Book published this week in UK referring to ME as psychosomatic

[JamBob]

You can download an MP3 podcast of the author talking on BBC R4 Start the Week programme this morning. At around 28:11 the interviewer asks her directly about ME.

http://www.bbc.co.uk/programmes/b05xd449

 

[Scarecrow]

"ME is just one of the possibly psychosomatic conditions that patients present with ... I had no difficulty identifying the underlying truth of O’Sullivan’s encounter with such a person, because I have known two or three victims of the condition myself ... the reaction of many ME sufferers, their relatives and friends and the organisations that represent them, to the idea that the condition is psychosomatic — caused by the mind and not by a disease — is intensely hostile. I have experienced this hostility. "

But if this is true, it begs the question: why are pwME so uniquely hostile to the suggestion that their condition is psychosomatic? If anyone ever gets round to providing a plausible explanation for that, I'll be impressed.

 

[Kyla]

Great response from IiME:
http://www.investinme.org/IIME-Newslet-1506-01.htm

Sir,

The review by David Aaronovitch (Book review “It’s All in Your Head: True Stories of Imaginary Illness by Suzanne O’Sullivan) on 6th June 2015 demonstrates, yet again, that poor research and selective opinions are no inhibitors to an article gracing the pages of The Times’ web site.

O’Sullivan’s book and Aaronovitch’s review includes ME as an example of a possible psychosomatic illness. So it is unfortunate that the author of the book and the reviewer seem to be equally out of date regarding research into ME.

The recent USA Institute of Medicine report on ME/CFS categorically states that ME/CFS is a serious, chronic, complex multi-system disease – not a psychological one.

The NATIONAL INSTITUTES OF HEALTH PATHWAYS TO PREVENTION WORKSHOP report stated -

“Although psychological repercussions (e.g., depression) often follow ME/CFS, this is not a psychological disease in etiology.”

The CMO CFS/ME Working Group, 2002 recognised that ME is not a psychological disorder.

At the end of May over 60 international researchers from prestigious institutes in thirteen countries gathered in London at a research colloquium on ME organised by the UK charity Invest in ME.

Top researchers from organisations such as Columbia University, Oxford University, Institute of Food Research/University of East Anglia, UCL, Bergen University, Uppsala University, Imperial College and Cornell University presented at the meeting – with none of the speakers referring to or believing ME to be a psychosomatic illness.

Far from it, as more and more evidence is gathered on the underlying pathomechanism of this disease the new strategy of biomedical research is gradually overcoming the bias that has been allowed to be maintained in the establishment press. Your journalists really need to catch up.

It is unfortunate that this book review again stigmatizes ME patients and is allowed publicity due to yet another seemingly orchestrated set of false beliefs allowed to be aired by mediocre editorial control, resisting the reality of ME.

Fortunately there are good and objective researchers such as those who attended the Invest in ME meetings who are curious enough to look further and solve the problem of ME.

ME patients will not lose hope with the currently promising biomedical research which will eventually find the cause of this disease. Unfortunately, like many others, they have already lost hope in expecting any semblance of accurate, unbiased and well-researched reviews and information to be published on this topic in The Times,

Yours Sincerely,

The Chairman and Trustees of Invest in ME

 

[Kyla]

Great response from IiME:
http://www.investinme.org/IIME-Newslet-1506-01.htm

Oops. Just saw this was already linked earlier

 

[alex3619]

There is a bigger issue here than just claiming ME is psychogenic. There is no sound evidence of ANY psychogenic disease. Its all theory and opinion, based on more theory and opinion. Where is the science? If the argument cites philosophic methods, then it is subject to dispute via philosophic methods. I might pick this book up second hand at some point ... never first hand, I don't want her to get the royalty.

 

[Dr.Patient]

@charles shepherd

Dr. Shepherd, thank you for the excellent rebuttal!

 

[Chris from Tampa]

This isn't just insulting to women--hysteria--yeah, right. What about the men who have this disease? What of us? I didn't ask for this, I don't revel in it, and honestly, if I weren't a tough SOB, this would kind of do me in.

