A petition cloaked in the respectability of research

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#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:

Dear Hazel O’Dowd,

We are writing in relation to the survey about specialist CFS/ME services currently available at this URL: https://cfs-me-nhs.onlinesurveys.ac.uk/specialist-services

The very first sentence in the survey works to bias all respondents, stating “Thank you for taking part in our survey to protect specialist CFS/ME services.”

Without explaining what the survey will involve (how many questions, how long it takes to complete, a basic description of what the questions are about) respondents are then asked to agree to their personal data being kept by the NHS. This doesn’t appear to comply with the  GDPR legislation.

The ICO guide to data protection states under ‘Asking for consent’:

  • We name our organisation and any third party controllers who will be relying on the consent.
  • We tell individuals they can withdraw their consent.

We assume this survey is being distributed by North Bristol NHS Trust, as per the contact email address given. However, this is not stated anywhere, nor is the department at NBT conducting this survey named. It also does not state that people can withdraw their consent.

On page 2 the survey states:

“Research shows that adults and children with CFS/ME are more likely to improve with specialist treatment.

We believe that adults and children with Chronic Fatigue Syndrome or ME (CFS/ME) should have a choice and be able to access specialist NHS services if they want this.”

It does not explain who “we” is and once again immediately biases any responses.

The question then asks: “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?”

Of course people with ME deserve access to specialist services, as does anyone with a chronic illness. However this closed question blocks any distinction. This is gravely needed in a system that is currently perpetuating harm against people with ME, demonstrated most recently by the Forward ME Group survey. There is no way to answer this question that doesn’t potentially put people with ME in further harm’s way.

The first sentence states the aim of the survey is to “protect specialist CFS/ME services”. Yet it would be misleading and unethical if the intention is to suggest that a positive response to this question means that the respondent is in favour of protecting current CFS/ME specialist services. There is nothing in the question wording to suggest this conclusion.

We believe this survey should be withdrawn immediately, and the data so far collected deleted.

Pease let us know how you will be addressing our concerns and those of the wider ME community.

Regards,

Sian Leary

On behalf of #MEAction UK

 

 

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