ME Association Summary Report of the 4th CMRC Research Conference 2017

[AndyPR]

This is a summary report of what I felt were the highlights and main points to emerge from this year’s CMRC conference that took place in Bristol on 13 and 14 September.

Overall, it was a busy, stimulating, and very enjoyable event. It has also been the most impressive open international biomedical research conference to take place this year and the only one where the public are provided with almost instant access to videos covering most of the presentations and to this summary. A much more detailed report is being prepared by the conference writing group and will be published in due course.

I would like to add my congratulations to the CMRC and the event organisers. Well Done CMRC!

We were fully booked with both UK and overseas researchers – a good proportion being students or established researchers who are new to ME/CFS research. This year the ME Association (with the help of a private donor) sponsored 5 students to attend the conference.

http://www.meassociation.org.uk/201...arch-conference-in-bristol-20-september-2017/

 

[AndyPR]

As has been pointed out on Facebook, this part seems to be ignoring both the OMF and IiME conferences.

It has also been the most impressive open international biomedical research conference to take place this year and the only one where the public are provided with almost instant access to videos covering most of the presentations.

 

[NelliePledge]

As has been pointed out on Facebook, this part seems to be ignoring both the OMF and IiME conferences.

Arguably this is accurate as there wasn't a separate day for the public part of the event. OMF and IiME had specific days for the public that were videod, After the two day scientist only events. OMF public event was live streamed as well. CMRC wasn't live streamed but the whole event was open to the public, not all parts were videod tho I think it is around 1/3 of of proceedings that are not available.

 

[AndyPR]

To actually get to the report follow these instructions;

Access the report

To allow greater choice and easier access, we have made the full report available to view online and as a download. You have two options:

1. Open/download it as a Word 2010 file which should allow you to watch the video presentations within the document, or view it in Word Online and watch the videos outside of the document (click the links)
2. Open/download it as a pdf. file version which may grant easier access, but will mean watching the videos outside of the document. You may also need to download Adobe Acrobat reader if you don’t already have it installed.

Whichever option you choose, we hope you will enjoy Dr Shepherd’s summary report. A full report of the 2-day conference will be made available in due course.

Although they mention an online version they don't seem to offer a way to get to it, so it seems to be download only at the moment.

 

[AndyPR]

Arguably this is accurate as there wasn't a separate day for the public part of the event. OMF and IiME had specific days for the public that were videod, After the two day scientist only events. OMF public event was live streamed as well. CMRC wasn't live streamed but the whole event was open to the public, not all parts were videod tho I think it is around 1/3 of of proceedings that are not available.

So what we are saying is that the CMRC event lacked the scientist only days then. Ignoring those days, the OMF livestreamed and got their video up, to me, surprisingly quickly, of ALL their presentations. IiME don't do things that way, but the DVD of ALL the presentations is still available very quickly, and I'd argue they have an overall higher standard of researchers presenting. Obviously everybody will have their own opinion, mine is that this particular claim for the CMRC conference is too much hype.

 

[charles shepherd]

So what we are saying is that the CMRC event lacked the scientist only days then. Ignoring those days, the OMF livestreamed and got their video up, to me, surprisingly quickly, of ALL their presentations. IiME don't do things that way, but the DVD of ALL the presentations is still available very quickly, and I'd argue they have an overall higher standard of researchers presenting. Obviously everybody will have their own opinion, mine is that this particular claim for the CMRC conference is too much hype.

The simple point I was making is that this is the only annual two day ME/CFS research conference (here in the UK and abroad) that is open to any researcher who wants to attend, and where almost all of the presentations are also made (almost instantly) available at no charge to the general public, and where there is an almost instant 4000 word summary - with a much more detailed conference report to follow. I think we will just have to agree to disagree here!

 

[NelliePledge]

Maybe having the public at the whole thing rather than on one day is impressive I don't know never been to one and I don't know how many are open in that way. I don't think the approach to recording/ not live streaming are actually impressive.

