Action for M.E.'s big survey, 2019

Andy

Andy

Retired committee member
Action for M.E. is following-up its major 2014 survey, 'M.E. Time to Deliver' by looking, five years on, at health, welfare, employment and education for children and adults with M.E. Our 2014 survey helped shape our priorities with the results being used in our policy work.

We would be enormously grateful if you could take the time and energy to complete this survey. We will use the results of this survey to inform our future policy and campaigning work, and hope to share our findings in the Autumn. The results of this survey will also help inform our next five year strategy.

IMPORTANT: This a very long survey, with around 50 questions, so please pace yourself and take your time. If you would like to ask a carer, friend or family member to help you complete it, please do so. If you are unable to finish it, or would only like to fill in certain sections, that’s absolutely fine – any information you can share with us is valuable.

There is a progress bar at the top of each page, showing how many pages you have got through. If you want to take a break at any point, Survey Monkey will remember where you are up to when you return. The deadline for completing the survey is Friday 2 August 2019.

You can choose to remain anonymous, or share your contact details at the end if you are happy for us to possibly follow-up on the information you give us. The details you share with us will NOT be shared outside Action for M.E. in a way that means you can be identified, unless you give us your permission at the end of the survey to be part of a case study. All information will be stored in line with our privacy policy which can be found on our website.

If you would prefer to complete a paper copy of this survey, please email us at policy@actionforme.org.uk
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https://www.surveymonkey.co.uk/r/afmebigsurvey

Just to highlight this bit
IMPORTANT: This a very long survey, with around 50 questions, so please pace yourself and take your time. If you would like to ask a carer, friend or family member to help you complete it, please do so. If you are unable to finish it, or would only like to fill in certain sections, that’s absolutely fine – any information you can share with us is valuable.
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So Action for ME, a charity that are meant to represent pwME, have created a survey with so many questions that they put a warning on it that it might be too much for pwME to complete. Something seems wrong with that idea to me (and not just for AfME, any charity that does this is doing it wrong - if it needs that many questions then have multiple, shorter surveys).
 
While they are getting there, they still don't quite get the idea of PEM
8. Post-exertional malaise is a fundamental element of M.E./CFS. It has been described as, "delayed and prolonged worsening of symptoms and loss of stamina after physical, cognitive or emotional activity leading to a reduction in functional ability."

Do you experience a worsening of symptoms after you have undertaken mental or physical activity?
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No mention of an exertion limit, so of the possible answers
Yes, always
Yes, usually
Yes, sometimes
Not very often
Never
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if I was being truthful and answering the letter of their question then I would answer "Yes, sometimes". If I was answering how their question should have been asked i.e. "Do you experience PEM after you have undertaken too much mental or physical activity?" then I would be answering one or the other of the first two answers.
 
Andy said:
https://www.surveymonkey.co.uk/r/afmebigsurvey

Just to highlight this bit

So Action for ME, a charity that are meant to represent pwME, have created a survey with so many questions that they put a warning on it that it might be too much for pwME to complete. Something seems wrong with that idea to me (and not just for AfME, any charity that does this is doing it wrong - if it needs that many questions then have multiple, shorter surveys).
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There can be good reasons to doing a single longer questionnaire. eg: If it was multiple shorter surveys then we wouldn't be able to say that certain answers to question 3 correlate with certain response to question 20.

I've not looked at this questionnaire so don't know if that might be an issue.

Can't you save your answers half way through with survey monkey?

Looks like there's an option to do this (https://help.surveymonkey.com/articles/en_US/kb/Can-a-survey-be-saved-halfway-and-finished-later) but I don't know if AfME used it.
 
Esther12 said:
There can be good reasons to doing a single longer questionnaire. eg: If it was multiple shorter surveys then we wouldn't be able to say that certain answers to question 3 correlate with certain response to question 20.
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Then lets hope that they realise, and take into account, that their survey design excludes more seriously affected patients.

Esther12 said:
Can't you save your answers half way through with survey monkey?
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No, that isn't possible with this survey.
 
Andy said:
https://www.surveymonkey.co.uk/r/afmebigsurvey

Just to highlight this bit

So Action for ME, a charity that are meant to represent pwME, have created a survey with so many questions that they put a warning on it that it might be too much for pwME to complete. Something seems wrong with that idea to me (and not just for AfME, any charity that does this is doing it wrong - if it needs that many questions then have multiple, shorter surveys).
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Unfortunately surveymonkey does not let you save and return to a survey- a method where you could do this would have been ideal as you could have broken it down into sections and done a bit at a time. I suppose a more complex interface would have been expensive to set up?
ETA hadn't read full thread re option for this - apologies
 
Caution - I may be a little grumpy right now.


So they've deliberately chosen a survey platform that doesn't meet a basic requirement of PwME, the ability to stop and pick up later when able.

