SOMATISATION, DEPRESSION AND ME

[Marco]

Hi Marco, I have had many doctors say they can't treat CFS, don't know about CFS, don't believe about CFS or whatever. I have had three say they believe in CFS and are willing to try to help. I have only ever had one doctor who admitted he neither knew nor understood anything about it, and all he could do was help me with symptoms. I got along well with that doctor. I am far happier with a doctor who admits lack of knowledge, than a doctor who pretends to knowledge they do not have. Medicine would be far better off if "I do not know" was a part of their vocabulary. I think doctors are trained to avoid saying that, it seems a deep part of medical culture. Its something I keep thinking about and I might one day write a blog on it if I can come to a better understanding than I now have. If someone else would like to write a blog on it, I would be happy to read it. It keeps bugging me.

The point of a multidimensional mapping is for cluster analysis and related methods. Its a research tool, not really valid in a clinical setting.

Bye, Alex

The point I was hoping to make is that it is entirely possible to develop models that may adequately explain all the symptoms of ME/CFS and other 'medically unexplained diseases/syndromes' and off the top of my head Maes, Broderick, Klimas, Jason, Myhill and our own RichvanK have attempted just this.

The problem is that the medical profession (or perhaps more accurately the authorities that regulate the medical profession) has been unreceptive, preferring instead to off -load 'difficult' patients to the BPS crowd without even requiring a plausible model from them beyond vague references to 'childhood trauma' or 'coping mechanisms'.

What I'd hoped to show in starting this thread was that the last thing that a diagnosis of psychosomatic entails is evidence.

 

[czecher]

I can only respond to this post as someone who is in the midst of trying to obtain LTD coverage through my plan at work. The denial letters state that there is no objective evidence, only subjective evidence, of problems that would affect my ability to work. I have felt during the last 5 years that my problems were a result of my body's poor ability to produce, or use energy produced inefficiently; ( i.e. a mitochondrial problem). Yet, my family doctor and the rheumatologist I was referred to, keep focusing on my depression, instead of my other symptoms. It is very frustrating, as I worked in a lab setting, where I am all too aware that medicine does not have the answers to everything. I prefer to believe that a measurable abnormality will be developed at some point for CFS/ME patients. Until then, I/we will be subjected to the humiliation of sitting in our doctor's office, only to once again be told that nothing abnormal can be found in the tests they have run, and therefore it must be somatic/depression related.

 

[Enid]

Marco @ 21 - yes of course.

 

[alex3619]

Hi Marco, as I have said before the current models, and known physiology, probably explain nearly all symptoms. The BPS crowd are interested in one: fatigue. Even at explaining that they fail. Even at treating that they fail.

I think models that do adequately explain us, symptomatically, already exist. They are also merging. In time there will be no place for the BPS proponents to hide: their theories will be shown totally inadequate. The problem is that it is taking too long, millions are being harmed while we wait. This is not acceptable.

The big problem we have, despite multiple theories of causality, is that causation is not proven for any of them. The second problem is there is no accepted diagnostic tests, though quite a few are being worked on.

The multidimensional mapping was in the context of all psychosomatic illnesses, not just ME. It was, so far as I was concerned, also in the context of all the data, not just fatigue. The BPS crowd want to claim a whole lot of illnesses are the same. I am not even convinced all ME patients have the same thing.

czecher, the problem as I see it is that there are currently many abnormal findings. These however are usually tests carried out by research labs or specialist labs, which therefore are not covered by insurance. In the UK many of these tests are denied to CFS and ME patients under NICE guidelines. To compound this, if you have the tests you will probably get hit by one of two responses. The first is: I don't know what this test means, its irrelevant. The second is: this is a non-standard test. We do not recognize it.

