Who said: don't bother testing patients?

TiredSam said:
Scary thread title by the way - I thought the World Health Organisation had just announced that patients shouldn't be tested :jawdrop:
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Noooo, sir! I'm sorry I gave you half a heart attack! I promise I capitalize all alphabet organizations!

Lucibee said:
I think the implication is that, by that stage, it will be obvious. Like, really obvious. *spurt spurt*
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The presence of the pallbearers will cue them in.
 
JaimeS said:
Always with the studies from the '90s. It's like there was a dry spell in BPS non-science from 2000-the PACE trial.
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Those papers all basically rehash the exact same ideas with the same logic and arguments. Eventually it seems they have to sort of reduce the output or it just gets embarrassing. Reading the same thing several times jumps out at you.

I read a few paragraphs from psychosomatic medicine papers in the 30's and 40's. Contemporary jargon aside, they're basically identical to what the current generation is saying. There is not a single new thing other than ever creative ways to launder their flawed arguments into something that looks like science. The foundations are exactly the same.
 
JaimeS said:
Amazing @Forbin, it was that exact thread that I was thinking of when I asked this question, you're incredible.
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Wow this is a treasure trove. It is full of relevant insights into how much contempt they hold for us and their galactic-sized incompetence.

I think this may be very relevant for the NICE committee to provide their true motivations and beliefs. They had made up their mind from the outset, well before they had fabricated any evidence for it, which I think is the proper term here.

It actually provides much of the template for why research was so effectively suppressed. Their mindset goes against every lesson science painfully taught us over the centuries. It would comfortable and contemporary in Victorian England.

Although what's strange is there are some quotes that completely contradict his primary assumptions, yet seem to have no effect on the strength of his beliefs. There's some really impressive irony at play that Wessely argues about strength of belief being a predictor in this disease when his entire body of work is just an exercise in holding on to a belief despite all evidence.

Just adding the URL for convenience: https://forums.phoenixrising.me/index.php?threads/simon-wessely-quotes.21025/.
 
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JaimeS said:
This is becoming a meme. I've heard this multiple times in the past few weeks! I wonder what's led to an increase in this suggestion (tongue-in-cheek or not) in chronic illness community!
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Depends on the vet. We've had vets ignore/dismiss a serious infection twice, do the wrong test first, and their staff dismiss an obvious, so we thought, serious autoimmune diseases, as just psychosomatic. Some other vets have been great, and go that extra mile to find the problem.
 
I understand tilt table tests can be challenging for pwME, but why would a PACE researcher say so. After all, the BPS group think we're not physically ill. So, if we actually enjoy robust health why the prohibition of tilt table tests?

Well....because the results from this test would provide objective evidence of physical disability! A fact that would be rather problematic for the BPS theory of ME.
 
JaimeS said:
It's so EASY to test for OI. And there are treatments!
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True, but they may not necessarily work for the OI we get. It depends on what is driving the OI.

Treating it with current standard OI therapies might make no difference, or even make it worse. Careful trials needed, as always.

JaimeS said:
The presence of the pallbearers will cue them in.
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Mortality is about as objective and definite as outcome measures get. :whistle:

rvallee said:
Those papers all basically rehash the exact same ideas with the same logic and arguments. Eventually it seems they have to sort of reduce the output or it just gets embarrassing. Reading the same thing several times jumps out at you.
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Their claims are built on little more than circular, definitional arguments, loaded with untested (and sometimes untestable) assumptions.

It is just high-level sophistry, games with words to give the impression of knowledge and progress, without actually delivering any understanding or therapeutic benefit. Pseudoscience. In broad daylight.

They are so good at it that most of them fooled themselves, which is one of the worst sins in science, second only to outright fraud, and some of them may also be guilty of committing that crime once they had realised it wasn't all going to plan and the arse covering phase started.

Oh, what fun. o_O
 
I made the remark about vets because animals, plants and bacteria become ill because of biomedical reasons. If all human doctors are being encouraged to deal with their patients by Fink's maxim
" It is still not well enough known that for enduring and disabling bodily symptoms a purely biomedical explanation of the extent of the symptoms is hardly ever appropriate."
we are never going to be treated properly.

