UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

There was a 2.5 year long-term follow-up paper.

Some of the control group did cross-over and try CBT/GET after the trial ended. But they were identifiable and enough data was available to compare those who did cross-over with those who didn't, and there was no difference, meaning adding GET or CBT added no benefit.

See the attached paper for the full details.

 

Some posts have been moved to a new thread:
Annual reviews for ME/CFS

 

@sarahtyson, in the hope that you are continuing to read and take notice of comments on this thread, I would like to draw the attention of your team to this discussion of a team in Australia working on clinical trials and at the same time developing what looks to me like a very good set of tools to track and evaluiate change in the patients to test effectiveness of the treatments.
https://www.s4me.info/threads/open-medicine-foundation-omf.11075/page-23#post-537961
To summarise, they are using FUNCAP, a wearable, and a personalised symptom tracker app. They are also takng multiple biological samples to enable comparison of any biological metrics with the subjective and objective activity and symptom metrics.

 

I've lost track of what's happening in this project. As far as I remember, there have been 3 questionnaires so far, one on symptoms, one that was supposed to be on PEM but mixed it up with all symptoms after activity, and one on function. I think there are supposed to be 2 more. Has anyone heard any news?

 

@sarahtyson can you give us an update? If you don't want to do it here, perhaps ask the MEA to do an update on their website.

 

Can anyone link to the survey, please.

 

And if you say you’ve not received “treatment” since 2021 you’re bumped out.

 

Thanks, here's the introductory page:

Developing a Clinical Assessment Toolkit for People with ME/CFS and Clinical Services. Stage 4: Patient Reported Experience Measure for ME (PREM-ME)

We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS) and have received treatment for their ME since 2021 (ie within the last three years) to complete this online questionnaire. This includes people whose ME/CFS was triggered by a covid infection (i.e. long covid).

This is the 4th stage of a research study to develop a clinical assessment toolkit for ME/CFS. The work is led by Prof Sarah Tyson (University of Manchester), who has ME herself. We are working with people with ME/CFS and clinicians in ME/CFS specialist services to co-produce a series of assessments which will help people with ME/CFS and services in assessment, management and service development. The previous tools have assessed people with ME/CFS’s symptoms, PEM and activity levels. This assessment is a little different as it focusses on the service, rather than the individual patient. It aims to measure ‘patient experience’, or satisfaction with the service. This will be used when patients are discharged. The information provided is important for developing and improving services in the future.

We have devised a draft questionnaire, and the aim of this data collection is to test out it out, to check the questions make sense and produce good quality information. We will also explore how we can make it as short as possible while covering all the issues that are important to people with ME/CFS. If you would like more information about the toolkit project and some frequently asked questions (FAQs) please click here Assessment Toolkit [meassociation.org.uk].

The survey takes about 10 mins to complete in one go, but you can take as long as you want to complete it. Your answers will be saved automatically so you can take breaks and come back to same place when you return. If you need help from another person, or another person to complete the survey on your behalf, that is fine. If you would prefer a paper copy or complete the survey by phone, or if you have any other questions, please contact Sarah on sarah.tyson@manchester.ac.uk.

For further information, the patient information sheet is found here.

Consent (you must select all fields below to proceed)

• I have read the participant information sheet (PIS v4 23rd Jan 2024) and have had opportunity to consider the information and ask questions and had these answered satisfactorily.
  
  
• I understand that my participation is voluntary and that I am free to withdraw at any time without giving a reason and without detriment to myself. I understand that it will not be possible to remove my data. I agree to take part on this basis.
  
  
• I understand that any anonymised data collected may be made available to other researchers.
  
  
• I understand that data collected during the study may be looked at by individuals from The University of Manchester or regulatory authorities, where it is relevant to my taking part in this research. I give permission for these individuals to have access to my data.
  
  
• I agree to take part in this study.

 

I guess most of us won't be eligible to do this one, as we haven't 'received treatment' for our ME/CFS in the NHS in the last 3 years.

Given that there is no treatment for ME/CFS, that means nobody. I gues they mean people who have been to specialist clinics.

 

17. What interventions did you receive? (tick all that apply)
Yes No
Tests (or referrals to another service) for other conditions
Tests to make or confirm the ME/CFS diagnosis
Explanation of the physiological causes and impact of ME/CFS
Explanation of the psychological causes and impact of ME/CFS
Education/ support to find your baseline (i.e. a stable level of activity with few or no symptoms)
Education about how to manage your energy limitations and activity levels (also known as pacing)
Interventions to help you pace: heart rate monitoring
Interventions to help you pace: diary keeping
Interventions to help you pace: symptom-controlled pacing (also known as symptom-contingent pacing or ‘pacing up’)
Interventions to help you pace: Other (Please state)

Cognitive behavioural therapy (CBT) to cure/treat your ME/CFS
Cognitive behavioural therapy (CBT) to help you cope with a chronic disabling condition
Graded exercise/activity therapy (i.e. fixed, regular increases in activity regardless of symptoms)
Other (Please state)