Non-standard tests are winning disability for people in the USA but I don't know how many of them have had to go to court. Natural killer cell dysfuntion implies an aquired immune deficit (this refers both to cytotoxic capacity and bright cell to dim cell ratio). Mitochondrial dysfunction implies brain and heart dysfunctions. Repeat exercise testing showing markedly reduced capacity on repeat testing implies that effort cannot ever be sustained. High levels of serum LPS implies immunological compromise. High levels of oxidative stress imply multisystem problems. The list goes on and on. We even have a test now that is 92% diagnostic for females, but most doctors wont know it exists, and many who do don't know where to send a patient to be tested. (Tip: if you are near Harvard University, go ask Komaroff.) A list of demonstrated nutrient deficiencies includes: vitamin E, Co-enzyme Q10, L-carnitine, potassium. If you expand that to important biochemicals there are many more, including glutathione. If you add those that are probably sub-optimal it becomes a very long list.

The problem is not that there are not physical abnormalities that are considered pathological in other disorders in which they occur: there are but for some reason they are not considered pathological in ME or CFS. The problem is that no definitive theory has been accepted that explains them. We are presumed guilty until proven innocent: we are presumed well till we can be proven ill.

Bye, Alex

 

[Enid]

alex - there are no "models" - gee I wish I had a science instead of arts training - I am ill over ten years at least, and still fall down though hopefully do not pass out again. Sick of models when one presents to the ignorant medical profession (awaiting the big call up to the reality of this illness) - the suffering they have willingly embraced from pseudo science.

 

[alex3619]

Hi Enid, models of oxidative stress, mitochondrial dysfunction, and immunological dysfunction exist. The Methylation explanations are a model. A model does not mean it is proven, accepted or even real however. To do that takes a lot of science over a lot of time, then a lot of explaining in this case to doctors who don't have much interest. We will also have to convince media, government, regulators, insurance companies and pharmaceutical companies. Its a long road.

Other models include that of persistent viral infection, or distorted immunological function. These are not so well integrated with each other yet, and many are directly competing with each other I think. For example, it is not easy to reconcile a pathological model with an autoimmune model, this requires a lot of research. Neurological models I have not discussed here, but they overlap with metabolic and pathogen models fairly well, they are just not well developed as integrated models just yet. It will happen.

Treating patients based on a viral model for example can achieve results I think are an order of magnitude better than CBT/GET. Over three times as many patients respond, with over three times the degree of response. Thats a whole order of magnitude. Yet these people are operating within standard science, they are careful, and the research advances methodically though without adequate budgets.

The Myhil or Pall protocols for example are based on a model of mitochondrial dysfunction or nitrosative and oxidative stress respectively. They have overlap, and together overlap with the methylation model.

To me a model is a collection of hypotheses that interact to explain a wider set of data than a simple hypothesis covers. We are seeing one or more larger models emerge I think, and I suspect it will partly explain many more so-called unexplained syndromes than just CFS or ME. What is needed over time is a better integration of metabolic models and immunological models. That is where the models are weak currently. This takes time. Meanwhile the BPS "model" that includes CBT/GET is harming many people and costing society large sums of money without delivering cures. That is why I want to challenge them.

Psychosomatic medicine however has historically been called non-science (Karl Popper). Doctors are still taught about psychosomatic illnesses including hysteria. I have never seen evidence that any of these are real. Sure we can see examples of mass panic ... but mass hysteria? Hysteria is argued, I think (and I could be wrong) as a kind of entrenched outcome of mass panic, just as post traumatic stress is an outcome of trauma. I still see no compelling reason to believe in mass hysteria, nor any psychosomatic illness in the modern sense. There is no compelling reason to believe that our thoughts generate physical illnesses in this way. I do agree though that some "mental" illnesses, which I suspect are really brain disorders, do lead to physical symptoms, and this includes depression and anxiety. The older idea of psychosomatic was simply that physical illnesses have a mental component, its about how we think, how we feel, how we react when ill. This can have medical consequences, and I think is still valid. The modern causal interpretation of psychosomatic is what I object to. They have no objective marker, never had. There is no way to objectively test it. Its not science.

Just to clarify my position, in the case of PTSD I consider it purely organic in causation. Sure there are psychological strategies to assist coping, and they may help a lot, but so far as I am concerned the underlying problem is physical. There are also probably psychological strategies that make PTSD worse. Embracing biological explanations does not preclude the utility of psychological methods, it just means that there is no pressing reason to consider the psychology causal, so the psychology can never be presented as curative of itself without really really good evidence.

