Norfolk ME/CFS Service

Address & Contact
Hamilton House
Battery Green Rd
Lowestoft
NR32 1DE
1493809977
Website

I have received excellent advice and a very thorough diagnosis of my ME-CFS condition, from Dr Beatta Della Jarworska. I have also received excellent support from Marie Frary, Specialist Chartered Physiotherapist. I fully understand that the service is a small team, ideally could be 3-4 times the size to serve the population. This leads to long waiting times. The merger with SNEE may improve.

Staff are compassionate and knowledgeable, but that’s where positives end. Waited 1year for assessment, had 1 follow up call 2 months later. Due to staff shortages didn’t hear from the service again, til i chased18 months on. Waited another 9-12 months to only be offered intro to ME group sessions via teams, 4 of them 1x a week. Then nothing again. Refused a 1:1 I requested as condition worsening.

Was diagnosed 03/2024 since then just a one off teams session in December 2024. Condition has gone from moderate to severe in that time. April 2025 offered online teams fatigue management before service is all changed again. Most helpful thing has been paperwork on nervous system disregulation through the post but overall very disappointing. Very wary of GET being used in future treatment offered.

Very poor service had a telephone consultation ,ME/CFS was confirmed. No support , everything I asked for was dismissed. Had a follow up with an OT again by phone didn't call when arranged and was discharged back to my GP without being informed at all. Then have been left to care for myself without any support and just to get on with it.Very Poor would not recommend this service

The Dr I initially spoke to for an assessment call was great. Friendly, helpful, lead to a diagnosis of m.e. 7 months later had a 2 hour online group call to go over the basics of m.e and pacing. 5 months since that, nothing. Not very helpful in my opinion so far. Feel very overlooked and forgotten.

The doctor took my symptoms seriously and investigated thoroughly, ultimately ending up in a diagnosis of ME.

Offered only a very poorly designed webinar!

Ineffective. Did nothing to stop my decline into severe. Failed to onward refer for care support and comorbidity. I later discovered that the OT had patient-blamed me for my decline - very distressing

Adults and children in Norfolk (based on the GP practice the patient is registered with)

Referrals accepted from GPs

We use the CDC Criteria to guide diagnosis.

The team consists of 9 Specialist therapists who provide treatment follow-up based on the NICE Guidelines, mainly Activity Management. We also have two GPWSIs who offer a diagnostic service, plus a Specialist Practitioner who is the service lead.

We offer telephone, video and some face-to-face. We are also setting up virtual groups.