Thanks all.
@Hip I love the world map. Do you know who made it? Now I've asked around, I have a longer list of people that may be able to help, at least a couple of which should be on that world map. I'd like to get in contact with the makers of the map to tell them what I know.
@Countrygirl it's fabulous you've got Dr Weir coming over, well done you on hosting that!!
Here's the list I've got right now:
(It's a combo of notes from what other people have said and listings I've been able to find)
Private CFS specialist doctors
Dr Bansal
specialist doctor
https://www.spirehealthcare.com/spire-st-anthonys-hospital/consultants/dr-amolak-bansal-c2568454/
was told (unconfirmed) £700 for an hour’s consultation
Gives long letter of advice for treatment to GP
St Anthony's Hospital
mixed reviews. Gave Vincent b12 injections. Gave Phi thyroid test that led to thyroid meds. Can diagnose further co-morbid conditions. Has prescribed other people acyclovir, low dose of thyroxin, low dose naltrexone.
Dr B also has a comprehensive list of supplements he goes through suggesting the most relevant ones depending on your symptoms, inc betahydroxybutyrate (BHB).
Dr. William Weir, Harley Street
specialist doctor
Dr. Weir treats M.E. from a biomedical perspective. His basic consultation is £250 which includes a letter type summary of his findings. More extensive reports would be around £500. Further tests can be arranged, should he feel they are necessary, either on the NHS or privately.
Dr Weir is a retired consultant physician with a special interest in ME/CFS. Dr Weir has used tenofovir to treat ME/CFS.
Telephone: 020 7467 8478
10 Harley Street
London
W1G 9PF
Breakspear, Prof. Basant Puri
specialist doctor
www.breakspearmedical.com
Prof. Puri sees M.E. patients privately. He can be contacted through Breakspear Medical. In the past, his treatment has involved Essential Fatty Acids for sufferers. He has also conducted SPECT scans but is now cautious about them due to radiation. He tends to be very booked up.
Telephone: +44 (0) 1442 261333
Breakspear focuses on allergy and environmental illness. For ME/CFS treatment they use antivirals, gammaglobulins for parvovirus, and test and treat rickettsial and bacterial co-infections.
Breakspear Medical
Hertfordshire House
Wood Lane
Hemel Hempstead
Hertfordshire, HP2 4FD
good at testing, friendly
Dr Paul Worthley from the ME Trust
specialist doctor
https://www.metrust.org.uk/howwehelp/
by phone
He does reasonably priced telephone consultations £20 for 15 mins
online private test kits
Medichecks
https://www.medichecks.com/thyroid-function-tests/thyroid-check-plus
£59 for 5 thyroid tests
Blue Horizon Medicals
https://bluehorizonmedicals.co.uk/catalogsearch/result/?q=thyroid
£49 for 3 thyroid tests
Genova Diagnostics
https://www.gdx.net/uk/kitordering
thyroid test and other tests.
£65-£200 online
Other places
Optimum Health Clinic
specialist clinic
Harley Street
Mixed reviews. Vague, expensive, under qualified - trained in house.
The GP Surgery
private GP
https://www.thegpsurgery.co.uk/doctor/book-an-appointment/
£42 for thyroid inc T3 test. 10 min consultation £50, 20 min £70.
Wimbledon
Burghwood Clinic
allergy and nutrition specialists
https://www.burghwoodclinic.co.uk/69/Chronic-Fatigue-Syndrome-CFS-ME
more tests, supplement and nutrition recommendations. Enzyme Potentiated Desensitisaion (EPD) or Neutralisation
NL Clinic
salon
B12 injections
Southgate
£25 per session roughly
Well Works
functional medicine
https://well-works.uk
can offer a health coach for adapting to dietsonline
from World Map - haven't heard about them through a patient:
Dr Forsyth
functional medicine
www.dr-forsyth.com
Dr Forsyth uses ecological medicine (functional medicine) and homeopathy to treat ME/CFS. Also sees patients at Biolab Medical Unit, 9 Weymouth Street, London W1W 6DB.
+44 1737 226338
North Cottage,, 11 Dovers Green Rd, Reigate RH2 8BU
London Sleep Centre
londonsleepcentre.com
Treats ME/CFS sleep disorders.
+44 20 7725 0523137 Harley St, Marylebone, London W1G 6BF
Dr Abhijit Chaudhuri
www.bhrhospitals.nhs.uk
Dr Chaudhuri is a consultant neurologist at the Essex Centre of Neurological Science.
+44 330 400 4333Queen's Hospital, Rom Valley Way, Romford RM7 0AG
Dr Saul Berkovitz
www.uclh.nhs.uk
Dr Berkovitz is based at the Royal London Hospital for Integrated Medicine, and uses complementary and orthodox medicine.
+44 20 3456 7890
60 Great Ormond St, London WC1N 3HR
My takeaway is that different places can do different things. I may be able to find somewhere local like a medical salon type place that will offer b12 injections for much cheaper than a CFS specialist.
Personally Dr Bansal or Dr Weir are in my shortlist for seeing, partly because of location. They sound like they could help with at least some of the picture. I've heard more about Dr Bansal so I may end up choosing him.
Many people get private testing but I need someone to look at the results and diagnose and know what if anything to prescribe. I'm just not capable of being my own doctor very effectively.