Bye, Alex

 

[Dolphin]

Thanks Dolphin

Its nice to see that there is empirical data that fully supports the research findings.

The rates of diagnosis of somatoform disorder in those clinics pretty much ranges from 0-100%.

Are you aware of any related discussion of this data?

The report has this discussion. I'm guessing you may have French as you're living in France. I'll also include the material in Dutch for those who understand that.

Les rsultats des interviews psychiatriques (pourcentages de patients pour lesquels chaque diagnostic
est enregistr) sont repris dans le tableau 32 la page 118. On remarque quil existe parfois
de grandes diffrences entre les centres, notamment en ce qui concerne les diagnostics suivants
: trouble somatisation / troubles somatoformes non diffrencis (300.81) (42% : 1-89%);
troubles dpressifs (296.xx) (13% : 0-33%); troubles anxieux gnraliss (300.02) (6% : 0-26%).

Les mdecins psychiatres des centres pensent que ces grandes diffrences entre les centres reposent
principalement sur le biais de rapport (diffrences entre les patients de la mesure dans laquelle
ils rapportent ou non certaines plaintes ou certains symptmes) et/ou le biais dinterprtation
((diffrences (idologiques) entre les psychiatres des centres en ce qui concerne certains diagnostics
finaux sur la base des symptmes constats). La littrature rvle galement dimportantes
diffrences en matire de prvalence de la comorbidit en cas de SFC. Dans une tude de Prins
et al (2005)65, on trouvait : troubles dpressifs actuels (current) chez 19% des personnes tudies
et chez 37% sur toute la vie (lifetime) ; troubles anxieux current (13%) et troubles anxieux lifetime
(20%) ; PTSD (Posttraumatic Stress Disorder) current (0%) / lifetime (1%) ; trouble somatisation
current (5%) ; autres troubles somatoformes current (8%) / lifetime (8%). Dans dautres tudes
concernant la comorbidit psychiatrique en cas de SFC, on a toutefois constat beaucoup plus
daffections psychiatriques, par exemple celle de Wessely et al (1998)66 : dpression current
(>50%) et trouble somatisation (20%).

Les diffrences les plus importantes entre les centres apparaissent au niveau de la confirmation du
diagnostic trouble somatisation / troubles somatoformes non diffrencis (300.81) (variation entre
les centres de 1 89% des patients pour lesquels ce diagnostic a t enregistr). En ce qui
concerne la prsentation des plaintes, le diagnostic troubles somatoformes non diffrencis correspond
plus ou moins avec le diagnostic SFC (fatigue (et ventuellement dautres plaintes) pendant
au moins six mois pour laquelle aucune cause organique ni aucun mcanisme pathophysiopathologique
clairs nont t dcels). Toujours daprs la description de ce diagnostic, il doit y
avoir un lien avec les facteurs psychosociaux identifiables qui ont prcd le modle des plaintes
et qui sont considrs comme tiologiquement importants dans lapparition de cette affection. La
description de ce diagnostic reflte donc une vision psychogne (dans le sens quune signification
tiologique primaire est donne des facteurs stressants). Les diffrences constates entre les
centres en ce qui concerne l'enregistrement de ce diagnostic refltent d'aprs les psychiatres en
un certain sens les incertitudes concernant l'tiopathogense du SFC (vision biologique oppose
vision psychogne). Toute la catgorie des troubles somatoformes du DSM-IV est actuellement
remise en question en raison de son caractre dualiste prononc.

Certaines affections psychiatriques sont des critres d'exclusion du diagnostic du SFC. Sur la base
du programme de rducation de bilan, aucun patient na t exclu sur base de telles affections
(qui expliquent les plaintes SFC). Ces patients avaient probablement dj t filtrs par le mdecin
gnraliste qui envoie le patient, par le centre sur base du formulaire de renvoi standardis, ou par
le mdecin interniste du centre de rfrence sur la base de sa consultation pralable avec les patients
envoys dans le centre (dans 13 cas).

