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ME/CFS Doctors/Clinics in UK

Ellie_Finesse

Senior Member
Messages
192
Location
UK
A very interesting though @Countrygirl, I never looked at it like that, but it makes perfect sense.


I have had to make several trips to London over the years as my son had to see a specialist there 4 times a year. My chest used to frequently feel tight whilst there, and I struggled to breath, the air didnt smell clean. I am lucky to live in a small coastal town where the air is clean and smells fresh.

Thank you all for the great advice on doctors.... Is pretty pants that in this day and age, there is not enough NHS and private doctors that dont really know anything about/specialise in the condition.
 
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maryb

iherb code TAK122
Messages
3,602
Location
UK
Dr My-hill already got it right many years ago about why people may feel better when away from home, for the reasons outlined above, environmental - mould, pollution etc, honestly these ME clinics could learn a lot from her website:)
 

Ellie_Finesse

Senior Member
Messages
192
Location
UK
Thank you for that but at the moment I dont have that sort of money to go abroad for treament.

A referal has been sent to Dr Chaudhuri in Essex and am waiting for a reply as to whether they will see me.
 

Hilary

Senior Member
Messages
190
Location
UK
Go see Dr Biegler in Munich.
Hi @Uno - just seen your reference to Dr Biegler and wondered what you could tell me about him/her? I'm in the UK but I have a sister near Salzburg so not beyond realms of possibility for me (apart from potential cost??)

many thanks
Hilary
 

Ellie_Finesse

Senior Member
Messages
192
Location
UK
Hi @Hilary have you seen Dr Chaudhuri before? It would be interesting to know other peoples experiences when seeing him.

I know he does CBT and GET, its not why I am going. I to go anywhere else where a Psychologist or Psychiatrisy was clinical lead!

The main reason is to get a diagnosis from a specialist in ME. As nice as my GP is, she doesn't have clue about ME. Therefore I can't trust a diagnosis of, it could be ME or we think it is! It doesn't sit well with me.
 

Countrygirl

Senior Member
Messages
5,431
Location
UK
Hi @Uno - just seen your reference to Dr Biegler and wondered what you could tell me about him/her? I'm in the UK but I have a sister near Salzburg so not beyond realms of possibility for me (apart from potential cost??)

many thanks
Hilary

Dr Bieger has successfully treated @Ellkaye with ARVs and, after 18 months of treatment, he reports being 95% well.
 

Hilary

Senior Member
Messages
190
Location
UK
Hi @Hilary have you seen Dr Chaudhuri before? It would be interesting to know other peoples experiences when seeing him.

I know he does CBT and GET, its not why I am going. I to go anywhere else where a Psychologist or Psychiatrisy was clinical lead!

The main reason is to get a diagnosis from a specialist in ME. As nice as my GP is, she doesn't have clue about ME. Therefore I can't trust a diagnosis of, it could be ME or we think it is! It doesn't sit well with me.
Hi @Ellie_Finesse - I haven't seen Dr Chaudhuri - not sure I know anything about what he does, though at least he's a neurologist not another shrink/psychologist... @MeSci certainly seems to be questioning whether he's all about CBT and GET - I just don't know.
How has Christmas been for you? I miss the Christmases I had when my children were little - but v exhausting! Still quite exhausting now come to think about it! Hope you have survived ok?
 

Countrygirl

Senior Member
Messages
5,431
Location
UK
Hi @Countrygirl - that's very helpful thank you. I imagine there's a thread somewhere about this? I'm wondering about either him or KDM..

@Hilary I have tagged @Ellkaye, hoping that he will respond to you personally. He has posted the details of his treatment on a couple of threads here, although using ARVs has caused some controversy; however, it has certainly been successful for Ellkaye and we are waiting for the reports of the three dozen? or so that are also trying them at present.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Hi @Ellie_Finesse - I haven't seen Dr Chaudhuri - not sure I know anything about what he does, though at least he's a neurologist not another shrink/psychologist... @MeSci certainly seems to be questioning whether he's all about CBT and GET - I just don't know.
I don't have any personal knowledge about Dr Chaudhuri; it's just that when I do searches on Phoenix Rising it all seems to be positive, so I was surprised to see CBT/GET mentioned in connection with him here.
 

Hilary

Senior Member
Messages
190
Location
UK
@Hilary I have tagged @Ellkaye, hoping that he will respond to you personally. He has posted the details of his treatment on a couple of threads here, although using ARVs has caused some controversy; however, it has certainly been successful for Ellkaye and we are waiting for the reports of the three dozen? or so that are also trying them at present.
Hi @Countrygirl, thank you for doing that. I can't believe I have only recently discovered PR - have had this condition since 1993/4 and did really well over a period of time but have got worse again over the last couple of years. Signed up here earlier this year - what a fantastic resource and community.
 

Ellie_Finesse

Senior Member
Messages
192
Location
UK
Hi @Ellie_Finesse - I haven't seen Dr Chaudhuri - not sure I know anything about what he does, though at least he's a neurologist not another shrink/psychologist... @MeSci certainly seems to be questioning whether he's all about CBT and GET - I just don't know.
How has Christmas been for you? I miss the Christmases I had when my children were little - but v exhausting! Still quite exhausting now come to think about it! Hope you have survived ok?

Sorry @Hilary I was meant to tag and direct question to @Uno..... Duhhh silly me lol

I had a lovely Christmas thank you, despite another bad crash :(....... I miss that too, my kids are a lot older now 15 and 19!

I don't have any personal knowledge about Dr Chaudhuri; it's just that when I do searches on Phoenix Rising it all seems to be positive, so I was surprised to see CBT/GET mentioned in connection with him here.

Hi @MeSci, when I was searching the internet for NHS specialists in ME, I came across Dr Chaudhuri. I am sure I have read somewhere that he has worked with, at some point with Dr Charles Shepherd. I think they may have wrote/contributed to a report on ME/CFS together. Can't remember for definate but I do know that Dr Chaudhuri Speaks at conferences and he played a part in the autotopsy of Sophia Mirza. I may have for bits muddled!

I am not sure how he uses CBT and GET, is possible he may use mainly pacing and CBT as coping strategies instead of changing illness beliefs. It does state on website that they will not give a psychological cause.

Thats as much as I know, but I would love to know more so I have idea of what to expect. I haven't been able to find much on the internet in the way of other peoples experiences at his clinic.
 

worldbackwards

Senior Member
Messages
2,051
Chaudhuri co-wrote the ME Association's purple booklet. Haven't read it but I assume it will follow their firm anti-behavioural line.

As for Chaudhuri in practice, who knows? There are plenty who talk the talk and then start throwing CBT around when it suits them, especially in the UK.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Chaudhuri co-wrote the ME Association's purple booklet. Haven't read it but I assume it will follow their firm anti-behavioural line.

As for Chaudhuri in practice, who knows? There are plenty who talk the talk and then start throwing CBT around when it suits them, especially in the UK.
I know what you mean by the last sentence - there are doctors/scientists who have an impressive portfolio of biological ME research, yet head UK clinics which specialise in CBT/GET and do not offer anything scientific. I am thinking in particular of Dr Amolak Bansal. Maybe they are not allowed to offer proper treatment in the UK? After all, Sarah Myhill was threatened with being struck off for offering non-standard treatment.

I just did a title-only search here for 'Chaudhuri' and got 4 hits, all positive-looking. Here is the latest one.