Invest in ME Biomedical Research Colloquium 2017 #BRMEC7

BurnA

BurnA

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deleder2k said:
Day two: "B-vitamins in ME/CFS Dr. Ingrid G. Rekeland, Bergen, Norway"

Why on earth will a researcher from Haukeland speak about B-vitamins in ME/CFS? Is it really B-cells, or is it B-vitamins? I haven't heard they've said anything about B-vitamins before.
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It's listed in the agenda under clinical trials, - is there a trial on B vitamins ?

In the same section is an Immunadsorbtion trial talk given by Carmen Scheibenbogen, i dont see her name in the list for the conference, pity because it would be interesting to know more about this.
 
deleder2k

deleder2k

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BurnA said:
It's listed in the agenda under clinical trials, - is there a trial on B vitamins ?

In the same section is an Immunadsorbtion trial talk given by Carmen Scheibenbogen, i dont see her name in the list for the conference, pity because it would be interesting to know more about this.
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It is either a typo or it could be a major thing. I'll start digging.
Satellite
 
deleder2k

deleder2k

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To my knowledge there has been no study on B-vits, but some patients has tried it and has been reporting back to Haukeland. What I hear from one patient is that he takes 200 mg b1, 200 mg b2, and 2x500 mg pyruvate daily. Apparently symptoms improved.

This is all I know. Usually I have more to say when I talk to people around Haukeland. I don't know what to make of it. Does pyruvate have anything to do with b-vits?

I wasn't sure whether to share this or not, but since the dr. is speaking about b-vits at the conference I guess it can't harm. I must emphasise that the daily treatment plan was received from a patient. It was not a recommendation to him from Haukeland. I have no clue if it is the "right" dose, if it is safe, or if it is worth tryin' at all. I can just say that it is all very cheap when I looked at iHerb.
 
Jo Best

Jo Best

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Update on the Pre-Conference evening dinner by Invest in ME Research in their Facebook group:

Our pre-conference dinner is a way of us meeting up and networking before the conference with our colleagues and researchers.

A lot of our friends from Europe and overseas will be attending.

The European ME Alliance will be present.

We are very pleased that a great supporter of Invest In ME Research Jon Campling Actor will be there.

We also have Mike Harley present (Mike has a busy week as his Luxembourg marathon is this weekend) and he will be at #IIMEC12 on Friday - http://investinme.org/ce-IIME-Newslet-1504-02.shtml

Our guest speaker is David Tuller who will be presenting an interesting commentary, on such things as the #PACETrial

David's presentation will be available on the Conference DVD - which can still be ordered in May at the earlybird discounted price.

Last year's pre-conference dinner speaker - Kjersti Krisner will be there also, this year an honorary IiMER-helper also.

There are many others also attending and the evening already has a list of over 100 attendees - making it the largest we have ever had.

News items relating to the conference are here - http://investinme.eu/IIMEC12-news.shtml

Chairman Kathleen McCall has led the charity a long way since that small beginning in 2006 for our first conference.
Here is the chairman's welcome speech - http://investinme.eu/IIMEC12-chairman-message.shtml

For those coming to London - the charity looks forward to welcoming you - and the weather looks to be pleasant - https://weather.com/en-GB/weather/tenday/l/UKXX0085:1:UK



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Daisymay

Daisymay

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Jo could you please provide a link for the early bird buying of conference videos, I'm not managing to find it, thanks.
 
Jo Best

Jo Best

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Posted by Invest in ME Research (IiMER) in their Facebook group:

Day 2 of the Colloquium in London.

The IiMER strategy is to find, fund and facilitate high quality biomedical research through international collaboration.

And so we proceed to another day of collaboration, of seeking opportunities to advance international biomedical research into ME, of Working Together.

After a full day of impressive presentations from NIH, CDC, major centres in USA and Australia, and with the world'a best working together to understand this disease, then it just reaffirms the charity view that our strategy has been correct.

This will work. We will overcome all of the failed policies of the past with good research in an international, collaborative context.
And IiMER are facilitating that.
small charity - but oh such a BIG Cause.

Our researchers' dinner last night was pleasant and created the right atmosphere for another opportunity to build relationships and seek new possibilities.

From small acorns do BIG trees grow - and we know already of new, and previously unlikely collaborations forming from this event. We are bringing in new expertise from different fields to assist - something we started many years ago.

We shall see these opportunities develop over the coming months.
IiMER are, ourselves, active in forging new possibilities and we hope to fund these as we build up the UK Centre of Excellence and work with Europe's best.

We know that this is influencing others. We invited for the second year running the NIH. It was interesting to hear that our creating this connection was used by the MRC the day before the Colloquium to invite the NIH to discuss with them the NIH plans. The MRC have been invited to our events, they declined, and predictably the MRC contacts did not have the courtesy to either inform IiMER or invite us along to explain what we were trying to do.
Though we would expect no less from people who have failed in their policy toward ME and continue to do so.

Day 2 starts with sessions on Microbiome and the with Clinical Trials.

We have built a family of researchers coming together, staying together, and working together. And family was a term used by many yesterday to describe the atmosphere.

We end today with our pre-conference dinner with David Tuller explaining the finer points of the results of a flawed strategy toward ME.

IiMER and our supporters may seem small - but we are together doing more to change things in this part of the world than many others - and will continue to do so.

Thanks to our supporters for the great support.
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