POMME Study: Paediatric Outcome Measure ME, 2020, Crawley et al

https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/index.asp

https://www.ruh.nhs.uk/patients/services/clinical_depts/paediatric_cfs_me/documents/POMME_Study_Info_June 2020.pdf

eta: an apple a day keeps the doctor away?

 

https://tenor.com/view/brexit-politics-british-british-politics-election-gif-15430636

 

TL;DR: they are testing a new questionnaire. The questionnaire is called POMME, because the only actual work they ever do is coming up with acronyms.

The whole thing is a loop, they are still doing the very same things they were doing when they started. People running on treadmills actually cover more real distance, you can at least measure it in centimeters.

 

That's such a lie. Where is the evidence that the BPS approach works for ME? It makes me angry when they call what they do "evidence based".

 

"POMME Study

We are currently undertaking a study to help us measure health in Children with CFS/ME by using a new style questionnaire. Further details are available here."

"POMME: Paediatric Outcome Measure ME

Measuring Health in Children With CFS/ME: Testing a New Questionnaire

A collaboration between the Royal United Hospital Bath (RUH), University College London Hospital (UCL), University of Bristol and the University of Warwick.

This study aims to test a new questionnaire we have developed for young people (aged 8-18) with Chronic Fatigue Syndrome/Myaglic Encephalomyelitis (CFS/ME).

Why are we doing this study?

A good questionnaire can help health professionals and researchers know more about how an illness such as CFS/ME affects a patient, the symptoms, how they feel, what they can do and if they are getting better from treatment.

The questionnaires that are used with young people with CFS/ME at the moment are not designed specifically for them, are too long and miss important questions. This study will test a new questionnaire we have designed in collaboration with young people with CFS/ME.

What will the study involve?

• We would like young people with CFS/ME to complete a new questionnaire.
• We would like to do interviews with some young people to get feedback on the new questionnaire.

The study has two stages:

Stage 1: We will ask 313 young people with CFS/ME to complete the new questionnaire (POMME) to work out which questions we can remove to make it shorter.

Stage 2: We will then check the short-form questionnaire (POMME-SF) works by testing it in a second group of 313 children with CFS/ME at three separate times (when they first come to clinic, then after 2 weeks and after 6 months). We will then check that the new questionnaire can measure change or improvement from treatment."

 

Only 6 months . Perhaps more interesting long term when recovery hasn't materialised as expected ( the magic 2 years beloved of Bath)

 

Interestingly their website states:

"We believe that all clinical care should have an evidence base. We therefore only offer treatment that has been recommended by the National Institute of Health and Care Excellence (NICE). NICE is reviewing its guidance which is now in draft form and users of this service can comment on its findings up until December 22 2020."
​

So if the new NICE guideline no longer recommends GET or CBT, they will no longer use it?

 

I'd guess that they will rebrand with a shiny new acronym.

Because that's what's important.

 

Are these things not copyrighted? New questionnaire, new money.

 

they have already moved on to ACT as an alternative to CBT.
Curious to know how the removal of GET from the guidelines affects FITNET-NHS.
eta: also as the MUS or PPS clinics only use GET/CBT for ME/CFS patients will this mean that ME/CFS will be removed from being classified as MUS?

 

But NICE will likely not recommend ACT, so I suppose they will have to change the wording on their website. Perhaps it will look something like this:

We believe that not all clinical care should have an evidence base. We therefore only offer treatment that has not been recommended by the National Institute of Health and Care Excellence (NICE).