Medically unexplained symptoms in children: an experimental investigation of the impact of internet searching on parental responses, 2020, Hughes

Paywall, https://www.cambridge.org/core/jour...al-responses/68F0CD5ACD321F1794551D15B16604CE
Sci hub, https://sci-hub.se/10.1017/S1352465820000752

 

So, parents can act rationally re their children's illness, when finding informed information via the internet.

Wow!

"Keywords

• cognitive behavioural model
• health anxiety
• internet reassurance seeking
• medically unexplained symptoms
• parental anxiety"

Shame that current sites that should provide reputable info re ME, give the opposite.

(Yes, I have only read the abstract...)

 

Pediatric research dosnt get any better

 

Not that I have seen. Its a verbal narrative. In other words, its a cultural claim not a scientific one. Is it possible that sometimes this happens? Yes, I guess. Is it shown to be a major problem? Only by making repeated unproven assumptions. Lots of them.

I put forward my alternative view that most MUS are just illnesses we don't understand yet, and will be resolved when technology is in use that gives us the real physiology of any particular problem. Like diabetes . . . or do we still put diabetics in asylums for their dysfunctional belief they have a health problem?!

However getting any part of the patient population to engage in the science is a good thing. First teach them how to spot pseudoscience though!

 

I went to the GP presenting an increased amount of lassitude and a worsening of eyesight in late 2016. I was sent for blood tests. When the results came back I was told by this GP that everything was fine and that I should get 'a part time job' and that I've had 'extensive testing'.

After seven months and much weight loss I was told by another GP at the same practice to get myself to hospital immediately because my glucose levels were 'off the scale' and that I could be in danger of coma or death.

I now take insulin several times a day. The weight loss - which equated to approximately 23% of my former weight - appeared to have been ketoacidosis; a condition that if left untreated is potentially fatal.

I believe - if I'm not mistaken - that being told to get a job and being told also that I've had extensive testing are part of guidance given to GPs when faced with patients they believe to have 'Medically Unexplained Symptoms', yes?

 

Well, sometimes I like to imagine I've won the lottery or, better yet, recovered from ME. I still don't know exactly what that would be feel like and how I would react beyond being pleased. Why not go the whole hog and dispense with the participants and allow the researcher to simply use their imagination instead?

The one thing that never fails to amaze me is how frequently psychologists demonstrate a complete failure to grasp the complexity of humans beings. Even if we assume MUS is a valid diagnosis (& that hasn't been proven as far as I'm aware) -

Parents are still people who will react in various different ways. Some people like to cosset & care for, to be needed. Others are less touchy feely though they may still care as much. Internet searches don't change that.

Regardless of the parental reaction to the child's health problem there may be other constraints. Households that can afford for a parent, grandparent or child carer to take care of a sick child will react differently to those who simply can't afford that luxury and so, unless the child is extremely sick, have to send the kid to school anyway.

Although this paper lumps children and adolescents together, there's a big difference if the child is six or sixteen. A sixteen year old can communicate with you more fluently, can be trusted home alone if necessary etc.

Then there's the child. Even in my own home there was a marked difference between my sister and I. She got sore throats from time to time & thoroughly enjoyed the drama and fuss. I had a condition that we sometimes lost control of and would occasionally cost me weeks of school. I hated fuss and drama so used to hide the fact I was sick for as long as I possibly could.

I have zero doubt people will react differently in certain situations regardless of what the internet tells them. They aren't cardboard cutouts but complex individuals whose reactions will be affected by external influences. The information available to them is only a small part of the picture and, even if you can push people towards the same source of information, some will be more sceptical than others.

 

This is incredibly cringeworthy. Completely artificial scenarios like this make for, well, artificial results. How are these people so bad at coming up with relevant questions? That's what I don't get. There is no shortage of useful questions to ask, many of which are never asked. This is not one of those. Not using artificially forced scenarios that cannot possibly translate into real life.

Cringe cringe cringe.

 

That's a shocker. That's belief, not fact

 

Wow Have you complained

 

What can I do? The patient is powerless.

I think the (rather obvious) MUS categorisation in my case came from my medical files being *that* thick through 'CFS'. The diagnosis I'm sure is leading to patients having future problems being downplayed/dismissed. I'm, to say the least, very bitter about what happened (I've not seen that GP since) but, again, what can I do?

 

To miss such an obvious presentation with red flag symptoms without as much as a simple blood glucose test is shocking.

I'd recommend the following :

Write to the practice manager asking for a copy of your medical notes covering say the last few years - before and including the time frame when this happened. They have to comply. They are notes written about you.

When you get them, check them for accuracy.

Then prepare your complaint. Stick to facts first, then how it impacted upon you and the consequences for you. Direct your complaint to the practice manager.

See what transpires. If you get flannel then send your complaint to the Head of your local Clinical Commissioning Group (CCG).

It can be handy to copy your MP in to either your original complaint or when u reach the CCG.

If you would struggle to be well enough to write letters, let me know and we can whip it up in no time. I write and dictate letters multiple times per day. If you give me verbally the background it would not take long.

Let me know.

Take care
Bw Joan

 

"I believe - if I'm not mistaken - that being told to get a job and being told also that I've had extensive testing are part of guidance given to GPs when faced with patients they believe to have 'Medically Unexplained Symptoms', yes?"

I doubt that is part of any guidance, for any medical condition Patronising a**e

X

 

I'll reply later more fully but there is a punchline here - when one of the hospitals that had started seeing me as a patient (there were a couple) told me to put in a request for a glucose monitor to the GP (this is just before I was put on insulin IIRC) refused my request. The hospital then sent a letter to the GP and the request was granted.

My diabetic condition is now so serious that I have the prescriptive use of a Freestyle Libre (virtually round the clock monitoring) at all times - which the practice were told to prescribe me from the other hospital that I was going to.