Book published this week in UK referring to ME as psychosomatic

[Snowdrop]

Equally, biomedical abnormalities do not alter the fact that depression is a purely psychiatric diagnosis.

And here we have a big problem. No matter the dysfunctional biology that makes something a physical medical problem these things will always be psychiatric for some. It defies understanding.

 

[Dolphin]

After a couple of further comments from others, turkeybaster (a doctor in his/her late twenties) has responded again.

It puzzles me how any doctor can persist in such uncritical acceptance of the efficacy of CBT and GET for ME/CFS, when any half attentive look at the research on which such a view is based will show disturbing signs of shoddiness. But the following seems to be turkeybaster's refrain: "It bears repeating that CBT and exercise programmes are the only treatment currently proven to provide any benefit to sufferers of CFS."

One of the two commenters drew turkeybaster's attention to David Tuller's letter to the Lancet with its numerous signatories, but it seems to have had no effect in persuading turkeybaster to accept that there might be something wrong with PACE et al.

If anyone can bear reading the whole of turkeybaster's latest comment, I have pasted it below:


"Donnie, I'm not really sure what you're getting at in your whole paragraph on EBV - almost every adult has serological evidence of exposure to EBV at some point, and there is no evidence for it as a causative agent of CFS. As for the patient and relative I mentioned, you're just going to have to accept that your cynicism is misplaced.

And, despite myself, I'm going to have to tell you that homeopathy isn't "evidence based". That's the whole point: there isn't any evidence that homeopathy has any effect beyond the placebo. It's ironic that you write of "quackery" in British medicine, dismiss large swathes of peer-reviewed literature as "methodologically flawed" and essentially suggest, on the evidence of a book review on amazon, that I was negligent in my treatment of a patient and then accuse Dr O'Sullivan of "lazy prejudices"!

It bears repeating that CBT and exercise programmes are the only treatment currently proven to provide any benefit to sufferers of CFS. The Cochrane organisation have produced meta-analyses of the research for these interventions - we're not just relying on one or two studies here, Loaf, this is about as close to "fact" as you get in scientific discourse. The review for CBT is old now, published in 2008, but the review for exercise therapy was recently updated. Feb 2016. They show benefits for both interventions. They are not cures, and problems are identified with compliance, but for those who tolerated the treatments, they are proven to improve symptoms. And that's all we've got. This much is proven, nothing else (as yet) has been shown to help.

As for the rituximab trial, I'd caution you, Loaf, not to mention it in Donnie's presence as the primary outcome measure is entirely based on self-reported fatigue scores. It shall be dismissed as quackery! In all seriousness, we're just going to have to wait to see if the results of the small scale trials are replicated. Any results are going to have to be verified by other teams, as knocking out a patient's B cells to treat a non-fatal condition is a pretty drastic step. We're going to have to be damned sure it works! I can see that there is a crowd funding initiative in the UK to start a similar trial here which is a pretty innovative step - and it has the added benefit that the trial will be out of the influence of drug companies.

I don't really see a conflict with defending Dr O'Sullivan's position on CFS and ongoing biomedical research. The condition currently has no biological basis and there are no universally accepted theories describing the pathophysiology of the illness - of course there should be ongoing research! I'd also draw your attention to the example you both seem to have ignored in my original reply, that immune dysfunction has long been known to be a feature of depression. The diagnosis is psychiatric, but biomedical research revealed its effects go far beyond what was originally thought - biomedical research should never stop! Equally, biomedical abnormalities do not alter the fact that depression is a purely psychiatric diagnosis.

I think you've hit the nail on the head, Loaf, when you write that there may well be a part physical basis to CFS, but I'm baffled as to why you think neither myself nor Dr O'Sullivan accepts this? I suspect the answer to this whole condition is going to lie somewhere at the point where physical health meets psychological well-being. Factors of behaviour, personality, psychology and environment as well as physical health are all going to play a part. I suspect we disagree, but for me that's what makes the conversion/somatisation paradigm so useful. It's a working model for the condition, if not the whole answer.

There seems to be a clamour among CFS sufferers for a purely biomedical explanation for their condition, and I fear there isn't going to be one. As I said above, I think it's going to turn out to be far more complicated than that. And this is why we need to embrace the therapies that the evidence shows DOES help. There's a lot of talk elsewhere of similarities with AIDS before the causative agent was found, or MS before the inflammatory demyelinating plaques were discovered. I actually find that sort of comparison quite offensive: these are progressive, fatal diseases with objective abnormalities detectable on clinical examination and/or routine lab bloods before the pathophysiology was understood. CFS is not the new AIDS, and it's not the new MS.

