2017 CMRC Conference

[NelliePledge]

A Mum.........a wonderwoman........and blue hair the colour of ME Awareness

Go for it MEmum

 

[slysaint]

 

[NelliePledge]

News from AFME both days of CMRC now open to PWME not sure if this means any changes to who is presenting on day2..........

https://www.actionforme.org.uk/news/attend-both-days-of-cmrc-conference-register-now/

PS if anyone could make this but needs some help with costs pm me and I would make a contribution

 

[charles shepherd]

MEA has 6 grants (to cover registration fee, travel and accommodation) to help students (undergraduate or post-graduate) attend this fourth CMRC conference in September

We already have 3 good applicants - all from students doing serious biomedical research

So applications for 3 remaining places still welcome

More info here:

http://www.meassociation.org.uk/201...es-for-cmrc-research-conference-22-june-2017/

CS

 

[Valentijn]

pain and CFS/ME by Prof Maria Fitzgerald, University College London

I'm not very impressed with this one. She goes heavily into pain central sensitization-type research - admittedly into the biological aspect, rather than the vague hand-waving we get from most quacks. But it's still based mostly on extrapolation - eg, rats still being sensitive a few weeks after being injured as babies.

I don't see anything persuasive about her theories, and certainly no relevance to ME/CFS, where there's a great deal of obvious peripheral involvement. She's also one of the MEGA researchers, which means some quacks wanted her on the team for a reason. Her research would be useful in propping up psychosomatic explanations of symptoms, though it doesn't seem to go in the direction of curing anyone with CBT or GET (though such theories inherently suggest there is nothing biomedical that needs curing).

 

[Valentijn]

Prof Alan Silman

BPS quack alert. He specializes in declaring Fibromyalgia to connected to mental health problems and not a distinct disease. He firmly concludes that emotional distress causes pain, and not vice-versa:

A challenge in clinical practice is the patient who presents with widespread musculoskeletal pain that is unlikely to be explained by an organic pathology. Such patients are often labeled as having “fibromyalgia,” a syndrome whose cardinal symptom, in the presence of a high tender point count, is chronic widespread musculoskeletal pain (1, 2). It has been argued that for epidemiologic purposes the key features of fibromyalgia should be treated as continuous, independently distributed variables for which risk factors should be separately identified (3).

Clinic-based studies have shown increased rates of depressive (4, 5), anxiety (6), and somatoform (7) disorders in these patients. These findings may reflect the elevated rates of psychiatric disorder associated with the consultation behavior of patients with chronic pain (8). Indeed, it has been shown that persons with chronic widespread pain who had consulted a medical practitioner displayed higher levels of psychological distress (9). However, psychological factors are also apparent in population samples of individuals with chronic widespread pain, and associations with other somatic symptoms, with psychological distress, and, in particular, with measures of depression and anxiety have been reported (10, 11); a further study documented associations of chronic widespread pain with a measure of hypochondriasis and with increased focusing on bodily symptoms (12). Overall, the findings in these population-based studies suggested that chronic widespread pain can be a manifestation of the process of somatization.

The process of somatization has been described as the expression of personal and social distress through physical symptoms, often accompanied by patterns of illness behavior such as increased medical help–seeking for those symptoms (13). As such, it is viewed as a process of illness behavior rather than a distinct psychiatric diagnostic criterion such as somatization disorder. Somatization disorder may only represent the “tip of the iceberg” of persons who somatize (14). The alternative and equally plausible hypothesis is that these features of the process of somatization are a consequence of chronic widespread pain. Distinguishing cause and effect has been the subject of much controversy (15). Understanding the exact nature of the relationship would have implications for both prevention and treatment.

Conclusion
Subjects who are free of chronic widespread pain are at increased future risk of its development if they display other aspects of the process of somatization. Data from this population-based prospective study lend powerful support to the hypothesis that chronic widespread pain can be one manifestation of the somatization of distress.

These sort of people are an excellent example of how the MEA does itself a disservice in associating with the CMRC.

 

[Valentijn]

This looks like a quack brag-fest about how the MRC keeps funding them, despite producing methodologically unsound research and even engaging in ME-denialism.

 

[Hutan]

Prof Alan Silman

What an arrogant fruit loop.

The process of somatization has been described as the expression of personal and social distress through physical symptoms

'I'd certainly be tempted to express my distress physically if I had this man as my doctor.

Sorry, I'm tired, and sick of idiots like this who can't be bothered to think and just go for the easy option of labelling their patients as morally inferior.

 

[NelliePledge]

View attachment 22552

This looks like a quack brag-fest about how the MRC keeps funding them, despite producing methodologically unsound research and even engaging in ME-denialism.

