13th Invest in ME Research International ME Conference - 1st June 2018

It seems that I am damned if I do and damned if I don't. I tried very hard to help IiME with research strategy. Unfortunately I think they have made a number of unwise decisions of late.

I am very sorry to have to say that but I have deliberately made no comment about this for a very long time and I think now it needs to be said. I have absolutely no personal interest in any of this, as you know. I am trying to help people move forward with ME research. I say what I think makes sense and hope people take note.

 

@Jonathan Edwards it's because people take note of what you say that I feel it important to be fair in distinguishing facts from opinions or assumptions. IiMER and other advocates for that matter, are also damned if they do and if they don't. If they speak out or let off steam occasionally they get backlash and all kinds of speculation and accusations, but if they don't speak out (which is most of the time) then the misinformation and exploitation escalates, and this is what has happened in this instance to a certain extent (editing to clarify I mean the events leading up to IiMER's comments).

As I said, I've been following events since 2010, so I know far less of the history than many, but I do know what I have witnessed, most of which is actually played out in the public domain.

I too, have kept quiet (I could have said a lot more over these past few years) for the sake of trying to keep the peace. I've known of your involvement in ME research since you agreed to advise IiMER on a UK rituximab trial and have very much appreciated your contributions, including your work on the PACE trial and supporting IiMER with the CMO meeting and so on. I know you have no personal interest but you know that IiMER does have personal interest and that's why they've been doing what they do every spare moment since 2005.

You may disagree with some of their decisions, you may also not fully appreciate their reasons, and who can claim to be always right, but there is no denying that IiMER have been a driving force for change in the right direction in UK and internationally, as the late Anne Örtegren knew.

 

@Awol,
I very much agree that IiME have made a huge contribution to the field. But I based what I had said on facts, not opinions or assumptions. I think the Facebook messages were badly misjudged in style and content. Maybe we should leave it at that.

 

Maybe it's time that we don't leave it at that @Jonathan Edwards given that you chose to comment on this thread? Your claim that your comments are are based on facts are just that - claims. My observation is that you've been played from the moment I told a CMRC member organisation - in good faith, as they asked to keep them informed - that you were advising IiMER on a UK rituximab trial.

 

Morning,

Sorry to butt-in to the conversation, but can anyone who attended the conference tell me if they saw a presentation from a physician in Norway who talked about 'myoclonal jerks' in M.E.?

I am trying to write-up Dr Shepherd's summary of the conference, but he didn't catch the doctor's name or institution and I can't find him on the IiMER agenda. This doctor spoke just after the 'Gut Microbiota' presentations I believe.

I'd be very grateful for any help.

Many thanks!

 

I think it was Kristian Sommerfelt

 

It may have been Peter Holger Johnsen (FMT) or Karl Johan Tronstad, both on the agenda here: http://investinme.eu/IIMEC13-13-13-Agenda.shtml

It was Kristian Sommerfelt...

 

In that case he is a professor and child neurologist and works at the children's ward at Haukeland University Hospital in Bergen, Norway and at the University in Bergen, just to give you some additional info.

Edited to add: It would make sense if this is the guy. He often mentions myoclonic jerks in his talks.

 

http://www.investinme.eu/IIMEC13-news-180502.shtml

 

I really appreciate the help. Thank you

 

What does he say about them?

 

Kristian Sommerfelt sent IiMER a picture drawn by nine year old Emma and that's a timely example of the people running IiMER charity and why they have worked so hard and so consistently every single day over the past thirteen years or so to bring people together to change the barren landscape of research and treatment of ME as parents and carers of children with ME, and Chairman Kathleen McCall is a long term sufferer of ME.

"Emma is nine years old - and has had ME for over three years.

The image perhaps says more than a long scientific article about the consequences of this disease.

This is why we do what we do." - http://investinme.eu/IIMEC13-news-180209.shtml

 

Article by another parent involved in the IiMER conference events -

https://twitter.com/user/status/1006594513182314497

 

That it is a sign that the brain is involved in the disease (he says it more eloquently..)

 

Do you know if he's published anything on this (or is on video talking about it anywhere), please?

 

This is the only video of him I know about with English subtitles. But I don't remember if he mentions myoclonic jerks in this one
I can do a search later regarding publications, but brain too foggy now..

https://www.youtube.com/watch?v=UJbU4KRmQOw

 

Hi, @Awol I'm wondering if you can explain what this sentence means? How has he been "played" (and by whom?) and what relationship does it have to your discussion with someone at CMRC? Thanks!

 

It's interesting to add Kristian Sommerfelt's study of twitches/myclonal jerks to David S. Bell's writings on ME/CFS in children.

Sommerfelt:

• Twitches in shoulders or hands

Bell:

• Abdominal pain (more common than adults)
• Facial flushing
• "Persistence of reduced activity" or "activity limitations" (more important than post-exertional malaise or orthostatic intolerance)

If you combine Sommerfelt "twitches" + Bell symptoms + abnormal visual attention, then this becomes a good description of the adolescent-onset ME/CFS I am personally familiar with.

 

"The last 50,000 crowns go to Professor and Pediatrician Kristian Sommerfelt, who will investigate how children and adolescents who are diagnosed with ME are diagnosed." https://www.bt.no/direkte/politikk-og-samfunn/pinned/120966

https://twitter.com/user/status/1006897666524045314

 

I haven't seen this but think one of the posts is alluding to the stuff probably going on behind the scenes at the moment with MRC on funding and invest in ME theorising how things might be played out.