Book published this week in UK referring to ME as psychosomatic

[nasim marie jafry]

@Countrygirl, IS there a link to this Countess of Mar letter anywhere? I must tweet it immediately.

 

[Sasha]

Big thumbs-up for the Countess of Mar!

 

[nasim marie jafry]

Absolutely, she is a star, I want to tweet her letter, can I tweet a link to here, is that okay?

 

[Countrygirl]

@Countrygirl, IS there a link to this Countess of Mar letter anywhere? I must tweet it immediately.

It appeared in my news feed on FB this morning, Nasim. I have asked for a link to it for you and will let you know.

 

[nasim marie jafry]

Thanking you, kindly, Countrygirl, I did not want to link directly to Phoenix site. This must be tweeted!

 

[nasim marie jafry]

Thanks, I got a link from FB.

 

[eafw]

The evidence is now so strong that ME/CFS is a serious multisystem neuro-immune disease that it becomes intellectually embarrassing for anyone to continue to consider it to be a psychosomatic disorder.
...
I look forward to receiving your considered response.

Perfect.

 

[Dr Speedy]

Perfect.

Not perfect, it should have been that it is intellectually embarrassing as exercise physiologist professor Keller wrote in January, not that it becomes

 

[Aurator]

Absolutely, she is a star

Yes, it's nothing short of astonishing that she always seems to say exactly the right thing. It's equally astonishing, though, that no-one in the right places seems to take any notice. Or maybe they are doing, just very slowly.

I wish we could clone the Countess of Mar, though only on condition that no harm is done to the prototype.

 

[jimells]

Her PR people are certainly doing a good job and the useless British press are swallowing it whole.

It sounds like the Science Media Centre at work. The author certainly sounds like "our own dear" Sir Simon. No doubt they know each other and he offered the used of his personal industry-funded PR machine.

 

[Daisymay]

Here' a link for the Countess of Mar's letter to O'Sullivan:

http://www.meactionuk.org.uk/Mar-to-Suzanne-OSullivan.pdf


or


http://bit.ly/1fgxlCO

 

[Countrygirl]

Curiously, the Countess's letter has been 'whoosed' from facebook. Did someone complain?:thumbdown:

 

[Sasha]

This new book was discussed at the Forward ME Group meeting at the House of Lords yesterday. A link to The MEA response to the review in The Times by David Aaronovitch is below. I don't think The Times has printed any of the letters that have been sent in. I will also be writing to Dr O'Sullivan with particular reference to the NIH report that was published earlier in the week. MEA response to The Times:

 

[Daisymay]

Charles can MEA and Forward ME also please look into the the issue of Dr O'Sullivan (and so many other doctors!) being in breech of GMC Good Medical Practice which requires doctors to keep their professional knowledge up to date:

http://www.gmc-uk.org/guidance/good_medical_practice/maintain_performance.asp

GMC Good Medical Practice 8 - You must keep your professional knowledge and skills up to date.

And the failure of any doctor to keep their professional knowledge up to date is surely even worse if a doctor were to spread their professional ignorance of the topic as fact in a book which they are profiting from both financially and professionally.

And legally what is the position of doctors in the UK who fail to maintain their knowledge?

And what is the position of the NHS who employ such doctors?

 

[Never Give Up]

Charles can MEA and Forward ME also please look into the the issue of Dr O'Sullivan (and so many other doctors!) being in breech of GMC Good Medical Practice which requires doctors to keep their professional knowledge up to date:

http://www.gmc-uk.org/guidance/good_medical_practice/maintain_performance.asp

GMC Good Medical Practice 8 - You must keep your professional knowledge and skills up to date.

And the failure of any doctor to keep their professional knowledge up to date is surely even worse if a doctor were to spread their professional ignorance of the topic as fact in a book which they are profiting from both financially and professionally.

And legally what is the position of doctors in the UK who fail to maintain their knowledge?

And what is the position of the NHS who employ such doctors?

Morally I agree with you. Practically speaking I think keeping knowledge and skills up to date really just means keeping them up to the level of the average practitioner, which is inadequate to meet the needs of PWME.

The research that we all read and cling to, though promising, is mostly done on a small scale and hasn't been replicated yet. It is not yet ready to support law suits.

I hope this changes soon, changes the standard of care, and exposes doctors like Dr. O'Sullivan for the in humane, jerks that they are.

 

[Daisymay]

Hi Never Give Up (like the name!)

I understand what you are saying but I just think that now with the IOM and P2P reports having reviewed the scientific evidence and on that basis clearly stating ME is a serious multi system organic disease, not a psychological or psychosomatic etc that patients around the world have a right to expect their doctors to be aware at the very least least of this most fundamental but pivotal of facts and treat them accordingly.

I certainly don't expect my GP to be up to date with ME research as they are generalists with so many diseases to deal with but I think we absolutely have the right to expect them at the very least to know it is an organic disease and specialists certainly should know this and very much more.

Is the time not ripe for the ME charities to collaborate, using the leverage of these two reports, to impress on the Royal Colleges/DWP/medical insurance companies etc that though the cause is unknown, the scientific evidence shows ME is a serious physical disease not a functional somatoform disorder/psychosomatic etc etc.

Being made aware of the science and the conclusions of these two reports it would surely be hard for the Royal Colleges to not then take action to ensure their members are duly informed as is required by the GMC.

Charles is this something MEA would consider organising?

We have no treatments as of yet but so much additional suffering could be allayed if the medical profession grasped the science rather than the wrong illness beliefs of the psychiatric lobby.

 

[Valentijn]

Since the author has been informed of the relevant information, she no longer has an excuse to ignore it. At the very least, awareness of her past mistake warrants a correction to the book, and hopefully to the media.

She seriously dropped the ball both as an author and as a doctor. In doing so, she said very incorrect things which could result in further damage to many ill people. In my opinion, that calls for an apology as well.

 

[Chris from Tampa]

I like my primary care a lot, but she steered me down the road of GET and cognitive therapy. But she also showed a willingness to learn what I find out. That's more important than being up to date. To be honest, in reading the posts here, It's clear that there's just so much to know...

 

[Daisymay]

I quite agree Valentijn.

 

[Yogi]

Charles can MEA and Forward ME also please look into the the issue of Dr O'Sullivan (and so many other doctors!) being in breech of GMC Good Medical Practice which requires doctors to keep their professional knowledge up to date:

http://www.gmc-uk.org/guidance/good_medical_practice/maintain_performance.asp

GMC Good Medical Practice 8 - You must keep your professional knowledge and skills up to date.

And the failure of any doctor to keep their professional knowledge up to date is surely even worse if a doctor were to spread their professional ignorance of the topic as fact in a book which they are profiting from both financially and professionally.

And legally what is the position of doctors in the UK who fail to maintain their knowledge?

And what is the position of the NHS who employ such doctors?

Great post. I really think it is time to challenge these charlatans. I do think a considered and detailed complaint with quotes from her book (perhaps borrow from library - we don't wish to her to gain financially) rather than a knee-jerk response to the GMC is required. The GMC should investigate her.

We have the WHO ICD and the Chief Medical Officer's report along with the IOM and the P2P to challenge this quack. It is a concern for all patients that she practices and sees patients if she still believes ME is psychosomatic.