's a very exciting project for us in the UK especially and I'd like it to succeed. Once they get more detail out, I'd hope to see an acceleration in support.
Nothing on mitochondria?
Hopefully, with these brain tissue samples, the researchers will look to see which viruses have invaded the brain, and perhaps, like one previous brain autopsy on an ME/CFS patient, confirm that the glial cells of the brain are infected with enteroviruses.
OMG, what a tragic story. This piece about wrong assumptions is so powerful and true and should be installed in neon lights in all the psychoquacks' offices:
"That if there is no concomitant illness definable by the doctor, then it must be all in the mind. Varying hypotheses have been put forward to explain this. None of these are really convincing to those of us who have worked in the field for many years, and indeed cause us considerable distress, though this must be minimal compared to the distress felt by the patient when the effects of the illness are compounded by a negative approach, sometimes amounting to a denial of the illness itself. This has resulted in suicides in some cases, and the very act itself is then seen as verification of the original "all in the mind" diagnosis."
Indeed. The author of the brain autopsy study, Dr John Richardson, was a GP in Yorkshire, UK, and 50 years ago Richardson helped lay the foundations for the enteroviral theory of ME/CFS.
In those early days, 50 years ago, the psychoquacks had not yet got a hold of ME/CFS, and Richardson's repeated observations that ME could appear following a coxsackievirus infection was a leading theory for this illness. Those were the days when this illness was only called myalgic encephalomyelitis.
But once the psychoquacks came on the scene, the coxsackievirus cause of ME/CFS was clouded and lost in the fog of all the psychobabble than ensued.
I personally think that the coxsackievirus/enterovirus theory of ME/CFS is still the original and best. I am at a loss to understand why there is so little focus on enterovirus research. Only in the last 15 years has Dr John Chia taken up the enterovirus baton, and continued where Richardson left off. But Dr Chia is more-or-less the only researcher in the field interested in enteroviruses. This is ridiculous. There should be dozens of scientists looking at enterovirus etiologies of ME/CFS.
I know others are undertaking or attempting to undertake Rituximab studies elsewhere. But those have not even started yet. We are so, so far from having trialled Rituximab adequately. It seems premature to run a trial on Rituximab + Valganciclovir when the need for study of Rituximab alone is still so desperate.
Perhaps if the study was designed with three arms: control group, Rituximab, and Rituximab + Valganciclovir, it might be more revealing - and might help contribute toward sorting out the question of whether there are subtypes with active viral infection and subtypes without, and how best to identfy those subtypes. (Actually I don't know if the study is in fact designed that way - is it?) It seems to make more sense than studying the R+V combination and then not knowing at study's end how the combination compares to R alone.
Well, shut mah mouth, I should have clicked on the "for more information" link before I started pontificating. It is in fact a FOUR-armed study - control, R alone, V alone, and R+V in the fourth arm. It says "large-scale" but does not specify the exact size of the trial. For $7.65 million I'd expect it must be fairly large.
Yes, I think it will be larger than the Haukeland study and it's designed partly to test the hypothesis that it's not enough to wipe out the B-cells, it's necessary to reduce viral load, hence the Valcyte.
Thanks for this article, I found it very exciting. Wow what a great list of studies they want to do!!
Im very happy the methlyation gene study has been funded for as I personally believe that affects many of us and Ive found treating my MTHFR polymorphism to be quite beneficial. I I believe there must be more of those who carry this gene compared to the general healthy population as it can cause a lot of issues.
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