What is ME/CFS?
Myalgic Encephalomyelitis or Chronic Fatigue Syndrome is a long term condition involving multiple symptoms, the most common being extreme tiredness or fatigue.
The NHS Website has good, clear information on what ME/CFS is:
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) – NHS (www.nhs.uk)
How does ME/CFS get diagnosed?
There is currently no test which can diagnose ME/CFS, often it is important to complete tests to rule out other causes of fatigue. If these all return as normal GP’s will often determine a diagnosis of ME/CFS.
The NICE Guidelines for ME/CFS can support you or your GP to further your understanding of the condition and provide information on confirming a diagnosis.
Other Long-Term Conditions and their link with ME/CFS
Fibromyalgia
We regularly have patients attending the service who have also been diagnosed with Fibromyalgia, there are multiple similarities between the two conditions which can make it difficult to determine which condition is causing the symptoms.
We generally try to differentiate those patients whose main symptom is pain, will probably benefit more from a referral to the Pain Service please see their website:
Whereas patients who report fatigue as their main symptom are more likely to benefit from attending our service.
Other Long-Term Health Conditions
With other long term health conditions such as Post Sepsis Syndrome, Multiple Sclerosis (MS), Functional Neurological Disorder (FND), Ehlers Danlos etc we strongly advise you request a referral to specific services that can support these conditions. However, if fatigue is the main overarching symptom and you are able to participate in fatigue management education then we may be the right service for you.
ME/CFS Service
Referral
The ME/CFS Service requires a GP referral. Further information can be found on the Information for Referrers drop down.
ME/CFS Service Journey
Journey through the service
To be referred to the ME/CFS service we require you to have received a diagnosis of ME/CFS from your GP.
The referral form submitted by your GP will be reviewed in a triage process to ensure correct tests have been completed and determine if we can accept the referral. If the referral form is incomplete it will be rejected and returned to your GP to complete. If accepted you will receive a letter confirming acceptance and a phone call from one of our Health Navigators explaining what happens next.
Depending on your condition, past medical history and other factors you will either be placed on a waiting list for a 1:1 appointment with a Fatigue Practitioner or our online Managing Fatigue to Live Well groups.
What to expect?
Please be mindful that our emails often end up in the junk mailbox and all calls will be from a withheld number. If you are expecting communication from us, please check your junk mail.
Initial Assessment
Your initial assessment will be a 1-hour appointment with a Fatigue Practitioner, this will most likely be via video consultation, unless you have requested otherwise. You will be sent a link to your email address at the time of your appointment.
You may attend your initial assessment before or after attending the groups.
Prior to your initial assessment we will ask you to complete a questionnaire and return it to the service either via post or email.
At the end of your appointment the practitioner will set a plan for moving forward with our service. They will also send a summary of this appointment to your GP.
Managing Fatigue to Live Well Online Group Sessions
We offer 4 online group sessions which aim to support people to manage their fatigue to live well. They run consecutively on the same day each week usually at 10:30am via Microsoft Teams – you will be informed of the dates and times when you have been booked onto the course. Please aim to arrive 5-10 minutes early.
You will be sent a link to your email address for the groups the day before, you do not need to have a Microsoft teams account to attend the groups. If you have not received an email, please check your junk mailbox.
If you are unable to attend the group, you must inform us prior to the sessions. If you are having difficulties logging on to the meeting, please call the service number and ask for support.
You will be sent 4 handouts with information covered in the groups and the presentation slides via email prior to attending. If you require these in paper format, please let us know.
The layout of the groups are as follows:
- Group 1 – Fatigue and associated symptoms, dysregulation, activity diaries and pacing.
- Group 2 – Living at a baseline, effective rest and stress.
- Group 3 – Cognitive Difficulties and sleep.
- Group 4 – Altered breathing patterns, communication and setbacks and next steps.
After you have attended all 4 groups you will then be placed on a 12 week open appointment. This means you have 12 weeks to contact us to inform us if you would like any further support from the service. If we do not hear from you in this time, you will be discharged.
After attending all groups, you can request to attend 1:1 sessions with a Fatigue Practitioner. If you request 1:1 appointments you will then be contacted by a Health Navigator to organise some activity diary support.
Once you have completed your allocated sessions, and with agreement between you and your practitioner, you will then be discharged.
1:1 Follow Up Sessions
These sessions aim to apply the self-management strategies and information covered in the workshops, to your individual life.
This is an opt in option, you must inform us, via email, after completion of the groups if you would like to have 1:1 sessions. You will then be placed on the waiting list. If we do not hear from you 12 weeks after your last group, we will discharge you.
Follow up sessions are approximately 45 mins – 1 hour long. They are generally carried out via video consultation, the link sent to you at the time of your appointment via email or text.
If you are unable to attend your appointment, you must let us know. If you do not attend your appointment without informing us, we will contact you via post or email. If we do not hear from you within 2 weeks, we will discharge you from the service. If you do not attend 2 consecutive appointments without informing us 48 hours prior to the appointment, we will discharge you.
It is important you feel you are currently in a place to manage behaviour change or inputting self-management strategies into your life. Not everyone will be ready at the same time and it may be sensible to wait until you are in a position to manage this before attending the service.
Activity Diary Support
If you request 1:1’s you will then be provided with some activity diary support sessions with a Health Navigator to ensure you are using the activity diaries correctly prior to your 1:1.
Employment Workshops
We provide a one off, online employment workshop for anyone living with ME/CFS trying to return to, or maintain employed work.
The workshop runs approximately every 6 weeks on a Wednesday at 10:30. The information is aimed at people who are currently employed by someone else, but some of the information may be of value to someone who is currently self-employed.
You will be informed how to attend the workshop during the fatigue management groups.
Peer Support Group
Peer Support groups provide a space for you to join with other people living with ME/CFS to share your experiences and provide advice and support to one another.
They are facilitated by a member of our team and are offered at differing times of the day.
You will be informed about how to attend these groups during the fatigue management group sessions. If you would like more information please enquire about Peer Support via the email address CFSME@somersetft.nhs.uk or mecfspeersupportgroup@somersetft.nhs.uk
Information for Referrers
If you have a patient who you believe to have ME/CFS please refer them to our service using this referral form.
We are not a diagnosis service and therefore require you as the primary care practitioner to have diagnosed the patient with ME/CFS and have communicated this to your patient. For a diagnosis to be made all other causes of fatigue must have been investigated.
If you are unsure whether your patient has ME/CFS please see the NICE guidelines to support your diagnosis.
Please see a copy of the referral form below for exclusions to referrals.
If your patient has Long COVID please navigate to the Post COVID-19 Syndrome page.
