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Book published this week in UK referring to ME as psychosomatic

Messages
1,446
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We do ourselves no favours by buying into and perpetuating the terminology ‘Medically Unexplained Symptoms, or ‘MUS’

The term Medically Unexplained Symptoms (MUS) is historically (and currently) favoured by Sharpe, Stone, Wessely, Fink, Creed, Aylward (UNUM), etc, and used interchangeably with ‘Functional’, or ‘Functional Syndromes/Functional Somatic Syndromes’, which is an alternative term for ‘Psychosomatic-but-we-don’t-want-to-say-so’ ’.


The treatment is always CBT.

The above named parties have been perpetuating such semantic gymnastic double speak for decades (a practice which could be termed ‘Obscuring By Language’, or ‘OBL’.)



~~~~~~~~~~~~~~




http://www.iapt.nhs.uk/silo/files/medically-unexplained-symptoms-postive-practice-guide-2014.pdf


NHS Guide



Improving Access to Psychological Therapies. IAPT.




Medically Unexplained Symptoms/ Functional Symptoms


Positive Practice Guide



1.5

A recent systematic review of the economics of MUS found two main results: first, medically unexplained symptoms cause direct excess treatment costs per patient (between 432 and 5,353 USD per annum); second, interventions targeting GP’s diagnostic and patient management skills as well as CBT for patients have the potential to improve patients’ health status and to reduce costs
(3)

.

2.2.4

The term may appear dismissive and provides the message that nothing can be done. This is inaccurate as there are evidenced based approaches which show that methods such as CBT and graded exercise are effective treatments for these conditions.




2.2.5

Similar approaches also assist patients with well recognised medical conditions reduce the severity of symptoms and disability associated with the symptoms. Therefore the fact that psychological treatments works does not mean that the illness is psychological.



2.3

The IAPT MUS Task and Finish group strongly advises that when engaging or treating patients, the term MUS is not used. The experience of experts working in this field is that where possible patients should be given a specific diagnosis of a syndrome which describes their central symptom(s) without inferring that the aetiology is psychological. Common syndromes include:


-
Fibromyalgia
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Irritable Bowel Syndrome
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Chronic Fatigue Syndrome
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Tempromandibular Joint (TMJ) dysfunction
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Atypical facial pain
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Non-Cardiac l chest pain
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Hyperventilation
-
Chronic Cough
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Loin Pain haematuria syndrome
-
Functional Weakness / Movement Disorder
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Dissociative (Non-epileptic) Attacks
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Chronic pelvic pain/ Dysmenorrhoea




2.4
Many of these conditions have published diagnostic criteria which can be used in diagnosis


6. Stone, J., Wojcik, W., Durrance, D., Carson, A.,Lewis, S., MacKenzie, L., Warlow, C.P., Sharpe, M
What should we say to patients with symptoms unexplained by disease? The "number needed to offend". BMJ 2002;325;1449-1450


7
Creed, F., Henningsen, P., & Fink, P. (2011).
Medically unexplained symptoms, somatisation and bodily distress. Cambridge: Cambridge University Press.




Other terms in use which appear more acceptable to patients include persistent physical symptoms or functional syndromes/symptoms (FS)
(8)


The term “functional” here is used because it is assumed that the disorder is one of function, which may be physical and/or psychosocial function, rather than anatomical structure.


Sharpe (9) likens this distinction to a car that needs tuning rather than a car which has mechanical damage. More recently, physiologically explained symptoms have also proposed as an alternative. For the rest of this paper we will refer to functional symptoms or syndromes (FS) rather than MUS.


8
Stone, J., Wojcik, W., Durrance, D., Carson, A.,
Lewis, S., MacKenzie, L., Warlow, C.P., Sharpe, M
What should we say to patients with symptoms unexplained by disease? The "number needed to offend". BMJ 2002;325;1449-1450


9
Sharpe, M. (2000). Functional somatic syndromes: Etiology, diagnosis and treatment by Peter Manu (book review). Biological Psychology, 53, 93-97
.
 
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TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
I feel ill just reading that.

medically unexplained symptoms cause direct excess treatment costs per patient (between 432 and 5,353 USD per annum)

So any treatment a doctor gives to try and help an ME sufferer with their symptoms is an "excess treatment cost"?

That horrible phrase implies that any treatment that isn't CBT is a waste of money, and that doctors should stop wasting their time and money on ME patients and just send them to the shrink. And that's an official NHS treatment guide?

I am not a car that needs tuning. I am a car that needs to drive over Sharpe, Stone, Wessely, Fink, Creed and Aylward, then put myself into reverse and do it again.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
The experience of experts working in this field is that where possible patients should be given a specific diagnosis of a syndrome which describes their central symptom(s) without inferring that the aetiology is psychological.

