No help, no care plan, infact I had to register a complaint with PALS, as this hospital was still using PACE (a disregarded DWP report stating graded exercise should be used for ME) I found staff to be condescending, and patronizing. Beyond unhelpful. No support, my own GP Surgery has zero idea in regards to this illness. No treatment plan as per NICE Guidelines….basically just left to suffer

No service for the severe & very severe. They offer only OT & CBT. Advised by the clinic to work with my GP. No service offered me a care plan or a review of a care plan (as advised by NICE) symptoms had to wait another 2 years to find treatment (Gp 1 issue at a time) still waiting for physio (community care). Those (very) ill/ their carers have to sort not professionals. That’s tiring/stressful

Referral takes an unacceptably long time. I didn’t see one person face to face. Everything was done over phone calls and then posted stuff out to me. Well one of the key struggles is our cognitive function so how is sending me stuff to read of any use. Multidisciplinary team don’t communicate with each other. I wasn’t under them for long enough in my opinion. Wasn’t offered any future follow ups

The OTs are lovely and after the group online sessions, the 1-2-1 with an OT was really supportive. I have sadly worsened and am quite severe now. I think overall, they are hindered by a lack of funding, lack of staff and that there isn't much else to offer but pacing and emotional support to accept the condition.

I have been ill for nearly 2 years, waited 6 months for an initial workshop and a further 6 months for a diagnosis. I have been offered further workshops but so far it’s all been around pacing. I will have to go back to GP to manage symptoms.

Waited nearly a year to see specialist who diagnosed me. Then waited a further few months to attend online group sessions, first one explaining what ME was, second one explained about pacing. Still waiting for next one but so far not learnt anything new. Supposed to get 121 sessions but no idea when they will be. I am moderate to severe and there is no other help offered

Referral took forever. I eventually got offered basic group course on pacing. 9 months later I’m still waiting for my one to one meetings. I really don’t hold out any hope for help.

The OT that I had sessions with was really kind and helpful. However, I am too ill to do the video sessions. Also, they can't review your medication; don't follow NICE guidelines; don't do any assessments, before, during or after the programme; and yet they boast a 70% success rate??? Since doing the programme I have worsened and am now bedridden.😪

No help with support letters for benefits other than general statements. Should be lead by Dr and is not. Psychological help should be one to one. MDT not complete as there is no specialist pharmacist

I’m moderate and was diagnosed by the clinic. All sessions were via web call and easy to follow. I feel though that it’s just not long enough for someone with a life changing illness

Overall it was a somewhat positive experience, although, little suggested that I wasn’t already implementing. Adding in meditation has helped getting to sleep but was already managing diet + pacing.

As a patient, I am too severe for the clinic, and I am pretty sure that I am not the only one left to get on with it.

This service left me very disappointed. They told me that as I have severe me/cfs they could not offer me any help. How can it be that the more severe your illness is, the less help is available?

The staff are very caring and understanding, but they cannot help me because so am severe, they just referred me back to the community who are at a loss as they have no idea how to help

Was diagnosed January 2020 (pre-lockdown) from one phone call. Never met a single person. Care wasn’t specialised at all. Very generic. I felt like another number

Admittedly diagnosed during covid, but never even spoke to consultant. Very good monthly zoom appointments with OT for pacing.

A number of online classes before you can access one to one appointments with an occupational therapist. All revolves around pacing very one dimensional no access to any medical advice

Provides a good summary of the basics and offers standard counselling.Doesn't provide any referrals or help with symptom management such a pain, physio etc

I find the service excellent BUT I’m more moderate to severe . No one seems to be able to help me . The OTs here are brilliant, but I SHOULD have the right to see an consultant , I feel quite abandond

The Lead is an understanding OT, but v busy. The best one can hope if severe is a letter outlining functionality, useful for benefits. If mild 3 management sessions. That’s it.

Waited over a year to see the specialist, Finally got an official diagnosis but that was it. No discussion around treatment. Only thing on offer was a support type group which I will attend online