United Kingdom: Nottingham ME/CFS Service

[InitialConditions]

Copied post. This thread has been created to discuss the Nottingham service and their online materials.

"The clinical leader of the Nottingham ME/CFS service, managed by @pics_primary has written to Forward-ME thanking us for highlighting the out-of-date information on their website, and advising that they have immediately removed it."

There are some issues with this that I've flagged with FME. They've done the bare minimum and the webpage still needs lots of work.

Do we have a thread here where we have discussed the material on ME/CFS services' websites (and any literature they distribute to patients)? I'm sure we've discussed it, but I can't find anything.

 

[Hutan]

It looks like the service has recently invested further in the idea of exercise being part of the rehabilitation of Chronic Fatigue Syndrome. Their team to deal with CFS seems to consist largely of physios, occupational therapists, rehabilitation exercise practitioners and pain clinicians. So, it's not surprising that they aren't leaping to embrace the new NICE Guideline.

job ad
Rehabilitation and Exercise Practitioner
Employer:
Nottingham CityCare Partnership CIC
Department:
Mosaic
Location:
Nottingham

We are excited to be able to offer a full-time or part time positions for a Rehabilitation and Exercise Practitioner (REP) within our MOSAIC (Musculoskeletal Orthopaedic Spinal pain And Integrated Chronic fatigue syndrome) team. MOSAIC is a large, friendly and innovative team of physiotherapists, occupational therapists, rehabilitation exercise practitioners, pain practitioners, clinical pharmacists and pain consultants.

https://www.jobs.nhs.uk/xi/vacancy/916908493

 

[Hutan]

"The clinical leader of the Nottingham ME/CFS service, managed by @pics_primary has written to Forward-ME thanking us for highlighting the out-of-date information on their website, and advising that they have immediately removed it."

This pdf is what comes up when I google Nottingham ME/CFS service:
https://picsnhs.org.uk/wp-content/uploads/2019/09/PICS-Community-CFS-ME-leaflet.pdf
It's titled 'Community Chronic Fatigue Syndrome/ME Pathway' and has a pics label.

CFS/ME is mostly fatigue

The main symptoms of CFS/ME are persistent, profound physical and mental fatigue.

There are treatment options

We aim to help you increase your knowledge of CFS/ME and discuss treatment options.

A biopsychosocial approach (they don't seem to have twigged that many patients understand this to say 'we have an outdated understanding of what ME/CFS is').

We adopt a biopsychosocial approach and encourage the use of self-management strategies. At the end of the appointment we will agree a treatment plan.

Clearly, no staff capable of properly diagnosing ME/CFS and alternative explanations for the symptoms, and there's no intention to try.

Diagnosis will have been made in most cases by your GP. We do not offer any further investigations. Following assessment you may be offered the option of a group or individual treatment programme.

Service offerings are out of date and likely to be both harmful and patronising

The programmes include both information and practical sessions covering the following topics:
Understanding CFS/ME
Activity Management
Quality Rest
Graded Exercise Therapy
Stress Management
Cognitive Behavioural Therapy
Memory and Concentration
Understanding long term Pain
Sleep
Diet
Communication

 

[Kitty]

Local ME patients know it's to be avoided like the plague, and some GPs do too. My previous doctor, now sadly long retired, warned me two decades ago that the clinic (in its previous incarnation) mainly offered exercise classes, and someone recently moved to the area mentioned in a WhatsApp round-robin that her new GP had said the clinic wasn't well regarded by patients. Obviously they haven't completely run out of customers, though, otherwise it'd have been discontinued.

For now, you might argue that the web page is more useful to ME patients as it stands, because it warns them about the underlying philosophy at the clinic. It's this that needs changing.