Link to videos of talks from the CMRC conference

[charles shepherd]

Top man ... a rarity in that context!

Peter Rowe also led an afternoon clinical Workshop on orthostatic intolerance, neurally mediated hypotension and PoTS

I was at another Workshop - so I do not know if Peter's was recorded on video

CS

 

[Snow Leopard]

Does anyone know much about the Poland study that Julia Newton discussed?

 

[NelliePledge]

I agree on it was good Phil calling out the fatigue narrative vs multi symptom illness patients experience. I winced through the PHysio talk from the fatigue clinic and holgates often is reductionist with pain and fatigue and I thought he articulated that well. I simply don't understand how he can work with Crawley who often says CF, part devised NICE criteria which slipped in the interchangeability of PEM & PEF and uses that criteria and who does fatigue studies under the CFS name. Likewise the criteria chosen for MEGA, which the PAG now is basically a fan club of, is NICE?? Are the PAG able to get PEM recognised by the MEGA Drs?

Most of his talk was good but...

I also agree on the headlines vs research, AFME always do this , show outrage at PACE or GET headlines and don't criticise the research or the presss RELEASE on which they're based. For him maybe he's a PACE fan but it's nativity, for them it's duplicitous.

Whilst I think hearing patients voice was good I think it was also PR showing how the CMRC /MEGA has patients backing, when the PAG were a subset of patients who are CMRC/MEGA out and out supporters, those critical left.

Summed up my feelings about it Cinders. He made some good points. I don't think we know from anything he said that he is actually a supporter of PACE tho. He may be naive to the politics. Some people dislike politics and shy away from it as negative and unnecessary conflict without understanding or believing that politics is inherent in our daily lives, and also inherent in scientific research. Being a patient representative is political even if you put PACE aside. The comments he made about getting the severe patients included in research is political because their neglect is political.

 

[NelliePledge]

This was an extremely busy, diverse and enjoyable two day biomedical research conference in Bristol. Probably the best CMRC conference so far…..

We were fully booked with lots of young and new researchers present from both the UK and from abroad (USA, Australia, Netherlands, Norway, Poland.....)

And there were some excellent presentations from people like James McCullagh, Karl Morten, Julia Newton, Neil Harrison (UK), Avi Nath (NIH/USA), Don Staines (Australia) Peter Rowe (USA) and Jose Montoya (USA). The latter had flown to the UK at his own expense to come to the conference.

I will produce a short report covering the most important points to emerge later today.

Dr Charles Shepherd - Hon Medical Adviser, MEA

Look forward to it. Disappointing that people opted out of being recorded. Also the Montoya presentation hasn't been put online yet which is one of the main ones people will be wanting to see. Others were up very quickly.

 

[snowathlete]

@Esther12 thanks for articulating it so well. What may have happened is that Holgate received his information on these issues straight from Crawley and therefore does not believe that any criticism of PACE/CBT/GET is legitimate. Instead he sees it the way Crawley is presenting it: an excuse by mean people to attack researchers for personal or ideological reasons. He is trying to solve the wrong problem and therefore failing to succeed. He is trying to get everyone to be nice to each other and collaborate, hoping that disagreements will disappear. But they won't because the bad science isn't being challenged and the CBT/GET proponents continue to publish more bad science.

He recognizes as well that in the US things have changed. Is he really unable to work out what made the change happen?

 

[A.B.]

He recognizes as well that in the US things have changed. Is he really unable to work out what made the change happen?

Rather than collaborating with everyone they threw the psychobabble garbage over board.

 

[Cinders66]

Summed up my feelings about it Cinders. He made some good points. I don't think we know from anything he said that he is actually a supporter of PACE tho. He may be naive to the politics. Some people dislike politics and shy away from it as negative and unnecessary conflict without understanding or believing that politics is inherent in our daily lives, and also inherent in scientific research. Being a patient representative is political even if you put PACE aside. The comments he made about getting the severe patients included in research is political because their neglect is political.

Hi NELLIE
If he's representing us on PAG he should be aware of the PACE trial and all the criticisms I'd think . I said he was a supporter because he critiqued the headlines but said that's not the fault of the paper it was fine or good or something didn't he? Maybe I misremember. I regard that as a science judgement not politics though .

I must have had a lapse (not Uncommon) when he spoke about the severe as I missed that , I'm glad. The lack of talk on the severe again would be my general criticism of the CMRC conference, unless there was some but not uploaded that we haven't heard of yet .
The state funders have happily but woefully neglected the severe for years, you can argue all you like about GET and psychotherapy for the ambulant but we knew since 1990s cases like Lynn gilderlade existed but they were ignored as examples of serious, complex illness needing help. .

