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UK doctors knowledgeable in ME/CFS?
- Thread starter Andy
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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/
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/
I haven’t seen this doctor, and there is nothing online about her being interested in ME, but a close friend who works in biotech has met her specifically to talk about ME. She spoke with him about being very interested in helping patients w ME. He felt she was knowledgeable about current biomedical research.
https://www.chelseamedics.co.uk/our-doctors/dr-clare-thompson/
https://www.chelseamedics.co.uk/our-doctors/dr-clare-thompson/
rvallee
Senior Member (Voting Rights)
I've seen her on twitter. She seems like one of the rare good ones who really get it.
Yep. She's active with longcovidkids and has been great at awareness raising .
Need many more like her .
Lidia Thompson
Senior Member (Voting Rights)
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.
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.
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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
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
lunarainbows
Senior Member (Voting Rights)
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.
Fainbrog
Senior Member (Voting Rights)
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.
Fainbrog
Senior Member (Voting Rights)
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..
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..
Fainbrog
Senior Member (Voting Rights)
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.
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.