UK doctors knowledgeable in ME/CFS?

Amw66 said:
Dr Claire Taylor in Dundee has made long COVID a specialism. Given the huge symptom overlap she does take on ME/CFS patients .
I have heard some good things re symptom knowledge and management from others
As usual private only and long wait list

https://www.drclairetaylor.com/
Click to expand...
I've seen her on twitter. She seems like one of the rare good ones who really get it.
 
Yes. That doesn't surprise me.
Early on in my disease, I lived in Fife in Scotland for a few years (3 decades ago) and even back then, the support for pwME was miles ahead.
Dundee is just north of Fife.

I think they had a viral outbreak in the region following which, many folk (including a local GP) developped ME/CFS.
And when a GP gets ME/CFS themselves, it's remarkable how quick they are to read and learn about the biomedical literature!

I was given a lot of support: Home care from social services, 5 days/week nursery placement for my young son (which was paid for by the local authority) etc.
I believe it is why I improved over this period and did not go on to be much more disabled. It was just what I needed, just when I needed it.

The Scottish Highland ME organisations say:
"Fife is the only region in Scotland to have an ME Specialist Nursing Service where patients are referred when a diagnosis of ME/CFS has been made by the GP. Fife’s guidelines for making a diagnosis are based around the Canadian Consensus Criteria."

I had a brief hospital stay in Dundee during that time and was also treated with understanding and respect.

It was only later when I lived in different areas of the UK, that I realised how dire the situation was for everyone else.
 
Last edited:
Bryan Timmins base in Northamptonshire. He is a neuropsychiatrist but when I started seeing him he was of the opinion that ME was a cellular problem but there was no evidence for it yet. He has a lot of experience in people with head injuries (like from a bad car crash) as well and said that there was a lot of similarity in symptoms.

because of his speciality though he only has a very small proportion of ME patients and the majority of his other clinics are for transgender patients.

He is due to retire soon and there will be no replacement :(
 
Amw66 said:
Dr Claire Taylor in Dundee has made long COVID a specialism. Given the huge symptom overlap she does take on ME/CFS patients .
I have heard some good things re symptom knowledge and management from others
As usual private only and long wait list

https://www.drclairetaylor.com/
Click to expand...

She was working at the ME trust a while ago, I spoke to her then. She was really kind and understanding and wrote an amazing letter advocating for my sensory needs.
 
lunarainbows said:
She was working at the ME trust a while ago, I spoke to her then. She was really kind and understanding and wrote an amazing letter advocating for my sensory needs.
Click to expand...
I too saw her in the MET days, was excellent (as was the letter - and to be fair, so to have the AfME letters I have had subsequently), made some really practical suggestions and referral suggestions which have been useful (but obviously not curative!). I'm seeing her again in a couple of weeks so can report back after. Wait list wasn't huge in the scheme of things - couple of months from memory.
 
I saw Dr. Anna Barham through AfME and would rate her based on my experience. But, sounds like she was moving on based on my last comms with the medical team at AfME (and I've not explored too much if she has a private practice). So, am seeing Dr. Claire Taylor in Feb.

If helpful, the other ME friendly linked consultant I've seen is Dr. Nick Gall for POSTy-ness and other cardiac fun and games - think his reputation precedes him in these parts..
 
I've recently seen Dr. Claire Taylor on a virtual appointment. Having seen her about 3 years ago whilst she was working with The ME Trust, I had a reasonable expectation of what she would be like and I cannot recommend her highly enough, based on my experience.

We had about an hour for the appointment, which was obviously challenging for me and I was clearly flagging during, but I knew I needed to get the most out of the time with her. There was no time pressure to be done. She listened, gave some practical insights/recommendations.

I knew what I wanted to cover and we got through what I needed, she is able to prescribe (which was something I'd not got from the AfME Dr I had seen) so, I have some additional meds on the way - some private and some by requesting of my GP to keep the cost down for me. She's emailed me instructions for the meds, explained like I'm 5 (as requested) as I couldn't keep noting down what she was recommending. Will have a letter with my GP in due course.

She's not cheap, £300 for an initial appointment and £240 for follow-ups. So, if cost is an issue, maybe the AfME bursary route could work for some.

Is such a shame we have so few truly knowledgeable doctors, but, she's a good-un imho.
 
Fainbrog said:
I've recently seen Dr. Claire Taylor on a virtual appointment. Having seen her about 3 years ago whilst she was working with The ME Trust, I had a reasonable expectation of what she would be like and I cannot recommend her highly enough, based on my experience.

We had about an hour for the appointment, which was obviously challenging for me and I was clearly flagging during, but I knew I needed to get the most out of the time with her. There was no time pressure to be done. She listened, gave some practical insights/recommendations.

I knew what I wanted to cover and we got through what I needed, she is able to prescribe (which was something I'd not got from the AfME Dr I had seen) so, I have some additional meds on the way - some private and some by requesting of my GP to keep the cost down for me. She's emailed me instructions for the meds, explained like I'm 5 (as requested) as I couldn't keep noting down what she was recommending. Will have a letter with my GP in due course.

She's not cheap, £300 for an initial appointment and £240 for follow-ups. So, if cost is an issue, maybe the AfME bursary route could work for some.

Is such a shame we have so few truly knowledgeable doctors, but, she's a good-un imho.
Click to expand...
Now I guess it £500 for an initial appointment over zoom and £400 face to face.
 
syedME said:
Now I guess it £500 for an initial appointment over zoom and £400 face to face.
Click to expand...
Yeah, I noticed the other day that her prices have gone up a lot for an initial appointment £500 and is £300 for a follow-up iirc - both virtual.

I think she's probably a victim of her own success and had some issues of her own over the last several months. The auto reply when emailing suggests she's had Covid and slowly returning to work. Maybe she's doing less appointments. I snaffled a follow-up for early next year the other day - having seen her last over a year ago.

ETA: in my experience, she is worth the money if able to self fund.
 
Do you know what the medications that Dr Claire Taylor (depending on the patient obviously) prescribes are?

Is it things from that big group of things some people try (e.g LDN, Ability, Mestinon, probably a load more I've forgotten)
 
josepdelafuente said:
Do you know what the medications that Dr Claire Taylor (depending on the patient obviously) prescribes are?

Is it things from that big group of things some people try (e.g LDN, Ability, Mestinon, probably a load more I've forgotten)
Click to expand...
Can only talk from my own experience, but, she has prescribed all sorts, including stuff that is very much off limits for GPs. We have also discussed LDN as an option. I've managed to move most things to my GP, with the exception of midodrine, which they flat refused to go anywhere near, but thankfully it's not too expensive (unlike sodium cromoglicate which we tried and was £400 for a month - my bank balance was relieved that didn't make a noticeable difference for me!)
 
Fainbrog said:
Can only talk from my own experience, but, she has prescribed all sorts, including stuff that is very much off limits for GPs. We have also discussed LDN as an option. I've managed to move most things to my GP, with the exception of midodrine, which they flat refused to go anywhere near, but thankfully it's not too expensive (unlike sodium cromoglicate which we tried and was £400 for a month - my bank balance was relieved that didn't make a noticeable difference for me!)
Click to expand...
Dr.Luis Nacul
 
You must log in or register to reply here.
Back
Top Bottom