I thought Rowe and Montoya certainly stood up for UK patients and I was impressed by that. Not being in the room I don't know what impact that had on attendees, what level of frank discussions if any ensued. On the other hand does the presence of Crawley mean the discussions are constrained. We didn't get to see closing remarks from Holgate with whatever he as Mr CMRC was taking away from the event although if anything like opening remarks not missing much. I doubt he said to Montoya great presentation we've certainly been getting things wrong over here and we do need to apologise to patients.

 

[AndyPR]

The simple point I was making is that this is the only annual two day ME/CFS research conference (here in the UK and abroad) that is open to any researcher who wants to attend, and where almost all of the presentations are also made (almost instantly) available at no charge to the general public, and where there is an almost instant 4000 word summary - with a much more detailed conference report to follow. I think we will just have to agree to disagree here!

In response to your points that you are trying to make;

• The CMRC conference is two days. Fair enough, IiME and OMF are only one.
• All three were open to any researcher to attend.
• Video. OMF livestreamed and quickly up on YouTube at no charge. CMRC quickly up on YouTube at no charge. IiME made available on DVD at later date.
• Summaries/reports were available within a reasonable timescale for all three.

It's not that I don't appreciate your effort, I just don't think that telling us that the CMRC conference was the best this year is going to carry much weight with those who are aware of the alternatives. And allowing people like Crawley to sidestep public scrutiny of her continued quackery by not being recorded diminishes the worth of the conference, in my opinion.

 

[charles shepherd]

In response to your points that you are trying to make;

• The CMRC conference is two days. Fair enough, IiME and OMF are only one.
• All three were open to any researcher to attend.
• Video. OMF livestreamed and quickly up on YouTube at no charge. CMRC quickly up on YouTube at no charge. IiME made available on DVD at later date.
• Summaries/reports were available within a reasonable timescale for all three.

It's not that I don't appreciate your effort, I just don't think that telling us that the CMRC conference was the best this year is going to carry much weight with those who are aware of the alternatives. And allowing people like Crawley to sidestep public scrutiny of her continued quackery by not being recorded diminishes the worth of the conference, in my opinion.

Re the UK situation:

I always attend the Friday (one day) Invest in ME conference - which is open to anyone and is very well organised - and produce a detailed report for both the MEA website and the MEA magazine

But my understanding is that the meeting for researchers, which precedes this meeting, is by invite only and there aren't any detailed summaries or videos available for the public to read or view

Please correct me if I am wrong!

CS

 

[AndyPR]

Re the UK situation:

I always attend the Friday (one day) Invest in ME conference - which is open to anyone and is very well organised - and produce a detailed report for both the MEA website and the MEA magazine

But my understanding is that the meeting for researchers, which precedes this meeting, is by invite only and there aren't any detailed summaries or videos available for the public to read or view

Please correct me if I am wrong!

CS

Well, we seem to be comparing apples and oranges now. Unless you are now claiming that the CMRC conference, as well as allowing the public to attend and video to be taken of those researchers brave enough to be on film, also allows the researchers that attend to discuss unpublished works in a confidential and structured setting?

 

[charles shepherd]

Well, we seem to be comparing apples and oranges now. Unless you are now claiming that the CMRC conference, as well as allowing the public to attend and video to be taken of those researchers brave enough to be on film, also allows the researchers that attend to discuss unpublished works in a confidential and structured setting?

Not sure what your problem is here

Yes, of course, there was plenty of discussion re unpublished research fundings after the presentations, over lunch, over dinner, over breakfast, even in the lift on the way to the 6th floor on one occasion I can recall…….

CS

 

[AndyPR]

Not sure what your problem is here

Yes, of course, there was plenty of discussion re unpublished research fundings after the presentations, over lunch, over dinner, over breakfast, even in the lift on the way to the 6th floor on one occasion I can recall…….

