UK CMRC 2018 Conference Rachel French

I don’t think Rachel French has any real understanding of CFS/me as she calls it, just says it’s very vague, typified by fatigue and quotes GET and CBT as treatment, right. It’s like watching a school project. I don’t care if there’s some vague overlap with ibs personally, I’ve never seen one thread on here bemoaning life with IBS. Yes there’s lots of research papers linking all this because it’s a favourite topic of the bps lot to lump us all, detrimentally to “CFS” She even talks about PS stuff, MUS and is reducing CFS to CF and asks is psychological health causing fatigue. Jeez, I wouldn’t want to see more of this again and we deserve better than this but I guess there’s limits in UK to draw on.

 

The USA now have neurogastroenterologists who recognise problems with the autonomic system contribute to some IBS cases.

 

Be fair. The Bristol Stool Charts which she mentions could be useful in categorising the effluent from that region.

 

Yes but is it the worst feature, are people saying my IBS is driving me to despair as they do the debilitation and pain. Ofcourse gut issues can be serious, merry Croft had a terrible form but I didn’t see it described as IBS which I think of as mildly life affecting constipation and diarrhoea, is that wrong ? can an illness where you live but have gut issues, I’ve known personally three people living with diagnosed IBS, be remotely compared to an illness that by strict definitions reduces function by 50% at best at worst, cripples in agony.

 

I had IBS for 7 yrs before ME hit. It was/is unpleasant with very painful diarrhoea & stomach cramps. It was miserable but I lived a very full life & it rarely interfered with anything i wanted to do except for having to make sure i knew where all the toilets were & having to pretend i wasn't in pain at work quite often. So from my point of view I agree with you @Cinders66

 

I think I would leave it there.

It is a sign of the times that a medical registrar doing an MD should thin that she is able to lecture people about an illness she should realise they know ten times as much about as her.

This is to science What Pooh Bear's fluff blown in is to brain tissue.

 

Im not going to bother watching it ..it would only result in a tripe image. Hopefully the CMRC can weed out the crap for next time.

It would be good for them to gather feedback on the talks from the patient community. I would endure watching it if I was able to give it a rating.

 

I gather that CMRC has a patient advisory group. I think it would make sense for that group to feed on systematic patient comment on presentations at meetings.

When I was involved in medical scientific meetings it never occurred to me that patients should really be there as well, making sure presenters remained in the real world. Why shouldn't patients stand up during question times to ask presenters if they really think studying mice injected with collagen tells us anything useful about a human disease? Why shouldn't patients ask about the ethical background to a study?

I remember one particular occasion when it did hit home to me just how insular and detached from patient care medical meetings can be. There was a presentation by the Hammersmith Hospital, which had a reputation for doing rather cavalier things to patients in the name of science, sometimes with disastrous results. The presenter acknowledged this, joking about how many of their patients died! The audience had a good haw-haw. Things would have been a bit different if patient delegates were standard. And of course there would have been some patients in the audience - who happened also to be professionals. One of the strange things about the 2014 CMRC meeting where White laid in to patient activists was that there were plenty of patients and carers even in the 'closed' audience because as charity officials (like Charles Shepherd) they were entitled to full attendance. I still wonder a bit why none of them exploded. Presumably because they thought they would lose their right to attend. I had the advantage that it was of no significance to me whether or not I had that right. At the time I did not know enough about the background, but I did make my impression known later.

I don't see why CMRC should not in fact be a trailblazing organisation where patients are involved in science in a genuinely equal way. You need good session moderators to handle people who are off-target or unreasonable, but however difficult that is it is something one can constantly strive to get as good as can be. Some of the people speaking at this year's meeting need to be told that they are invited on the basis that they have something original and well grounded to say. Blathering on from a position of deep ignorance relative to the audience is not OK, especially from a junior person doing a PhD or whatever.

Where are the CMRC patient advocates? Are they on board here? If so why the heck not, since this is a much rigorous scientific atmosphere than any of these meetings?

 

Is there some way we can get in contact with the CMRC PAG and find someone willing (they can use an avatar and be nameless even) to liaison with our forum here to provide some sense of input from the wider community?

 

Crikey i had no idea he'd done that & nobody had stood up & challenged him on it. What a betrayal from our charity reps.

Indeed it is not, & its very telling that the Holgate's of this world think that people who know less about ME/CFS & the science around it, than your average S4ME member, are appropriate speakers/teachers.

 

And Pariante. He's also no junior and there's no evidence, to my mind, that he has moved away from a psychiatric explanation of ME. He may be hiding it now behind some faux biomed explanation, but, in my opinion, he's another one who needs to be ditched by the CMRC.