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NICE remove M.E. from neurological listings (UK)

Snowdrop

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Under this new Neurology parent class, it is proposed to relocate or dual locate a list of “functional disorders” (Functional paralysis or weakness; Functional sensory disorder; Functional movement disorder; Functional gait disorder; Functional cognitive disorder et al.) which in ICD-10, were classified under Chapter V Dissociative [conversion] disorders section.
Good grief. this sounds like an opportunity for psychiatry to be parent to the whole range of human sicknesses.
I wonder if they're even now constructing a foray into the world of veterinary medicine.

* With my apologies for inserting what's obviously not serious into a well written/documented serious discussion. I can only say hyperbole helps keep me sane.
 

Esther12

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Yes, I think if the Forward ME Group cannot persuade NICE to return ME/CFS to neurology it would be sensible to place it in a multisystem disease section - where it could be joined by some other medical conditions that don't easily fit into any definite -ology.
Is it the case that ME/CFS has been singled out because of that paper, or that NICE have decided to re-classify lots of illnesses into some new 'multisystem' category? If ME/CFS has been singled out then I think that it's important to try to find out who was responsible for this, and what exactly their reasoning was.

If NICE is in denial about the ways in which the efficacy of CBT/GET has been misrepresented to patients, and the problems around informed consent and ME/CFS, then they need to keep being pushed to understand and recognise this, as this is such an important part of why these sorts of classifications matter so much to patients imo.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Snowdrop, Prof Peter D White has publicly called for the merging of the ICD Mental and behavioural disorders chapter with the Diseases of the nervous system chapter.

There is no evidence from ICD Revision documents and meeting materials that ICD Revision Steering Group are actively considering his proposal.


There is currently no inclusion within any chapter of ICD-11 for a specific parent class for “Functional somatic syndromes,” or “Functional somatic disorders” or “interface disorders” under which, conceivably, those who consider CFS, ME, IBS and FM to be “speciality driven” manifestations of a similar underlying functional disorder might be keen to see these terms aggregated.

During the presentations on Functional Disorders given at the Danish Parliament (March 19, 2014), Prof Fink is reported as having said that he and his colleagues had tried to get WHO to incorporate a section for a special group of disorders where BDS could be placed that was located neither in psychiatry nor in general medicine, but had not been successful.

Rief and Isaac (September 2014) argue that both the Fink et al BDS concept and the FSS concept are problematic in terms of justifying their placement within the mental disorders sections of classification systems.

 

chipmunk1

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Prof Fink is reported as having said that he and his colleagues had tried to get WHO to incorporate a section for a special group of disorders where BDS could be placed that was located neither in psychiatry nor in general medicine, but had not been successful.
sounds like Fink et al are the most dangerous group at the moment
 

Bob

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The MEA is playing a very active role within the Forward ME Group in trying to not only get a new NICE guideline in place but also in trying to get ME/CFS indexed to a suitable place on the NICE website if we are not going to be able to persuade them to use the neurological section

I also don't think you appreciate all the peripheral work that 'goes on behind the scenes' at the Forward ME Group - not only in relation to a number of issues relating to NICE at the moment but some of the other actions I/we are involved with in relation to obtaining proper recognition of ME/CFS as a complex multi system neuroimmune disease.

This week, this has also included writing to the editors of a very well known medical textbook with a long critique of the entry on ME/CFS - but that doesn't receive any publicity.
Thanks for doing all this, Charles. It takes an enormous amount of thankless work to try to effect change behind the scenes.
 

Bob

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@charles shepherd, do you think there's a chance that NICE might attempt to categorise ME/CFS as one of the synonyms for a psychiatric illness (i.e. a label that fits their bio-psycho-social model) such as Somatic Symptom Disorder or Persistent unexplained physical symptoms (PUPS) or Medically Unexplained Disorders. Perhaps worth being on your guard for this?