Dutch:

2.11. Psychopathologische aandoeningen

In het kader van het bilanrevalidatieprogramma zijn de componenten stemmingsstoornissen,
angststoornissen en somatoforme stoornissen van een semi-gestructureerd psychiatrisch interview
(SCID-I of SCAN) afgenomen door een geneesheer-psychiater van de centra om DSM-IV As-
I diagnoses uit deze categorien vast te stellen.

De resultaten van de psychiatrische interviews (percentages patinten waarvoor elke diagnose
geregistreerd is) zijn opgenomen in tabel 32 op pagina 118. Opvallend zijn de grote verschillen die
soms bestaan tussen de centra, onder andere wat volgende diagnoses betreft: somatisatiestoornis
/ ongedifferentieerde somatoforme stoornis (300.81) (42%: 1-89%); depressieve stoornis
(296.xx) (13%: 0-33%); gegeneraliseerde angststoornis (300.02) (6%: 0-26%).

De geneesheren-psychiaters van de centra menen dat deze grote verschillen tussen de centra
vooral berusten op rapporteringsbias (verschillen tussen patinten in welke mate ze bepaalde
klachten of symptomen al dan niet rapporteren) en/of op interpretatiebias ((ideologische) verschillen
tussen de psychiaters van de centra inzake het finaal stellen van bepaalde diagnoses op basis
van de vastgestelde symptomen). Grote verschillen inzake de prevalentie van psychiatrische comorbiditeit
bij CVS blijken ook uit de literatuur. In een onderzoek van Prins et al (2005)65 vond
men: depressieve stoornis in het heden (current) bij 19% van de onderzochte personen en bij 37%
over de ganse levensloop beschouwd (lifetime); angststoornis current (13%) en angststoornis lifetime
(20%); PTSD (Posttraumatic Stress Disorder) current (0%) / lifetime (1%); somatisatiestoornis
current (5%); andere somatoforme stoornissen current (8%) / lifetime (8%). In andere onderzoeken
naar psychiatrische comorbiditeit bij CVS werden echter veel meer comorbide psychiatrische aan-doeningen vastgesteld, bijvoorbeeld Wessely et al (1998)66: current depressie (>50%) en somatisatiestoornis
(20%).

De grootste verschillen tussen de centra bestaan wat de vaststelling van de diagnose somatisatiestoornis
/ ongedifferentieerde somatoforme stoornis (300.81) betreft (variatie tussen de centra van
1 tot 89% van de patinten waarvoor deze diagnose geregistreerd is). Qua klachtenpresentatie
stemt de diagnose ongedifferentieerde somatoforme stoornis min of meer overeen met de CVSdiagnose
(vermoeidheid (en eventueel andere klachten) gedurende minimum zes maanden waarbij
geen duidelijke organische oorzaak of pathofysiologisch mechanisme werd gevonden). Nog
volgens de omschrijving van deze diagnose moet er een verband zijn met identificeerbare psychosociale
stressoren die aan het klachtenpatroon zijn voorafgegaan en die etiologisch belangrijk
worden geacht voor het ontstaan van de aandoening. De omschrijving van deze diagnose weerspiegelt
dus een psychogene opvatting (in de zin dat er een primaire etiologische betekenis wordt
gehecht aan uitlokkende stressoren). De vastgestelde verschillen tussen de centra qua registratie
van deze diagnose reflecteren volgens de psychiaters in zekere zin de onduidelijkheden rond de
etio-pathogenese van CVS (biologische versus psychogene visies). De volledige categorie van
somatoforme DSM-IV stoornissen staat momenteel overigens ter discussie omwille van het uitgesproken
dualistische karakter ervan.

Sommige psychiatrische aandoeningen zijn exclusiecriteria voor de CVS-diagnose. Op basis van
het bilanrevalidatieprogramma zijn er geen patinten uitgesloten op basis van dergelijke aandoeningen
(die de CVS-klachten verklaren). Deze patinten werden waarschijnlijk reeds uitgefilterd
door de huisarts die de patint verwijst, door het centrum op basis van het standaardverwijsformulier,
of (in 13 gevallen) door de geneesheer-internist van het referentiecentrum op basis van zijn
voorafgaandelijke raadpleging met de verwezen patinten.

