UK ME/CFS Research Collaborative (CMRC) Annual Science Conference 2016

[Yogi]

https://twitter.com/i/web/status/781062785467834369

Zaher's, I think.

I did not watch the CMRC at this point.

During the CMRC many people stated they could not see Dr Nahles talk.

Can somebody please explain what was the technical difficulty?


I then saw Dr Zaher Nahle posted these slides. Dr Nahle was and still is the only person that I trusted at this CMRC and his talk was stopped. I have deep concerns over many of the psychosocial members of CMRC.

Was Sonya Chowdhury right when she said there were technical problems or was the truth about PACE and psychiatric spin being censored?

Hi Friends,

Greetings from the UK...I participated in the CMRC meeting this week. Thank you all for mentioning and posting on that meeting. In all my talks, including the recent one in Newcastle, I include a section I call "the No spin Zone." I have uploaded those slides from Wednesday (uploaded as a pdf file). I thought I will share...

Organizers were very professional and there was indeed a variety of opinions (sometimes opposite) but all discussed in a professional and civilized atmosphere.

I write regularly about our position on key issues and the landscape in our Research 1st Editorial. This is the latest one (I think AndyPR posted it, thank you Andy!): http://solvecfs.org/september-zaher-letter/

Love from Newcastle!
Z

View attachment 17542

 

[TiredSam]

I did not watch the CMRC at this point.

During the CMRC many people stated they could not see Dr Nahles talk.

Can somebody please explain what was the technical difficulty?


I then saw Dr Zaher Nahle posted these slides. Dr Nahle was and still is the only person that I trusted at this CMRC and his talk was stopped. I have deep concerns over many of the psychosocial members of CMRC.

Was Sonya Chowdhury right when she said there were technical problems or was the truth about PACE and psychiatric spin being censored?

Classic use of a passive verb - "We have been asked" avoids mentioning who did the asking. We need to clarify this, who asked, and why?

 

[znahle]

Hi friends,

I wanted to clarify this once and for all and I regret I did not do it before so forgive me

As I mentioned earlier "the meeting
organizers were very professional and there was indeed a variety of opinions (sometimes opposite) but all discussed in a professional and civilized atmosphere."

Indeed, Sonya and the team were extremely professional with me and welcoming and open not only to me but to all ideas...truth be told. I feel bad that they were accused of trying to silence me or censor me...to the contrary they gave me the floor and invited me as a speaker all the way from the US and I am so grateful for them to enable me and empower me to present our work and our perspective. The talk was also very well received.

I am the one who asked for it not to be livestreamed in a spur of the moment five minutes before the session for a simple (even silly) reason: I was sick and coughing all the time (still am by the way!) so I thought that we can edit out the coughing and sneezing later on (again out of respect to the audience... as simple as that really). The mistake I made is that I did not realize that given the technical setup if it is not livestreamed then it is not videotaped also...so this is the story. I now feel bad and guilty that I may have caused some unfair comments to Sonya and the organizers. So apologies!

Once gain sorry for the confusion folks...from me you only get the truth and the facts...no censorship whatsoever.

Let's keep plugging along!
Love
Z

 

[AndyPR]

Thanks for the clarification Zaher, we appreciate you taking the time to do this. Sadly though, I do think it shows the level of distrust a large number of us have with certain charities over here, a problem they can only solve if they view it as a problem, if they don't think there is a problem then there is no need for them to take action.

 

[Yogi]

Hi friends,

I wanted to clarify this once and for all and I regret I did not do it before so forgive me

As I mentioned earlier "the meeting
organizers were very professional and there was indeed a variety of opinions (sometimes opposite) but all discussed in a professional and civilized atmosphere."

Indeed, Sonya and the team were extremely professional with me and welcoming and open not only to me but to all ideas...truth be told. I feel bad that they were accused of trying to silence me or censor me...to the contrary they gave me the floor and invited me as a speaker all the way from the US and I am so grateful for them to enable me and empower me to present our work and our perspective. The talk was also very well received.

I am the one who asked for it not to be livestreamed in a spur of the moment five minutes before the session for a simple (even silly) reason: I was sick and coughing all the time (still am by the way!) so I thought that we can edit out the coughing and sneezing later on (again out of respect to the audience... as simple as that really). The mistake I made is that I did not realize that given the technical setup if it is not livestreamed then it is not videotaped also...so this is the story. I now feel bad and guilty that I may have caused some unfair comments to Sonya and the organizers. So apologies!

Once gain sorry for the confusion folks...from me you only get the truth and the facts...no censorship whatsoever.

Let's keep plugging along!
Love
Z

Dear Dr Nahle

We really appreciate you taking the time to come on to PR. You did not need to do create a PR account but have done so and we are so grateful for this. Thank you for uploading the slides of your talk. I think you will find unanimous agreement here with the no spin zone slides.

I am sure I speak for many that we also really appreciated your clarification regarding the technical problems.

You may have picked up there is a serious lack of trust in CMRC/ MEGA mainly because of :

1. No confirmation of ME Criteria to be used such as CCC/ICC and concern over possible continued conflating with fatigue and tiredness (oxford criteria) by CMRC/MEGA as has happened in much UK research including PACE.

2. Involvement of Peter White the senior investigator in the PACE scandal and fellow psychosocial member Esther Crawley who has been involved in similarly criticised work. Both have been the past recipients of the majority of UK taxpayer's funds and the community have little trust in them.