There are many synonyms and many closely related supposed disorders.
I've collated a list of them (the ones I'm aware of) here in case helpful:
http://forums.phoenixrising.me/index.php?threads/psychosomatic-disorders-synonyms.23109/
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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sounds like Fink et al are the most dangerous group at the moment
Fink, Rosendal, Henningsen are seeking the roll out of further BDS clinics in Denmark and (with Creed) have discussed at EACLPP workgroup meetings whether the MH chapter of ICD-11 would be a better place to locate the so called FSSs:

"...Organisation of services: Splitting or lumping? We are in danger of having
separate clinics for chronic fatigue syndrome, chest pains, fibromyalgia
etc etc. we need to develop best practice - and join up these different
clinics and get them more centrally placed on the agenda - make them more
visible to all specialists...

...We should find out whether the WHO group for classification of somatic
distress and dissociative disorders will provide a better diagnostic system
for these disorders."

Source: Notes from EACLPP Workgroup meeting in Budapest July 2011: http://www.eaclpp.org/tl_files/content/eaclpp/Working%20Groups/EACLPP_WG_Medically_Unexplained_Symptoms_Budapest_2011.pdf

------------------------------

Dr Rosendal is a member of the ICD-11 Primary Care Consultation Group (chair, Prof Sir David Goldberg). She is also a committee member of WONCA.*

*Dr Marianne Rosendal (Department of Public Health, Aarhus University), who has published with Prof Per Fink, is the European representative on WONCA’s International Classification Committee. The vice-chair of the PCCG is Dr Michael Klinkman, a GP who represents WONCA (World Organization of Family Doctors). Dr Klinkman is current convenor of WONCA’s International Classification Committee (WICC) that is responsible for the development of ICPC-2.

When the key Lam et al paper was published in 2012, Dr Rosendal's influence was evident.

The proposals of the Primary Care Consultation Group (PCCG) presented a disorder construct that had strong congruency with Fink et al's BDS but which the PCCG proposed to call "Bodily stress syndrome" (BSS).

In 2012, the PCCG's tentative criteria proposals could not be described as a "pure" BDS disorder construct since the criteria had included some SSD like psychobehavioural features. But they drew heavily on the BDS construct and criteria.

However, the term and disorder construct that has been entered into the ICD-11 Beta draft is "Bodily distress disorder" (BDD) which is a divergent disorder construct, conceived by the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) working group.

The S3DWG's Bodily distress disorder (BDD) construct is the term and disorder concept that has been entered into the ICD-11 Beta drafting platform since 2012. In 2014, Definitions were inserted for the three, coded, severity specifiers.

As conceptualized by the S3DWG, Bodily distress disorder with three severity specifiers (Mild; Moderate; Severe) is proposed to replace the seven ICD-10 Somatoform disorders categories between F45.0 to F45.9, and also subsumes ICD-10's F48.0 Neurasthenia.

The Definition and characterization for the S3DWG’s Bodily distress disorder is drawn from the BDD disorder descriptions in the key Creed, Gureje (2012) paper: Emerging themes in the revision of the classification of somatoform disorders (behind a paywall).

In the context of ICD-11 usage, the S3DWG's “Bodily distress disorder” has stronger conceptual alignment and criteria congruency with DSM-5’s Somatic Symptom Disorder and poor conceptual and criteria congruency with Fink et al’s (2010) “Bodily Distress Syndrome.”

Fink et al's BDS and DSM-5's SSD are fundamentally different disorder constructs; they have different characterizations, very different criteria and capture different patient populations.

There is immediate potential for confusion, here, because the terms “Bodily distress disorder” and “Bodily distress syndrome” are already used interchangeably, in the field, by researchers and clinicians when referring to Fink et al's, already operationalized, BDS.

I have proposed to ICD Revision that consideration should be given to changing the proposed disorder name for the S3DWG’s disorder construct and this has also been discussed with ICD Revision's, Dr Geoffrey Reed.

There may be intellectual property issues around ICD-11 using the DSM-5 disorder name "Somatic symptom disorder" for its proposed replacement construct for the ICD-10 Somatoform disorder categories which may preclude use of an identical criteria set.

