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

[feeb]

Ha! Perhaps they were only looking for the right kind of NHS patients, whoever those may be.

(This NHS patient didn't bother to fill in the survey, nor was I invited to)

 

[NelliePledge]

Shows total lack of understanding of the ME community not expecting it would be shared widely. Shows what the agenda is that they didn’t in fact set it up in the first place to be shared widely. Presumably expecting recent attendees to be more under the impression that the CFS clinics are “a good thing”.

Would be most interesting to see what the 1000 responses have been.

 

[Trish]

Given the call that has reached us today from NICE for information including surveys about the patient experience I suspect they will submit this, providing the survey gives them the answers they want. If not, they will probably bin it.

If you are reading this, Dr Peter Gladwell, I hope you will take note of our criticisms, and bin the survey anyway. It has no scientific validity. I am sure you want to do what is best for people with ME, and carrying out unscientific surveys like this does not instil confidence that you know what you are doing.

 

[Andy]

Lol

We actually only invited NHS patients to take part, so it is a surprise to find that it is being circulated in forums.

What, because the NHS patients he knows can't afford computers or other devices that are able to connect to the internet?

What I would imagine he means is that they tried to carefully target the recipients, in order to receive the answers that they wanted.

 

[rvallee]

I had the same automated response:
From:
Service Survey <ServiceSurvey@nbt.nhs.uk>


I also had some e-mail correspondence with the leader of the survey in reply to my e-mail asking for my vote to be changed to NO, and with my reasons.



My reply:


And from him:


And my reply:


Make of that what you will.

So they clearly intended the survey to be limited to selected patients from fatigue clinics who likely do not have ME.

Cherry-picking and selective reporting are now an accepted norm in order to build a desired outcome. Good grief.

 

[ME/CFS Skeptic]

Seems that this is the survey that might be used at the NICE roundtable on Monday.

David Tuller blogged about it here: https://www.virology.ws/2021/10/15/...atients-attending-cfs-me-specialist-services/

 

[Barry]

@Jonathan Edwards, No doubt you have already seen the info in some of the replies to @dave30th, but just to be sure:



MEA link within James Foulger's tweet https://meassociation.org.uk/2017/0...ps-healthwatch-trafford-survey-17-march-2017/.

Next tweet by Alison's Head also has some links.

 

[Barry]

Seems that this is the survey that might be used at the NICE roundtable on Monday.

It is in fact a very good example of how this bunch exploit every bias they can muster.

 

[JemPD]

All the questionairre shows is that people feel free to say what they like on social media because there is little chance of the people they're complaining about finding a way to punish them for saying so, directly. And that most people, if they do feel safe to say what they like, will tend to give feedback on the more positive side because most people like to be nice.

feedback type surveys are utterly useless unless they are taken anonymously, off site & after a 'cooling off' period.

 

[Jonathan Edwards]

@Jonathan Edwards, No doubt you have already seen the info in some of the replies to @dave30th, but just to be sure:

Yes, I cannot see this have any material impact on Monday other than making its authors appear foolish.