• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Dr Gabrielle Murphy at the Royal Free?

Wolfiness

Activity Level 0
Messages
482
Location
UK
Any use? This is largely hypothetical, as I'm entirely bedbound and they don't treat you unless you can come in...

I'd say I'm at about 1 or 2 out of 100 on the Bell Fatigue Scale. I need a doctor competent to care for me and avoid hospital admission if/when I'm no longer able to communicate or swallow and need tubes etc.

I'm afraid (as in traumatised) that all any NHS service will do is yet again offer me wholly inadequate and inappropriate rehabilitative and management advice which I already know and have tried and found useless many times over.
 
Last edited:

Wolfiness

Activity Level 0
Messages
482
Location
UK
@MEMum It was Dr Shepherd that recommended her... GP referred me but they don't treat you unless you can come in.
 

charles shepherd

Senior Member
Messages
2,239
I know Dr Gabrielle Murphy and she comes across as a kind and caring physician with a pragmatic approach to management

Most of the feedback we receive at the MEA on the ME/CFS service at the RFH is positive and I am currently dealing with one person who is very upset about not being able to get funding for on-going care there

If someone in London wants to see a private and reputable physician, who is not going to arrange for expensive and unproven tests and treatments, I would recommend Dr William Weir. Dr Weir used to work at the RFH. He does do domiciliary visits as well.

CS
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Any use? This is largely hypothetical, as I'm entirely bedbound and they don't treat you unless you can come in...

I'd say I'm at about 1 or 2 out of 100 on the Bell Fatigue Scale. I need a doctor competent to care for me and avoid hospital admission if/when I'm no longer able to communicate or swallow and need tubes etc.

I'm afraid (as in traumatised) that all any NHS service will do is yet again offer me wholly inadequate and inappropriate rehabilitative and management advice which I already know and have tried and found useless many times over.

Personally I would see her but I've never meet anyone as severe who has seen her and said good things. I've meet Dr Murphy and had a free exchange of views. I've also met patients including one with private tests that she took seriously.

There's definitely a line there that she won't cross through with NHS and private testing and treatment. I just don't know what that it yet.

I know this is a hypothetical question but have you considered Dr Weir or Dr Paul Worthley

http://www.metrust.org.uk/patient-care/
 

wdb

Senior Member
Messages
1,392
Location
London
If someone in London wants to see a private and reputable physician, who is not going to arrange for expensive and unproven tests and treatments, I would recommend Dr William Weir.

What sort of tests and treatments might be offered in that case ? I got the impression that ME specialists fell into two camps, ones that arrange for expensive and unproven tests and treatments and ones that tell you that unfortunately there is little that can be done. I saw Dr Bansal who was of the later type.
 

msf

Senior Member
Messages
3,650
If someone in London wants to see a private and reputable physician, who is not going to arrange for expensive and unproven tests and treatments, I would recommend Dr William Weir. Dr Weir used to work at the RFH. He does do domiciliary visits as well.

CS

What´s the point though? You can get no treatment and no help from the NHS for free.
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Any use? This is largely hypothetical, as I'm entirely bedbound and they don't treat you unless you can come in...

I'd say I'm at about 1 or 2 out of 100 on the Bell Fatigue Scale. I need a doctor competent to care for me and avoid hospital admission if/when I'm no longer able to communicate or swallow and need tubes etc.

I'm afraid (as in traumatised) that all any NHS service will do is yet again offer me wholly inadequate and inappropriate rehabilitative and management advice which I already know and have tried and found useless many times over.

I'm sorry you're so ill Wolfiness. There has been quite a bit of discussion on here about the Royal Free. Do a site search and messages will come up.

Dr Murphy was helpful to me - she referred me to an immunologist who gave me lots of non-standard tests which showed that I had immune system problems. The immunologist was also willing to prescribe long term anti-virals and then try other meds that I asked for.
 
Messages
13,774
I know Dr Gabrielle Murphy and she comes across as a kind and caring physician

Surely if she was a genuinely kind and caring physician, then she would have spoken out about the way results from PACE were misrepresented, and the way patients were smeared for pointing this out. It's easy for medical professionals to present themselves as 'kind and caring' while being well paid for promoting quackery, and some patients may even be suckered into thanking them for it (homeopaths get praise too), but that is not a moral way for them to live their lives.
 

