• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

CMRC 2017 conference update: Look who’s flying-in next month!

Cinders66

Cinders66

Senior Member
Messages
494
Valentijn said:
Looks like the expected mix of psychobabble, real science, off-topic presentations, and AfME being incapable of telling the difference.
Click to expand...

I do t think arthritis and eds would have CFS sections at their conferences ? We just don't have enough ME research happening in uk to fill up a conference and the field shouldn't still be in this type of vague infancy. What's happening in other countries might be Driving some sort of progress, what's happening in uk isn't.
 
N

NelliePledge

Senior Member
Messages
807
Joh said:
I wonder if the challenges include anti-science patient groups? Don't know him, apologies if he's one of the good guys. Still might be more worthwhile to talk about actual research instead of why it's not happening.
https://twitter.com/i/web/status/908007321854529538
Click to expand...
well we will get the video in the next few days - Friday or Monday maybe - so you will be able to check it out :)
 
Esther12

Esther12

Senior Member
Messages
13,774
It looks like there were people speaking there who were not on the schedule. Or maybe they were just making comments from the audience?
 
H

Hajnalka

Senior Member
Messages
910
Location
Germany
https://twitter.com/i/web/status/908241355733954560
Honestly? I'm in bed, waiting for research and they discuss generally how research is done ("Have the ability to address the question appropriately". "Be able to measure the right thing"). And come up with these self-evident points as news. Isn't that what universities are for? I was originally a teacher and the following is not cynicism, I am honestly convinced that these points could be brainstormed by school kids.
 
V

Valentijn

Senior Member
Messages
15,786
Joh said:
And come up with these self-evident points as news. Isn't that what universities are for?
Click to expand...
To be fair, there are likely some idiot BPSers in the audience who haven't discovered the importance of objective outcomes, recruiting patients with the mandatory disease symptoms, or that the patients matter more than putting another entry on their CV/résumé.
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Joh said:
https://twitter.com/i/web/status/908241355733954560
Honestly? I'm in bed, waiting for research and they discuss generally how research is done ("Have the ability to address the question appropriately". "Be able to measure the right thing"). And come up with these self-evident points as news. Isn't that what universities are for? I was originally a teacher and the following is not cynicism, I am honestly convinced that these points could be brainstormed by school kids.
Click to expand...
If the CMRC don't realise how embarrassing it is for her (Julia Newton?) to feel the need to point these things out to those attending then we have no hope of any progress from them. Did anybody feel the need for such basic education at the IiME conference this year? I highly doubt it.
 
H

Hajnalka

Senior Member
Messages
910
Location
Germany
AndyPR said:
Did anybody feel the need for such basic education at the IiME conference this year? I highly doubt it.
Click to expand...
That's exactly the same question I asked myself when seeing these tweets - Could I imagine slides like this at the Invest in ME conference? No. I ordered the DVD and the two days were so packed with exiting research. No time to discuss what skills researchers need to do their job.
 
Cinders66

Cinders66

Senior Member
Messages
494
Could we have a research discussion about the harm of the name CFS, weak criteria still used, the CBT/GET narrative and irresponsible putting of it in the media, the fact GP and NICE advisors /organisations are still putting CFS under mental heajth, the damage to those with complex ME having their illness reduced to fatigue even by people who attend the conference and run clinics, the lack of ME education vs CFS and both getting lost in MUS & FND and the fact that the state funders refuse to ring fence and have funded behavioural vs biomedical research to a ratio of approx 3:1 ?

Nah, I thought not
 
Esther12

Esther12

Senior Member
Messages
13,774
Joh said:
https://twitter.com/i/web/status/908251454086971392
Another meta-talk about the theory of research (ironically called "practical session").
Let me guess what harms research? Anti-science activists, militant patients?
Isn't it sad that hearing "collaboration" from these circles makes me afraid? Sounds like MEGA and "multi-discipline approach" (aka CBT etc.).
Click to expand...

Why would Sonya think she has anything to contribute on "What helps collaboration? And what harms it?" ?!

She's clearly terrible at this. What 'collaboration' in research has she been involved in that has done anything good for patients? "The key thing for collaboration is to do whatever Esther Crawley tells you."

It's mind-blowing that she thinks she is suited to giving that talk.
 
Last edited:
Esther12

Esther12

Senior Member
Messages
13,774
Edit: Actually, looks like discussion of the talk is happening in the thread on the videos: http://forums.phoenixrising.me/inde...-the-cmrc-conference.54327/page-2#post-903115

The Holgate talk was so cringe-worthy. Years ago, I hoped he was trying to play the system for the benefit of patients. Now I think that he is the system, he respects the systems values, and he's a disaster for us.

It seems pretty clear that all the CMRC has done is helped strengthen the position of Crawley and helped others in the UK medical establishment pretend that there's some worthwhile body in place for helping 'bring together' patients and researchers in this contentious area. How can anyone, other that Crawley/White/Wessely/etc think that this is a good idea?

The only remotely cheering thing from his talk was the news that MEGA didn't get funded.

The link with Arthritis Research UK's 'pain' initiative looks terrible too.

This is what exciting research they're funding:

Our national pain centre
Since 2010 we’ve been funding a national pain centre with the University of Nottingham in a bid to tackle long-term pain, involving clinicians and scientists from different research fields. These experts are working together to research better treatments for arthritis.

