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

The results of this one-question survey could be used similarly to how Action for ME’s 2011 survey was used by White et al in their 2017 response to Geraghty’s 2016 commentary (see the Journal of Health Psychology’s special issue on the PACE trial for both):

Hazel O’ Dowd was a co-author of the White et al response. Andy mentioned above that the survey said to contact Hazel O’ Dowd with questions. I don’t see her name on the survey now. The survey now says:

Edit: As @Andy points out below, Hazel O' Dowd's name is in the linked "survey contact details" on the bottom right of the survey. What I quoted above is from page 1 of the survey. I did not know about the link to survey contact details at the time!

There’s an error in the survey. It states:

But question 3 is “Name”. It should read question 2.

Edited to improve formatting.

 

Should we try to promote the survey, so that UK patients in the online community get a say as well?

Made a screenshot of the question, just in case someone in the future would find it hard to believe it was really that biased:

 

Code:

https://twitter.com/s4me_info/status/1154297328897089536?s=20

https://twitter.com/user/status/1154297328897089536

Code:

https://www.facebook.com/sci4me/posts/877755435944200

 

I have answered "No" in this "survey" (inverted commas are essential). In the box provided for text, I have written the following:

OF COURSE, all sick people should have APPROPRIATE services. On the other hand, I believe that people with ME should approach the existing NHS so-called “CFS/ME Specialist Centres" with suspicion. Personally, I would not go near one.

What is this “adults and children” business? What about “people”? If you want to subdivide your “survey”, you need ask something about each of your categories, i.e. adults and children.

There is no such illness as "CFS/ME" which is a contrived, catch-all construct based on fancy and dogma. It is used to attempt to lump together anyone and everyone having persistent fatigue, but, as yet, no identified biomarker. Your “specialist” centres are based on this same pseudo-reasoning.

This is a non-survey, patently loaded to lull the unwary into giving answers that will, no doubt, be twisted to support the nonsense known as the current NICE guidelines on "CFS/ME”. If this is your idea of “research”, you are clearly incompetent, at the very best.

You need to withdraw your “survey”.

By the way, who are you?

 

Sorry, I should have explained further. To see her name you need to click on "survey contact details" at the bottom of the page, which is this link, https://cfs-me-nhs.onlinesurveys.ac.uk/specialist-services/contact

 

Obviously it would be good to have specialist ME services. Unfortunately those are not actual specialist services. They are, in fact, literally the opposite of specialist ME services. There is not much functional difference with Tarot services or water sourcing services.

This is getting beyond absurd. Using such loaded questions they would be right at place in a political "poll" meant to harvest emails for donations. "Do you support candidate A's job-killing policies or candidate B's magical rainbow super fun time policies?"

This BS has no place in medicine. It is not the work of serious people who understand the weight of their responsibilities.

 

Oh yeah that will do it.

They're aware we have object permanence, right? No, apparently not.

 

Email has changed but the name is still there.

 

@Despite ME

Great response to this so-called survey.


Agree with all who said these are not ME specialists.

Wish my vote counted for this cooked survey. I wonder if the no votes will be discarded. I would hope not, but who knows what shenanigans could transpire.

Not my place to say, as I'm not in the UK, but letters of concern to the email address
noted may help get the point across.

I would think this "survey" could also be used in the NICE guidelines review.

 

https://m.facebook.com/TMEPFUK/?refid=7&__tn__=C-R

Can't work or how to embed it but the above is a link to The ME Patient Foundation thoughts in the matter, which seems to be not to respond.

 

Thanks @Snowflake .

 

Personally I think the problem with that approach is that if only a few dissenting voices are registered, then it becomes something that O'Dowd can point to as showing overwhelming patient support i.e. if it, hypothetically, only received 10 responses but 8 of them were positive, then 80% of patients support the clinics! Far better 200 responses and the majority be negative.

 

Yeah, I understand that view. The counter is, I suppose, that if there are lots of no responses and the comments are ignored then do we end up with funding being pulled from the service? Is nothing better or worse than what is currently available. Of course I agree that the best outcome is a service that isn't GET and CBT based! I don't know what the best thing to do is...

 

Thanks. I have saved this.

 

With much uncertainty I participated answering ‘no’ and adding the comment