Daisymay

Senior Member
Messages
754
Any use? This is largely hypothetical, as I'm entirely bedbound and they don't treat you unless you can come in...

I'd say I'm at about 1 or 2 out of 100 on the Bell Fatigue Scale. I need a doctor competent to care for me and avoid hospital admission if/when I'm no longer able to communicate or swallow and need tubes etc.

I'm afraid (as in traumatised) that all any NHS service will do is yet again offer me wholly inadequate and inappropriate rehabilitative and management advice which I already know and have tried and found useless many times over.

I'm sorry you're so poorly Wolfiness, I hope you can find someone to help. I've spoken once to Dr Weir and know of him and he's a very decent chap and knowledgeable on ME but of course you have to pay. Take care x
 

charles shepherd

Senior Member
Messages
2,239
Surely if she was a genuinely kind and caring physician, then she would have spoken out about the way results from PACE were misrepresented, and the way patients were smeared for pointing this out. It's easy for medical professionals to present themselves as 'kind and caring' while being well paid for promoting quackery, and some patients may even be suckered into thanking them for it (homeopaths get praise too), but that is not a moral way for them to live their lives.


Most people who go into medicine do so because they genuinely want to help people

And there are always going to be disagreements between doctors, and between doctors and their patients, as to how to manage all kinds of illnesses

But that does not mean that a doctor cannot be a kind and caring physican at the same time - whatever side of the fence they occupy

As has already been pointed out in this discussion, and in feedback to the MEA, there are good reports (and some excellent reports) about this particular doctor

So if someone in Norh West London wants to see an NHS physician for further help with either diagnosis or management (where there is no compulsion to follow what is advised) being referred to the RFH ME/CFS service is one option to consider…...

CS
 
Messages
15,786
But that does not mean that a doctor cannot be a kind and caring physican at the same time - whatever side of the fence they occupy
Sure, they can be a wonderful person. But if they're getting the basics wrong regarding the disease which they purport to treat, they're dangerous. And given the popularity of deceiving patients among CBT fans, I'd never trust one until they had a very public "come to Jesus" moment with a renouncement of psychosomatic modalities.
 
Messages
13,774
Most people who go into medicine do so because they genuinely want to help people

And there are always going to be disagreements between doctors, and between doctors and their patients, as to how to manage all kinds of illnesses

But that does not mean that a doctor cannot be a kind and caring physican at the same time - whatever side of the fence they occupy

That's an understanding of what it means to be a 'kind and caring physician' that seems to set very low standards for doctors! It would mean that all manner of quacks could be classed as kind and caring physicians. I think that patients deserve better than that.

She's a co-author of the PACE trial, and has a responsibility to speak out about the way in whichh results were misrepresented, and then patients smeared for speaking out about this. Just last year she was a co-author of the PACE response to Geraghty: http://journals.sagepub.com/doi/10.1177/1359105316688953

This is not the behaviour of a kind and caring physician. No matter what tone is adopted during a consultation it is not kind and caring to promote homeopathy to a patient, and nor is it to promote PACE as a respectable piece of research.

It is in the interest of the medical profession to set low standards for itself, and it has been doing this for a very long time. This has been to the detriment of patients, and I think we should make it clear that the low standards of some of these people are not acceptable.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
That's an understanding of what it means to be a 'kind and caring physician' that seems to set very low standards for doctors! It would mean that all manner of quacks could be classed as kind and caring physicians. I think that patients deserve better than that.

Quote is for emphasis.

Kind and caring can be an emotional salve for the patient when one is being ignored and otherwise maligned but it hardly meets any kind of standard for proper medical care especially if the kind and caring person is wholly misguided in their beliefs about the illness.
 
Messages
13,774
Kind and caring can be an emotional salve for the patient when one is being ignored and otherwise maligned but it hardly meets any kind of standard for proper medical care especially if the kind and caring person is wholly misguided in their beliefs about the illness.

Yes. A lot of ME/CFS patients are so routinely mistreated, significantly because of the sort of problems caused by PACE, that they can be over-joyed to just get an appointment with someone in a position of medical authority who speaks to them with a sympathetic tone of voice. When the same authority figures are then helping to cause so many of the problems patients face outside of the consulting room, that is nothing to be grateful for.
 

ukxmrv

Senior Member
Messages
4,413
Location
London