What medical specialty should look after ME/CFS?

[Chestnut tree]

Any speciality should be deprogrammed from the cult before sending patients there.

Options after; immunology, internal medicine, maybe neurology. The speciality most likely to be empathic and listening.

 

[NelliePledge]

Effectively a MUS clinic

 

[janice]

I’m off to see a Neurologist ( privately) who sees MS and Long COVID patients. Since he looks about 40 I am hoping he’s open minded and interested.
This was really instigated because the Immunolgy dept at John Radcliffe, Oxford offered me an appointment one day in June this year, then the next day they cancelled it, telling me to contact my GP to find out the reason. From GP I was told they don’t treat ME patients. I was really knocked sideways by the stress of that and it took me around 2 months to get back on track. Ho hum….on it goes.

 

[Jonathan Edwards]

One thing that worries me is that it seems that now a GP has to make a diagnosis before referral. In order to refer there has to be a disease name to fit a 'service'.

In the old days a GP referred to whoever they wanted to, describing the symptoms and asking for advice and expertise (not necessarily treatment). It was understood in them days that doctors most of the time were not that sure what was wrong or why or what to do about it and understood that learning more dependent on asking each other's advice.

 

[janice]

I think the reason I was so knocked sideways by John Radcliffe, Immunology dept. turning me down was that I was just so happy that they had offered me an appointment. It felt like all the work done by all those people to change the NICE guidelines in 2021, was finally trickling through to help pwME.
The last time I had been seen through the NHS by a so called ME specialist at John Radcliffe , Infectious diseases dept was back 10 years earlier when they told me there was no point testing me for anything cos they couldn't do anything anyway. Plus he described me as "a tough nut to crack" because I'd wanted to talk through the Johnathan Kerr GWAS data. He simply dismissed the fact they'd sub-grouped the study group. (I'm an exBMS with B.Sc. in Genetics) I sometimes wonder why I don't name and shame the person who dished out such appalling treatment. That was after keeping me waiting for 1.5 hours.