I'm glad you've read the whole book, Loaf, but I'm sorry you may have missed some of the subtlety of it. The underlying meaning isn't that medicine has all the answers, or that doctors always think they're right - on the contrary, Dr O'Sullivan's humility is striking - or even that CFS symptoms are "all in your head". Treatment of conditions of whatever aetiology requires first a therapeutic alliance to be forged with patient and clinician. Sometimes that's as simple as sticking out an arm and allowing me to pump you full of antibiotics, but often its about a doctor describing that they don't have all the answers but offering treatment that has been shown to help. This book is as much about this alliance (and the consequences of a lack thereof) as the neurological deficits, and that's what made the book so enjoyable for me. The CFS/ME debate is an unnecessary sideshow, and detracts from the true message of the book."

Sounds like a knowledgeable doctor. Might be interesting to ask do they have a conflict of interest, by being involved in a CFS service that offers CBT and/or GET

 

[worldbackwards]

There's a lot of talk elsewhere of similarities with AIDS before the causative agent was found, or MS before the inflammatory demyelinating plaques were discovered. I actually find that sort of comparison quite offensive: these are progressive, fatal diseases with objective abnormalities detectable on clinical examination and/or routine lab bloods before the pathophysiology was understood. CFS is not the new AIDS, and it's not the new MS.

It's intriguing that she would find such a comparison offensive whilst at the same time saying that a psychiatric diagnosis wouldn't detract from the seriousness of the illness. It sounds curiously like double standards: Yes, your illness is serious but I find it offensive that you should actually expect me to take it seriously.

 

[TiredSam]

Turkeybaster sounds quite reasonable in some parts. I think the main problem is that she thinks that once she's read the Lancet, the PACE trial, the Cochrane report etc, looked up the official NHS position, she's done the necessary research, knows the latest, and is ready to have an informed opinion. Finding it hard to blame her really, at least she's made the effort to find out as much as she can.

Doctors probably expect to be able to rely on what they find out when they've looked up the subject in what they have always believed are the most credible sources, including an extensive, peer-reviewed, published study. If they had to lift the covers on every published study they read, read reviews on the reviews, get into the politics of the whole thing, they'd never have time for much else. It wouldn't really have occured to me to look further behind the scenes until I received the education that is ME.

Of course she's completely wrong, and if she wants to publish her opinions on an amazon review she should be ready to read the articles by Tuller, Coyne etc that she's directed to and review her opinion. But I can't help wondering if she's typical of many reasonable doctors doing their best, but being mis-informed and having to act on the basis of that because they don't have the time or can't be expected to get into a subject any deeper once they've informed themselves as well as they can from what they regard as credible sources.

EDIT: It's what the Robert Koch Institute has just done in Germany - reviewed the "available evidence" without probing any deeper, and produced a report full of BPS bollocks that will be another obstacle for patients to deal with for many years to come.

 

[TiredSam]

I wrote the above without reading the original review by Turkeybaster:

Firstly, I'm a medical doctor. I have daily contact with people who present with functional disorders, conversion disorders and somatisation disorders. What strikes me about this book is the compassion of the Author for her patients. It is obvious throughout the book that her first priority is for her patients' well being, and I salute her approach: we should all be as bold in approaching these diagnoses without fear. We don't do it because it's easier not to, to the detriment of our patients' health.
It is striking the number of ignorant and ill-informed reviews attached to this book. It's clear most of the reviewers haven't read the book and those that have have done so with preconceived ideas of what it says. The pseudo-scientific babble accompanying the most vitriolic would be laughable if it wasn't so tragic: holding these views will clearly prevent people accepting and accessing the only treatments proven to improve outcomes, namely psychological therapies such as CBT.
I was lead to this book by a relative of a patient. She was only just coming to terms with the fact that her relative had a functional illness, although the patient herself could not accept it. In my conversation with her she told me this book had been recommended to her by a psychiatrist and had given her hope that her relative may recover. I'm glad I've read it and hope I can channel some of Dr O'Sullivan's compassion and honesty when treating sufferers of these conditions.

I have gone off her considerably.

 

[SilverbladeTE]

 

[worldbackwards]

View attachment 14860

 

[skipskip30]

Turkeybaster sounds quite reasonable in some parts. I think the main problem is that she thinks that once she's read the Lancet, the PACE trial, the Cochrane report etc, looked up the official NHS position, she's done the necessary research, knows the latest, and is ready to have an informed opinion. Finding it hard to blame her really, at least she's made the effort to find out as much as she can.

Given some of the awful unreasonable parts I fail to see how you can praise her. Shes put effort into reading other peoples biased opinions and spent no time critically examining the evidence to come up with her own.