The reports are very interesting to read. One probably doesn't have to read a lot of the text as there is so much data in the tables. It's the biggest thing in French I've ever read. I'm not sure I'd be inclined to read full papers in French as it would be tiring - but with this, once I'd read the tables, I had an idea what the text was likely to say making it easier to read.

 

[Marco]

Thanks for that Dolphin.

I'll give you a fairly accurate translation tomorrow.

Cheers

Marco

 

[Snow Leopard]

Psychosomatic medicine however has historically been called non-science (Karl Popper).

Do you have a reference for this? :Retro smile:

 

[alex3619]

Hi Snow Leopard, I have read the comment on Popper several times lately but I do not recall where. I will take a note of where and when I read it and let you know. These quotes come from academic papers and books, so although I am not 100% sure of reliability, I think it likely. Indeed, I have two interesting references on confirmation bias if you are interested:

http://www.scribd.com/doc/73420955/...iatrists-Stick-to-Wrong-Preliminary-Diagnoses
http://dspace.library.drexel.edu/bitstream/1860/1164/1/Parmley_Meagan.pdf

The first shows how common confirmation bias is during diagnosis in clinical practice using an experimental trial. The second is similar but is a PhD thesis and not an experimental trial.

The point about Popper, which is alluded to in the early part of Meagan (which I am only on to page 28) is that the psychosomatic doctrine is unfalsifiable. The main tenets could be falsified, but secondary principles redefine contrary data to reinterpret it as either irrelevant or actually confirming the psychsomatic hypothesis. This makes it unfalsifiable, which is what Popper means by non-science.

I will have a look around and see if I can get a better reference.

Bye, Alex

PS Run a search using "karl popper unfalsifiable non-science psychosomatic" and you will get a lot of hits. Some of these sources are dodgy however.

e.g. http://www.psychologistanywhereanyt...logists/psychologist_famous_sigmund_freud.htm

"Finally, Freud's theories are often criticized for not being real science. This objection was raised most famously by Karl Popper, who claimed that all proper scientific theories must be potentially falsifiable. Popper argued that no experiment or observation could ever falsify Freud's theories of psychology (e.g. someone who denies having an Oedipal complex is interpreted as repressing it), and thus they could not be considered scientific."

One of the many references that came up cites this, but I have not read the original:
Popper, K. (1953). Science : Conjectures and Refutations. Lecture at Peterhouse, Cambridge.

Here is the paper, but I have not read it yet, I hope to read it soon:
http://emilkirkegaard.dk/en/wp-content/uploads/Karl-Popper-SCIENCE-CONJECTURES-AND-REFUTATIONS.pdf

 

[Marco]

Here's the translated discussion of the data from the Belgian rehabilitation clinics.

Pretty much what we would have expected :

********************

The results of psychiatric interviews (percentages of (adult) patients for whom each diagnosis is recorded) are shown in Table 32 on page 118. We note that there are sometimes large differences between centers, particularly with regard to the following diagnoses :

'Somatization disorder / undifferentiated somatoform disorder' (mean 42%: range 1-89%);

'Depressive disorders' (mean 13%: range 0-33%);

'generalized anxiety disorder' (mean 6%: range 0-26%).

The psychiatrists from the centres think that the large differences between centers result mainly from reporting biases (differences between patients in the extent to which they do or do not report certain complaints or symptoms) and /or interpretation biases (ideological differences) between the centre psychiatrists regarding certain diagnoses which depend on the observed symptoms).

The literature also reveals significant differences in the prevalence of comorbidity in the case of CFS. In a study by Prins et al (2005), they found:

current depressive disorder in 19% of those examined and 37% lifetime occurance,

current anxiety disorders (13%) and anxiety disorders lifetime (20%),

PTSD (Post traumatic Stress Disorder) current (0%) / lifetime (1%),

somatization disorder current (5%), other current somatoform disorders (8%) / lifetime (8%).