The aims over the next five years are:

  • looking at pain from a social context; finding out what patients’ understanding of pain is and what they expect from treatment
  • investigating closely two forms of pain mechanisms: the role of peripheral pain (pain that comes from the nerves in the joints) and central pain (the way that the brain responds to and processes chronic pain) and trying to produce new compounds that target these pain pathways
  • running clinical trials aimed at testing existing drugs and any new painkillers that may be produced over the next five years.
Our research section gives more information about what we’re funding.

Research into the placebo effect
We’re funding some interesting research into the power of the placebo effect (where patients feel an improvement in their symptoms due to the power of suggestion rather than due to the effects of an actual drug). Our research team are giving placebos to volunteers with osteoarthritis and fibromyalgia to find out if they release natural painkillers in the body, known as endogenous pain control mechanisms.

The researchers are using laser stimuli to induce experimental placebo responses in the three volunteer groups. It’s believed that people with chronic widespread pain have abnormalities of how they anticipate and focus on pain and the researchers suggest that this results in them feeling greater pain than other people.

Novel research using mirrors
Our research has shown that mirrors can trick the brain into recovering from severe, long-term pain.
Researchers have found that people with severe pain in a limb (such as complex regional pain syndrome) found relief by looking at a reflection of their healthy limb in a mirror. The reflection of the non-painful limb gives the person the impression of now having two healthy, pain-free, functioning limbs. The treatment is based on a new theory about how people experience pain even when doctors can find no obvious direct cause.

The theory suggests that the brain’s image of the body can become faulty, resulting in a mismatch between the brain’s movement control systems and its sensory systems, causing a person to experience pain when they move a particular limb. Imaging studies have demonstrated that chronic pain reduces activity within the brain’s sensory and motor systems that relate to the painful area. Mirror visual feedback therapy has been shown to reactivate these areas, thereby improving function and reducing pain.

Telephone-delivered CBT
Our research has shown that cognitive behavioural therapy (CBT) provided over the phone can have a positive impact on people suffering from chronic widespread pain compared to usual care provided by their GP.

Patients who received a short course of CBT over the telephone from trained therapists reported that they felt ‘better’ or ‘very much better’ at the end of a six-month treatment period, and also three months after it ended.
Our trial was the first-ever trial of telephone-delivered CBT for people with chronic widespread pain.

Exercise was also shown to improve pain and disability and helped people manage their symptoms.

Other research
Much of our research looks at pain at specifics sites. We’ve shown that yoga can help people manage back pain more effectively, and we’re currently investigating acupuncture and the Alexander technique as possible treatments for neck pain.

We’re looking at better ways of managing back pain in primary care by developing a new screening tool for GPs which has been designed to pick up whether a patient’s risk of back pain becoming chronic is low, medium or high – and which is enthusiastically being taken up by GPs around the country. Patients are then offered different treatments, with those at highest risk of their back pain becoming chronic given the most intensive physiotherapy treatment, while those at low risk are encouraged to avoid numerous sessions of treatment that are unlikely to be beneficial.

We’re looking at whether a particular intense form of CBT can help people whose back pain has led them to withdraw from society and normal life, people who are known as ‘fear avoidant’. It’s being compared to physiotherapy. Early results look promising.
Click to expand...

https://www.arthritisresearchuk.org...-and-arthritis/pain-report/pain-research.aspx

Also, there was that time when the Research Councils website reported Arthritis Research UK were giving funding to PACE, only for them to say that was not the case, and then nothing came of it:
https://twitter.com/i/web/status/773447439839817729

Here's the Royal Scoiety meeting on fatigue Holgate mentioned: https://royalsociety.org/science-events-and-lectures/2017/09/neurobiology-fatigue/#

Session 1 is chaired by Trudie Chalder.

Then we have the CMRC's Mark Edwards speaking:

16:05-16:40 Fatigue and Functional Neurological Disorder – making a pathophysiological link
Professor Mark Edwards, St George's University of London, UK

Abstract
Functional neurological disorder (conversion disorder/psychogenic disorder) is one of the commonest diagnoses made in neurology clinics. People present with genuine neurological symptoms, but such symptoms ‘break rules’ regarding basic anatomy and physiology. Patients with functional neurological disorder have traditionally fallen down the crack between the dualistic divide of neurology and psychiatry, and tend to have a poor prognosis. Recent developments in pathophysiological thinking in this disorder has provided a neurobiological account of functional symptoms to go alongside psychodynamic accounts. This account uses models of brain function based on active inference to explain functional symptoms. This lecture will consider if there is an extension of this work to help us understand the pathophysiology of fatigue, and how this might also enhance treatment.
Click to expand...

Apparently the 'visionary' Mark Edwards has suggested that the CMRC reconsider its purpose after this years conference.

Please God... don't let anything come of the meeting with Vicky Whittemore from NIH. The last thing we need is for the mentality of the CMRC to contaminate the USA.

Holgate's talk was more positive spin on bad developments. I think it's more likely that he's just mindlessly deferential to authority rather than acting out on any sinister intentions, but that doesn't make it any better for us.
 
Last edited:
You must log in or register to reply here.