So decide what's wrong with your patient, then lie to them in a disrespectful, dismissive and patronising manner, pretending you take them seriously. This ensures that they have no opportunity to challenge / discuss / comment on / express an opinion on your diagnosis. This approach is based on "the experience of experts working in this field" - or in other words is a habit some psycho-cronies have got into to make sure their myth-based diagnosis is not challenged. Now it's NHS policy.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Medically unexplained symptoms are a fact of medicine, and I do not think we can hope to make any dint on the terminology. What is important is changing the perception of what that means. "I don't know" is not the same as "I can make an unsubstantiable guess". Its also very important to demonstrate two things:

1. Over time MUSes get identified, and they are no longer unknown.
2. Many diseases are unexplained that are not considered MUSes. Many MUSes have verifiable pathophysiology that is accepted as causing certain symptoms, such as with ME. Physically verified pathology driving symptoms leaves little room for psychobabble.
 

nasim marie jafry

Senior Member
Messages
129
It is well written with one exception. She mentions in the chapter entitled “Rachel” that she is wary of including ME/CFS (Chronic Fatigue Syndrome) into a book on psychosomatic illness. She has good reason. The ME Association have quite rightly pointed out that it does not mention research in the last year which has indicated patients may have abnormalities in their blood cells and Cerebrospinal fluid(CSF) which suggest that is it is a genuine organic illness. A recent report by the US Institute of Medicine backs this up.

@Seanko I have known since the day I got ill that I am physically ill (autumn 1982, with what was later discovered to be Coxackie B4 virus, there was an outbreak in west of Scotland). Getting more and more ill, I was eventually diagnosed 18 months later with ME by Prof Peter Behan, consultant neurologist - then Doctor - who, as I am sure you know, wrote the preface to Melvin Ramsay's 1986 text: Myalgic Encephalomyelitis and Postviral Fatigue States.

Ramsay and Behan were two of the experts on ME in eighties in UK and yet O'Sullivan whitewashes Ramsay-ME out as if it doesn't exist, preferring to refer to Wessely in early nineties as some kind of god of 'CFS'.

Her lack of clinical experience of pwME is horribly obvious.

And I disagree the book is well written, it is plodding and toneless, it sounds as if she is dictating her patients' notes into a tape-recorder. I already noted that this is perhaps a kind of clinical constraint. I have had a library copy for three weeks and have forced myself to try to read the rest. Not exactly a page turner, all the 'characters' sound the same.

Her main offence though is her abject ignorance about ME and her parading her own beliefs like some kind of lowbrow celebrity doctor. She has done herself no favours. How anyone can take her seriously is beyond me. I would love to know how this book was pitched and marketed in the first place.

My original review is here: http://www.amazon.co.uk/gp/customer.../ref=cm_cr_pr_rvw_ttl?ie=UTF8&ASIN=0701189266
 

Seanko

Senior Member
Messages
119
Location
Swindon, UK
@nasim marie jafry

What is needed is better coordinated media strategy from the ME/CFS charities in the UK to discuss the disease accurately. It requires a high level researcher eg Prof Julia Newton or Jonathan Edwards to do more approbate media work in conjuction with patient gorups.

Without such an experienced person from a major university any media work lacks credibility.

In the US Jarred Younger & Mady Horning both speak well abut the illness, there is a lack of an equivalent person in Britain.
 

Aurator

Senior Member
Messages
625
It requires a high level researcher eg Prof Julia Newton or Jonathan Edwards to do more approbate media work in conjuction with patient gorups.
The problem is not only that that is not their job, but that the media will only listen if the media are interested, and the media have shown themselves, understandably, to be more interested in stories about ME being a malingerer's disease or a mental illness than stories that communicate the dry scientific facts of the matter.
Her lack of clinical experience of pwME is horribly obvious.
Yes, horribly and contemptibly.
The following quote from a recent interview reveals how ignorant she must be of the fact that ME can strike anyone, from very ordinary people to high flyers :
"Sometimes failing through illness feels better than just failing."
It's clear that her reason for despising PwME is that she sees them as sick because they are underachievers rather than as underachievers because they are sick. Even the most rudimentary research into the real people out there with ME would have shown her that this viewpoint is ludicrously untenable.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
The above named parties have been perpetuating such semantic gymnastic double speak for decades (a practice which could be termed ‘Obscuring By Language’, or ‘OBL’.)

Yes, they have become cagey with their language over time.
They now frame what they believe in words the way a teenager might answer the question 'where are you going Friday night' to their parents. For those that don't out right lie (and get caught out) it does require linguistic gymnastics. Away of saying what sounds unimpeachable while being open to a variety of interpretations.
Perhaps that doesn't sound like a big deal but the parents of the teenager might beg to differ.
How we say things can sometimes matter very much.
 

A.B.

Senior Member
Messages
3,780
It's clear that her reason for despising PwME is that she sees them as sick because they are underachievers rather than as underachievers because they are sick. Even the most rudimentary research into the real people out there with ME would have shown her that this viewpoint is ludicrously untenable.

I started having health problems as teenager. Before that I had some of the best grades in class (in the top 5%). After I got sick I failed class for 4 years in a row. A pretty terrible experience. It would not have been as bad if the possibility of illness wasn't excluded a priori due to parents having predetermined ideas about the nature of these symptoms (which they got of course from psychiatry).