 

[Cinders66]

Does anyone know much about the Poland study that Julia Newton discussed?

I was impressed by Dr newtons talk which seemed to be quite "pointed" until she happily talked of a novice steering all his new discovered patients on a graded exercise trial which horrified me, unless it is an extremely flexible, listen to symptoms, drop out as required approach. why would get be one size fits all treatments for people who can't produce energy ?

 

[Snow Leopard]

Rather than collaborating with everyone they threw the psychobabble garbage over board.

Brian Wallit?

Cher does an impression of EC.........stunning
View attachment 23777

Cher is always stunning, EC not so much.

 

[charles shepherd]

Does anyone know much about the Poland study that Julia Newton discussed?

ME/CFS in POLAND

There was a group of four (if my memory is correct) clinicians and researchers over from Poland (all working at the Nicolaus Copernicus University)

ME/CFS is almost unrecognised in Poland - so they are trying to increase recognition, clinical services and get some research going

There was a short presentation from one member of the group and they produced a poster for the poster session

There should be more information in the main conference report - which is now being prepared

The Polish group have been collaborating with Julia Newton's group in Newcastle on testing autonomic nervous system dysfunction in ME/CFS

From the Newcastle Research Group's Facebook Page (2003) on the Newcastle-Poland collaboration:

POLAND
We have a research collaboration - this is where teams of researchers work together to the benefit of both - with a team in Poland who have lots of expertise in state of the art autonomic testing. They have helped us develop new ways of looking at the beat to beat blood pressure data that our systems use. They tell us that CFS/ME doesn't exist in Poland - but we have explained to them that what they really mean is that it isn't recognized. They are looking to do a project to identify CFS /ME and we are wondering whether anyone is aware of a patient group or a doctor in Poland who we could contact. We also have collaborations now with groups in the US, Europe and South Africa.

Anyone on PR from Poland??

CS

 

[Esther12]

@Esther12 thanks for articulating it so well. What may have happened is that Holgate received his information on these issues straight from Crawley and therefore does not believe that any criticism of PACE/CBT/GET is legitimate but merely an excuse to attack researchers for personal or ideological reasons. He is trying to solve a problem that does not exist and therefore failing to succeed. And the way he is trying to solve it is by trying to get everyone to be nice to each other and collaborate.

If he, or anyone else with any authority, had bothered to properly investigate patient's concerns when PACE was first released we'd be in a much better position now. Instead he chose to just trust and praise Crawley, then be frustrated and bemused that so many patient's seemed unwilling to 'support' his work.

I also agree on the headlines vs research, AFME always do this , show outrage at PACE or GET headlines and don't criticise the research or the presss RELEASE on which they're based. For him maybe he's a PACE fan but it's nativity, for them it's duplicitous.

Whilst I think hearing patients voice was good I think it was also PR showing how the CMRC /MEGA has patients backing, when the PAG were a subset of patients who are CMRC/MEGA out and out supporters, those critical left.

Yes, parts of it really reminded me of how Action for ME misrepresent things. It could be that he has trusted their spin?

Despite the dodgy introduction, the RSM conference looks pretty good. God knows why chalder is chairing a neurobiology session.

I'm pretty intollerant of quacks. Hard to respect a fatigue conference that gives Chalder a position like that!

He recognizes as well that in the US things have changed. Is he really unable to work out what made the change happen?

LOL

 

[Cinders66]

ME/CFS in POLAND

There was a group of four (if my memory is correct) clinicians and researchers over from Poland (all working at the Nicolaus Copernicus University)

ME/CFS is almost unrecognised in Poland - so they are trying to increase recognition, clinical services and get some research going

There was a short presentation from one member of the group and they produced a poster for the poster session

There should be more information in the main conference report - which is now being prepared

The Polish group have been collaborating with Julia Newton's group in Newcastle on testing autonomic nervous system dysfunction in ME/CFS

From the Newcastle Research Group's Facebook Page (2003) on the Newcastle-Poland collaboration:

POLAND
We have a research collaboration - this is where teams of researchers work together to the benefit of both - with a team in Poland who have lots of expertise in state of the art autonomic testing. They have helped us develop new ways of looking at the beat to beat blood pressure data that our systems use. They tell us that CFS/ME doesn't exist in Poland - but we have explained to them that what they really mean is that it isn't recognized. They are looking to do a project to identify CFS /ME and we are wondering whether anyone is aware of a patient group or a doctor in Poland who we could contact. We also have collaborations now with groups in the US, Europe and South Africa.

