The CFS and ME service

During specialist assessment for CFS or ME, consultants take a detailed history of your symptoms and personal circumstances, which may take 45 minutes to complete.

Who we are

We are a team of clinicians with specialist skills, training and experience in CFS and ME. We are based in the centre for clinical infection, at The James Cook University Hospital in Middlesbrough.

Consultant team

• Dr John Williams, consultant in infectious diseases and clinical lead for CFS and ME
• Dr Brendan McCarron, consultant in infectious diseases
• Dr David Chadwick, consultant in infectious diseases

Therapy team

• Ria Lonsdale, specialist occupational therapist
• Dr Alison Woods, senior clinical psychologist
• Angela Park, specialist physiotherapist

Support staff

• Gemma Gibney, clerical support worker
• Marie Gibney, health advisor assistant
• Centre for Clinical Infection secretarial team, led by Donna Thompson, office manager

Before you come to us

To access the CFS and ME service you will need to be referred by your GP. You must be over 18 years old and live in the Teesside or Redcar and Cleveland area.

Please be aware that your GP needs to have considered other possible causes of your symptoms before referral. There are criteria for accessing the service and your GP will need to complete a series of blood tests.

If any part of the referral is not complete or you do not meet the service criteria your referral may be declined.

What we do

Specialist assessment and diagnosis

The consultants have extensive experience of assessing and making a diagnosis of CFS or ME. They will take a detailed history of your symptoms and personal circumstances.

The assessment may take 45 minutes to complete. Usually the consultants are able to give you an outcome of your assessment on the day, but occasionally they may need to perform further tests or seek another opinion.

If you receive a diagnosis of CFS or ME the consultant will discuss with you if you would like to be referred to the therapy team.

CFS therapy

The therapy we offer aims to:

• Improve your understanding of CFS/ME

• Develop your self-management skills to regulate symptoms and manage setbacks

• Develop your coping strategies to promote well-being

• Support you to increase activity levels in a safe and measured way

• Empower you to manage your health independently

We offer a maximum of 12 appointments which may take place in a group setting or individual appointments.

Therapy will be delivered by a specialist CFS Therapist. You will be expected to practice the strategies you have learnt between appointments and take an active role in your therapy.

Referrals

If you agree that you would benefit from CFS Therapy, the consultant will make a referral to the CFS therapy team. Referrals are discussed on a monthly basis at a multi-disciplinary team (MDT) meeting. To access therapy you must:

1. Have a clear diagnosis of CFS or ME
2. Have symptoms that significantly impact your everyday life
3. Be able to attend regular outpatient appointments
4. Be in a position (practically and emotionally) to take on board and implement advice
5. Be ready to make changes to your lifestyle

If your referral is accepted by the therapy team you will be sent a letter to confirm this. Please note due to high demand we operate a waiting list for therapy input.

On the rare occasion a referral for therapy is declined, the consultant will make you aware of this and often may direct you to a more appropriate service for support.

Assessment

Once an appointment is available you will be invited to attend an appointment to assess your suitability for therapy. This appointment will last 50 minutes, and will be completed by a specialist CFS therapist.

Occasionally a second appointment is needed to fully gather all the information needed. We aim to identify your current functional abilities and coping strategies, and what you would like to achieve by attending therapy.

Possible assessment outcomes

• You are managing well and don’t need therapy input
• Your needs are best met by a different service
• You are not ready for CFS therapy yet
• You would benefit from attending the CFS group rehabilitation programme
• You would benefit from attending individual appointments with either a CFS therapist or the CFS clinical psychologist

Clinical psychology

Adjusting to and living with CFS or ME can be a challenging and distressing journey. Some individuals may benefit from the input of the team clinical psychologist. A number of psychological approaches are drawn upon in appointments to support your sense of coping and identify barriers to moving forward.

Referrals to clinical psychology are via the CFS therapist, usually identified at your therapy assessment. A waiting list is in operation for clinical psychology and you will be notified by letter as soon as an appointment is available for assessment.

The clinical psychologist will work with you to agree goals and a set amount of sessions will be contracted.

Discharge

Whether you attend the group programme or individual appointments there will come a time for you to be discharged from the service. We recognise that the prospect of being discharged can be distressing for some.

During the time you are with the service we aim to empower you to manage your own health and have confidence in your ability to keep progressing independently.

We also recognise that CFS/ME is a long term health condition and individuals will from time to time need support.

The CFS team will endeavour to make you aware of local community support groups and agencies which could add to your coping skills and well-being.

The group rehabilitation programme

Group programmes begin in January, May and September each year. They consist of four sessions, approximately one month apart, each session lasting two hours (equates to eight individual appointments). The group is facilitated by the CFS multi-disciplinary team (MDT) and is held in the Diabetes Centre at The James Cook University Hospital.

The group offers a friendly, safe, positive and non-judgemental environment for individuals to learn about CFS and develop management techniques. It facilitates the opportunity to meet others with CFS/ME, which can be of great value and help individuals build their support network.

Attendance policy

In order to deliver an effective and efficient service it is important patients attend their appointments.

As a small service we need your help to stop wasted appointments. This would reduce waiting times and allow people to be seen quicker.

If you are unable to attend your appointment please contact the department at least 24 hours before your appointment. The more notice we have of cancelled appointments, the more likely another patient can make use of this appointment.

Please be aware

• If you fail to attend an appointment without letting us know you will be discharged from the service.
• If you are discharged but wish to access the service again, you will need to return to the original referral process through your GP.
• If you routinely cancel appointments with the service, this will also lead to discharge.
• If you find yourself cancelling appointments perhaps this is not the right time for you to engage with the service, and you should consider being referred back at a time when you can focus on your therapy.

Thank you for your cooperation.