The social aspects of having a disease can be overwhelming, losing your income trying to deal with children, but I want my doctor to be concerned with what is going wrong in my body. It is the only chance we have of recovering or at least achieving a reasonable life and it ought to be their area of expertise.

Ironically, the idea that enduring disease is not strictly biomedical rightly or wrongly denies us social support.
 
Sly Saint said:
you don't have to look at the one on PR, it's here:
https://www.s4me.info/threads/simon-wessely-research-related-quotes.1304/
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Thanks to SW's fastidious cataloguing of his publications on his website, I've finally tracked down the origin of the quote "ME is simply a belief that one has ME".

It appears in a book chapter he wrote in 1995 - Social and Cultural Aspects of CFS (which appeared in a book on Fibromyalgia, CFS, and repetitive strain injury). The full link is here: http://www.simonwessely.com/Downloads/Publications/CFS/54.pdf

A word of caution is in order given the controversial subject of this paper. There are two aspects to CFS. The first is an operationally-defined condition, that can be measured and studied. We and other groups are making progress in determining the epidemiology of CFS in primary care using the conventional methods of epidemiological research. However, such research will not shed light on the second problem of CFS. This is the belief, whether self- or doctor-generated, that one is suffering from an illness with that label. Thus, patients are appearing in increasing numbers who believe, often with passion and conviction, that they suffer from chronic fatigue and immune deficiency syndrome (CFIDS) in the USA, or myalgic encephalomyelitis (ME) in the United Kingdom. [...]

As an epidemiologist, I know that a person has CFS only if they fulfil operational criteria. As an observer of the social scene, I also know that ME or CFIDS is defined by the sufferers themselves. Hence, for this paper, a person has ME or CFIDS simply if that is what they believe is wrong with them. Untold confusion has arisen from the failure to distinguish between an operationally-defined epidemiological construct and a social belief system. This essay concerns the latter and not the former.
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Lucibee said:
"ME is simply a belief that one has ME".
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very similar to his one about GWI;
can't find the exact quote but it is something like 'to have GWI you only need to know someone with GWI'.

eta: another tidbit, Mansel Aylward doesn't think PTSD exists.

eta2: re GWI there's this one
"
The strongest factor associated with the belief [of having GWI] was
knowing another person who held the same belief."
https://pdfs.semanticscholar.org/d745/e5a4ac8e71780795e4e4761ef510ad6d3358.pdf
 
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I was reading the MUS-book Chris Burton edited. In Chapter 5 Medically Unexplained Symptoms and the General Practitioner, Christopher Dowrick (university of Liverpool) writes:

"Although patients with MUS present with a variety of problems and cues, GPs are more likely to pay attention to their physical symptoms than to their psychological or social problems. We are also more likely than our patients to propose investigations, somatic treatments or referrals. As a result, we encourage the persistence of MUS in our patients."
​
Edit: in chapter 6, Chris Burton claims that doctors overestimate patients wishes for investigation:

"Although patients offer cues about what they want, most doctors overestimate patients’ wishes for investigation, resulting in unnecessary tests that patients neither want nor need."​
 
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When I was reading about central sensitisation syndromes (CSS), I found the following remark:

“For patients who report a wide range of comorbid symptoms within the CSS family, the clinician may choose to pursue fewer expensive diagnostic tests and, instead, gear treatment toward biopsychosocial symptom management strategies and toward more appropriate and effective medications.”​

Source: Mayer TG, Neblett R, Cohen H, Howard KJ, Choi YH, Williams MJ, et al. The development and psychometric validation of the central sensitization inventory. Pain Pract. 2012; 12(4): 276-85.
 
The official guideline here in Belgium lists all sort of tests that should not be done. It includes Natural Killer cel-testing, tilt table test, B12 measurement, polysomnography, immune markers such as cytokines, antibodies to herpesvirusses etc.

