Guidance for commissioners of services for people with medically unexplained symptoms - 2017

Esther12 said:
It wouldn't surprise me if many patients valued these sorts of clinics as a way of mitigating the sort of social problems caused by these clinics (and the work which leads to their creation).

Just being able to say 'the specialist I'm seeing advised me that...' can be a useful thing for people, or even just 'I've got another appointment with my specialist' can be signifier that one's health problem is in some way 'legitimate'. (I think that CAM can also be valued in this way, although in both instances the way in which this is interpreted will depend on how well informed others are). Having people in the medical profession act as if they respect you and want to help can be a powerful thing. Many patients have been so poorly treated and marginalised that even stigmatising quackery can be seen as valuable and a big improvement on what has come before.
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Yes something described as specialist gives you some validation until you/others find out its just a veneer. Some people don’t seem to pick up on that fact tho.
 
Stories like you posted, @Arnie Pye, make me very angry. I wouldn't go on speaking with such doctors. It's unbelievable what happens out there.

I get the feeling this BPS/MUS problem won't be overcome by being nice and sensible.

I made the same observations as @unicorn7. Two major problems: People eat the BPS stuff and love it; governments love the BPS model because it saves money.
 
Arnie Pye said:
I've had many appointments like the author of the post describes, and I can only assume that doctors get training in how to deny the patients' reality, keep them off balance with random dismissals and insults, and above all, resist, resist, resist helping the patients. Perhaps @Jonathan Edwards could comment?
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I cannot make any useful comment on this because the poster does not actually tell us anything about what the problem is. It sounds as if the doctors have been insensitive but as far as I know their medical advice may be correct. My own suspicion is that most people who continue to feel unwell despite having a normal TSH are not needing hormone supplements. I think there is another cause of the symptoms that we do not understand. But each case needs to be considered on its merits. I don't think endocrinologists understand but I suspect that thyroid forums may not be any better.
 
Just caught up with this thread, and shocked with what's happening in the UK. Special clinics to train those that can't easily be dealt with - so that they just give up and go away.

I don't want to single out the UK, because this sort of thing is going on in a lot of places. But there seem to be two possible factors that make things worse for UK patients. The first is that there's a national health service that has to be seen to be doing something, while at the same time achieving this as cheaply as possible.

The second is mere speculation on my part. Does the, well, historical "hierarchical" aspect of UK society help this sort of thing to flourish? Are patients more willing to accept the word on high in the UK - and not question it, even if it raises all sorts of questions? Maybe many UK patients really do go away after this training - because after all, "that esteemed doctor said it was all in my head"?
 
Solstice said:
The people at Het Roessingh where I went to were friendly, untill one of the patients started opposing the treatment because it made her go bad quickly as opposed to lucky me where it took some time. The gloves soon came off and she was painted as someone that didn't want to get better trying to set off the other patients against her too(we were in groups of six). Didn't particularly like the atmosphere at that place anymore after that. But didn't realise the scope of the harm they were causing untill way way later.
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Fascinating to read the stories from other countries. Thanks so much for posting, @Solstice, @unicorn7, @Inara, and others I haven't mentioned by name. Thanks for taking the time to put it in English for us.
 
Jonathan Edwards said:
I cannot make any useful comment on this because the poster does not actually tell us anything about what the problem is. It sounds as if the doctors have been insensitive but as far as I know their medical advice may be correct. My own suspicion is that most people who continue to feel unwell despite having a normal TSH are not needing hormone supplements. I think there is another cause of the symptoms that we do not understand. But each case needs to be considered on its merits. I don't think endocrinologists understand but I suspect that thyroid forums may not be any better.
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It's getting to the underlying cause if someone who is clearly not functioning normally has " normal" results. HPA dysfunction is common. My daughter's standard blood tests were normal (movement within ranges,some figures skirting the edges of low/ deficient; other factors " moved"as well - ferritin, glucose, phosphate- some had significant movement, but were within range- perhaps this is just as interesting for what is a " systems malfunction" condition. If your body is trying to get to some form of homeostasis it's going to even out the impact across many systems.)
Subsequent ACTH test has shown low base hormone level.

If you lack the nutrients to facilitate synthesis due to issues eleswhere, you will have problems. Unfortunately " normal" ranges are designed to pick up specific conditions and the wider interactions are lost on GPs ( and others). Ferritin and B12 are important for more than anaemia - yet this is the simple association, particularly if a female presents.
I had two great aunts who died of "goitre", so if there is a genetic predisposition, movement is in wrong direction and would perhaps indicate something really out of whack?
 
I had a quick read through that document, @Woolie. It looks like they are targeting particularly people who are having difficulty coping with their life circumstances and go to the GP a lot. The trouble is, they gather into that net people with genuine physical illnesses and channel them into completely inappropriate crap therapy leading to self blame, blah blah...
All the usual crap, dressed up in an awful lot of words and justified on the grounds of saving money. Yuck.
 
Trish said:
It looks like they are targeting particularly people who are having difficulty coping with their life circumstances and go to the GP a lot.
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I agree that such people might exist, especially in a free GP situation like the UK (probably less so where I live, where it costs $50 a pop to go to the doctor). But in every case description, I saw myself. "Fat file" patients, "heartsink" patients. That's me. That's what they think of me.
 
