NHS Scotland , Right decision service website.

[Sly Saint]

This is concerning:

ME / CFS Fatigue, Pacing and Breathing supported self management​

NHS GGC​

BACME resources in various languages [CPD?]

Post Viral Fatigue: RCOT & ICS

Conserving your energy practical advice for people during and after Covid19: RCOT & ICS

M.E. and work A5 booklet: Action for ME

Carers Booklet for People with M.E.: Action for ME

All about M.E. Booklet: Action for ME

Pacing leaflet for patients: Live well with pain website

Managing Fatigue: Versus arthritis website

Breathing exercises for relaxation and stress management: NHS Inform

The AfME All about ME Booklet linked to is pre new NICE guidelines (2011)

ME / CFS Fatigue, Pacing and Breathing supported self management | Right Decisions

www.rightdecisions.scot.nhs.uk

All about M.E. Booklet: Action for ME

What is Cognitive Behavioural Therapy (CBT)? CBT is used to support people through a variety of chronic illnesses, helping them to adjust to some of the consequences of being unwell. It can help people to identify, understand and modify any views and behaviours which impact on their illness eg. a tendency to overdo it, or being unable to say ‘no.’ Its use does not imply that the cause of the illness is psychological. CBT can help you to find ways to cope with issues such as demoralisation, frustration, guilt, anxiety, panic and depression, and to feel more in control of the illness. CBT may help with practical issues such as: managing energy and activity, setting up a sleep routine, dealing with reactions or attitudes to M.E. that can slow recovery, goal setting, psychological support, achieving improved physical functioning.
For CBT to be effective the therapist should have a sound knowledge of M.E., be appropriately trained and be able to work with you in a collaborative and f lexible way.

What is Graded Exercise Therapy (GET) The National Institute for Health and Clinical Excellence (NICE) defines Graded Exercise Therapy (GET) as: “An evidence-based approach to CFS/M.E. that involves physical assessment, mutually negotiated goal-setting and education.” It says: “The first step is to set a sustainable baseline of physical activity, then the duration of the activity is gradually increased in a planned way that is tailored to the person. “This is followed by an increase in intensity, when the person is able, taking into account their preferences and objectives, current activity and sleep patterns, setbacks/relapses and emotional factors. “The objective is to improve the person’s CFS/M.E. symptoms and functioning, aiming towards recovery.” Some researchers and clinicians believe that inactivity and the resulting loss of physical strength and fitness (deconditioning) may be a factor for some people with M.E. GET seeks to reverse this deconditioning effect. Do CBT or GET help?

The PACE trial found that adults with CFS/M.E. who were well enough to participate in its study (ie. not housebound or bedbound) showed moderate improvements in fatigue and physical function following 52 weeks of standard medical care plus CBT or GET. The proportion of participants rating themselves as “much” or “very much” better in each case was 41%.39 The trial concluded that GET is safe with few adverse effects. However, surveys carried out by Action for M.E. and other patient groups suggest that graded exercise may be harmful if it is delivered inappropriately (see p 41). The National Institute for Health and Clinical Excellence (NICE) says CBT and GET should be delivered: “by a suitably trained CBT/GET therapist with experience in CFS/M.E., under appropriate clinical supervision; one-to-one if possible.” People with M.E. who wish to try GET should ask to be referred to a specialist CFS/M.E. clinic, where this expertise exists, if at all possible. Details of clinics are available in our online directory, or by calling us on 0845 123 2380. There have been no published randomised controlled trials of CBT or GET in children or the more severely affected.

What about Graded Activity Therapy (GAT)? Graded Activity Therapy (GAT) is a person-centred approach to managing a person’s symptoms by using activity. Activities are selected, adapted and graded for therapeutic purposes to promote health and well-being. Therapy is goal-directed and uses activity analysis and graded activity to enable people to improve, evaluate, restore and/or maintain their function and wellbeing in self-care, work and leisure. There have been no published randomised controlled trials of GAT. In our 2010 survey of physical rehabilitation therapies, 39% reported an improvement after GAT, while 26% said that they were worse. Please note Specialist services may not refer to CBT, GET, GAT or pacing but to fatigue, energy or condition management. They may draw on elements of CBT, GET, GAT and/or pacing in programmes which focus on learning how to relax/rest, respond to demand/stress, grade and manage activities, control symptoms, consider the impact of different factors eg. diet/sleep on energy, deal with relapse, come to terms with M.E. etc.

 

[Trish]

The website seems to be just a central site for any clinic in Scotland to make accessible whatever resources they want to. The one Sly Saint has copied is here:
ME / CFS Fatigue, Pacing and Breathing supported self management

The source information is given as:

NHS Greater Glasgow and Clyde
Last reviewed:
28/06/2024

Next review date:
30/11/2025

Author(s):
Karen Glass.

Approved By:
MSK Physiotherapy Extended Management Team

Reviewer name(s):
Louise Ross, Alison Baird.

 

[Amw66]

The website seems to be just a central site for any clinic in Scotland to make accessible whatever resources they want to. The one Sly Saint has copied is here:
ME / CFS Fatigue, Pacing and Breathing supported self management

The source information is given as:

NHS Greater Glasgow and Clyde
Last reviewed:
28/06/2024

Next review date:
30/11/2025

Author(s):
Karen Glass.

Approved By:
MSK Physiotherapy Extended Management Team

Reviewer name(s):
Louise Ross, Alison Baird.

Greater Glasgow and Clyde run support services out of the old homeopathic hospital which includes LP .

 

[Sly Saint]

If there is anyone connected to AfME or even #MEAction Scotland, someone should point out that all the AfME booklets recommended on that site are from 2010/2011 , way out of date and not compliant with the new guidelines.

ETA: and the pacing booklet for people with pain, shouldn't be there either, as it's the old 'boom and bust' stuff.