Totally. As it is now open to PWME would be great if some could attend. If it was nearer to home I would give it a go. But Bristol is beyond my travel limits but as I mentioned above I would be happy to make a serious contribution to travel/hotel costs for anyone who is within reach and needs some financial support.

 

[NelliePledge]

Such heroes trying to save us from these labels of "fibromyalgia" and "ME"

 

[slysaint]

Totally. As it is now open to PWME would be great if some could attend. If it was nearer to home I would give it a go. But Bristol is beyond my travel limits but as I mentioned above I would be happy to make a serious contribution to travel/hotel costs for anyone who is within reach and needs some financial support.

Maybe someone could get in touch with the Bristol ME Support group?
their FB page:
https://www.facebook.com/bmesg/?hc_...B9qJD9V_9MZ4m-1hR78sPnOsQWHi1ylt_Kjzg&fref=nf

@Jenny TipsforME
and also Lorna Stephenson at the Bristol Cable (this was her article) :https://thebristolcable.org/2017/07...bristol-university-and-controversial-science/

 

[Jenny TipsforME]

Well I resigned affiliate CMRC membership in a (polite) huff so no I can't go!

 

[Jenny TipsforME]

I'm in the Bristol groups though, remind me in a few days after the NICE challenge is over (probably won't remember on my own).

 

[slysaint]

Well I resigned affiliate CMRC membership in a (polite) huff so no I can't go!

I wasn't meaning for you to go, but you said on a previous post that Lorna Stephenson had been in touch with you.

 

[Mark]

If anybody would be willing and able to attend the CMRC conference and tweet and/or write an article on the conference for Phoenix Rising, we could potentially pay expenses. If anyone's interested, please contact me via conversation.

 

[MEMum]

I'm in the Bristol groups though, remind me in a few days after the NICE challenge is over (probably won't remember on my own).

Hi @Jenny TipsforME . Do you know anyone who can go on Day 2?

@Mark says
If anybody would be willing and able to attend the CMRC conference and tweet and/or write an article on the conference for Phoenix Rising, we could potentially pay expenses. If anyone's interested, please contact me via conversation.

 

[MEMum]

The revised agenda, which I cannot currently locate online,for Thurs includes:

• MEGA starring EC @12:05, followed by
• Patient and Public Involvement with MEGA, speaker tbc

I expect this change follows the suggestions by EC at the June CMRC meeting
"Conference 2017 SC proposed a change to the programme as a result of discussion at the funders’ meeting to have more dedicated time to explore and develop collaborations. The Board approved the proposal and work will now be undertaken to redesign the session."
See https://www.actionforme.org.uk/uploads/images/2017/06/DRAFT_minutes_CMRC_06.06.17.pdf

The 2 oral presentations @ 12:50 and 15.55 and the Poster presentations timetabled for 16:40, all on the Wed, have no further details on their subject as yet.

 

[MEMum]

I am planning to attend on the Wednesday, but for several reasons would find it difficult to make the Thurs.

Can anyone else go? I strongly suspect that the MEGA talks will be unlikely to be livestreamed due to their content.

 

[Jenny TipsforME]

Hi @Jenny TipsforME . Do you know anyone who can go on Day 2?

@Mark says
If anybody would be willing and able to attend the CMRC conference and tweet and/or write an article on the conference for Phoenix Rising, we could potentially pay expenses. If anyone's interested, please contact me via conversation.

I've asked on the Bristol ME Discussion Group. There's at least 3 Bristol groups (is that normal?!) so I could ask the others as well.

I did also mention to Lorna of the Bristol Cable but they've already had 2 ME articles in a few months so I think unlikely they'd do another so soon.

 

[NelliePledge]

CMRC conference update: filming presentations
August 16, 2017

Experts in neurovirology and orthostatic intolerance take the lead at the fourth annual UK CFS/ME Research Collaborative (CMRC) conference next month, which will be filmed by Action for M.E.


Following feedback from previous conferences, presentations will be video recorded (subject to permission from individual speakers), and uploaded to Action for M.E.’s YouTube channel, rather than livestreamed.

The decision was taken after viewers said they struggled to read what was on presentation slides due to image distortion, and inevitable loss of image quality, caused by broadcasting live over the internet.

This year, Action for M.E. will record presentations using our HD video camera, and upload them to YouTube at the end of each day. Our aim is that, depending on upload speed, films will be available within 48 hours.

We will also post live updates about the event on social media, particularly the @actionforme Twitter account, using the hashtag #CMRC2017.
https://www.actionforme.org.uk/news/cmrc-conference-update-filming-presentations/