This turned out to be a long post off at a tangent - whoops!
Woolie said:
The second is mere speculation on my part. Does the, well, historical "hierarchical" aspect of UK society help this sort of thing to flourish? Are patients more willing to accept the word on high in the UK - and not question it, even if it raises all sorts of questions? Maybe many UK patients really do go away after this training - because after all, "that esteemed doctor said it was all in my head"?
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I'd say generally speaking people in the UK are very aware that shenanigans go on and the voice of authority isn't as well respected as in the past. However, when you have worried sick people who lack all the information and are isolated in their illness their default position will be to trust, certainly to begin with. "I'll try anything". People aren't stupid though and often know when things are wrong. In theory you can change your doctor but that isn't always practically possible. And if your new doctor thinks the same way? they are the gatekeeper to specialists. And if your financial situation depends on compliance?

When people begin to know there are problems they can be at a loss to know what to do about it. Sometimes they don't want to make a fuss (said to be a sterotypical british trait). They complain to friends and family. When they want to take it further there are complaints procedures to be followed which can be daunting, long winded, seemingly transparent but too often actually opaque. With some issues those with the power to effect change can hold out for decades if change doesn't suit them or their 'superiors'.

Sometimes fault is acknowledged in individual cases but it takes a lot to change a whole system. Taking any kind of legal action requires a high degree of proof and is a financial risk. It's all daunting for a sick person who is probably fighting many battles, especially if battles make them more ill.

However, people do organise and challenge; many of us peasants have always been revolting ;), and people will/are already about this.

So, many factors. Others countries have their own systemic factors that make things difficult for their patients - perhaps you hear more about ours in the UK?

But how far is it all for those reasons anyway, and how far because in the UK we actually live in the belly of the beast BPS that is spewing out this noxious poison that is infecting everywhere. I don't know.

Good things to think about if it makes us more effective, I suppose.
 
I lived in the UK in the late 80s and early 90s, and of course it was a different place then. But when I first went to a doctor (pre-ME), she kept me waiting for an hour and a half, and I thought this was outrageous. I asked why couldn't I have been kept informed about the delays and not just left to wait there? She gave me a thorough ticking off for complaining, and certainly didn't offer any apologies. I got the distinct impression such impudence was not commonly seen.
 
Trish said:
It looks like they are targeting particularly people who are having difficulty coping with their life circumstances and go to the GP a lot.
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Woolie said:
I agree that such people might exist, especially in a free GP situation like the UK (probably less so where I live, where it costs $50 a pop to go to the doctor). But in every case description, I saw myself. "Fat file" patients, "heartsink" patients. That's me. That's what they think of me.
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Sorry, yes, I completely agree, I saw myself in it too, except that I rarely see a GP, and am not on any meds, mainly because I get too many side effects, so in that sense I'm not in their target group. I agree it's a completely poisonous document that belittles genuine suffering and denies genuine physical illness.

I was trying to make the point that they seem to see us all as just having a few lifestyle issues which can be somehow reduced by silly therapies. I suspect whatever benefit the patients gain is from mutual support within the group.
 
I also saw myself in that description.

These psychogenic models always make a lot of assumptions and don't consider plausible alternative explanations. I would love to see the best evidence for the existence of emotionally induced pain. I doubt that core ideas like these have any real scientific support.
 
I don't ever go to my GP. I "save" him for when I actually would think I have something else. He can't help me with ME anyway, and at least he will take my seriously when I do have something else.

The document is written with hypochondriacs in mind. In this theory about stress and somatic problems, shouldn't hypochondriacs be extremely ill from all the stress and all the projecting? I actually know a bit of a hypochondriac and she just goes to the GP a bit more often to ask if her cough could be a tumor. The doctor comforts her and she is ok again. She leads a totally normal life other than that, and she also knows herself that she is a hypochondriac.

I find it amusing that the document says: "all people with psycho-somatic problems think their problem is organic" like it is a criterium for having a psycho-somatic problem:laugh::laugh: I know a few people with stress-related of anxiety problems, but they all knew themselves that they had stress or anxiety problems.
 
JamBob said:
The MUS clinics run by the Tavistock in London (Camden and Hackney) seem to be really popular with NHS GPs on social networks like twitter. I often see them sharing the details about MUS, MUS conferences and how common MUS is in their patients. GPs on Twitter also seem to really like Jon Stone's Neurosymptoms website and share the site with each other so that they can use it to "explain" MUS to their patients.
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Jesus that made me shiver when you said Tavistock. Anything connected to the Tavistock institute is deep state propaganda. Scary!
 
There are loads of research papers on MUS;
here's one from the US 2006
Physicians' responses to patients' medically unexplained symptoms
Abstract
OBJECTIVE:
To understand how physicians communicate may contribute to the mistrust and poor clinical outcomes observed in patients who present with medically unexplained symptoms (MUS).

https://www.ncbi.nlm.nih.gov/pubmed/16554393

This one got me a bit ......:
Experts' opinions on the management of medically unexplained symptoms in primary care. A qualitative analysis of narrative reviews and scientific editorials.

Abstract
BACKGROUND:
The feasibility as well as the suitability of several therapies for medically unexplained symptoms (MUS) in primary care applied by the family physician (FP) appeared to be low. FPs need effective and acceptable strategies to manage these functionally impaired patients.

CONCLUSIONS:
MUS experts highlight the importance of generic interventions and doctor-patient communication and relationship. However, studies showing the effectiveness of these elements in the management of MUS in primary care is still scarce. Research as well as medical practice should focus more on these non-specific aspects of the medical consultation."

https://www.ncbi.nlm.nih.gov/pubmed/21368064

So there are MUS experts now(?)o_O
 
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