In other studies of psychiatric comorbidity in CFS, we found, however, many more psychiatric conditions recorded, such as that by Wessely et al (1998)

: current depression (> 50%) and somatization disorder (20%).


The largest differences between the centers appear to be for the confirmation of a diagnosis of 'somatization disorder / undifferentiated somatoform disorder' (a variance between centers from 1 to 89% of patients in whom this diagnosis was recorded).

With regard to the complaints (symptoms) presented, the diagnosis 'undifferentiated somatoform disorder' corresponds more or less with the diagnosis of CFS (fatigue (and possibly other symptoms) lasting at least six months for which no organic cause or clear pathophysiological mechanism were detected). Also according to the description of this diagnosis (undifferentiated somatoform disorder), there must be a link to identifiable psychosocial factors that preceded the model (cardinal) symptoms which are considered etiologically important in causing this condition.

The diagnostic description, therefore, reflects a 'psychogenic' concept (in the sense that stress factors are considered of primary etiologic significance). The differences between the centers regarding the recording of this diagnosis reflects, in an sense, the psychiatrists' uncertainties regarding the etiopathogenesis of CFS (opposing biological or psychogenic concepts). The whole category of somatoform disorders in DSM-IV is currently questioned because of its pronounced dual character.

Some psychiatric conditions are exclusion criteria for a diagnosis of CFS. Based on the survey of the rehabilitation program, no patient was excluded on the basis of such conditions (accounting for the symptoms of CFS). These patients had probably already been filtered out by the GP who sent the patient, the center based on the standardized referral form, or by the resident centre doctor on the basis of prior consultation with patients referred to the center (13 cases).

*********************

Apolgies for any errors.

 

[Sean]

Thanks for this, Marco. Good thread all round.

If a 1-89% variation in diagnostic rates isn't a massive red flag about the unreliability of a somatisation diagnosis, I don't know what is.

 

[Valentijn]

If a 1-89% variation in diagnostic rates isn't a massive red flag about the unreliability of a somatisation diagnosis, I don't know what is.

I took the "4-dimensional questionnaire of Terluin" when getting diagnosed (among other tests), which scored for distress, depression, anxiety, and somatization. The 16 questions indicating somatization include: dizziness/light-headed, painful muscles, fainting, neck pain, back pain, excessive perspiration, palpitations, headache, abdominal bloating, vision oddities, shortness of breath, stomach problems, stomach pain, tingling fingers, chest pressure, and chest pain.

In this validation study, patients with "definite somatization" scored a mean of 10.4 (SD 5.9) (Table 11). I scored 12/32 based on ME symptoms. Someone having a heart attack would probably score much higher, as would other people with various medical conditions.

Which seems to indicate that diagnosing somatization is indeed a load of bullocks, especially when doctors try to quantify it with questionnaires. No one would give that questionnaire to someone with an actual diagnosis of a "real" illness ... it's just for letting doctors confirm their suspicions (based on a lack of observed clinical signs) that the patient isn't sick.

It doesn't say whether someone is sick, or whether they're somatizing. The only thing that questionnaire indicates is whether or not the patient claims she is experiencing symptoms.

 

[Dolphin]

I took the "4-dimensional questionnaire of Terluin" when getting diagnosed (among other tests), which scored for distress, depression, anxiety, and somatization. The 16 questions indicating somatization include: dizziness/light-headed, painful muscles, fainting, neck pain, back pain, excessive perspiration, palpitations, headache, abdominal bloating, vision oddities, shortness of breath, stomach problems, stomach pain, tingling fingers, chest pressure, and chest pain.

In this validation study, patients with "definite somatization" scored a mean of 10.4 (SD 5.9) (Table 11). I scored 12/32 based on ME symptoms. Someone having a heart attack would probably score much higher, as would other people with various medical conditions.