They've deliberately, presumably, designed a survey that even with their apparently very limited understanding of ME they feel the need to warn people about the length.

Over the years it's become apparent to me that they know nothing about ME, care less, and whatever the original aims of the 'charity' they are not on 'my' side, that they are completely incapable of being so.

They're an organisation that I'd not trust to know what I had for breakfast as I have no confidence this information wouldn't be sold to the DWP.

They're an organisation that feels no need to answer basic questions, by PwME, about their own policies and literature.

So yep - I'm going to do their survey, shortly after the next ice age.
 
@Andy, Just took a look at the first page and it says this there:

There is a progress bar at the top of each page, showing how many pages you have got through. If you want to take a break at any point, Survey Monkey will remember where you are up to when you return.
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Might give it a try later and report back if it takes you back to where you're up to, but not right now as struggling already today.
 
The survey done in 2014
https://www.actionforme.org.uk/uploads/pdfs/me-time-to-deliver-survey-report.pdf

based on the results of that survey
Action for M.E. will:
• develop a shared resource for patients who are newly diagnosed, their family/friends and health professionals to help them better understand the illness
• develop and deliver our Inform M.E. programme of work to raise awareness, understanding and build capacity with health and social care professionals; this will include developing specific resources and delivering webinars in Scotland in 2014-16 as part of a Scottish Government-funded pilot project
• explore working with primary health practitioners in other parts of the UK to help meet the needs identified by GPs and patients and ensure that appropriate information is available at a time that it is needed.
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Patients also reported, overall, finding GET less helpful than in 2008 (45% then compared to 35% now). This may be because a number of people with M.E./CFS are self-prescribing GET, rather than working with a specialist therapist (see p 16). However, it is unlikely that this accounts for every negative experience.
We continue to hear positive and negative experiences of GET from people with M.E./CFS, including those who tell us that GET caused them harm. We recognise that further investigation is needed to find why it may benefit some people and not others.
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Action for M.E. will:
• host a number of roundtable meetings with clinicians and researchers to discuss the data on specialist services and treatment/management approaches, asking them what it can tell us, what stands out for them, and if it can help shape hypotheses for future research.
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that worked well.
maybe sort out existing problems first?
 
arewenearlythereyet said:
As a designer of these sort of things (marketing surveys) if it takes more than 12 min to complete it’s too long ..end of ...I’ll time myself and report back. 40 questions seems on the long side.

I also have the same disquiet as @Wonko so will not be giving my contact details.
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Ok

Just completed it...it took 22 minutes and I didn’t need a break. I filled in some of the sections on GET and employment reasonably well, but there were sections I didn’t have to fill in because I wasn’t under 21 or claiming universal credit etc. If you had to fill these in it would take 5-10 min more.

I’m mild/moderate so I would imagine that others will take longer ...this is too long imo with too many verbatim sections. They could shorten it quite easily to be in a 10 min window and attract more respondents.

I chose not to donate or be a volunteer at the end :p
 
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Another cause for disquiet. It's a membership and fundraising project in disguise until you get to the end and it invites you to tick boxes if you'd like to fundraise for AfME, join their forums etc etc. and please give us your details.
Completely inappropriate on a health survey.
 
Here it is, for reference.
70% MODERATELY AFFECTED
Mild symptoms at rest, worsened to severe by physical or mental activity. Daily activity. limited. Part time study at school/college is very tiring, and may be restricting social life. Part time work may be possible for a few hours in the day. With careful pacing of activities and rest periods, you may discover windows of time during the day when you feel significantly better. Gentle walking or swimming can be beneficial.
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30% SEVERELY AFFECTED
Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally take a quiet wheelchair ride or very short, gentle walk in the fresh air. Most of the day resting. Very small tasks possible but mental concentration poor and home study difficult.
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I will not participate in this survey because @Action for M.E. has shown to twist results and thus harm pwME. I simply don't trust them.

This made me angry:
Patients also reported, overall, finding GET less helpful than in 2008 (45% then compared to 35% now). This may be because a number of people with M.E./CFS are self-prescribing GET, rather than working with a specialist therapist (see p 16).
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Sure, a "specialist" will be the salvation. Or a psychotherapist. Or a priest.
Those dumb peasants!

We continue to hear positive and negative experiences of GET from people with M.E./CFS, including those who tell us that GET caused them harm.
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Given the existence of great diagnostic criteria like Oxford or Fukuda, it is not surprising to find non-ME people who might find GET great. pwME won't find it great.
 
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adambeyoncelowe said:
Here it is, for reference.
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I think a non understanding of PEM underlies this.
My daughter on this scale is 25-30.
On a good day, yes she could potentially walk with a cane to the top of our road and back, resting en route ( the road is approx 70- 80 m to top).
She would then not be able to do much else for the rest pf the day, and for the next 1-3 days not do very much at all.
 
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