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

Robert 1973 said:
What an apparently devious and deceitful survey – in keeping with everything we’ve come to expect from the PACE authors and their supporters. It would be interesting to know where/how it is being promoted.

I hope that the charities will bring this survey to the attention of their members and advise them how to complete it is they do not wish to endorse the NHS CFS clinics which promote GET and PACE-type CBT as effective treatments for ME. @Russell Fleming @EspeMor @Action for M.E.

Like others, I’ve answered “no” and explained that the current “specialist NHS services” which promote GET and PACE-type CBT are totally inadequate and inappropriate, and that I would like people with ME to have access to appropriate physician-led specialised NHS services instead.

I suspect this survey will only be used if it produces the desired result. I suggest that we request to see the results if they are not published.
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From what I’ve seen before AFME and MEA would actually most likely encourage people to say Yes with the argument whatever the service currently provides it’s better to have a specialist service than nothing specifically for ME patients as it’s easier to change something that exists than set up something new. This isn’t my view.
 
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):

We reject the accusation that our ‘actions have arguably caused distress to patients’, for which Dr Geraghty offers no evidence. People with CFS and/or myalgic encephalomyelitis (ME) want treatments that help them to improve (Action for ME, 2011). In this ME charity member survey of National Health Service (NHS) clinics, 85 per cent of those surveyed wanted the charity to campaign to save these services and 92 per cent wanted more such services;
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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:

If you have any questions, please contact: Servicesurvey@nbt.nhs.uk
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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:

The number of responses to this survey and the data you provide in Question 3 may be provided to the NHS or other bodies responsible for providing services.
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But question 3 is “Name”. It should read question 2.

Edited to improve formatting.
 
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Trish said:
They are probably asking all their patient to fill in the survey - which will bias it towards those who have only got as far as being pleased to have a diagnosis and be apparently being taken seriously, and not the ones who have dropped out because it was useless or making them sicker.
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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:
upload_2019-7-25_14-3-23.png
 
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?
 
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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.
 
@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.
 
ringding said:
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.
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MEPF advises against completing the questionnaire/survey above for the following reasons:

· The original point of contact for this survey was given as Hazel O’Dowd, a PACE author (her name has since been removed), and the questionnaire seems designed to promote the treatment methods, CBT and GET, currently practiced by ME/CFS clinics and promoted by the PACE researchers.

· The survey/questionnaire is poorly designed: it comprises a single question skewed towards providing a positive answer in favour of CFS clinics. Moreover, insufficient time is given to provide an explanation regarding a yes or no response.

· The timing of the questionnaire’s release appears conspicuous given NICE is currently reviewing treatment options for ME patients.

MEPF therefore recommends that to minimise the possibility of patients’ views towards ME/CFS clinics being misconstrued this shoddily designed questionnaire be ignored.
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ringding said:
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.
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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...
 
With much uncertainty I participated answering ‘no’ and adding the comment

Although I agree there is a need for specialist assessment, management and advice services available for people with ME/CFS under in house medical supervision, the current so called specialist ME/CFS services in the UK are not this, they are technicians providing primarily GET and CBT that have been demonstrated to be harmful for some and ineffective for most if not all.
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