North of Tyne CFS/ME Service

Address & Contact
c/o Regional Department of Immunology
Royal Victoria Infirmary
Newcastle upon Tyne
NE1 4LP
0191 2138823
Website

Reviews Leave A Review
Have been referred to the service twice and, despite already having diagnosis of Long COVID and ME, been denied access: the most recent time GP was told it was due to my mental health scores. My mental health difficulties being a direct result of my ME and Long COVID. Whatever you do, don't tell them honestly how miserable living with a misunderstood Chronic Illness and disability is!
In '21 practitioner was thorough, telling me they could support me. Lead consultant made her call me back; I had restless legs & emotional difficulties dealing with my condition so it couldn't be CFS, just chronic fatigue & they couldn't see me. In '26 with severe symptoms refused because mental health difficulties even with appeal saying I no longer had MH difficulties. Upsetting & discriminatory
Had my referral rejected without even seeing me. Sent out a load of questionnaires, which i replied in respect of hiw my condition is affecting me, and they rejected it, telling my gp I had multiple personality disorders! My mental health has never been as stable!
I have never had an appointment with this service because of their discriminatory eligibility criteria, inconsistent with NICE guidance. They have twice rejected my GP referral due to high BMI. This is despite a stable weight for many years, and the ME symptoms/fatigue occuring after a viral infection. I lost 15kg, at the expense of worsening fatigue, but it still hasn't been enough for them.
Staff were adamant that my chronic fatigue couldn’t be CFS because I seemed ‘anxious.’ Suggested ‘doing a little bit more each day’ and CBT, didn’t acknowledge PEM and when I mentioned the NICE Guidelines, shrugged shoulders and said ‘They’re only guidelines.’ Physical examination conducted so fast that I could hardly follow the instructions. Overall very distressing experience.
Felt I wasn't listened to during interview and the person I consulted was going down a path of a diagnosis of his choosing. He seemed determined to exclude ME/CFS and to give me a rheumatic condition diagnosis. He wrote down things I didn't say and ignored important information I did give him. I was appalled by the letter he sent to my GP - because it contained misinformation.
Old fashioned out of date

Description
NOTE: NHS SERVICE

The North of Tyne ME/CFS Service comprises a secondary care (hospital)-based diagnostic team, a community-based rehabilitation and management team, and a paediatric service.

North of Tyne ME/CFS Service (adults):

  • Medical lead: Dr Brendan Payne
  • Other medical consultants from the Infectious Diseases Team, based at the RVI, also see patients.

Services for people with chronic fatigue

North of Tyne ME/CFS service:

We are the service for you if you are seeking a diagnosis of ME/CFS or support with managing the condition.

We are not able to offer support for people with fatigue with a clear cause (such as persistent pain, MS, primary sleep disorders, mood disorders…).

Other related services

Chronic pain services

  • Patients with chronic pain often also have significant fatigue symptoms.
  • If chronic pain is the major symptom, you should be seen in the chronic pain service.

Self-referral physio/pain teams

North Tyneside

North Tyneside (NTIMS)

Newcastle / Gateshead

Newcastle / Gateshead (TIMS)

Northumberland

Northumberland (JMAPS) – You may need a GP referral into this service.

Mental health services

Patients with mental health difficulties (such as depression) often have significant fatigue symptoms

  • Your GP or community mental health team treats mental health difficulties.
  • We are not able to treat active mental health difficulties in our chronic fatigue services.

Sleep service

  • Patients with sleep disorders often have significant fatigue symptoms

The Sleep Service assesses and treats patients with obstructive sleep apnoea and other sleep disorders.

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