United Kingdom: ME Association news

The ME Association response to its criticism at the AG of not understanding is a survey for Pw severe ME. This is apparently open to non members as well as members so sharing here so people can complete it if they want. It is apparently rather long though!
meassociation.org.uk

Severe ME Panel Survey - The ME Association

Severe ME Panel Survey Severe ME Panel Survey Information This […]
meassociation.org.uk meassociation.org.uk
 
I'll have a go at completing it later.

Just noting for now that they are also running a Zoom session for their members with severe ME. Good luck with that... I for one, even if I were a member, would not be able to participate in a Zoom session, and I'm at the moderate end of severe. I wonder how realistic it is for many with severe ME to participate meaningfully in a group session on Zoom.
 
Kiristar said:
The ME Association response to its criticism at the AG of not understanding is a survey for Pw severe ME. This is apparently open to non members as well as members so sharing here so people can complete it if they want. It is apparently rather long though!
meassociation.org.uk

Severe ME Panel Survey - The ME Association

Severe ME Panel Survey Severe ME Panel Survey Information This […]
meassociation.org.uk meassociation.org.uk
Click to expand...
The survey has 88 questions! For severely ill PwME!!!!!!!!!!!!
 
Kiristar said:
MEA and BHA (British Haematology Association - ifirc) respond to an article in the mirror about bloodletting...

meassociation.org.uk

The ME Association responds to unsubstantiated claims that bloodletting can treat serious medical conditions - The ME Association

An article in the Mirror explains that bloodletting involves drawing […]
meassociation.org.uk meassociation.org.uk
Click to expand...
A mishap could happen? That's what Charles Shephard called it.
Patients could die from bloodletting when they already might have a lowered blood volume.
 
I have just bashed my way through the whole survey, in 2 goes.

By the end I gave up on the written answers.

It's a ridiculous survey with multiple variations on each question so I was repeating myself in some answers, and some questions are so open ended one could write a paper and others I had no idea what I was supposed to be answering.

I've no idea who designed it, but I give them Nil points.
 
Trish said:
I have just bashed my way through the whole survey, in 2 goes.

By the end I gave up on the written answers.

It's a ridiculous survey with multiple variations on each question so I was repeating myself in some answers, and some questions are so open ended one could write a paper and others I had no idea what I was supposed to be answering.

I've no idea who designed it, but I give them Nil points.
Click to expand...
Yes, atrocious design and all on a painful white bg. Could have been massively simplified. Goes to show they do definitely need a panel of PwSME to sanity check what they produce!
 
Trish said:
I have just bashed my way through the whole survey, in 2 goes.

By the end I gave up on the written answers.

It's a ridiculous survey with multiple variations on each question so I was repeating myself in some answers, and some questions are so open ended one could write a paper and others I had no idea what I was supposed to be answering.

I've no idea who designed it, but I give them Nil points.
Click to expand...
Mon dieu I have just done that survey.

The design was a “slider” where you move the dot along a line, from 1-10.

Except, the majority of the questions using this format required a yes or no answer, so no=1 and yes=10 or vice versa depending on the question

Do people not do training for their jobs any more? This is very basic questionnaire planning and formatting, why oh why make it harder for pwME by using a slider when a yes/no tick box would save energy? And…make sense generally?

Oh it’s in dark mode, whoop de do. We’ve made it accessible.
I can’t cope with dark mode either. It’s absolutely scrambled my eyes.
 
Just now on the MEA fb - posted so people can also click thru to see comments when they appear.

- I'm guessing as a funding announcement from the NIHR it might need a thread in itself to look into what it means as a development?



Funding announcement from the NIHR regarding the treatment or management of Long Covid, ME/CFS and other post infection syndromes.

This announcement appears to link in with what may be the imminent publication of the DHSC Delivery Plan
Dr Charles Shepherd
Hon Medical Adviser
Member DHSC Delivery Plan Working Group on research
Research specification

We are keen to accelerate progress in the treatment and management of post-acute infection syndromes and associated conditions, including long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

This funding opportunity is a key component of the NIHR’s recognition of the need for further research-based evidence related to the diagnosis, management and treatment of post-acute infections and associated conditions.

Specifically, the MRC-NIHR Efficacy and Mechanism Evaluation (EME) Programme wishes to fund a project which will accelerate the necessary learning and preparation to explore the feasibility of a phase 2 platform, and to establish the optimum approach for phase 2 platform architecture that tests multiple repurposed pharmaceutical interventions and/or non-pharmacological interventions and devices.

The phase 2 platform will be UK-led and will aim to test multiple different therapies simultaneously and efficiently.

In preparation, the NIHR Innovation Observatory (NIHRIO) has undertaken a rapid horizon scan to identify repurposed medicines in clinical development for the treatment of ME/CFS, as well as related conditions such as long COVID and fibromyalgia.

The horizon scan focused on medicines with a UK licence that are in phase 2 or 3 clinical trials, with trial registration dates from 2020 onwards.
 
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