And I've got a mild form.

 

[Kyla]

There is a bigger issue here than just claiming ME is psychogenic. There is no sound evidence of ANY psychogenic disease. Its all theory and opinion, based on more theory and opinion. Where is the science? If the argument cites philosophic methods, then it is subject to dispute via philosophic methods. I might pick this book up second hand at some point ... never first hand, I don't want her to get the royalty.

I agree with you. The problem is that this sort of nonsense relies on the fact that it is near impossible to prove a negative.

Eg - prove to me that magical unicorns do not exist. Logic would argue that they don't exist, because there is no credible evidence for them. But how do you definitively prove that? You can't. Because there is no evidence for or against something that never existed in the first place.

Instead it's years and years of accumulating evidence that ME exists and is a biological disease. rather than proving that psychogenic disease is a myth.

It's lazy and unconscionable to use lack of evidence as evidence. Even more so to just stick your fingers in your ears and pretend that the evidence doesn't exist. But that is certainly what keeps happening.
And when these nutbags are finally forced to acknowledge that for ME they will just move on to a new patient population.

 

[alex3619]

And when these nutbags are finally forced to acknowledge that for ME they will just move on to a new patient population.

I have been predicting this for years. Repeated failure for a century and a half has not stopped them.

 

[alex3619]

Eg - prove to me that magical unicorns do not exist. Logic would argue that they don't exist, because there is no credible evidence for them. But how do you definitively prove that? You can't. Because there is no evidence for or against something that never existed in the first place.

That is not disputed. However its not the case that these unicorns are being treated as a proven fact, and people are being subjected to medical treatments based on the presumption that unicorns exist.

The issue is not that psychogenic illness is not a valid hypothetical unproven disease. The issue is that its being treated as real. That is, to put it mildly, delusional, or disingenuous, or deceptive, or something. What it is not is scientific or evidence based.

If some doctor tried to treat patients for serious disease because of some whacky hypothetical notion, with unproven methods of dubious effect, with no evidence sufficient to merit any scientific credence, then they would be considered a quack, and drummed out of the medical profession. If someone was harmed they might go to prison. The normal rules do not seem to apply here, its a double standard.

The issue to what extent thought and emotion affect physical health is a real one. The issue that they cause disease, and moreover specific categories of disease, are a leap of faith based on received doctrine.

 

[nasim marie jafry]

I have read the chapter on 'ME/CFS', it is dreadful, manipulative and incoherent, I wrote a review at weekend on both Goodreads and Amazon. The case study for ME is called 'Rachel' - she is getting more and more ill, all tests negative, her parents look up ME on internet and decide that is what she has:

https://www.goodreads.com/review/show/1300842864

 

[Snow Leopard]

The good:
http://www.independent.co.uk/arts-e...-answer-the-questions-it-raises-10300946.html
and the bad:
http://www.theguardian.com/books/2015/jun/07/all-in-your-head-review-o-sullivan-suzanne-osullivan

 

[Valentijn]

Excellent review, @nasim marie jafry !

 

[Gingergrrl]

This is so horribly sad and pathetic that I don't know whether to laugh or cry. I know that at some point in time O'Sullivan and her cohorts will be ending up on the wrong side of history along with slavery, the Nazis, those who believed the world was flat, and those who believed that people with epilepsy were possessed by the devil.

I don't think it will happen it my lifetime but it will happen. There are not only women but also men and young children with this illness who are struck down in their prime with ME/CFS from around the globe. These people have not plotted together and many have no internet access and are dying alone at home or on the streets.

I reached a point very recently that my ME progressed to severe MCAS and I could not swallow a bite of food without stage two anaphylaxis and was hospitalized. My doc consulted with Dr. Afrin and I'd like to see O'Sullivan tell Dr. Afrin that my condition is not real.