Which seems to indicate that diagnosing somatization is indeed a load of bullocks, especially when doctors try to quantify it with questionnaires. No one would give that questionnaire to someone with an actual diagnosis of a "real" illness ... it's just for letting doctors confirm their suspicions (based on a lack of observed clinical signs) that the patient isn't sick.

It doesn't say whether someone is sick, or whether they're somatizing. The only thing that questionnaire indicates is whether or not the patient claims she is experiencing symptoms.

Interesting.
I always like to read the questions on a questionnaire myself if it is being discussed in a paper (after a while one remembers the sort of questions asked e.g. with the SF-36).
A lot of discussions in the ME/CFS literature are very academic in the sense that they just talk about the numbers associated with a questionnaire with people just accepting results from questionnaires at face value without wondering whether they might be problematic in ME/CFS.

 

[Marco]

I took the "4-dimensional questionnaire of Terluin" when getting diagnosed (among other tests), which scored for distress, depression, anxiety, and somatization. The 16 questions indicating somatization include: dizziness/light-headed, painful muscles, fainting, neck pain, back pain, excessive perspiration, palpitations, headache, abdominal bloating, vision oddities, shortness of breath, stomach problems, stomach pain, tingling fingers, chest pressure, and chest pain.

In this validation study, patients with "definite somatization" scored a mean of 10.4 (SD 5.9) (Table 11). I scored 12/32 based on ME symptoms. Someone having a heart attack would probably score much higher, as would other people with various medical conditions.

Which seems to indicate that diagnosing somatization is indeed a load of bullocks, especially when doctors try to quantify it with questionnaires. No one would give that questionnaire to someone with an actual diagnosis of a "real" illness ... it's just for letting doctors confirm their suspicions (based on a lack of observed clinical signs) that the patient isn't sick.

It doesn't say whether someone is sick, or whether they're somatizing. The only thing that questionnaire indicates is whether or not the patient claims she is experiencing symptoms.

Hi Valentjin

I was going to suggest that it might be useful to start a thread (or group) examining the various psychometric (and other) instruments commonly used in describing ME/CFS patients.

While I'm perfectly open to our neurological illness (if that's what it is) resulting in various mood related symptoms I also feel we sometimes just accept it when high rates of depression, anxiety, somatising etc are reported as co-morbid or the primary diagnosis.

The limitations of SF36 and the Chalder fatigue scale have been extensively discussed on the PACE thread to which we could add the Hospital Anxiety and Depression Scale (HADS) and Beck Depression Inventory. I'm afraid I'm not familiar with Terluin.

I've had a quick look at HADS which is designed as a rapid screening tool to assess anxiety and depression in hospital patients who might benefit from liaison psychiatry intervention.

The 14 item questionnaire is intended to measure only the two factors of anxiety and depression and exclude items which relate to somatic symptoms (which would obviously confound results for medically ill patients).

Reviews of the use of HADS suggest that it is adequate for its purpose but was found in a number of uses (i.e. with certain illnesses) to measure more than two factors - usually three. Anxiety, depression and a 'somatic' element. It has been suggested that HADS should be superseded in the light of these findings.

I've found two reviews of the use of HADS in a ME/CFS population by the same authors. The first review concluded that HADS was not 'fit for purpose' (my summary). The second review extended the first and concluded that a more conservative conclusion was warranted. But suggested caution in its use and interpretation in ME/CFS populations.

I may, if time permits, write this up properly with references.

 

[Dolphin]

Hi Valentjin

I was going to suggest that it might be useful to start a thread (or group) examining the various psychometric (and other) instruments commonly used in describing ME/CFS patients.

That'd be interesting (ok, I imagine not everyone would find the topic of interest! But I would).

 

[PhoenixDown]

... Treating patients based on a viral model for example can achieve results I think are an order of magnitude better than CBT/GET. Over three times as many patients respond, with over three times the degree of response. Thats a whole order of magnitude. Yet these people are operating within standard science, they are careful, and the research advances methodically though without adequate budgets.

Can I have some links to those studies please (primary sources). It's no good me bringing that up in a debate if I can't back it up then I'm gonna look like a fool.

