Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Oct 2, 2018.
Recently registered study
There has to be a special space in hell for people designing such studies. Seemingly medicine and psychology have learnt nothing from medical history (i have stomach ulcers and multiple sclerosis in mind)
Yeah! Now MUS, BDD, BDS et al get a new friend: Let's welcome MSS!
The detail of the study linked in the first post include e-mail contact details for the people running the study. I wonder whether our Australian members might be, through their patient organisations, going to contact the organisers to point out the flaws in their assumptions of a psychiatric diagnosis for ME/CFS? Perhaps a link to the latest OMF symposium and an urge that the organisers watch it, plus links to the PACE reanalysis etc.
Even if the premise was valid, isn't this akin to noticing that a lot of people who get hit on the head with bricks use healthcare, and so deciding to study bricks?
"A large and diverse group of diagnoses have been suggested labels of these complaints; Somatization Disorder (Diagnostic and Statistical Manual of Mental Disorders-V..."
a) The replacement for DSM-IV published in May 2013 is known as "DSM-5" not "DSM-V".
b) There is no "Somatization Disorder" in DSM-5.
The various somatoform disorder categories were retired for DSM-5 and replaced with the single, new disorder construct: "Somatic symptom disorder (SSD)."
MSS - one more to add to the alphabet soup, then:
Australia will get the change of parent class for CFS and its Synonym terms incorporated into the SNOMED CT Australian Edition on December 30.
One of the outcomes mentioned are measures using the Whiteley-7 index for Illness Worry.
I found the questions here:
I'm pretty sure that anyone with ME would qualify as a hypochondriac with this measure.
So that's a 'large proportion of Australians seek help for MSS', while 'many sufferers of MSS do not seek help for their symptoms'. Gosh, adding the two, it's a wonder that there are any non-hypochondriacs in Australia.
Totaling the two groups, those with MSS who seek treatment and those with MSS who do not seek treatment, depending on the value of "many" this could easily result in there being far more people with MSS in Australia than there are people in Australia.
Gotta love the precise language in these things.
Yesterday, when looking for quotes for another thread, I came across this little gem from our old friend Goldberg, and his language appears eerily reminiscent of aspects of early Wessely. This appears in Interpreting the role of depression in Chronic Fatigue Syndrome by Colette Ray in Post-viral Fatigue Syndrome (Myalgic Encephalomyelitis) eds Jenkins and Mowbray 1991:
However somatisation ,as a process, rather than as a specific disorder, might have a more widespread significance in CFS...….A similar concept is that of masked depression.... and this refers to depression which manifests as hypochondriacal or psychosomatic complaints, rather than as affective disturbance. In such cases there may or may not be a medical condition underlying the somatic complaints but, if there is such a condition, its symptoms are exaggerated or amplified. …….Goldberg and Bridges (1988) highlight the blame avoiding function of somatisation:
….it is a great way for not seeing oneself as mentally ill, and not seeing oneself as responsible for the life predicament which one happens to be in.....It is this blame avoiding function of somatisation that seems to us to be its key feature, and perhaps explains why patients do not report such great levels of depression (page 142)
The reference is to Goldberg D and Bridges K (1988) Somatic presentations of psychiatric disorder in primary care setting. Journal of Psychosomatic Research, 32, 137-144
This sounds very like the idea of viral explanations being an excuse to avoid stigma. All these ideas clearly have strong foundations.
Surely this would make the underlying medical condition much easier to determine?
Is it too much to ask for competence, and a certain amount of what is commonly referred to as 'rational thought' in 'highly trained' medical 'professional'?
Rather than the current "I haven't a clue so you must be mad" approach, followed by massive effort to determine a method by which they can back this up, effort that would probably be much better invested in finding out what is actually wrong.
"by Sasha Nimmo September 27, 2018
Macquarie University are recruiting people with chronic fatigue syndrome, fibromyalgia, gastrointestinal disorders and multiple chemical sensitivity for a study measuring somatic symptoms, hypochondria, anxiety and depression, catastophising and co-morbid diseases. The study was approved by the University’s ethics department.
Psychiatrists at Macquarie University in Sydney sought 1000 people for the one-year longitudinal study.
