On line ‘survey’ re UK CFS/ME specialist services

I see it now! Sorry about that. I've put an edit in my original post so hopefully people will see that. If I hadn't been so brainfogged I would have noticed the difference in wording.

 

I think that commenting that the survey is completely unprofessional and the existing clinics a bunch of pseudoscience nonsense is the best course. Leading questions have no place in health care. But not responding will definitely skew towards people with vague "fatigue" who have been directed by people to answer with expectation that they would say yes, better than nothing.

There are stupid questions. This is one, best to point it out.

 

I see it as exactly that. It's disingenuous and is done in a way that is a win /win for the surveyors and not the patients.

 

Complete it again with no and it should recognize your response as a duplicate and bin both

 

FYI: It also violates research ethics and I can't see how it could have been approved with no info on ethics approved or background

It violates the online survey terms and conditions :

2.2 states only for personal or consumer use, so not for use by government agencies or health services

Also you must consent before you know what the survey is about, there's no description before that, meaning it's not compliant with the Data Protection Act

How do people become aware of this survey?

Had anyone at Bath / Bristol been asked to fill it out?

Could it just have been found be accident, and O'Dowd only entered one question to test it, and is still in the free trial period of 30 days?

 

I found it on a Facebook page, it was an ME page that shared it with reservations, however looking back at the various pages that have it posted I can’t workout where I first saw it.

 

I have found where I saw it first, Tom Kindlon’s ME CFS & related page: News, News Research and more. He posted it at ‘Yesterday 16:05’. @daftasabrush, do you think it is worth asking him his source, he is a member here ( @Tom Kindlon ).

He said

 

EDIT: (to actually add my comment) @Jonathan Edwards I hope you are aware of this ‘Survey’ which may be used as ‘evidence’ that CFS patients love the clinics.

I would want the NICE ME/CFS Guidelines Committee to be fully aware of the various faults with this survey, as seen above in these eloquent comments by SfME colleagues.

The lay (Expert by Experience) members of the committee are aware but are you able to ensure please that ME friendly committee members are also well aware of the facts behind this survey? Thank you.

 

I found out about the survey, only by accident, last week through a local support group. Despite having many members who would still be using Bristol/Bath and associated clinics, *not all of them* received the survey.

One member received it in May (the closing date is September) and a Private FB group discussed it in June.

 

So it was selectively sent out to get a positive response?

Of course it was.

 

This survey looks ridiculous. I would love it if these people no longer had any influence over my life.

 

Yes, it is a complete joke. Totally unprofessional. I doubt it will be mentioned at the NICE committee. Even those who favour current policy are unlikely to want to admit to taking any notice of it.

 

Never mind the 'like' button, we need a 'love' button.
Fabulous response @Despite ME

 

This survey is about as nonsensical as going into a primary school and asking:

Do you believe that unicorns should be treated nicely?

 

My mum filled out that survey a week ago I think. We knew the point of contact for these surveys was someone related to PACE somehow. These were her answers

-Do you think that adults and children with Chronic Fatigue Syndrome or ME (CFS/ME) should have access to specialist NHS services for assessment and treatment?
No

-If you want to say anything else, please add some free text below
GET and CBT are not “specialist services”. Maybe you should look into how the Institute of Medicine in the US has removed GET from their treatments. What are you trying to do? You’ve already ruined our lives with your specialist services so are you trying to ruin others lives as well?

my mum gets angry easily

 

MEAction UK are recommending not completing the survey, something I don't agree with.

www.meaction.net/2019/08/05/a-petition-cloaked-in-the-respectability-of-research

 

I have emailed ServiceSurvey@nbt.nhs.uk and asked them to remove my answer and confirm that they have done so. They have done this. I have had an email this morning confirming that they had 1000 responses and the survey is closed so maybe they were anticipating more? Worth a try.