But those with a good understanding of the already operationalized BDS criteria and who have scrutinized the Lam et al (2012) paper will note that the BSS criteria (as proposed in 2012) draw heavily on the Fink et al, 2010, BDS construct and criteria).

They will grasp that the BDD disorder construct, as defined by the S3DWG working group in the Beta draft and in the paper by Creed, Gureje (2012), describes an SSD like construct.


How is the S3DWG’s BDD conceptualized?

The S3DWG’s BDD eliminates the requirement that symptoms should be “medically unexplained” as the central defining feature.

Instead, the focus is on identification of positive psychobehavioural responses (excessive preoccupation with bodily symptoms, unreasonable illness fear, frequent or persistent healthcare utilization, activity avoidance for fear of damaging the body) in response to any (unspecific) persistent, distressing, single or multiple bodily symptom(s), and resulting in significant impairment of functioning or frequent seeking of reassurance.

The diagnosis makes no assumptions about aetiology, and in “[d]oing away with the unreliable assumption of its causality, the diagnosis of BDD does not exclude the presence of depression or anxiety or of a co-occurring physical health condition.”

The S3DWG’s BDD has no requirement for symptom counts, symptom patterns or symptom clusters from body or organ systems.

All of which describes a disorder framework with good concordance with DSM-5 Somatic Symptom Disorder (SSD).


According to the disorder descriptions, BDD’s three severity specifiers are proposed to be characterized on the basis of the extent to which psychobehavioural responses to persistent, distressing bodily symptom(s) are perceived as excessive or maladaptive, and on the degree of impairment, not on the basis of the number of symptoms, or symptom patterns or clusters, or number of body or organ systems affected.

In comparison, psychobehavioural responses do not form part of Fink et al’s (2010) Bodily Distress Syndrome criteria. Fink's BDS’s criteria, and its two severities are based on symptom patterns from body systems (a BDS Modest, single-organ type and a BDS Severe, Multi-organ type).

The S3DWG's BDD proposals appear to have good alignment with the DSM-5's SSD construct, facilitating harmonization between DSM-5 and ICD-11. Being based on positive psychobehavioural features, BDD should not present problems for placement within a mental disorder chapter.

According to ICD's Dr Reed (July 2014):

ICD Revision are currently involved in testing the primary care group's proposals in this area in primary care settings around the world, in part to compare how they work with the proposals of the Working Group on Somatic Distress and Dissociate Disorders. Whether the primary care proposal ends up capturing specific groups of patients in primary care who are likely to have underlying medical conditions will certainly be one of the issues for examination and further discussion...

Dr Reed also said that further modifications of the proposals in the areas of interest to me will be based on data, and justifications made available. In due course, ICD Revision will make more detailed diagnostic guidelines for all Mental and Behavioural Disorders areas available for review and comment before they are finalized, but they are not yet ready to do that and that he will notify me when that occurs, but he anticipated this will be before the end of the year.


So, two working groups and two sets of divergent proposals for a potential replacement for ICD-10's Somatoform disorders and it is the proposals of the S3DWG for an SSD like "BDD" that are entered and defined in the Beta draft - not a BDS like construct or a hybrid of SSD and BDS.

I shall be expanding on these two sets of proposals in Part 3 of my report.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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@charles shepherd, do you think there's a chance that NICE might attempt to categorise ME/CFS as one of the synonyms for a psychiatric illness (i.e. a label that fits their bio-psycho-social model) such as Somatic Symptom Disorder or Persistent unexplained physical symptoms (PUPS) or Medically Unexplained Disorders. Perhaps worth being on your guard for this?

There are many synonyms and many closely related supposed disorders.
I've collated a list of them (the ones I'm aware of) here in case helpful:
http://forums.phoenixrising.me/index.php?threads/psychosomatic-disorders-synonyms.23109/

Bob, whilst the term Persistent unexplained physical symptoms (PUPS) is already being used by Vincent Deary and some others, the DSM-5's SSD is a disorder construct that can be applied as a "bolt-on" mental disorder diagnosis to patients with any diagnosed disease or disorder - heart disease, cancer, MS, diabetes, CFS, IBS, chronic pain disorders, angina, COPD etc.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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@charles shepherd, do you think there's a chance that NICE might attempt to categorise ME/CFS as one of the synonyms for a psychiatric illness (i.e. a label that fits their bio-psycho-social model) such as Somatic Symptom Disorder or Persistent unexplained physical symptoms (PUPS) or Medically Unexplained Disorders. Perhaps worth being on your guard for this?

There are many synonyms and many closely related supposed disorders.
I've collated a list of them (the ones I'm aware of) here in case helpful:
http://forums.phoenixrising.me/index.php?threads/psychosomatic-disorders-synonyms.23109/
Bob, SSD eliminates the requirement for somatic (bodily) symptoms to be "medically unexplained" and its criteria are based on positive psychobehavioural responses - excessive or maladaptive responses to one or more (unspecified) persistent, distressing bodily symptoms, which can occur in the presence of diagnosed general medical diseases or conditions.

The field trials for [C]SSD used three study arms - a cancer or coronary disease patient group; patients Dx with IBS or chonic widespread pain; a healthy control group.

I don't think NICE would be looking to list CFS and ME under SSD (a term which has not been adopted by ICD-10 and a term which has not been proposed by ICD-11 Revision (though one of the working groups has proposed an SSD like construct, but under another name), but for which Dr Reed has suggested inserting exclusions for the terms of interest to us.

The SSD criteria are specific to (and the copyright of) APA's DSM-5.
 
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Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Mayo Clinic presentations on DSM-5's Somatic Symptom Disorders (Mayo did the [C]SSD field trials and the chair of ICD-11's Revision Steering Group is Mayo's Medical Informatics specialist, Dr Christopher Chute):

Somatic Symptom Disorders Part I: New Terminology for New Concepts:

http://medprofvideos.mayoclinic.org...rders-part-i-new-terminology-for-new-concepts

9 mins from start - comparing DSM-5's new framework that has replaced the DSM-IV's Somatoform disorders section with proposals for the ICD-11 Beta draft.

Note that the presenter is correlating DSM-5's SSD with ICD-11's Bodily distress disorder (the term entered and defined in the ICD-11 Beta draft, not with Bodily stress syndrome (the term and disorder construct proposed by the Goldberg led, Primary Care Consultation Group) or with Fink et al's BDS.

also:

Somatic Symptom Disorders Part II: Core Features and Treatment:

http://medprofvideos.mayoclinic.org...disorders-part-ii-core-features-and-treatment

Somatic Symptom Disorders Part III: Fallacy of Medically Unexplained Thinking:

http://medprofvideos.mayoclinic.org...iii-fallacy-of-medically-unexplained-thinking

Edited to add:


In September, Professor Oye Gureje, who chairs the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG), presented on

“Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders”


as part of series of symposia on the development of the ICD-11 chapter for mental and behavioural disorders, at the World Psychiatric Association XVI World Congress, in Madrid, Spain, 14–18 September 2014.

I have asked the WPA and ICD Revision if slides/transcript of these symposia can be placed in the public domain, since no recent progress reports have been published by either the S3DWG working group or the Primary Care Group.
 
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Bob

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I don't think NICE would be looking to list CFS and ME under SSD (a term which has not been adopted by ICD-10 and a term which has not been proposed by ICD-11 Revision (though one of the working groups has proposed an SSD like construct, but under another name), but for which Dr Reed has suggested inserting exclusions for the terms of interest to us.
Thanks Suzy. There are a load of synonyms for psychosomatic disorders (but they don't refer to them as 'psychosomatic' disorders these days) and I'm not up-to-date about what is the current favoured terminology, or how they are precisely used in psychiatry. I used the terms "Somatic Symptom Disorders", etc, simply as examples of the type of thing that perhaps they might try to befuddle us with, and foist upon us. I wondered if perhaps we need to be on our guard about them proposing a category along those lines. Historically, there seem to be many such labels for them to choose from, but I'm not sure what is in current use. Thank you for explaining how some of them are currently used.
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
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Thanks Suzy. There are a load of synonyms for psychosomatic disorders (but they don't refer to them as 'psychosomatic' disorders these days) and I'm not up-to-date about what is the current favoured terminology, or how they are precisely used in psychiatry. I used the terms "Somatic Symptom Disorders", etc, simply as examples of the type of thing that perhaps they might try to befuddle us with, and foist upon us. I wondered if perhaps we need to be on our guard about them proposing a category along those lines. Historically, there seem to be many such labels for them to choose from, but I'm not sure what is in current use. Thank you for explaining how some of them are currently used.

Bob,

The DSM manual of mental disorders is used in the U.S. more than it is used in the UK.

The most recent edition, DSM-5, was published in May 2013 and replaced DSM-IV. It is owned and published by the APA and AP Publishing Inc. It is a commercial product for psychiatrists and allied professionals and the DSM and its associated publications generate a good deal of income for the organization and its publishing arm.

SSD replaced several of the DSM-IV Somatoform disorder categories (which had had some correspondence with the various Somatoform disorders category terms in ICD-10, though their criteria were not identical and there were some other discrepancies between this section of the two classification systems) with a single, new, DSM diagnostic category.

When the U.S.'s ICD-10-CM implements, in October 2015, it will contain all the ICD-10 Somatoform disorders, so it will still be possible for U.S. professionals to code for the ICD Somatoform disorder terms, rather than use the new SSD diagnosis, if they prefer (though the majority of U.S. mental health professionals use the DSM - not ICD-9).

DSM-5 disorders are cross walked to the ICD-9 and ICD-10-CM mental disorder category codes because an ICD code is mandatory in the U.S. for billing and records.

So although a DSM mental disorder may be assigned to a patient, it will be cross-walked to the nearest equivalent ICD-9 code for billing purposes.

DSM-5's SSD is cross walked to ICD-9 and ICD-10-CM's "Undifferentiated somatoform disorder" (ICD-9 code 300.82; ICD-10-CM code F45.1) as the nearest equivalent ICD code in U.S. use.

In October 2016, it is likely that the DSM-5 term "Somatic symptom disorder" will be approved for insertion into ICD-10-CM as an inclusion term under F45.1: Undifferentiated somatoform disorder. It can't be added now because of a partial code freeze on the ICD-10-CM codes.

But there are currently no proposals to create a unique ICD-10-CM code for SSD. If it is approved for addition to ICD-10-CM, then all the ICD Somatoform disorder codes will still be usable for diagnostic and coding purposes, according to clinician preference.

ICD-10-CM has not been developed by WHO, Geneva. The U.S.'s NCHS and CMS are responsible for its development and it has been adapted (with WHO's permission) from ICD-10.

So NCHS can insert SSD if they wish and CDC has worked with APA around the proposed incorporation of several new DSM disorder terms into the ICD-10-CM. (Some of which are also being added to ICD-11.)

There is no SSD in the ICD-10 version that is used in the UK and by other WHO member states. SSD only exists as a disorder within the APA's DSM-5.

Somatic symptom disorder is just one of the new categories in the new DSM-5 section called "Somatic Symptom and Related Disorders" and it has specific disorder characterization and specific criteria, which are owned and copyrighted by DSM-5 and will be used both in clinical and research settings.

The SSD diagnosis cannot be considered a "synonym" for other disorder names like MUS or the more recent, PUPS, and they are different constructs to SSD (which has dispensed with the requirement for symptoms to be "medically unexplained").

Fink's BDS has operationalized criteria that are already being used in both clinical settings and in research studies, which are quite different to SSD. (Fink, Creed and Henningsen acknowledge in publications and at conferences that BDS and SSD are very different concepts, with very different criteria, and capture different patient populations.)

So SSD means something very specific; it has a specific disorder description, characterization and criteria (as do the various Somatoform disorders categories in DSM-IV and in ICD-10).

Whereas, FSS is an umbrella term (see the August 2008 Special Report co-authored by Javier Escobar, MD, and Humberto Marin, MD, for Psychiatric Times: Unexplained Physical Symptoms What’s a Psychiatrist to Do?, for a considerable list of so called FSSs.)

So while there may be some concern over whether NICE might intend to have CFS and ME searchable on its site under a heading like MUS, PUPS, FSSs, or under Multisystem disorders or Long term conditions or under All the stuff that doesn't fit under our existing section headings, it is unlikely that SSD would be used as a section heading under which to collate existing CFS/ME related documents, the CFS/ME Pathway, the G53 Guideline and other resources because SSD is a specific, single, DSM-5 diagnostic disorder construct with specific, copyrighted criteria, and which can be applied to all patients regardless of symptom aetiology, whether medically explained or "medically unexplained."

For the record, this is the framework for DSM-5's Somatic Symptom and Related Disorders section which replaces DSM-IV's Somatoform Disorders. Each category has discrete disorder descriptions and criteria:

http://www.psychiatry.org/file library/practice/dsm/dsm-5/dsm-5-toc.pdf

Somatic Symptom and Related Disorders

Somatic Symptom Disorder
Illness Anxiety Disorder
Conversion Disorder (Functional Neurological Symptom Disorder)
Psychological Factors Affecting Other Medical Conditions
Factitious Disorder
Other Specified Somatic Symptom and Related Disorder
Unspecified Somatic Symptom and Related Disorder
 
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Thanks for doing all this, Charles. It takes an enormous amount of thankless work to try to effect change behind the scenes.
My money is still on NICE arranging for the ME/CFS guideline to be accessed under a neutral heading, possibly using its own title

But this will take time to organise

Given what has happened so far, and the subsequent acceptance by NICE that ME/CFS should not come under a mental health heading, I would be surprised if it does now end up under some form of mental health heading
 

A.B.

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I wouldn't be surprised if the new category ends up with a name designed to give the false impression that its seen as physical illness while the treatment is psychobabble as usual. It's funny how the term psychological and psychosomatic have acquired such a bad reputation. How is changing the name not meant to deceive patients? Kind of like a shady company that regularly changes its name rather than the business model responsible for the bad PR.
 

ukxmrv

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My money is still on NICE arranging for the ME/CFS guideline to be accessed under a neutral heading, possibly using its own title

But this will take time to organise

Given what has happened so far, and the subsequent acceptance by NICE that ME/CFS should not come under a mental health heading, I would be surprised if it does now end up under some form of mental health heading
I think that would be a bad move. The new heading would become the dumping ground for unexplained diseases and a default for medically unexplained diseases. What was chosen as the heading would be adopted into the language of the psychiatric lobby.

NICE needs to add CFS/ME back to the Neurological heading. Accepting a substitution would be a disaster for patients.
 

chipmunk1

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the evolution of psychosomatic syndromes:

1. Hysteria - Your disease is being female.

2. Psychosomatic disorder - We invented a fancy word for it and we are proud of it.

We need to psychoanalyze you to understand what is going on.

3. Bio-Psycho-Social Model - Better not tell people it's psychological put Bio first to stress that we take them seriously.

We pay attention to both body and mind but you'll need lots of talk therapy to understand the concept.

4. Bodily distress illness - Better not mention the word psycho as people will think we're quacks or psychos, put body first to make them believe we take them seriously.

Brain and body are connected and interrelated in many complex ways. It's not in your head. Strangely behavioral therapy is the only treatment that works.

5. Bodily-Physiological-Organo-Corpus-Physical-Functional-Syndrome - We are no longer psych quacks. Trust us.

You need a lot of physical treatments such as CBT(Cognitive Body Therapy) to get better
 
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