CS

My problem? I have no problem other than the contradictions that I see in your posts. Why, do you have a problem with me replying to your posts?

 

[aimossy]

It would be really nice to see organisations when they promote themselves that they don't feel the need to disparage other organisations that also contribute and make important efforts. This did read like a hype sell in concert with a smarting kick in the shins to other organisations.

 

[charles shepherd]

My problem? I have no problem other than the contradictions that I see in your posts. Why, do you have a problem with me replying to your posts?

No problem with you replying to my posts - I am used to your critical contributions when it comes to the MEA!

I'm very happy to take part in social media discussions (but mainly on MEA Facebook) - unlike the vast majority of my medical colleagues!

CS

 

[charles shepherd]

It would be really nice to see when an organisation promotes themselves they don't feel the need to disparage other organisations that also contribute and make important efforts. This did read like a hype sell in concert with a smarting kick in the shins to other organisations.

I always attend the Friday (one day) Invest in ME conference - which is open to anyone and is very well organised - and produce a detailed report for both the MEA website and the MEA magazine

2017 Invest conference report - brief summary:

http://www.meassociation.org.uk/201...ce-report-dr-charles-shepherd-22-august-2017/

Full conference report available as a 16 page download via the above link

Conclusion

The meeting closed with a review of the day from Dr Ian Gibson.

This was an interesting, encouraging and informative conference that covered a number of important new approaches to the way in which the investigation of the underlying disease process in ME/CFS, as well as the development of diagnostic biomarkers, is moving forward.

Hopefully, these developments will also lead to much needed treatments that are aimed at causation rather than symptoms control – as is currently the case.

Thanks to everyone involved in both the organization of this event and the people who gave the presentations.

Dr Charles Shepherd

Hon Medical Adviser, ME Association.

 

[aimossy]

I dont know about how other people feel about this Charles but I personally am really fed up with orgs 'seemingly' competing and digging at each other.. this just seemed like another instance of this.

 

[AndyPR]

So I think we've narrowed it down to "it was the best conference this year, in the UK, that allowed the public in and most presentations to be recorded over two days". Wonderful. Can't disagree with that at all.

 

[aimossy]

And many thanks for the summaries!

 

[trishrhymes]

''the most impressive open international biomedical research conference to take place this year''

Thank you @charles shepherd for writing this interesting report.

I have one small quibble that seems to be causing some debate and deflecting attention from the content.

I read the above quoted phrase without careful attention to every word, and was confused that you called it the best (edit: most impressive) conference this year, after such brilliant IiME and OMF conferences from which all the talks were available streamed or on DVD. Being able to watch all those talks from my bed has been a highlight of my year.

Then I read your phrase again and noticed that little word 'open'.

The next question I ask myself is, have there been any other open biomedical conferences on ME this year to provide a basis of comparison? And, if so, what made this one the best (Edit: most impressive)?

This claim of 'best' status seems an unnecessary attempt to big up the CMRC conference ahead of the OMF and IiME, simply because it did not include closed sessions for scientists (which are hugely valuable).

I know this seems like nit picking, but it does feed into the narrative that the MEA supports the CMRC ahead of other organisations.

While the CMRC gives a platform to the likes of Esther Crawley, (and, to compound the insult, does not allow us to watch her talk and critique it), some of us will go on 'nit picking'.

On the plus side, I am looking forward to watching over the next few days the talks that we are allowed to see.

 

[charles shepherd]

I know that this particular discussion on what is basically a personal opinion is making plenty of people have a look at the CMRC conference report but perhaps it's time to move on and discuss some of the important presentations and biomedical research that was presented in Bristol last week?

Just to be absolutely clear - I attend the Invest conference every year, the IACFS conference in America when I can and I have been to closed research meetings in New York organised by the OMF

These are all excellent and well organised events and for open conferences I always produce a report - which includes giving thanks to the people who organise them (which is a very time consuming priocess from personal experience!)

CS