OMF ME/CFS Working Group Meeting - September 26 - 28, 2018

Back in Spring or early Summer, I read something from OMF and/or Ron Davis suggesting that the research coming up was so promising, they expected to be announcing results around the end of summer that would be significant for treatment. I'm kicking myself for not making some note to myself, in an obvious impossible-to-forget place, of where I read that. But I know for certain I saw something along those lines, and so, although I know that I shouldn't hold my breath and I know it doesn't mean some amazing new treatment will be available immediately, this did help me keep myself and my daughter going through summer. But her hope is flagging badly, and I don't know exactly what research was referred to back then, that we should be hearing results from around now, so I can't report back to her on it.
Anyone have any idea?

 

I don’t know @Creek but in my experience you should always mentally add at least six months to any due date outlined for scientific publication

 

@Creek
Sorry your daughter is so sick. I think there is good reason for hope, but I just don't think it's possible to predict when things will happen. Simon just wrote this:

https://www.s4me.info/threads/a-bri...of-me-cfs-research-discuss-simon-m-blog.5921/

 

I'm pretty sure it was about metabolic trap hypothesis.

 

Thanks everyone! How wonderful to get such good answers to such a vague question.

 

https://twitter.com/user/status/1045459336841981952

 

We always were. I think that got missed in the early discussion.

 

We still lack proof of any causes, and despite this multiple candidate drug therapies are in various stages of testing, including at OMF. We are however accumulating so very much data it now needs IT support to do much with it. With that much data we can formalise many hypotheses, and with rapid testing approaches being developed by OMF and others the usual many years to results will be much shorter.

The problem has always been the same. Too little data, many hypotheses, too many resources needed to investigate them all right now. The too little data problem is dwindling. We have more focused hypotheses. We have never had this many resources, the most important of which are the large number of very good researchers, as exemplified by this symposium.

The thing I try to keep in mind is that we possibly lack much of the data we need to figure it all out. That is changing. We also cannot know which hypotheses are right until they are tested. When we have answers we will look back and possibly say it was so darn obvious. However its only obvious after we have the test data, before that its only a possibility.

 

That's all very well, and I'm really glad that they are able to have fun, but when will anything, by anybody, actually be published?

And on the subject of data sharing, didn't I hear that there has been delays in being able to share the data from the Seriously Ill study?

 

Hasn’t a paper been submitted, I think on red blood cells? Struggling to remember where that was said. I think- in the bio of one of the new scientists working on ME.

ETA: it mat have been in the bio of Dr Mohsen Nemat- Gorgani, but this is from an unreliable memory. If a paper has been submitted, I would have expected it to be shared widely at this symposium.

 

Yes, this info was from August:

https://www.omf.ngo/2018/08/15/mohsen-nemat-gorgani/

 

That's a great start but there's the Seriously Ill study, the nano needle, the plasma swap etc

 

@JaimeS, I don't know if you'll be able to ask questions from the floor (or maybe prompt people before they speak!) but we're all keen to know what publications are in press...

 

@JaimeS

If possible, please ask Professor Hanson as to whether she will be testing at a larger cohort her findings of Liver function disruption and metabolites suggesting Hepatotoxicity.


EDIT : No need to @JaimeS, Thanks! There is an option for submitting questions here :

https://www.omf.ngo/questions/

Also, are they planning to perform Fibroscans to ME/CFS Patients? There is no answer to my question posted since 2017 unfortunately :


https://forums.phoenixrising.me/ind...-17-research-update.49749/page-17#post-857103

Apart from the Fibroscans i sent to Dr Davis and Dr Hanson, here is one e-mail from a Swiss Practitioner who performed a Fibroscan to one of his patients (32-years old, female) :

 

hopefully there will be a flood of them by the time NICE start to make their deliberations for the new guidelines

 

What I also hope is that NICE appreciate the ground is shifting rapidly under their feet in favour of physiological scientific evidence, during the very time their review is underway. So, for NICE's own sake as much as anything else, need to really look with great diligence at the scientific evidence that is emerging ... and to please do more than just read the bl**dy abstracts! Hopefully they have got the message that this review, of all reviews, has to be way way more than a box ticking exercise.

 

That's correct. Was submitted, don't know if it was published, yet.