*Edit* I see you have come to your senses in a later post.

 

[worldbackwards]

Something's overwhelming me with sadness...

https://twitter.com/i/web/status/720931701904510976

 

[chipmunk1]

Something's overwhelming me with sadness...

https://twitter.com/i/web/status/720931701904510976

Wonderful. Now she should take her own medicine, do lot's of CBT and live to 120 years without any sign of physical disease.

What's more likely is that there are some people who are sick, some people who are depressed and sometimes people are depressed and sick.

For some reason some believe that depressed people can never be physically sick. Impossible.

Firstly, I'm a medical doctor. I have daily contact with people who present with functional disorders, conversion disorders and somatisation disorders

Translation: I misdiagnose people all day long and I have no idea what problems many of my patients have.

What strikes me about this book is the compassion of the Author for her patients. It is obvious throughout the book that her first priority is for her patients' well being, and I salute her approach: we should all be as bold in approaching these diagnoses without fear. We don't do it because it's easier not to, to the detriment of our patients' health.

Translation: We do it because it is easier and we have not learned anything else. Also our ego does not permit us to admit that we don't know everything.

It is striking the number of ignorant and ill-informed reviews attached to this book.

Translation: It upsets me that people don't accept our wonderful ideas blindly. How dare they?

It's clear most of the reviewers haven't read the book and those that have have done so with preconceived ideas of what it says. The pseudo-scientific babble accompanying the most vitriolic would be laughable if it wasn't so tragic: holding these views will clearly prevent people accepting and accessing the only treatments proven to improve outcomes, namely psychological therapies such as CBT

.
Translation: I have no real arguments to support my position.

 

[TiredSam]

Something's overwhelming me with sadness...

https://twitter.com/i/web/status/720931701904510976

This from the German Science Journalists' Association, in a critical article about the proposed setting up of a SMC in Germany (in German I'm afraid):

http://www.wpk.org/quarterly/einzelartikel/das-britische-science-media-centre-(smc)-und-was-wir-davon-lernen-koennen.html

The interesting bit is here:

Außer dem Wellcome Trust, in dessen Räumen das SMC auch beheimatet ist und der 30% des Jahresbudgets finanziert, darf kein Sponsor mehr als 5% des Jahresbudgets beitragen. Diese finanzielle Deckelung soll die operative Unabhängigkeit von einzelnen Sponsoren garantieren. Auf seiner Website weist das SMC-UK insgesamt 97 Finanziers aus (www.sciencemediacentre.org/about-us/funding).

Apart from the Wellcome Trust, in whose offices the SMC resides and who finance 30% of the SMC's budget, no sponsor may contribute more than 5% of the annual budget. These financial limits are to guarantee the operative independence of/from individual sponsors. On its website the SMC-UK lists 97 sponsors (a link which unfortunatey no longer leads to the list of sponsors).

On the SMC's website:

http://www.sciencemediacentre.org/about-us/

it says

The Centre is now housed in the Wellcome Collection

and at the bottom:

With thanks to Wellcome Images for use of their image library

How very cosy it must be at 215 Euston Road. Pity none of the links to "funding" on the SMC website work.

 

[sarah darwins]

Something's overwhelming me with sadness...

I have met many people whose sadness is so overwhelming that they cannot bear to feel it. In its place they develop physical disabilities.

How exactly the f!&* does she know?

Jeez, that is the most egregious bullshit. It's precisely as scientific as "I sense your aura has been disrupted"

 

[chipmunk1]

Apart from the Wellcome Trust, in whose offices the SMC resides and who finance 30% of the SMC's budget, no sponsor may contribute more than 5% of the annual budget. These financial limits are to guarantee the operative independence of/from individual sponsors.........

..........apart from the Wellcome Trust

Our Independence
The independence of the Science Media Centre is critical to the work we carry out. We do not have any specific agenda other than to promote the reporting of evidence-based science, and are completely independent in both our governance and funding.

http://www.sciencemediacentre.org/contact-us/
http://www.wellcome.ac.uk/About-us/Contact-us/index.htm

They operate out of the Wellcome trust. Same building.

So this is the PR division of the Wellcome trust?

http://www.meassociation.org.uk/201...re-publish-expert-reaction-to-the-pace-study/

https://jcoynester.wordpress.com/20...res-letter-writing-campaign-to-uk-parliament/

http://www.sciencemediacentre.org/cfsme-the-next-step-in-the-controversy-2/

Nothing to do with science. Pure Propaganda.

 

[sarah darwins]

... the reporting of evidence-based science, and are completely independent in both our governance and funding.