 

[alex3619]

Hi, PhoenixDown, this was Lerner's research. There are only two working strongly in this area: Lerner and Montoya. I will have a look and add references if I have time, as a PS to this post. Bye, Alex


http://aboutmecfs.org.violet.arvixe.com/Int/Lerner.aspx
Up to 75% respond, some up to full recovery, but more were just mostly recovered. This article is from here originally, but I don't have time to search for the original. It was by Cort.

http://www.treatmentcenterforcfs.co...e-on-the-management-of-glandular-fever-IM.pdf

http://www.co-cure.org/Lerner.pdf

 

[Marco]

That'd be interesting (ok, I imagine not everyone would find the topic of interest! But I would).

I'd be game in due course.

Not at the moment though as I'm currently dealing with the aftermath of a number of burst water pipes.:Retro mad:

In the meantime I posted the following comments regarding the Back Depression Inventory on one of the front page articles :



"I have no idea how exactly you would go about disaggregating the symptoms of depression or anxiety as a discrete illness or co-morbid condition from those understandable feelings arising from chronic illlness or depression and anxiety arising from an inflammatory milieu as in heart failure, COPD or indeed ME/CFS (the cytokine theory of depression).

The problem is compounded by instruments like the commonly used Beck Depression Inventory (BDI) that was presumably developed to discriminate cases of depression from healthy controls, not depression as a discrete illness (if there is such a thing) from the symptoms of depression in the chronically ill.

The fact is the BDI includes items that refer to physical somatic symptoms and functional/societal deficits as well as those relating to negative affect. For example :

The Beck Depression Inventory (BDI) is widely used to assess depression in chronic pain despite doubts about its structure and therefore its interpretation. This study used a large sample of 1947 patients entering chronic pain management to establish the structure of the BDI. The sample was randomly divided to conduct separate exploratory (EFA) and confirmatory factor analyses (CFA). EFA produced many satisfactory two-factor solutions. The series of CFA generated showed reasonable fit for ten of those solutions. All included a first factor identified as negative view of the self (items: failure, guilt, self-blame, self-dislike, punishment and body image change), and a second factor identified as somatic and physical function (items: work difficulty, loss of appetite, loss of libido, fatigability, insomnia and somatic preoccupation). The remaining items (suicidal ideation, social withdrawal, dissatisfaction, sadness, pessimism, crying, indecisiveness, weight loss, irritability) loaded infrequently or not at all in the CFA solutions. They did not form a coherent factor but comprised items associated with negative affect.

When compared with published data from samples of depressed patients drawn from mental health settings the mean item scores for items reflecting the negative view of the self were consistently statistically lower that that observed in samples; there was no consistent difference between the samples on the items reflecting somatic and physical function; but the mean scores for the remaining affect items were significantly greater in the mental health samples. This version of depression is strikingly different from the psychiatric model of depression (e.g. DSM-IV or ICD-10), which is primarily defined by affective disturbance, and secondarily supported by cognitive and somatic symptoms

.

A quick look at the BDI shows how easy it would be to score highly on the depression scale due to physical symptoms and incapacity/doubts about future capacity while remaining resolutely not depressed. Even the one item likely to unambiguously point to depression (suicidal ideation) only scores the same as for the other items :

http://www.mydrrachel.com/docs/BeckD...nInventory.pdf

Personally, I now just tend to ignore any studies that suggest elevated levels of 'depression' or 'anxiety' as for the reasons above I just consider them additional symptoms and otherwise meaningless.

 

[Dolphin]

I'd be game in due course.

Not at the moment though as I'm currently dealing with the aftermath of a number of burst water pipes.:Retro mad:

Sorry to hear that.

Thanks for info on BDI.
Link didn't work but gave enough info to find it: http://www.mydrrachel.com/docs/BeckDepressionInventory.pdf

I started a separate thread for posting the text of questionnaires (info could/would also be quoted be quoted if a particular questionnaire is discussed in the thread you had in mind):
Questionnaire questions - post links or text (ideally scoring info if have it)
http://forums.phoenixrising.me/show...nks-or-text-(ideally-scoring-info-if-have-it)