Anyone on PR from Poland??

CS

Are you happy with the graded exercise trial Charjes? Julia seemed to think having unpolitical patients made it different but does unpolitical also mean unaware and vulnerable?

 

[Jo Best]

ME/CFS in POLAND

There was a group of four (if my memory is correct) clinicians and researchers over from Poland (all working at the Nicolaus Copernicus University)

ME/CFS is almost unrecognised in Poland - so they are trying to increase recognition, clinical services and get some research going

There was a short presentation from one member of the group and they produced a poster for the poster session

There should be more information in the main conference report - which is now being prepared

The Polish group have been collaborating with Julia Newton's group in Newcastle on testing autonomic nervous system dysfunction in ME/CFS

From the Newcastle Research Group's Facebook Page (2003) on the Newcastle-Poland collaboration:

POLAND
We have a research collaboration - this is where teams of researchers work together to the benefit of both - with a team in Poland who have lots of expertise in state of the art autonomic testing. They have helped us develop new ways of looking at the beat to beat blood pressure data that our systems use. They tell us that CFS/ME doesn't exist in Poland - but we have explained to them that what they really mean is that it isn't recognized. They are looking to do a project to identify CFS /ME and we are wondering whether anyone is aware of a patient group or a doctor in Poland who we could contact. We also have collaborations now with groups in the US, Europe and South Africa.

Anyone on PR from Poland??

CS

If it's biomedical research then you could suggest that the researchers in Poland contact Invest in ME Research as apparently there's already great interest in their 2018 Biomedical Research into ME Colloquium.

https://twitter.com/i/web/status/908300801625518080

 

[A.B.]

Julia seemed to think having unpolitical patients made it different but does unpolitical also mean unaware and vulnerable?

What did she say exactly?

 

[Cinders66]

What did she say exactly?

I can't remember exactly I'm afraid but the video of it is on YouTube day 2 and it's about ten minutes in, before dr Karl takes over

 

[Jo Best]

Interesting that Dr Crawley clearly didn't give permission for her talk to be added.

It was chilling when last year she described how children and young people with ME are very clear about the chain of events: they get ill, can't go to school, can't socialise, etc., exactly how it is, and then with a wry smile said, but doctors think it's a bit more complicated than that, in other words, the old psycho-social perpetuating factors. It's so heartbreaking to contemplate the decades of neglect of biomedical research to inform Paediatrics.

 

[Cinders66]

What did she say exactly?

It's here at about 10:30 in
They also are using Fukuda which I think is bad for exercise tests as PEM isn't required, unless they're Also using questionaires on symptoms to see which in that umbrella has what and how they respond.

 

[NelliePledge]

Hi NELLIE
If he's representing us on PAG he should be aware of the PACE trial and all the criticisms I'd think . I said he was a supporter because he critiqued the headlines but said that's not the fault of the paper it was fine or good or something didn't he? Maybe I misremember. I regard that as a science judgement not politics though .

I must have had a lapse (not Uncommon) when he spoke about the severe as I missed that , I'm glad. The lack of talk on the severe again would be my general criticism of the CMRC conference, unless there was some but not uploaded that we haven't heard of yet .
The state funders have happily but woefully neglected the severe for years, you can argue all you like about GET and psychotherapy for the ambulant but we knew since 1990s cases like Lynn gilderlade existed but they were ignored as examples of serious, complex illness needing help. .

yes i didnt quite catch what he said about the paper - for me PACE is politics masquerading as science so everything about it is political. I suppport the scientific dismantling of it by Keith Geraghty and all involved of course. Because the science needs to be dismantled to take that veneer away.

 

[Jo Best]

Agreeing there was some kind of physiological basis for this, she then said patient education with a biopsychosocial frame was essential to help patients understand what was happening to them and prevent them from freaking out too much, which could lead to sensitisation...

Potentially harmful that medical students are hearing BPS approach advocated at an ME research conference.

 

[Jo Best]

I wonder if that is a positive. He should be realizing the organization he set up is not working. Maybe that would allow something else to happen.

It is working for them in some ways. I'm not sure how much mainstream research funding has been awarded to Esther Crawely's studies since they set up the CMRC, but considerably more than any biomedical studies. MEGA failed at the first hurdle, but really by public relations blunders, they might have succeeded by the usual routes.