Who said: don't bother testing patients?

Noooo, sir! I'm sorry I gave you half a heart attack! I promise I capitalize all alphabet organizations!

The presence of the pallbearers will cue them in.

 

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.

 

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/.

 

@JaimeS,

not relevant, but didn't at least one known actor, such as sw, ms, or pw, state in public that biomedical research should not be done, with a similar excuse? perhaps to uk parliament or so?

this stuff is closing around a lot of disease populations FAST.

it reminds me of https://www.britannica.com/topic/total-war.

 

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.

 

Yes, I seem to recall this too -- about a year and a half ago, maybe? First half of 2016 or second half of 2015?

 

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/

eta: if anyone wants to use it I posted this pic on that thread;
Simon says:

 

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.

 

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

 

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

 

If, as an epidemiologist, he knows that people have CFS only when they fulfil operational criteria for that condition, it may be that we would be better off with an epistemologist.

 

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."​

 

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

​

 

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.

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

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?

 

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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