United Kingdom 2024: Online workshops on ME/CFS Research

ME Research UK post on the 4 workshops:
Research Workshops – attendance invitation

https://www.meresearch.org.uk/research-workshops-attendance-invitation

 

ME Research UK post on the 4 workshops:
Research Workshops – attendance invitation

https://www.meresearch.org.uk/research-workshops-attendance-invitation

 

ME Research UK post on the 4 workshops:
Research Workshops – attendance invitation

https://www.meresearch.org.uk/research-workshops-attendance-invitation

 

ME Research UK post on the 4 workshops:
Research Workshops – attendance invitation

https://www.meresearch.org.uk/research-workshops-attendance-invitation

 

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

 

"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.

.

.

 

Would it be possible to develop core outcome measures according to the class of expected benefit? E.g. on PEM, on exercise tolerance, on pain, etc.?

 

Much better to let them put their silly disclaimer then experience *absolutely zero abuse*

 

Perhaps it is meant to keep Tyson in line and stop her further abusing members of the patient community?

 

It makes them look paranoid

 

Can’t wait to see the video when it’s released in a few days

 

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

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)

 

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.

 

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 ...

 

It'd be hilarious if someone asked whether "hysterical projection, catastrophising, conspiracy theories, overt hostility and insults" counted as abusive language.