If she went through what I did in the last 1-2 months, she would be crying like a baby and begging for mercy. You are a doctor for God's sake and maybe should show some compassion. And for the record, I was never sexually abused as a child and did not get severe mono and this continued downward spiral of the complete loss of my health until age 42.

GMAFB. Reading this stuff is nauseating .

 

[Sasha]

I have read the chapter on 'ME/CFS', it is dreadful, manipulative and incoherent, I wrote a review at weekend on both Goodreads and Amazon. The case study for ME is called 'Rachel' - she is getting more and more ill, all tests negative, her parents look up ME on internet and decide that is what she has:

https://www.goodreads.com/review/show/1300842864

Excellent review, well done.

Is it just me, or is the picture on the front of this book - something "cracked" - deeply, deeply offensive?

What is it with these people?

 

[Sasha]

I know that at some point in time O'Sullivan and her cohorts will be ending up on the wrong side of history[...] I don't think it will happen it my lifetime but it will happen.

I think it's going to happen within five years, tops. I think it's already impossible to know the literature and think that this is psychosomatic, but we need a big-hitting paper or two that really takes the axe to this nonsense and I think we'll soon be seeing it from Fluge & Mella, Lipkin, Davis and the END ME/CFS team - we're not far off here.

I'm sorry you're so very ill, Ginger. I wish some of the people who think this isn't real could just spend a few years in the state that we've been in for decades.

 

[Gingergrrl]

I think it's going to happen within five years, tops. I think it's already impossible to know the literature and think that this is psychosomatic, but we need a big-hitting paper or two that really takes the axe to this nonsense and I think we'll soon be seeing it from Fluge & Mella, Lipkin, Davis and the END ME/CFS team - we're not far off here.

I'm sorry you're so very ill, Ginger. I wish some of the people who think this isn't real could just spend a few years in the state that we've been in for decades.

@Sasha thank you and I wish I was as confident as you that our researchers will blow the lid off this thing in five years as much as I want this to be true.

Thank you for the well wishes too and I have NOT given up and still trying to do everything in my power to get better.

 

[Valentijn]

@Sasha thank you and I wish I was as confident as you that our researchers will blow the lid off this thing in five years as much as I want this to be true.

They've already blown the lid off it. Unfortunately, the media, government agencies, and psychobabblers haven't gotten the memo.

I think the IOM report pretty conclusively proved that the disease has biological pathology. And even there they were only looking at the most reputable and independently replicated research.

There's simply no rational basis left for anyone dealing with (or reporting on) healthcare to believe that ME is psychosomatic, if they did even a small fraction of their homework before opening their mouths or hitting their keyboards.

 

[alex3619]

There's simply no rational basis left for anyone dealing with (or reporting on) healthcare to believe that ME is psychosomatic, if they did even a small fraction of their homework before opening their mouths or hitting their keyboards.

The very definition of ineptitude.

 

[Kyla]

Utting-Wolff Spouts reply, titled "Proud to be ignorant":

http://uttingwolffspouts.com/2015/06/09/proud-to-be-ignorant/

Here is a section, click through for the rest.

...If one looks at things dispassionately, not easy if you’re suffering from the disease they so readily disparage, it is a strange thing; to spend your life and/or career insisting that an illness is all in the sufferer’s mind, even as the scientific evidence showing that it is not becomes overwhelming. No doubt considerable benefits can accrue from adopting such a position, Simon Wessely is hardly starving on the street, having done wonderfully well in building a career upon insisting every condition/disease under the sun is illusory, merely the construct of the sufferer’s disturbed mind. It is tragic he wasn’t practising in centuries past; the number of plague or smallpox victims who could have been reassured as they gasped their last breath, that it was all in their minds and a consequence of false illness beliefs, would have been vast.

Lest we forget (unlikely) ME has been defined as a neurological disease by the World Health Organisation since 1969, thousands of peer-reviewed papers have been published since then confirming its organic pathology. Yet still we endure ignorant banalities trotted out by the likes of O’Sullivan; she cannot even claim originality, I’ve been hearing the same nonsense for nearly thirty years.
...