The study is ‘The mind-body relationship of common physical symptoms in the community’, or its scientific title is ‘Epidemiology of Multiple Somatic Symptoms in the community, and its association with illness related cognitions’.
The researchers classify chronic fatigue syndrome, fibromyalgia, gastrointestinal disorders and multiple chemical sensitivity with the mental disorder – somatization, which is ‘unconscious process by which psychological distress is expressed as physical symptoms’."
full article here:
they clearly haven't read Griffith Universitys memo:
Speaking at the announcement, Queensland Science Minister Leanne Enoch called the discovery great news for all people living with Chronic Fatigue Syndrome and the related Myalgic Encephalomyelitis (ME).
“It confirms what people with these conditions have long known: that it is a ‘real’ illness, not a psychological issue." "
All one can say is, good luck with finding a representative sample of volunteers for that.
It's a one year longitudinal study, target of 1000 participants, Macquarie University.
The trial registration says of recruitment:
'Random selection of community individuals from NSW electorates (Bradfield, Bennelong, North Sydney, Sydney, Grayndler, Reid, Parramatta and Mitchell)'. It's unclear what they are doing with respect to recruitment, but it doesn't seem random.
Nice work by Sasha Nimmo holding the researchers to account.
That's right you never know who's part of the conspiracy
Prof Sir David Goldberg is now around 84 years old and still ploughing the same old furrow.
Goldberg was Professor of Psychiatry, Director of Research and Development and Director of Education at the Institute of Psychiatry from 1993 to 1999.
He had chaired the WHO advisory group that developed the Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version, 1996, aka "ICD-10 PHC".
This WHO publication was subsequently adapted by the WHO Collaborating Centre for Research and Training for Mental Health at the Institute of Psychiatry, Kings College, London for The GUIDE to Mental Health in Primary Care.
It was this publication that played fast and loose with ICD-10 codings and the WHO, Geneva, were approached in 2001 to sort this out. Erratum notes had to be inserted into the book as it had already gone to press.
The IoP tried it on again, in 2007, with the content of its webpages and patient information downloads - ascribing the wrong code to Chronic fatigue syndrome. Again, this had to be addressed (though on this occasion, it was sorted without the intervention of the WHO).
Despite his great age, Goldberg was nevertheless selected to chair the ICD-11 Primary Care Consultation Group (PCCG) that has been recommending a "Bodily Stress Syndrome" (BSS) for the revision of the Diagnostic and Management Guidelines for Mental Disorders in Primary Care, which is known as "ICD-11 PHC" or "ICD-11-PHC" and which has not yet been released.
In the context of inclusions for the field trials for BSS, Goldberg refers to "effort syndrome" - an historical term that is not coded for in the ICD-10 Tabular List but which points to ICD-10 F45.3 Somatoform autonomic dysfunction.
Who can forget his famous:
The recognition of PVFS by the Department of Health can be viewed as an attempt to legitimise the sick role, and thus regard the chronic illness behaviour manifested by the patients within the ambit of "normal" illness behaviour. Furthermore the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group, the ME Society, which advocates total rest. ?
Psychiatric perspectives an overview. TO Woods DP Goldberg British Medical Bulletin (11991) vol 47 no 4 pp 908-918
I just answered (in my head) the listed questions from the point of view of someone suffering from one of the following : measles, rheumatoid arthritis, several broken ribs, hypothyroidism, hyperthyroidism. And guess what? They're all hypochondriacs!
What a crap.
It's like time travel into another time, or like space travel to "The Planet of the Gaps", that is, the Gaps are beings with gaps, e.g. in knowledge, sense for reality, thinking, common sense, empathy and much much more...
Let's hope they have trouble recruiting. Some good/reality checked stories in the media would be great.
Also, while it is a good idea to do what @Trish suggested part of me worries that they'll just take the info and use it to find ways to game the system by being ever more devious with the data (but that's probably really not likely that they could --just my cynicism talking).
It might be good to if the university was made aware along with the PI's. Is it even possible that the university department heads are unaware of the growing push for better research in general. Making them aware of the issues around open science and improved trial designs might give them pause.
Anyway, thanks @Andy for making us aware. It's good to know about and follow this miserable excuse for ME research.
Separate names with a comma.