Belief in psychosomatic illness is extremely destructive in my experience. Nevertheless, some people are drawn to view things from this perspective. I suspect they just like being in a position that enables them to safely point out various (mostly imaginary) personal flaws in patients. And when patients protest against these unfair attacks, the person can just say "See, your resistance is proof that you're in denial about subconsciously fabricating these symptoms". Well disguised parasites that try to make themselves feel a little better by dragging others down, that's what they are.
 
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nasim marie jafry

Senior Member
Messages
129
@Seanko Yes, I agree, we need high profile biomed researchers speaking up for us in media but the problem is that Wessely and his gang have been embedded in the media for two decades at least, and health editors - completely lacking in any scientific curiosity - have only been interested in his side the story. The 'threats' soap opera in 2011 was a perfect example of how his voice dominates UK media, and is therefore the more powerful narrative. I already posted this link yesterday on another thread, as a reminder of the hyperbole and hysteria generated by the alleged threats: http://velo-gubbed-legs.blogspot.co.uk/2011/09/threats-stunning-new-thriller-from-uk.html

I am not questioning the validity of threats, I am questioning SW parading himself across media for an entire month, knowing that all pwME would be smeared by these (alleged) acts of a tiny minority. What kind of doctor does that to his patients? We had no right of reply, most letters that we/our charities submitted to press were ignored. And his close ties with Science Media Centre means that any actual debate about ME has been pretty much suffocated. And his friends give him knighthoods and medals.

We will only win when science is so robust that SW and White and Sharpe and the merry band are wholly untenable in their views, even for a lapdog media. Science *is* slowly progressing, but we should all question just how he was enabled to have so much influence in the first place. He took ME and distorted it beyond recognition, just to accomodate his own beliefs. He is clearly backing down a little, he is a master chameleon, it is so obvious in his appearances now, he can't argue with Rituximab etc, but it is still hard to stomach the harm he and his cronies have caused in the perception of and treatment of pwME since my own diagnosis in early 1984.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Just to help in understanding the background I have attached a document relating to the science media centre and their attitude toward biomedical research.
 

Attachments

  • The Science Media Centre.pdf
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SOC

Senior Member
Messages
7,849
A certain M Condon has just published a particularly damning review, and one that is arguably more damaging to O'Sullivan than anything anyone has yet written.
https://www.amazon.co.uk/Its-All-Your-Head-Imaginary/product-reviews/0701189266/ref=cm_cr_prvoteyn?ie=UTF8&filterByStar=all_stars&voteInstanceId=R21KWCICR4XARB&voteValue=1&reviewerType=all_reviews&pageSize=10&csrfT=gM31ib5r4k1Gxlz9UaDAuddcrMQwmmXK/oDC2LUAAAADAAAAAFW8F2tyYXcAAAAA&sortBy=recent&formatType=all_formats&openid.assoc_handle=gbamazon&aToken=5|ipJIZ9qywGuadldtxDAPtXj6C5BdgodKDR2Iw7p39N5WgPMt0dR/fR9Fk+7czXLxA1nQiR49fQ2PfmaENcMyf4kvMo23Z44XXCJBTknmVrfTSLUr+5VM/NMr8zP9I7SWa06yL9w2S3M5FFCuwBcmkmD8hxqFEScAsMSeDX7d2Ni4gdZfFP5xYqFAuvLggWmy1qVgFtO0LbN98jUrZmT0WEmBzaZCVE0BMSJyVymlWHeQ+trfXvvTXR3tiRZ8jZVg8RqIBrV3l98mSsKdFUs1Wuflr4UMoqAw&openid.claimed_id=https://www.amazon.co.uk/ap/id/amzn1.account.AHPZ44KAEQMFJCHEQNDKVBL7YDJA&openid.identity=https://www.amazon.co.uk/ap/id/amzn1.account.AHPZ44KAEQMFJCHEQNDKVBL7YDJA&openid.mode=id_res&openid.ns=http://specs.openid.net/auth/2.0&openid.op_endpoint=https://www.amazon.co.uk/ap/signin&openid.response_nonce=2015-08-01T00:51:05Z4866736664071237943&openid.return_to=https://www.amazon.co.uk/Its-All-Your-Head-Imaginary/product-reviews/0701189266/ref=cm_cr_prvoteyn?ie=UTF8&filterByStar=all_stars&voteInstanceId=R21KWCICR4XARB&voteValue=1&reviewerType=all_reviews&pageSize=10&csrfT=gM31ib5r4k1Gxlz9UaDAuddcrMQwmmXK%2FoDC2LUAAAADAAAAAFW8F2tyYXcAAAAA&sortBy=recent&formatType=all_formats&openid.signed=assoc_handle,aToken,claimed_id,identity,mode,ns,op_endpoint,response_nonce,return_to,ns.pape,pape.auth_policies,pape.auth_time,signed&openid.ns.pape=http://specs.openid.net/extensions/pape/1.0&openid.pape.auth_policies=http://schemas.openid.net/pape/policies/2007/06/none&openid.pape.auth_time=2015-08-01T00:51:05Z&openid.sig=uZiST+FHr97WBQelmLMtVDptsqwEIQogUeI4Olxib3w=&serial=&
Let's all mark this as a helpful review so that it stays clearly visible.