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

[Evergreen]

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

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.

 

[rvallee]

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.

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.

 

[Hutan]

The survey is completely laughable. If proof is still needed that PACE authors don't let good research practice get in the way of producing the outcome they want, this is it.

BTW, anyone can participate in this survey, you don't have to be UK based.

 

[Snowdrop]

It is another one of these questions that have 2 different meanings. We all want specialist ME services but the clinics that already exist are not specialist ME centres. The people who run them have no idea what ME actually is, how it affects patients and what helps.

So we answer Yes but that will be taken to endorse the services that use CBT and GET and where you won't be seen by a doctor who understands ME. So we answer No and it looks like we don't want what every other illness wants.

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.

 

[daftasabrush]

Damn, I just started filling it in with an explanation that I don't support CBT/GET based services, and it said I'd completed when I was half way through writing my comment, and you can't alter your comment.
It seems to be an NHS based survey - it says the data will be stored by the NHS.
I would discourage people from doing what I did, which was to fill in yes, then add a qualifying comment (which got chopped when I hadn't finished). I should have voted no, then added my reason.

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

 

[daftasabrush]

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?

 

[Peter T]

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.

 

[Peter T]

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

(UK)
Survey on the controversial CFS/ME Specialist Services:
(link: https://cfs-me-nhs.onlinesurveys.ac.uk/specialist-services) cfs-me-nhs.onlinesurveys.ac.uk/specialist-ser…

Many think that it might be better if the services didn't exist, at least in their current form with the focus on graded exercise therapy, graded activity-oriented CBT & related approaches.

It was sent out by somebody working in one of the services.
I'm not in a position to answer questions on it.

 

[It's M.E. Linda]

It is another one of these questions that have 2 different meanings. We all want specialist ME services but the clinics that already exist are not specialist ME centres. The people who run them have no idea what ME actually is, how it affects patients and what helps.

So we answer Yes but that will be taken to endorse the services that use CBT and GET and where you won't be seen by a doctor who understands ME. So we answer No and it looks like we don't want what every other illness wants.

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 if 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.

[edit – typo]

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.
.

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:
View attachment 7839

@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.

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.

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?

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.

 

[It's M.E. Linda]

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 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.

 

[rvallee]

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.

 

[Esther12]

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

 

[Jonathan Edwards]

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.

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.

 

[JemPD]

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?

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

 

[large donner]

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

Do you believe that unicorns should be treated nicely?

 

[lunarainbows]

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

 

[Andy]

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

#MEAction UK has written a letter with regards to a survey that states it is to protect specialist CFS/ME services in the UK.

We do not recommend people fill in this survey. It is written in such a way that it could be misused to support the existing treatment paradigm that harms people with ME.

You can read the full survey here without needing to agree to your data being used.

Find the letter we have sent below:

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

 

[Trish]

It will be interesting to see if they get a reply from Hazel O'Dowd.

 

[Arisoned]

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.

 

[Trish]

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

We have now reached our target of 1,000 responses from NHS patients regarding their local services. Therefore the survey is now closed.　

Thank you for your contributions.

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.

Dear Trish,

Thank you for your email, I’m sorry for the delay in replying.

Please can I ask how you heard about the survey?

Best wishes,

Pete Gladwell PhD MCSP
Clinical Specialist Physiotherapist

Team Leader
Bristol CFS/ME Service
North Bristol NHS Trust
...

My reply:

Hi Peter,
I heard about it on an on-line forum for patients, carers and scientists researching ME.
...link to this thread...

You might be interested in a new group, Physios for ME.
...links to their twitter and FB page...

I hope you find the Science for ME forum interesting. We keep up to date with all the research, including some very interesting developments in biomedical research, like this, for example:
... link to Simon M's thread about 'something in the blood' research.

Regards,
Trish

And from him:

Hi Trish,

Thanks for getting back to me. We actually only invited NHS patients to take part, so it is a surprise to find that it is being circulated in forums. I’m wondering if it would be best if I deleted your vote?

Best wishes,

Pete Gladwell PhD MCSP
Clinical Specialist Physiotherapist

And my reply:

Hi Peter,
I am an NHS patient. I have ME/CFS, and have been through my local NHS ME/CFS service in Dorset.
Please do not delete my vote.
Trish

Make of that what you will.