United Kingdom 2024: Online workshops on ME/CFS Research

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UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Excerpts from Email re workshop tomorrow:


"Clinical trial design in people with ME/CFS on 4th June 2024, 13:00 to 15:30.

The workshop aims to generate research ideas and find ways forward for ME/CFS clinical research in the UK, particularly around the area of clinical trial design in people with ME/CFS.

We are pleased to announce that Professor Sarah Tyson, Honorary Professor of Rehabilitation at the University of Manchester, has agreed to chair this meeting due to the indisposition of Professor van Marwijk.

The workshop is being recorded and we hope to make it available afterwards as a resource. If you prefer, you can change your zoom name so you remain anonymous.

Please listen and respect all contributors’ opinions.

In rare cases where you disagree, feel free to comment, but please don’t be abusive. Any abusive language will not be tolerated, and anyone persisting after a warning would be removed from the workshop.

We have timed breaks at 2pm and just before 3pm. If you are a person with ME/CFS, it is particularly important you pace yourself through the workshop and take extra breaks if needed. You can dip in and out as you need to, use the agenda to decide what parts you want to join.

With kind regards

Monica Bolton



Agenda for online workshop on Clinical trial design in people with ME/CFS on 4th June 2024, 13:00 to 15:30.


13:00 Chair: Sarah Tyson, Honorary Professor of Rehabilitation at University of Manchester

Short introduction: Monica Bolton – person with ME/CFS

13:10 Sarah Gorst – COMET Initiative Project Co-ordinator (Core Outcome Measures in Effectiveness Trials). Core outcome sets, and the development of a core outcome set for long COVID.

13:30 Sarah Tyson – Honorary Professor of Rehabilitation at University of Manchester, outcome measures in ME/CFS clinical studies

13:45 discussion followed by short break

14:10 Caroline Kingdon – Research Fellow at London School of Hygiene and Tropical Medicine, the CureME and ME biobank experience of ME/CFS clinical studies.

14:25 Anna Williams – Professor of Regenerative Neurology at Edinburgh University, the drug selection process for the Octopus platform study for progressive MS.

14:40 Jessica Eccles – Reader in Brain-Body Medicine at Brighton and Sussex Medical School, feedback from previous PPI events on what people with ME want and need to participate in clinical trials.

14:55 short break followed by discussion on ways forward/next steps
 
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Agenda said:
In rare cases where you disagree, feel free to comment, but please don’t be abusive. Any abusive language will not be tolerated, and anyone persisting after a warning would be removed from the workshop.
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Is this normal in webinars like this, or is it specially inserted because of mythology about abusive pwME? It seems to me to be pretty insulting that they feel they need to include such a statement.
 
Woah that is ridiculous. Are they deliberately trying to upset people so that they get cross on the call. These people are so patronising

rare cases where you disagree- what is that saying. It’s supposed to be soliciting feedback which normally wouldn’t involve everyone having the same opinion unless they are robots
 
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"In rare cases where you disagree, feel free to comment, but please don’t be abusive. Any abusive language will not be tolerated, and anyone persisting after a warning would be removed from the workshop."



That's an outrageous statement.

1/ Patients disagreeing with, say, Sarah Tyson's PROMS, was not "rare". The assumption that agreement with the speakers would be near universal is worryingly arrogant.

2/ The statement pre-emptively accuses pwme of abuse, before any abuse has been identified. Reads like smearing.

3/ Sarah Tyson's offensive statements on this forum I would class as abusive. So really, the 'warning' looks like victim blaming, and silencing.

DARVO.

.

.
 
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MrMagoo said:
Much better to let them put their silly disclaimer then experience *absolutely zero abuse*
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And attribute that absolutely zero abuse to the disclaimer/warning?

Seriously, of course no online seminar that invites audience participation should put up with abuse, but I think this is the first time I've ever seen such a warning. People running the zoom can cut anyone off if they want to, there's no need to make an issue of it in advance.
 
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Normal good practice chairing of any meeting especially larger groups where people are remote would be to explain when questions will be taken, how to indicate you have a question or a point to make, whether the meeting discussion should be kept to those attending or if it’s ok to tell others outside the group.

asking for courtesy and mutual respect, not speaking over others, keeping comments to the point is all perfectly acceptable. This I’ve never heard before.
 
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Trish said:
And attribute that absolutely zero abuse to the disclaimer/warning?

Seriously, of course no online seminar that invites audience participation should put up with abuse, but I think this is the first time I've ever seen such a warning. People running the zoom can cut anyone off if they want to, there's no need to make an issue of it in advance.
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It makes them look paranoid
 
That's interesting that the Octopus trial is at 14.25

Its something that cropped up on my social media a while ago, is for MS, and is basically from what I can see a way of speeding up testing of multiple treatments. The following page summarises it best: Octopus | MS Society

How does Octopus work?
Octopus uses what’s called a multi-arm, multi-stage (MAMS) design – the first time this has even been done in MS.

