'Independent' PACE TSC member speaks on MUS at British Infection Association

[Sean]

Never?

Ever.

 

[Woolie]

There is a technique for presenting yourself to doctors, isn't there? And you don't work it out for ages. At first you sincerely believe that your doctor will want to hear what you have to say. Its only later you realise they're humoring you.

Here's what I've learned:

* Focus on the big things, and keep quiet about the smaller symptoms.

* Avoid describing symptoms in ways that allow them to be easily dismissed as psychological. Early on I mentioned to the doctor my high resting pulse rate and heart palpitations. I only realised later how I was gifting my doctor an opportunity to label me as anxious. Ditto for fatigue - easy to attribute to depression - better to be more specific about what the sensation is and when it occurs.

* 'Objectify' your symptoms as much as possible. What makes them worse, under what circumstances do they lift, and what does that feel like? (For example, if I'm in a crash, my symptoms peak at around 6-8pm and I get a window of relief around 9-30-11pm). Vague descriptions of symptoms that overwhelm you and are almost constantly present are another gift to psychologisers.

* If you feel at your worst in the morning, keep quiet about it. Some doctors treat this as evidence of depression.

* Never 'bite' when they ask you how upset you are about your health, and never EVER bite when they ask you about other problems in your life. You're managing as best you can given your health limitations, you have gained courage, you have learned many lessons. But you're eager to get back fully to your great life!

* Frame every complaint as a barrier to you doing the things you really want to in life. You should also include a specific request of what you want to happen. e.g. if I could manage symptom x, that would allow me to do more of Y, and I desperately want to do that. Or: if there is even a 1 in 100 chance of this test finding something wrong with me that is treatable, that's worth it to me, because I desperately want to do x,y,z.

* Never exhibit your distress. Use other ways of conveying the seriousness of the matter. e.g., I'm not scared of (some bad diagnosis). My life is so severely limited now, I honestly can't imagine many scenarios that are worse than this.

* Say often: "Do you understand my position here?" "Can you appreciate why I might want that?" "Do you see my reasoning here?" "If you were in my position, I suspect you'd ask the same thing". These comments force the doctor to take your perspective. They challenge his/her view of you as somehow 'other'.

* Oh, and assume the doctor is humouring you unless you hear clear statements to the contrary. Many doctors are very good at that.

None of this stuff will work if your doctor is fully determined to believe your problem is psychological. But its gotta be worth trying, eh?

 

[Cheshire]

The list of symptoms often approaches 30 and they are often written in a list, a syndrome called by Charcot ‘
la maladie du petit papier’.

FWIW: This study was done by Carson, Stone and Sharpe, within a BPS frame, but it debunks the idea that the number of symptoms is a sign that identifies psychosomatic illness

Somatic symptom count scores do not identify patients with symptoms unexplained by disease: a prospective cohort study of neurology outpatients.
Carson AJ, Stone J, Hansen CH, Duncan R, Cavanagh J, Matthews K, Murray G, Sharpe M.
J Neurol Neurosurg Psychiatry. 2015

“Somatic symptoms unexplained by disease are common in all medical settings. The process of identifying such patients requires a clinical assessment often supported by clinical tests. Such assessments are time-consuming and expensive. Consequently the observation that such patients tend to report a greater number of symptom has led to the use of self-rated somatic symptom counts as a simpler and cheaper diagnostic aid and proxy measure for epidemiological surveys.”

“We found 1144/3781 new outpatients had symptoms that were unexplained by disease. The patients with symptoms unexplained by disease reported higher symptoms count scores (PHQ 15: 5.6 (95% CI 5.4 to 5.8) vs 4.2 (4.1 to 4.4) p<0.0001). However, the PHQ15 performed little better than chance in its ability to identify patients with symptoms unexplained by disease. The findings with the enhanced scales were similar.”

“Self-rated symptom count scores should not be used to identify patients with symptoms unexplained by disease.”

http://jnnp.bmj.com/content/86/3/295.full.pdf+html

 

[Sean]

“Self-rated symptom count scores should not be used to identify patients with symptoms unexplained by disease.”

But they are okay as the only primary outcome measures in a clinical trial?

 

[Woolie]

Somatic symptom count scores do not identify patients with symptoms unexplained by disease: a prospective cohort study of neurology outpatients.

Unfortunately, I fear this information will be used in the wrong way: to insist that you don't need a high symptom count to qualify as having MUS.

There've been a few studies of this type lately. Disproving some widely believed tenet of "psychological" illness accounts. But then essentially refusing to revise their model. For example, one recent study showed that there was no greater susceptibility to anxiety, depression etc. in people with functional movement disorders (FMDs) than in control participants with 'organic' movement disorders.

But instead of using this evidence to challenge the conventional psychological explanations of FMDs, the researchers maintained their view that the illness had a psychological origin. They simply decided that measurable psychological dysfunction should not be a requirement for FMD diagnosis!

 

[Jo Best]

Unfortunately, I fear this information will be used in the wrong way: to insist that you don't need a high symptom count to qualify as having MUS.

There've been a few studies of this type lately. Disproving some widely believed tenet of "psychological" illness accounts. But then essentially refusing to revise their model. For example, one recent study showed that there was no greater susceptibility to anxiety, depression etc. in people with functional movement disorders (FMDs) than in control participants with 'organic' movement disorders.

But instead of using this evidence to challenge the conventional psychological explanations of FMDs, the researchers maintained their view that the illness had a psychological origin. They simply decided that measurable psychological dysfunction should not be a requirement for FMD diagnosis!

I agree with your interpretation; I think they're just trying to make it easier to give a primary or additional 'diagnosis' of psychogenic / functional disorder in order to maintain and build their empire.

 

[Sean]

But instead of using this evidence to challenge the conventional psychological explanations of FMDs, the researchers maintained their view that the illness had a psychological origin. They simply decided that measurable psychological dysfunction should not be a requirement for FMD diagnosis!

I see no difference between that and scientific fraud.

 

[Jo Best]

In the context of infection, thought this was interesting, from a paper published yesterday.
This extract is at 16.5 Environmental confounders

Our coverage of eukaryote-associated infectious viruses is equally poor, mostly because we do not

(1) know how to propagate known infectious agents and

(2) there are a number of medical conditions speculated to be linked with viral infections (eg, type I diabetes, chronic fatigue syndrome, obesity) but for which no infectious agent has been found.

It has been estimated over half of human-infecting viruses remain to be discovered.[76]

Numerous conditions in which patients suffer unexplained symptoms may also be virus-associated.

Therefore, there is a need to sample a wide range of body fluids and tissues from individuals globally to better understand the role of viruses in human health and disease.[75] http://onlinelibrary.wiley.com/doi/10.1111/apt.14280/full

(I posted the article here: http://forums.phoenixrising.me/inde...rome-in-health-and-disease.54015/#post-897178 )

 

[Woolie]

I see no difference between that and scientific fraud.

I think its different because its about the limitations in people's thinking, not a deliberate desire to misrepresent. For people who work in 'psychological' explanations of illness, this concept is at the core of what they do, its gonna take a very special type of person to really question the whole thing.

 

[Sean]

I am less generous to them. Writing it off to group think is giving them too easy an out.

 

[Woolie]

I agree with your interpretation; I think they're just trying to make it easier to give a primary or additional 'diagnosis' of psychogenic / functional disorder in order to maintain and build their empire.

Here's what I was talking about (from the 2017 FND conference in Edinburgh).

https://twitter.com/i/web/status/905460295107313664

Kudos to the author of this poster for telling it like it is. But the problem is, despite work like this, the psych explanations for this disease will continue to flourish unchecked.