UK: Priority Setting Partnership for ME/CFS

Officially yes, but your ideas for research, could be shared on the forum and might be submitted by others.

 

Perhaps we should start a dedicated thread for ideas?

 

Started here, Discussion of suggestions for the ME/CFS Priority Setting Partnership

 

The survey has been open for two weeks now- I have checked with JLA and have been advised that it's OK to let you know re progress - this can help to make sure that it's as broadly represented as possible.
I'm also a member of the steering committee in a carer role.

There have been a total of 419 surveys completed and submitted.
Of these 363 have been submitted by those with ME, and of these 363, 145 were by those who are severe and 18 very severe. 25% group is playing a vital role in offering those who are severe and very severe an abillity to respond via text or phone

Social media seems to be playing a large role in providing awareness and links to the survey, so for all who have contributed and shared , thank you.

 

If you are wanting inspiration for your submission, Discussion of suggestions for the ME/CFS Priority Setting Partnership could be a helpful thread.

 

"Last week for #MEAwarenessDay our friends at @MEActNetUK shared an interview with some of our brilliant Steering Group members. Get a behind the scenes look at the project here!"

Code:

https://youtu.be/okn8Ham_tkM

 

Excellent questions @Trish as I'd expect.

The steering group will be getting our first feedback re the questions being asked in early June.

Please do promote this to any ME groups you belong to, and on Facebook, Twitter etc so that we can get some good ideas and a clear sense of what is urgently needed

There is some useful info and graphics on the website.
https://www.psp-me.co.uk/

Any questions, do ask

 

Hope it's okay to give some 'too late' criticism of your submitted comments Trish, but I still don't know how to address problems with the way funding has been directed to poor quality researchers, and any discussion could be a good thing for thinking things through:

I thought some of this was too forthright.

I don't think that we can say that the treatments have been "proven not to work" at the moment. Also, did NICE provide a quote like this?: "NICE has acknowledged that none of this research is of acceptable quality". I thought that the reviews assessed evidence for efficacy as low quality, but that's different to saying that the research is not of acceptable quality.

It's hard to make strong positive claims about anything much to do with ME/CFS, so I think it's best to avoid that approach. I reckon that the problem is more that things are a huge mess and that this is substantially the result of the failings of particular people and institutions, rather than that things have been proven not to work but some people won't accept that.

 

From the PSP website,

On the PSP process,
"You tell us the questions you think research should answer
We ask you - people with ME/CFS, carers and healthcare professionals - to tell us the questions that you think research should answer. This will be through an online or paper based survey. You don’t have to know whether research has already answered your questions – that is something we'll work out.

Data processing
We collect all the questions and sort them into themes. We'll also look to see whether any of the questions have been answered by research already and if so, we'll remove them from our list.

First round of priority setting
We ask you - people with ME/CFS, carers and healthcare professionals - to look at the long list of questions and to prioritise them. The Steering Group will decide how best to do this beforehand, once they know how many questions there are.

Final round of priority setting
We hold at least one workshop where some people with ME/CFS, carers and healthcare professionals look at the top 25 or 30 questions and work together to agree on the final priority order. If needed, we might hold more than one workshop, but the Steering Group won’t know whether this is a good idea until they see the themes in the questions in the previous stage."

And on submissions,
"Do I have to write a research question?

No. The most important thing is to draw on your own personal or professional experience of ME/CFS. Write as much or as little as you like. It is enough to write a short sentence about something that is important to you."


So from that information, you do not need to worry about the accuracy of any statement that you make, so long as your submission is about something that is important to you as a pwME.

 

Update in survey progress up to the end of week 4.
Survey completions 680
Of which 227 class themselves as severe, and 29 as very severe - i find this heartening as these are groups who are so often left out.

• 44% of responses relate to having had ME/CFS for between 5-20 years
• Over 60% respondants are aged between 35-74
• 44 responses from clinicians (with a wide range - dentist/ A&E/ OT/ holistic life coach/student/GP/nutrition nurse/social worker)- note that some of the clinicians also have ME.

If you have done the survey, (or not) there are ready made graphics and letter templates to widen awareness and participation which can be found here

Spread the word - ME/CFS Priority Setting Partnership (psp-me.co.uk)

examples attached below -it would be great to keep momentum going.

A lot of responses have come in via social media ( some via S4ME) - it would be good use the Wednesday ME Awareness format in social media to give it a boost after last week's ME Awareness week - I can appreciate that many may be resting up after last week though.

 

Hi @Amw66 , any chance of an update on progress?

 

Next step is that the Information Analyst groups similar questions together.

This will be done in conjunction with a sub-group of us, comprising a mix of the organisation reps, people with ME, carers and clinicians. This will probably take till the end of July, but we'll be starting next week.

All the original questions will be retained.

The phase after that will be checking which research questions have been answered to a high standard of evidence.

This will be starting around the time that the NICE GDL are published.

 

Will update from laptop in morning . Phone is too easy to mistype.

 

Responses up to 6th June 2020 - summary
Total 831 responses
of which

711 are those diagnosed with ME at any time aged 16 or older
138 are carers/ family
53 are health care professionals who work with PwME
10 are other ( people without formal diagnosis, advocate, student, politically interested person...)

illness severity of respondants
Mild 106
Moderate 354
Severe 283
Very Severe 34
In remission 15

Length of illness
up to 1 year 9
between 1-5 years 179
between 5-20 years 354
over 20 years 247

Age
under 16 13
16-24 71
25-34 107
35-44 169
45-54 173
55-64 158
65-74 94
75-84 7
85+ 0
prefer not to say 2


country of residence
England 647
Northern Ireland 20
Scotland 85
Wales 17
Other 52
(other Scandinavia, Australia, New Zealand, Belgium, Netherlands, USA, Germany, France, Spain, Isle of Man and ex pats

Gender
male 118
Female 682
Prefer my own term 13
Prefer not to say 7

Ethnicity
White 774
Mixed/ multiple ethnic groups 14
Asian/ Asian British 8
Black/ African/ Caribbean/Black British 5
other ethnic group 7
prefer not to say 14

Main means of accessing survey remain - social media/ charity webpages/ charity newsletters

This is a good response level for JLA. It's quality not quantity that matters - this level of response will generate more than 2000 questions - it may be that a single one will be of more significance than a number that are the same, but all are retained and could be used for other purposes - eg campaigns ( ethnic response rate an obvious one from returns)

All data is retained and we have been advised will be made publically available.

eta I did space the original post better but in posting it has lost the formatting - apologies as it is difficult to read the numbers

 

Great, thank you @Amw66