Here's the full section (source: https://kce.fgov.be/sites/default/files/atoms/files/d20081027358.pdf, page 22-23):


TESTS THAT SHOULD BE AVOIDED

As evidenced by literature review, do not do:
  • tests for serum ferritin in adults, unless other tests suggest iron deficiency
  • tests for vitamin B12 deficiency or folate levels, unless a full blood count and mean cell volume show a macrocytosis
  • tests for activation of 2,5A synthetase/ribonuclease latent (RNase L) and RNA-regulated protein kinase (PKR) antiviral pathway
  • immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16)
  • serological testing, unless there is an indicative history of an infection; if so, consider tests for:
o chronic bacterial infections, such as borreliosis

o chronic viral infections, such as HIV or hepatitis B or C

o acute viral infections, such as infectious mononucleosis (antiEpstein Barr antibodies).​
Before more research will be available to give evidence on their utility and their ability to discriminate CFS patients from controls, do not do the following tests routinely:
  • the head-up tilt test
  • auditory brainstem responses
  • electrodermal conductivity
  • polysomnographic assessment of sleep (awaiting confirmation of the recent data from Reeves et al. (2006)47 in larger population studies), except if the anamnesis suggested a primary sleep disorder. In this latter case, a clinical assessment
 
Michiel Tack said:
tests for serum ferritin in adults, unless other tests suggest iron deficiency
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This surprises me. When I see GPs they very occasionally test my serum ferritin, but never test my serum iron. It would have benefited me personally if I had had my serum iron tested a few times - a hospital noted it was below range nearly ten years ago but it has never been tested again by the NHS as far as I know. I only found out my serum iron and Total Iron Binding Capacity were below range when I bought my GP records. The problem was recorded but was otherwise ignored.

Michiel Tack said:
tests for vitamin B12 deficiency or folate levels, unless a full blood count and mean cell volume show a macrocytosis
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You might be interested in this link on the subject of macrocytosis and B12 deficiency.

https://www.b12deficiency.info/blog/tag/macrocytosis/

And this link, although people have almost certainly seen it before. The Belgian rules and the NICE rules look identical :

https://www.nice.org.uk/donotdo/tes...ount-and-mean-cell-volume-show-a-macrocytosis
 
I've found a more recent SW ref, this time invoking zebras... https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-7-58

Chronic fatigue syndrome: identifying zebras amongst the horses
  • Samuel B Harvey
  • Simon Wessely
Abstract
There are currently no investigative tools or physical signs that can confirm or refute the presence of chronic fatigue syndrome (CFS). As a result, clinicians must decide how long to keep looking for alternative explanations for fatigue before settling on a diagnosis of CFS. Too little investigation risks serious or easily treatable causes of fatigue being overlooked, whilst too many increases the risk of iatrogenic harm and reduces the opportunity for early focused treatment. A paper by Jones et al published this month in BMC Medicine may help clinicians in deciding how to undertake such investigations. Their results suggest that if clinicians look for common psychiatric and medical conditions in those complaining of prolonged fatigue, the rate of detection will be higher than previously estimated. The most common co-morbid condition identified was depression, suggesting a simple mental state examination remains the most productive single investigation in any new person presenting with unexplained fatigue. Currently, most diagnostic criteria advice CFS should not be diagnosed when an active medical or psychiatric condition which may explain the fatigue is identified. We discuss a number of recent prospective studies that have provided valuable insights into the aetiology of chronic fatigue and describe a model for understanding chronic fatigue which may be equally relevant regardless of whether or not an apparent medical cause for fatigue can be identified.

See the associated research paper by Jones et al: http://www.biomedcentral.com/1741-7015/7/57
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In some senses this is correct. There are no tests that will confirm or refute the presence of CFS (ME) - so why do them? But surely testing is about finding differential diagnoses (partic of co-morbidities) that could be treated?
 
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Lucibee said:
Thanks to SW's fastidious cataloguing of his publications on his website, I've finally tracked down the origin of the quote "ME is simply a belief that one has ME".

It appears in a book chapter he wrote in 1995 - Social and Cultural Aspects of CFS (which appeared in a book on Fibromyalgia, CFS, and repetitive strain injury). The full link is here: http://www.simonwessely.com/Downloads/Publications/CFS/54.pdf
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There was also his statement during his speech at the 1994 Eliot Slater Conference that 'I will argue that ME is simply a belief, the belief that one has an illness called ME'. He probably doesn't have that one catalogued on his site, LOL.
 
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