They want people to conflate independence with objectivity. Fox News is independent in governance and funding, too. Objective? Not so much.

 

[SilverbladeTE]

Basically it's another arm of the Elite making untermensch so the ubermensch can feel superior
and of course the result of that is they can abuse and eventually murder the sub-humans because well, they don't feel pain, they don't love they don't think like the uber-humans do and this makes it much easier to murder them and steal their stuff.

And it's also a way to keep bullshit artists in money and power

And for Corporations to use these scumbags to spew any lies they chose, such as covering up the fact organophosphates are about the most harmful chemicals known to man and trigger illnesses like M.E. (IMHO M.E> itself, per se is infection triggered, but almost damn same thing is caused by organophosphates as it's all some similar autoimmune issue. See Gulf War Syndrome, farmers and passers-by poisoned by pesticides, aircrew and passengers poisoned by organophosphate in aircraft lubricants etc)

The Science Media Centre is only a few steps off the Nazi propaganda crap that made Jews, Gypsies etc to be sub-human by "Science!"
same with the Soviet Union in it's dark days etc.

please note, when I use "Science!" in that kind of way, it's in a theatrical, ludicrous way because it's the way these wahoos and their overlords use it, you know?
If you've played "Fallout New Vegas", you get the most WONDERFUL way of it being expounded by the mad robobrain Scientists in "Old World Blues", as often, fiction does the best damn way of showing such stuff up

When I think of the "psychs" this is what I think of them at times...lol

 

[sarah darwins]

@SilverbladeTE — I think you might enjoy this 2014 blog post by a British GP who blogs as Dr No. I think it's safe to say he's not a fan of behaviourists or their cure-all CBT:

http://www.badmed.net/bad-medicine-blog/2014/07/all-watched-over-behaviourists-cognitive-grace.html

CBT is at best patronising junk, at worst a con, a sort of cognitive lobotomy that tricks patients into thinking they are better when they are nothing of the sort. Life is still shit, but the CBT victim is now moronically happy in their pile of shit.

Discontents and malcontents alike could be cognitively lobotomised to a condition of moronic delusional happiness ... ‘a result’ on a mass scale, a populace of happy morons all watched over by behaviourists of cognitive grace.

 

[SilverbladeTE]

@SilverbladeTE — I think you might enjoy this 2014 blog post by a British GP who blogs as Dr No. I think it's safe to say he's not a fan of behaviourists or their cure-all CBT:

http://www.badmed.net/bad-medicine-blog/2014/07/all-watched-over-behaviourists-cognitive-grace.html

Yeah
It's an old standard trick used by religious fakes for centuries

"Life's crap but feel good about it! Who cares if the king has all that wealth, be happy!
That'll be 2 silver coins for your enlightenment!"

 

[chipmunk1]

CBT is at best patronising junk, at worst a con, a sort of cognitive lobotomy that tricks patients into thinking they are better when they are nothing of the sort. Life is still shit, but the CBT victim is now moronically happy in their pile of shit.
Discontents and malcontents alike could be cognitively lobotomised to a condition of moronic delusional happiness ... ‘a result’ on a mass scale, a populace of happy morons all watched over by behaviourists of cognitive grace.

If CBT made people delusionally happy it would at least be good for something. I doubt it does even this.

In my opinion It makes people think they are happy or improved or report they are happy while objectively very little has changed. This change doesn't last however and soon they will find themselves as bad as ever blaming themselves for their situation..

Personally I would prefer religion over CBT. The former is at least not so incredibly superficial.

 

[moosie]

This from the German Science Journalists' Association, in a critical article about the proposed setting up of a SMC in Germany (in German I'm afraid):

http://www.wpk.org/quarterly/einzelartikel/das-britische-science-media-centre-(smc)-und-was-wir-davon-lernen-koennen.html

The interesting bit is here:



Apart from the Wellcome Trust, in whose offices the SMC resides and who finance 30% of the SMC's budget, no sponsor may contribute more than 5% of the annual budget. These financial limits are to guarantee the operative independence of/from individual sponsors. On its website the SMC-UK lists 97 sponsors (a link which unfortunatey no longer leads to the list of sponsors).

On the SMC's website:

http://www.sciencemediacentre.org/about-us/

it says



and at the bottom:



How very cosy it must be at 215 Euston Road. Pity none of the links to "funding" on the SMC website work.

I still get a list of sponsors - unless I misunderstand what you mean which is more than likely I enclose a pdf in case it's of interest. Not quite complete as you will see - computer not working properly.

 

[TiredSam]

Thanks @moosie, you understood correctly, that's exactly what I couldn't see. I wonder why Queen Mary's stopped contributing?