United Kingdom 2024: Online workshops on ME/CFS Research

[Trish]

Thanks, so the chair says 'a number of comments in the chat saying they were finding wearables 'incredibly unreliable, not recordiing accurately what they were doing, things like that.'
So not lots of people, just 'a number of people' and the chair's quick glance through a few people responding in the chat.
I take that as unreliable evidence, just a few random people agreeing with what ST already said.
Hardly the basis for ST to dismiss so comprehensively any use of wearables.
Also ST says she herself uses HR monitoring to help with pacing, as lots of people do and have done for decades along with step monitoring.
Her justification here seemed to be that they are not yet proven as research outcome measures, yet she kept asserting that her PROMs are intended for clinical care, not for trials. She can't have it both ways. Her PROMs are not yet proven as outcome measures either, and definitely no more reliable, let alone objective.

 

[MrMagoo]

Thanks, so the chair says 'a number of comments in the chat saying they were finding wearables 'incredibly unreliable, not recordiing accurately what they were doing, things like that.'
So not lots of people, just 'a number of people' and the chair's quick glance through a few people responding in the chat.
I take that as unreliable evidence, just a few random people agreeing with what ST already said.
Hardly the basis for ST to dismiss so comprehensively any use of wearables.
Also ST says she herself uses HR monitoring to help with pacing, as lots of people do and have done for decades along with step monitoring.
Her justification here seemed to be that they are not yet proven as research outcome measures, yet she kept asserting that her PROMs are intended for clinical care, not for trials. She can't have it both ways. Her PROMs are not yet proven as outcome measures either, and definitely no more reliable, let alone objective.

Aha, yes the “in the chat” comments were referred to towards the end of Tyson’s talk- after she has extensively derided them. The people in the chat seemed to be wholeheartedly in agreement.

Luckily there didn’t appear to be any abuse in the comments either. Good job they warned everyone ahead of, and at the start of the conference.

 

[rvallee]

Thanks, so the chair says 'a number of comments in the chat saying they were finding wearables 'incredibly unreliable, not recordiing accurately what they were doing, things like that.'
So not lots of people, just 'a number of people' and the chair's quick glance through a few people responding in the chat.
I take that as unreliable evidence, just a few random people agreeing with what ST already said.
Hardly the basis for ST to dismiss so comprehensively any use of wearables.
Also ST says she herself uses HR monitoring to help with pacing, as lots of people do and have done for decades along with step monitoring.
Her justification here seemed to be that they are not yet proven as research outcome measures, yet she kept asserting that her PROMs are intended for clinical care, not for trials. She can't have it both ways. Her PROMs are not yet proven as outcome measures either, and definitely no more reliable, let alone objective.

There is definitely a basis to this. They are not especially accurate, but that much precision isn't really needed, and the problem exists with all devices, which normalizes the problems a bit.

For sure refusing to use them is a classic perfect being the enemy of good. Not only are they good enough, using them in a standardized way will make those problems less significant with time.

 

[MrMagoo]

There is definitely a basis to this. They are not especially accurate, but that much precision isn't really needed, and the problem exists with all devices, which normalizes the problems a bit.

For sure refusing to use them is a classic perfect being the enemy of good. Not only are they good enough, using them in a standardized way will make those problems less significant with time.

They are more reliable than a 90 question survey asking you to recall activity in the past month

 

[Sean]

There is definitely a basis to this. They are not especially accurate, but that much precision isn't really needed, and the problem exists with all devices, which normalizes the problems a bit.

For sure refusing to use them is a classic perfect being the enemy of good. Not only are they good enough, using them in a standardized way will make those problems less significant with time.

What is required is that they are reasonably accurate at recording changes and trends for the individual. It is the variations that seem most important here, though the absolute values do matter as well.

 

[Dolphin]

Well that was useful (not)
I tried to open one of the documents and got an access denied response.

I just checked and still can't access them.

 

[hotblack]

After a bit of fiddling with the unintuitive OneDrive interface I have downloaded all the Agenda and Presentation documents. I can post them here or share them somewhere if it helps people?

If you try to do the natural thing and select/click the icon of a document you’re prompted to login (I didn’t).
What I did do (from an iPad running Safari) is this:
- select document by clicking the invisible tick to the far left of a document
- the ‘task bar’ at the top changes to show various options
- choose the download option
If you select multiple items the download option vanishes, so you have to do one at a time.

 

[Dolphin]

Merged

https://www.actionforme.org.uk/news/watch-now-mecfs-research-workshops/

Watch now: ME/CFS research workshops
July 29, 2024

Hundreds of people living with ME/CFS, researchers and clinicians recently came together in a series of online workshops designed to stimulate clinical research in ME/CFS.

Action for M.E. is pleased to be able to share support by hosting these workshops and now sharing the recordings on our YouTube channel.

The workshops were organised by Monica Bolton, a Patient and Public Involvement member of the Research Working Group tasked to input into the Government’s ME/CFS Delivery Plan, with support from Alan Mould.

Their aim is to raise the profile of ME/CFS clinical research, increase collaboration, attract new researchers and formulate research priorities in this area of huge unmet need.

Clinical trial design in people with ME/CFS (4 June) Participants looked at how to optimise this, possibilities for a core outcome set and lessons from other disease areas. Watch the recording and/or review the agenda and presenters' slides.

Clinical trial platform studies (6 June) An online discussion about two Platform studies, the Octopus treatment trial for multiple sclerosis, and STIMULATE-ICP for Long COVID which included a drug repurposing clinical trial, drawing out lessons for clinical research in ME/CFS, particularly for drug repurposing studies. Watch the recording and/or review the agenda and presenters' slides.

Drug repurposing clinical trials in people with ME/CFS (26 June) Including discussing two clinical trials of low dose naltrexone (LDN) in fibromyalgia, clinical studies in people with ME/CFS in the UK and the clinical use of potential drugs such as LDN. Watch the recording and/or review the agenda and presenters' slides.

ME/CFS research and underserved groups (16 July) This workshop looked at the stigmas surrounding chronic illnesses, improving diagnosis and health care provision, and widening recruitment and participation in clinical trials, for people with ME/CFS, particularly those who are already minoritised or socially disadvantaged in society, the severely affected and children and young people. Watch the recording and/or review the agenda and presenters' slides.

Further work and potential collaborations arising from these workshops are being taken forward. For more information, please email Monica and Alan.

https://twitter.com/user/status/1832751658423431205