Our Specialist is retiring - need a recommendation for doctor in UK

[zeetha]

Hi all,

After my wife got Chronic Fatigue in March 2021, we have been seeing virtually Dr Amolok Bansal who has tried all sorts of medications and supplements some of which have helped a bit - particularly Nimodipine and to a lesser extent Aripiprizole.

We knew Dr Bansal was leaving Spire to partially retire, but he had said that he would keep my wife on privately. However we have now heard that he is retiring completely for health reasons so we need to find a new specialist asap.

We tried Dr Claire Taylor as Dr Bansal suggested, but you cannot book an appointment as she is booked up for at least the next 6 months. Dr Bansal also suggested Dr Bunita Kane but I can't find how to book an appointment and she seems to focus on children.

Can anyone recommend a UK doctor who does virtual consultations, or even better someone in Sussex we could see?

My wife is devastated to be losing her doctor, as the NHS has not been helpful so many thanks in advance for any suggestions.

Z

 

[Hip]

World Map of ME/CFS Doctors.

Some lists of ME/CFS doctors:
MEpedia International List of ME/CFS doctors
MEAction List of ME/CFS Doctors
Co-Cure ME/CFS & Fibromyalgia Good Doctor List (good for local doctors)

World map of long COVID doctors here.

This UK map details NHS clinics for ME/CFS. Most NHS ME/CFS clinics do not have any pharmacological treatments to offer, and some may treat using inappropriate psychological therapy (such as CBT) or graded exercise therapy (which can make severe ME/CFS patients worse).

 

[BrightCandle]

Dr William Weir as well(I don't recommend him but others do). They is about it really in the UK there aren't many.

 

[zeetha]

Thank you! Shes was seen by the NHS service in our area over 2 years ago, but they then discharged her back to the GP and we've had no treatment from them hence why we went down the private route with Dr Bansal who at least was willing to try lots of different treatments.

 

[ChrisD]

A lot of people are seeing Dr Ben Sinclair (Long Covid Doctor) in Birmingham or London. His fees are quite high though but I think they do remote.

 

[Bronc]

Dr William Weir as well(I don't recommend him but others do). They is about it really in the UK there aren't many.

I have seen Dr Weir and found him to be very helpful

 

[Woozy]

I wouldn't bother seeing anyone as there noone knows what ME is yet.

 

[daveu]

Hi @zeetha,

We are in the same boat! I was seeing Dr Bansal as well but I am now looking for a new ME specialist since Dr Bansal has retired.

I was also recommended Dr Claire Taylor and Dr Binita Kane. I have contacted Dr Taylor but have not heard back from her yet. I contacted Dr Kane's office at The Long Covid Clinic (info@thelongcovidclinic.co.uk) and asked them if they were taking ME/CFS patients and they said yes. Dr Kane's office provided me with her current pricing schedule so I will try and paste that at the bottom of this post.

Today I contacted Dr William Weir's office in London (https://me-pedia.org/wiki/William_Weir). That phone number is 020 7467 8478. Dr Weir's secretary said that he is taking new ME/CFS patients. She said that his preference is for the initial appointment to be in person in London or Devon and that initial consultation costs £350 for one hour. Follow-up appointments can be virtual and they cost £150 for 30 minutes. His secretary said that if you can't travel for the initial appointment in person he is able to travel to you for a home visit for a cost of about £700.

Cheers

 

[zeetha]

Hi @daveu thanks for the information and posting the price list thats very helpful.

I heard from Dr Taylor on X that they are currently sorting out appointments for the people that they already have on their books, and hope to have availability from February to start taking on new patients.

In the meantime, Dr Bansal gave us prescriptions to cover the most helpful drugs he'd prescribed for a year and we are trying a consultant in a different speciality (Endochronology) who also looks at causes of fatigue at our local Spire hospital just to check again theres nothing thyroid, hormone etc as the cause.

 

[Woozy]

Dr Bunita Kane took her child with Long Covid to Germany I believe and she had therapy for microblood clots.

 

[daveu]

Per @ChrisD's recommendation, I contacted Dr Sinclair's practice and heard back from their admin team today.

Doctor Sinclair's private Long Covid Clinic (https://www.drfinlays.co.uk/services/private-long-covid-clinic/) is part of a practice called Dr Finlay's Private Practice. Their email to me said 'Our doctors use a functional approach focusing on gut health and stabilising all systems affected by Long Covid using their extensive experience.'

Despite mentioning I was looking for a ME/CFS specialist, the clinics admin team only mentioned Long Covid in their email.

The admin team's email said 'Dr Sinclair oversees the specialists and specialises in children [10-15yrs] with Long Covid.' And that two doctors 'Dr Gill and Dr Grimston, … specialise in adults [16yrs plus] with Long Covid.'

I was provided with the fees by the admin team so I will paste them below: