At what point could someone with ME have somatic symptom disorder?

The fact I've been diagnosed with somatic symptom disorder got me thinking. I'm not asking for medical advice, but for general information. The current definition in the DSM-5 revolves around excessive thoughts, feelings, or behaviors related to symptoms. And it doesn't matter if these symptoms are medically explained or not. I know there's also a lot of controversy over the validity if this illness but I'm not particularly interested in that aspect.

In pwME, what level of worry or emotional distress would be considered excessive? Maybe this doesn't generalize to everyone with ME, but I'm sure many pwME experience significant emotional distress over their illness. Here are examples I'd guess are common:

Spoiler: Distressing emotions and trains of thought

• Severe and unrelenting grief. Deep sadness at losing your career, hobbies, relationships,
  
• Fears about the future. How will you survive if you get sicker/your caregiver dies/your spouse leaves/you lose disability benefits?
• Fears about health, sometimes rational, sometimes not.
  
• Difficulty managing your illness due to a mix of emotional and cognitive problems that's partly unrelated to ME, and partly secondary to having ME.
• Researching ME obsessively, but never learning much. If dozens of scientists working for decades haven't found the cause, neither will you by checking S4ME for the 5th time today. But your quest for information continues...
• The emotional effects of medical gaslighting, misdiagnosis, or inappropriate treatments.

My gut feeling is that grief and distress are the natural human reaction to having a serious illness without adequate societal support. These feelings should not be pathologized, but some pwME will need support from a counselor who believes the truth that their illness is biomedical.

 

I have seen a few people over the years who clearly are not coping well and show excessive worry. As a ratio of all pwME I would say it's less than 5%, to some degree, and less than 1% at a level where even I would recommend some counseling, although always with someone specialized in chronic illness and has lived experience. And all of it is clearly as a direct result of gaslighting and neglect amplifying the consequences of illness, or at least made far worse by it. If you skip the whole discrimination, you avoid most of the consequences.

However most of the features listed above are normal and expected, the only reason they are labeled as excessive is from professionals who dispute the illness. Although frankly some of this is basically the same old caricature of histrionics from "worried well" and are simply not realistic. You see the exact same behaviors with bigots, who can't stop bullying their target of hate but will always label themselves as the real victims.

The "not learning much" is rich coming from people who have "worked" at this for years and learned nothing. Especially as they keep pushing the exact same nonsense while pretending it's all "brand new" and "novel".

As for the emotional effects of gaslighting and the rest, sure there's the emotional effects, but there's also the real life impacts. If your house is on fire and you call the fire department and they say they're not interested, sure there's plenty of negative emotions out of this but also: no house and everything that was in it (and maybe everyone). That's kind of important. In fact it's the most important part, but when the problem is disputed the behavior is emphasized as being wrong.

Frankly this is a useless construct invented only to provide excuses for the failures of medicine, to reassure themselves that they're doing all they can do even when they are, in fact, doing the worst possible thing. It gives social validation for failure where no one is responsible or has to do anything. Even in the very most generous interpretation of this, survival instinct alone would make worrying about health very rational. Life is flimsy, especially against disease, and not worrying about anything is how so many of our ancestors got killed and didn't leave descendants. We are the descendants of those who worried just enough about things to endure hardship and death.

 

I don't think there is any way of defining that other than by common sense. If someone is awake every night worrying about something nobody can do anything about it is reasonable to think it is not so much excessive as not useful. People obviously can get into a stew over things and sometimes viral down into a serious state.

I don't see the SSD diagnosis as meaning anything useful here. Moreover, I strongly suspect that it is used to mean something different from the way it appears in official definitions. The implication tends to be that the worry caused the symptoms. It is not a valid medical concept, to my mind.

 

All of what is on your list, is to my mind completely normal. Jonathan, Trish & rvallee all make very good points.

FWIW - For me i flip the 'its getting out of hand i need some support' switch, if i get so worried it keeps me awake & doesnt resolve with the daylight, and if research or worry start to regularly interfere with my being able to pace myself or start taking up so much of my time/energy that i am not able to do other more theraputic activities. Its about balance.

If i'm sacrificing connection with offline family/friends or the few things i am able to enjoy, then for me thats time to stop/get support.... But never ever from anyone who doesnt understand the devastation etc of ME.

The emotions are normal and the only people who think its not normal to grieve/ be furious/scared etc, are those who have no idea what our experience actually IS.

 

The problem is that there is a very thin line that separates genuinely excessive worry from normal levels of worrying that is judged excessive due to ignorance of what normal should be like in that particular situation or due not having a complete picture of the situation, or from an inability to bear witnessing another person's distress.

I find it hard to believe that this diagnosis is doing more good than harm even if attempted to be used correctly.

And the impression is that in practice it's an excuse to attribute the symptoms to anxiety.

 

Submission to the third DSM-5 stakeholder comment period in response to proposals for J 00 Somatic Symptom Disorder, Suzy Chapman, 2012

https://dxrevisionwatch.files.wordpress.com/2012/06/scdsm5sub7.pdf

Extract:

In a counterpoint response to Dr Allen Frances' May 12 New York Times Op-Ed piece, APA has stated: "…There are actually relatively few substantial changes to draft disorder criteria. Those that have been recommended are based on the scientific and clinical evidence amassed over the past 20 years and then are subject to multiple review processes within the APA."

The "Somatic Symptom Disorders" section is one section for which substantial changes to existing disorder criteria are being proposed.

The [SSD work] group reports that preliminary analysis of field trial results shows "good reliability between clinicians and good agreement between clinician rated and patient rated severity."

In the field trials for new category proposals, CSSD achieved mediocre Kappa values of .60 (.41-.78 Confidence Interval). Kappa reliability reflects agreement in rating by two different clinicians corrected for chance agreement – it does not mean that what clinicians have agreed upon are valid constructs.

Radical change to the status quo needs grounding in scientifically validated constructs and a body of rigorous studies.

• It remains a considerable concern that there is no substantial body of independent research evidence to support the group's proposals for this new construct. ​

During the Q & A session at the end of Dr Dimsdale's APA Conference presentation, a questioner raised the issue that practitioners who are not clinicians or psychiatric professionals might have some difficulty interpreting the wording of the B type criteria to differentiate between negative and positive coping strategies.*

Dr Dimsdale was asked to expand on how the B type criteria would be operationalized and by what means patients with chronic medical conditions who devote time and energy to health care strategies to try to improve their symptoms and their level of functioning would be evaluated in the field by a very wide range of DSM users and differentiated from patients considered to be spending "excessive time and energy devoted to symptoms or health concerns" or perceived as having become "absorbed" by their illness and whose preoccupations were felt to be "disproportionate."

By what means will the practitioner reliably assess an individual's response to illness within the social context of the patient's life and determine what should be coded as "excessive preoccupation" or indicate that this patient's life has become "subsumed" or "overwhelmed" by concerns about illness and "devotion" to symptoms?

By what means would a practitioner determine how much of a patient's time spent "searching the internet looking for data" (to quote an example provided by Dr Dimsdale) might be considered a reasonable response to chronic health concerns within the context of this patient's experience?

I am not reassured from Dr Dimsdale's responses that these B (1), (2) and (3) criteria can be safely applied outside the optimal conditions of field trials, in settings where practitioners may not necessarily have the time nor instruction for administration of diagnostic assessment tools, and where decisions to code or not to code may hang on arbitrary and subjective perceptions.

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*I have an unofficial transcript of this section of Dimsdale's presentation at the 2012 APA Annual Conference. I thought I'd posted in the thread: Updates on status of ICD-11 and changes to other classification and terminology systems but I've not been able to locate the post yet, though I may have posted in on the other forum, as it was 2012. I should have a copy on an older laptop.

 

RedFox, see my PM message.

 

For comparison with DSM-5's SSD criteria, disorder descriptions and diagnostic requirements:

The "Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders" aren't available yet as a publication but the CDDG disorder description texts for the WHO's "Bodily distress disorder" (which is conceptually congruent with the DSM-5 SSD construct) can be found here under the heading "Diagnostic Requirements":

https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/767044268

Extract:

6C20.0 Mild Bodily Distress Disorder

• All of the Essential Features of Bodily Distress Disorder are present.

• Although there is excessive attention to distressing symptoms and their consequences, which may result in frequent medical visits, the individual spends only a limited amount of time focusing on them (e.g., no more than one or two hours per day) and is able to focus on other unrelated topics.

• The bodily symptoms and related distress and preoccupation result in mild impairment in personal, family, social, educational, occupational, or other important areas of functioning (e.g., strain in relationships, less effective academic or occupational functioning, abandonment of specific leisure activities).

6C20.1 Moderate Bodily Distress Disorder

• All of the Essential Features of Bodily Distress Disorder are present.

• Persistent preoccupation with the distressing symptoms and their consequences are typically associated with frequent medical visits. The individual devotes a substantial amount of time and energy to focusing on the symptoms and their consequences (e.g., several hours per day).

• The bodily symptoms and related distress and preoccupation result in moderate impairment in personal, family, social, educational, occupational, or other important areas of functioning (e.g., relationship conflict, performance problems at work, abandonment of a range of social and leisure activities).

6C20.2 Severe Bodily Distress Disorder

• All of the Essential Features of Bodily Distress Disorder are present.

• Pervasive and persistent preoccupation with the distressing symptoms and their consequences and a narrowing of interests such that the bodily symptoms and their consequences become the nearly exclusive focus of the individual’s life, typically resulting in extensive interactions with the health care system.

• The bodily symptoms and related distress and preoccupation result in severe impairment in personal, family, social, educational, occupational, or other important areas of functioning (e.g., unable to work, alienation of friends and family, abandonment of nearly all social and leisure activities).

Extract:

Boundary with Normality (Threshold):

• The experience of bodily symptoms and occasional concern about them is normal. However, persons with Bodily Distress Disorder report greater distress about their bodily symptoms than would generally be regarded as proportional to the nature of the symptoms, and their excessive attention to their symptoms is not alleviated by appropriate clinical examination and investigations and reassurance by health care providers.

• Individuals with Bodily Distress Disorder who have a comorbid medical condition that may be causing or contributing to the bodily symptoms exhibit greater preoccupation with symptoms and greater functional impairment than those who have a medical condition that is similar in nature and severity without concurrent Bodily Distress Disorder. Furthermore, the number of bodily symptoms reported often exceeds that usually associated with the comorbid medical condition.

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

Note that both "Bodily distress disorder" and "Somatic symptom disorder" have been added to SNOMED CT Terminology System, with "Somatic symptom disorder" inserted under Synonym terms under SNOMED CT Concept: SCTID: 723916001 | Bodily distress disorder (disorder).

Edited to add: Note also England's IAPT service is using the SNOMED CT SSD code in its Data Set.

 

Found some of the transcribed responses to the presentation Q & A with Joel Dimsdale but I have more on file somewhere:


Presentation: The Future of Psychiatric Diagnosis: Updates on Proposed Diagnostic Criteria for DSM-5 (Part III)

Monday, May 7, 2012 at 9 a.m. – 12 noon, in Room 103B at the Pennsylvania Convention Center
Chair: Darrel A. Regier, M.D., M.P.H. Co-Chair: David J. Kupfer, M.D.

Presenters:

1. DSM-5 Proposals for Somatic Symptom Disorders
Joel E. Dimsdale, M.D.


At the end of his presentation, Dr Dimsdale, Chair of the Somatic Symptom Disorders Work Group took a number of questions from the audience around proposals for what was at that point proposed to be termed, CSSD (Complex somatic symptom disorder).

One questioner asked: Chronic fatigue syndrome has not been a part of the DSM-IV so far. Would there be any place for that in the DSM-5?

Dr Dimsdale: That's an important question. Chronic fatigue is an important, distressing, disabling condition - it is remarkably heterogeneous...remarkably heterogeneous. We feel that some patients with chronic fatigue would meet the criteria for CSSD - some wouldn't.

Questioner responds: And what would be the cut off point...or what would be the criteria to include some and exclude others?

Dr Dimsdale: Well, chronic fatigue is really almost a poster child for medically unexplained symptoms as a diagnosis - it's a very, very heterogeneous disorder and we would say that the B type criteria are defining. Now, I have friends with chronic fatigue - some of them would meet these criteria and some wouldn't - so if a person is unable to put this down or unable to get beyond the...who is just stuck with the B type considerations, we would consider that to be having CSSD.

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

When the final draft for the DSM-5 was released, the proposed name for the new diagnosis had been changed from "CSSD" to "SDD".

The number of "B type" criteria required to meet the diagnosis had also been changed - reduced from a requirement for two from the "B type" psychobehavioural responses to symptoms, to just one.

For its third draft, rather than revise in favour of less inclusive criteria, Dimsdale's work group lowered the threshold for a diagnosis of SSD, despite the considerable concerns expressed in stakeholders' submissions in the first and second review periods.

 

He is clearly an expert in the field. When asked about Chronic Fatigue Syndrome, he answers in terms of "chronic fatigue".

Perhaps this is indicative of the whole approach.

 

I will come up with a more detailed response when I have time, but this is all very informative. This further convinces me I was misdiagnosed. I always got the impression my psychologist just put that on my chart to help me get disability.

 

I've now found the other notes and transcribed extracts from Dr Joel Dimsdale's presentation at the APA's Annual Conference 2012 that I was looking for earlier today:

Somatic Symptom Disorder Work Group Chair, Joel E. Dimsdale, MD, gave an update on the progress of the SSD group at the APA's Annual Conference in Philadelphia, earlier this month [May 2012].

For testing reliability of CSSD criteria, three groups were studied for the field trials:

488 healthy people; 205 people with cancer and malignancy (some patients in this group were said to have severe coronary disease) and 94 people with irritable bowel and "chronic widespread pain" (a term used synonymously with Fibromyalgia).

It isn't clear from the limited data currently available whether the third study group (labelled the "functional somatic" study group on Dimsdale's slides) had included CFS or CF patients.

In a Co-Cure mailing of May 11 2012, I reported that at the end of his presentation, Dimsdale had been asked whether there would be any place for Chronic fatigue syndrome in the DSM-5 and what would be the criteria to include some [CFS patients] and exclude others.

In his brief response, Dimsdale says that chronic fatigue [sic] is "almost a poster child for medically unexplained symptoms as a diagnosis" and that the [SSD work] group felt some patients with chronic fatigue [sic] would meet the criteria for CSSD. But he does not clarify whether CFS or CF patients had been included within the "functional somatic" study group.

During this presentation and the Q & A session that followed, he does not draw attention to the results of the "functional somatic" group, other than mention that this third study group comprised subjects with irritable bowel and chronic widespread pain, which isn't explicit from the labelling of his slide for the unpublished CSSD field trial study data.

It strikes me as somewhat odd that although the "functional somatic" arm of the study was the group most captured by the criteria being tested and given that SSD Work Group member, Francis Creed, and his EACLPP MUS Study Group have been discussing whether a number of so-called "functional somatic syndromes" might be dragged kicking and screaming from out of their current ICD chapter locations and relocated into Chapter 5 of ICD-11, that Dimsdale spoke only about the "cancer and malignancy" group results and not at all about the third arm.

(...)

At the end of Joel Dimsdale's [JD] presentation, he is asked by a member of the audience to clarify how patients with chronic medical conditions who devote time and energy to improving their symptoms and maintaining optimum levels of functioning would be assessed under these criteria and differentiated from patients perceived as spending "excessive time and energy devoted to symptoms or health concerns."

JD replies: "...The issue is, if you have a chronic medical condition will you automatically have a psychiatric disorder? There really are a number of ways of looking at that. Number One: from a data point of view [refers to PP slide] if you look for instance ...at the first of the columns in purple - those 200 people all have a malignancy or severe coronary disease and about 15% of them in fact do meet criteria with "one of the B type criteria." If you change the threshold to "two B type criteria," that's about 10%. I think that's accurate.

"I think in fact, a lot of patients I see are in dreadful mental condition and there are a lot of patients who have dreadful diseases and they might be depressed but they're able to get on with their lives, they're concerned, they want to survive to their daughter's wedding, whatever, and yes, I'm depressed..., but they wouldn't meet the criteria and I think that's the reality. Some do, some do, and the issue is that whether or not you've got a malignancy, if your life is dominated by the somatic concerns and you cannot put it down, this is a disorder where we can help. So that's the perspective..."​

JD is then asked the question about CFS and DSM-5.

The first questioner later asks JD if he would further define Criteria B (3) "Excessive time and energy devoted to these symptoms or health concerns" and expand on how the very wide range of DSM-5 using clinicians and practitioners in the field would differentiate B (3) criteria-meeting patients from patients with chronic health conditions who are using health care strategies to improve their symptoms and level of functioning; and whether these strategies might also be viewed negatively rather than as a positive response to the management of a chronic health condition.

JD: "...I think you're asking me a couple of different questions, let me parse them apart...we all have things that go wrong with us, we all have pains, problems with or without a diagnosis and they come and go and what we are talking about is really persistent...let me operationalize that in a couple of ways; we all have patients who have dreadful, dreadful disorders of one form or another and the issue is how much they let their lives be subsumed or dominated by it.

"So is this a person who is spending all of his or her life searching the internet looking for new data, are they able to go and still have some satisfaction, some involvement, some enjoyment with their spouse and family or is their life in a shadow, dominated, absorbed with those issues. That's what we're trying to get at and it's tricky...if you have some suggestions..."​

The question raiser then expresses concern that practitioners who are not doctors or psychiatric practitioners might have some difficulty interpreting the wording of the criteria to differentiate between negative and positive coping strategies.

JD: "...we have struggled with this a lot and I wish I could say that this was gospel now...it's not. I think it is a step in the right direction.

"Also the issue is that the criteria aren't the same as the text. Criteria by definition are a succinct, condensation of what we try to portray in the text. The text will go on for five or six pages for this disorder group and we'll try to make it crystal clear. I take your point, I'll look at that section very carefully."​

Session Chair, Darrel Regier, then steps in to expand on the differences between the DSM manual text and the criteria "check lists" and that clinical training and experience in the use of the manual text are needed in order to apply the criteria.

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

As I've mentioned above, for the DSM-5's third draft, rather than revise in favour of less inclusive criteria, Dimsdale's SSD work group (which had included Profs Michael Sharpe and Francis Creed) lowered the threshold for a diagnosis of SSD, despite the considerable concerns expressed in the previous two stakeholder comment periods.

 

Looking at all these facts and definitions hasn't taught us much. My conclusion is the same as before: Whether you need psychological help depends on whether you feel the time you spend on your illness is helpful or harmful. There are multiple factors, but in general, the time I spend on my illness is probably 90% positive, 10% negative.

Personality is a factor. I'm autistic and my way of feeling in control of problems is obsessive research. Your schedule is a factor. I'd feel the need to step away if I spend hours a day reading about a minor illness I had, but when I have ME, there are massive blocks in my schedule when I'm too sick to do much. Might as well read about ME.

How it affects your mood is a factor. Learning about ME is generally a positive for me. Every week there are new papers, new articles. I can see the world moving towards a brighter future for pwME. It's slow--glacially slow--but seeing it move at all is the only shred of hope I can cling to. Advocating for ME adds meaning to my life. When all I can do is listen to a video, listening to ME researchers describe their work makes me feel safe, like someone wants to help and protect me, even if they don't know me. That's not to say it's all good. Seeing poor-quality and psychosomatic research is saddening.

There are the thoughts of grief, but I don't think I can really stop those. There's just so much that was...and isn't now. I hope that counseling helps with this.

There's also the reality that knowing what happening with ME is useful, as ME has affected so much of our lives that a small difference in how much pwME are believed or what treatments are researched could eventually make a large difference in our wellbeing.