MAMS trials make it possible to test new treatments up to three times faster by:

  • Testing multiple drugs at once – and comparing them with a single control group.
  • Using MRI to get an idea of whether a drug looks like it has potential, many months before we’d be able to see an effect of the drug on disability progression. Promising-looking drugs stay in the trial, with hundreds more people joining the existing participants. So what would normally be two consecutive trials are delivered in one.
  • Adding the flexibility to drop drugs that don’t look promising, and slot in new drugs as they’re discovered.
Merging separate trials may sound obvious. But launching a MAMS trial for MS needs so many things to line up perfectly. From hospitals around the country equipped to be trial sites, to the incredibly complicated statistics that underpin the design.
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It seems to be funded by MS Society.

There is also a page about it on the MS trust: Octopus trial for progressive MS | MS Trust

And what looks like the 'official' page (combined logos including MRC funding council, UCL and MS Society): Home | Octopus Trial (ucl.ac.uk)
 
MEMarge said:
Posts moved from
UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

Excerpts from Email re workshop tomorrow:


"Clinical trial design in people with ME/CFS on 4th June 2024, 13:00 to 15:30.

The workshop aims to generate research ideas and find ways forward for ME/CFS clinical research in the UK, particularly around the area of clinical trial design in people with ME/CFS.

We are pleased to announce that Professor Sarah Tyson, Honorary Professor of Rehabilitation at the University of Manchester, has agreed to chair this meeting due to the indisposition of Professor van Marwijk.

The workshop is being recorded and we hope to make it available afterwards as a resource. If you prefer, you can change your zoom name so you remain anonymous.

Please listen and respect all contributors’ opinions.

In rare cases where you disagree, feel free to comment, but please don’t be abusive. Any abusive language will not be tolerated, and anyone persisting after a warning would be removed from the workshop.

We have timed breaks at 2pm and just before 3pm. If you are a person with ME/CFS, it is particularly important you pace yourself through the workshop and take extra breaks if needed. You can dip in and out as you need to, use the agenda to decide what parts you want to join.

With kind regards

Monica Bolton



Agenda for online workshop on Clinical trial design in people with ME/CFS on 4th June 2024, 13:00 to 15:30.


13:00 Chair: Sarah Tyson, Honorary Professor of Rehabilitation at University of Manchester

Short introduction: Monica Bolton – person with ME/CFS

13:10 Sarah Gorst – COMET Initiative Project Co-ordinator (Core Outcome Measures in Effectiveness Trials). Core outcome sets, and the development of a core outcome set for long COVID.

13:30 Sarah Tyson – Honorary Professor of Rehabilitation at University of Manchester, outcome measures in ME/CFS clinical studies

13:45 discussion followed by short break

14:10 Caroline Kingdon – Research Fellow at London School of Hygiene and Tropical Medicine, the CureME and ME biobank experience of ME/CFS clinical studies.

14:25 Anna Williams – Professor of Regenerative Neurology at Edinburgh University, the drug selection process for the Octopus platform study for progressive MS.

14:40 Jessica Eccles – Reader in Brain-Body Medicine at Brighton and Sussex Medical School, feedback from previous PPI events on what people with ME want and need to participate in clinical trials.

14:55 short break followed by discussion on ways forward/next steps
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Good bit of priming there from Sarah Tyson....

but confusing given I thought she was the one who became abusive / name-calling as a bit of a distraction from the questions she I guess didn't want to have noticed or asked about her research ?

Is that not classic DARVO (also a form of abuse?) to be the person who 'did it', then decided not to apologise, and then tries to prime every person who doesn't know what she did/happened to think maybe the opposite happened?

I hope the full event is being filmed from start to end for the official record, just in case claims are made that are incorrect.
 
Lou B Lou said:
"In rare cases where you disagree, feel free to comment, but please don’t be abusive. Any abusive language will not be tolerated, and anyone persisting after a warning would be removed from the workshop."



That's an outrageous statement.

1/ Patients disagreeing with, say, Sarah Tyson's PROMS, was not "rare". The assumption that agreement with the speakers would be near universal is worryingly arrogant.

2/ The statement pre-emptively accuses pwme of abuse, before any abuse has been identified. Reads like smearing.

3/ Sarah Tyson's offensive statements on this forum I would class as abusive. So really, the 'warning' looks like victim blaming, and silencing.

DARVO.

.

.
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As long as it works both ways hey.

Can someone get word to Monica that abuse / abusive particularly does, and always have for any laypersons included suggesting to those who might be that way inclined that 'hysterical woman' accusations and words specifically including and 'in the spirit of': catastrophising, hysterical, hysterical projection, projection, conspiracy theory/theories . And are particularly and deliberately hurtful to those with ME who have had a tyranny of that harming their health, it turns out, based on others false beliefs that weren't justified.

Oh and when the name-caller has no background whatsoever in any form of psych to make any assessment to use those terms other than as laypersons insults. I doubt a trained psychologist worth their salt would use them. They aren't really technical terms in that form.

And that should specifically include inaccurately suggesting someone's perfectly fair questions might be 'mere' hysterical projection, catastrophising, conspiracy theories, overt hostility and insults


So if that is what it is about then it would be a fair point.

But they've ironically put Sarah as chair, so ...
 
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