Its so good that you are communicating from the US with the patient community and when you did not need to do so. It is so disheartening that those involved in the CMRC and are being paid by UK taxpayers will not communicate and have dialogue at least with members of the UK patient community on PR but are expecting patients to support a petition with little detail of the study and therefore much like cheerleaders rather than involved patients.

I hope you had a good trip back to the US and make a speedy recovery from your illness!

Thanks

Best wishes

 

[Ben H]

Fantastic to have @znahle on the forums-thankyou very much. This kind of interaction is invaluable.


B

 

[Glycon]

I am the one who asked for it not to be livestreamed in a spur of the moment five minutes before the session for a simple (even silly) reason: I was sick and coughing all the time (still am by the way!) so I thought that we can edit out the coughing and sneezing later on (again out of respect to the audience... as simple as that really). The mistake I made is that I did not realize that given the technical setup if it is not livestreamed then it is not videotaped also...so this is the story. I now feel bad and guilty that I may have caused some unfair comments to Sonya and the organizers. So apologies!

Cool! Would you be willing to post your notes for the talk, or slides, or whatever you used? Thanks!

(Also, what everyone else is wondering about: Your position regarding PACE research, PACE researchers, etc. I would just be happy to hear your personal take if you aren't comfortable speaking about it on behalf of SolveCFS...)

 

[AndyPR]

10 videos are now available on Youtube from this conference via the AfME Youtube channel, https://www.youtube.com/channel/UC42_Y8tjFhBbR1zpnmJsGBg

ETA: Thought I might as well embed them in this post.

Welcome by Professor Stephen Holgate

Researching a Syndrome: Findings from the UBC Complex Chronic Disease Study Group by Dr David Patrick (University of British Columbia).

States, traits and diagnosed conditions: implications for the design of population-based studies of human health and disease by Professor George Davey Smith

Professor Paul Little, Professor Tom Walley and M.E. patient Opal Webster-Philip discuss the challenges of gaining funding for M.E/CFS research

MRC-funded research project updates.

ETA2: PR only seems to like five embedded videos so continues below.

 

[AndyPR]

Videos cont.

Mapping global research funding over the last 10 years - a collaborative sponsored report by Sonya Chowdhury (Action for M.E.)

Voxel-based morphometry shows reductions in brainstem white matter in ME/CFS, by Andreas Finkelmeyer (Newcastle University) & Immune-pain interaction following exercise in Chronic Fatigue Syndrome, by Andrea Polli (Virge University)

Paediatric CFS/ME, by Dr Esther Crawley (Bristol University)

The role of autonomic function in exercise-induced endogenous analgesia: a case-control study in ME./CFS and healthy people, by Jessica Van Oosterwijck (University of Antwerp).

Fatigue in Primary Sjogren's Syndrome is associated with lower levels of pro-inflammatory cytokines, by Nadia Howard-Tripp (Newcastle University) & Anne Faulkner Memorial Lecture, by Professor David Jones (Newcastle University)

 

[Countrygirl]

I have a bone to pick about one of EC's statements about recovery in children. (Only one as I have only listened to a few minutes of her lecture so far.)

She states that without access to treatment children are not likely to recover.

Waaay back in the 1990s, we understood that children DID have a very good chance of spontaneous recovery/long-term remission if left alone. Relying on memory (always dodgy with an ME brain), I think the percentage was about 80%. Dr Charles Shepherd in his book on ME stated (again according to memory) that on average, children recovered in a period of 4.6 years.....even without Dr Crawley's assistance. I do hope she not claiming natural recovery to be due to her intervention .

I remember discussions about this at the time and it was suggested that growth hormone was a significant factor.

 

[Cinders66]

Videos cont.

Mapping global research funding over the last 10 years - a collaborative sponsored report by Sonya Chowdhury (Action for M.E.)

Voxel-based morphometry shows reductions in brainstem white matter in ME/CFS, by Andreas Finkelmeyer (Newcastle University) & Immune-pain interaction following exercise in Chronic Fatigue Syndrome, by Andrea Polli (Virge University)

Paediatric CFS/ME, by Dr Esther Crawley (Bristol University)

The role of autonomic function in exercise-induced endogenous analgesia: a case-control study in ME./CFS and healthy people, by Jessica Van Oosterwijck (University of Antwerp).

Fatigue in Primary Sjogren's Syndrome is associated with lower levels of pro-inflammatory cytokines, by Nadia Howard-Tripp (Newcastle University) & Anne Faulkner Memorial Lecture, by Professor David Jones (Newcastle University)

Good to see these on here. Just wish to highlight many of the videos feature 2 presentations e.g. The Sonya chowdhury one listed takes up only 10minuted, the rest of the video is uk funders. Likewise the Esther Crawley talk precedes one on severe ME.

 

[Snowdrop]

One problem with ascertaining recovery from ME in children as discussed by E Crawley (other problems aside) is that it really requires a longitudinal study following these children into adulthood to find out if they relapse and even then it must be ascertained as to why (probably not one reason but I would wonder if there were reasons apart from high stress for eg) ME does seem to be possibly relapsing and remitting in some of the ME population (and over large time frames). So is it fair to characterise a remission as recovery?

A remission is a good thing and it allows the child to carry on with life in a way that they would not be able otherwise. The question becomes how much did treatment influence the remission and what considerations need to be taken in light of possible relapses.

I have yet to comprehend the UK established 'ME expert's' fascination with all this money spent on management without a peep about lobbying for real change for PwME in terms of finding treatments that truly improve the lives of patients. Oh wait, that's because they believe they can 'tweak' these management techniques to be the real treatment--nothing else need be done. I wasn't clear whether what was being discussed was management or treatment.