MUST Fight MUS

Graham said:
That's exactly what I meant about them being sociopaths. I came across a few in teaching - I think the giveaway is the way in which they treat "juniors" who disagree with them: that's when they lash out, rather than in public, where they risk a loss of face.
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Totally agree. They are sociopaths - no empathy. If they think you’re a waste of time or your symptoms are boring they will make up a good reason why they don’t have to bother with you, even come up with a way to prevent you from bothering them again.
 
Allele said:
I would hope that any medically unexplained anything would be taken as a challenge and initiative to explain it, not an excuse to slink away, tail between legs, casting shame and blame on the persons to whom medical knowledge has thus far been unable to bring succor.
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That's what strikes me, often, too. But it seems, in my experience, many doctors don't seem to be very keen on problem solving, or being a detective and so... To me, this is quite vitalizing. But people are different.
 
I wonder about the ‘too hard basket’. I said before they’re disinterested but I wonder if it’s more like discouragement as well as disinterest. Or one informs the other. We had a problem when innocuous notes like ‘unexplained symptoms’ and ‘funny turns’ became MUS. The stronger MUS and the often ensuing FND is emphasised as being diagnostic canon, the stronger they provide a reference point to which patients with these symptoms can be steered. If doctors don’t do this then they would be generally considered, not as looking for answers, but as looking for alternative answers.

So: Doctors making the ‘mistake’ of going down the rabbit hole of searching for an alternative diagnosis will find themselves in a maze of possibilities. They will be ordering myriad tests that will show nothing, spending time (wasting time), spending money (wasting money) puzzling over and consulting and referring to specialist after specialist who will all send the patient back with the same shake of the head. Many will be the days, weeks, months of flustering over this patient as they get sicker, wondering how to help them. And all the time they’re sitting there saying help me help me, Oh, busy GP - Do you want that??

Or do you want the Gilderoy Lockhart of neurology to sweep your patient away, give them a onceover with his discerning eye and declare them to be prime candidates for their program of recovery? It’s guaranteed to work IF the patient truly wants to get better.

As long as there are acceptable solutions for the practitioner that don’t involve endless negative tests they will be passively pressured to take them. Not knowing is undesirable because of the consequences, especially in the face of an obvious route to diagnosis. In these cases they probably feel they are are not at liberty to investigate so they do a half arsed job of it at most. This pressure does make sense from a time and money perspective, too. It’s not just that they don’t like to say ‘I don’t know’, but that they don’t like to say ‘I disagree,” because by saying “I disagree,” they are also facing that potential threat of being on shaky ground if they had to explain themselves.

The importance of preventing fallacies from assuming canonical status is what we are grappling with here. It’s like fighting on the battleground of doctors minds, closing gates on them and opening others. If we had weapons of diagnostic tests that would be very much more helpful.

I think there is a lot of merit in demanding real science not PACE-based treatments. Bring those two concepts into the same sentence. It is better to fight a gap like MUS with something positive, like a demand for 2-day CPET testing to become more routine, than fighting a space with more space. As others have said, fighting MUS by saying we’re not in that category is allowing for the category. They are fighting us with the ‘functional’ diagnosis and treatment. We can’t let everything get sucked into that abyss. That ain’t no rabbit hole.
 
jeckylberry said:
like a demand for 2-day CPET testing to become more routine,
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Whilst I agree with most of what you have said. One thing that occurs is that there may be a contradiction in our arguments. We are arguing against GET being a treatment that doesn’t help patients and can make them worse. The 2 day CPET is a diagnostic tool potentially but what about the potential harm of this and is there actually a recognised diagnostic criteria for ME using this test yet anyway?

Are we not undermining the first argument by suggesting this before research proves its efficacy?
 
Is there a list of MUTs i.e. Medically Unexplained Trials? Just a suggestion. I've heard of a young person going through all the treatments to prepare for stem cell treatment and then refusing, as they had been convinced that complementary treatments would cure them. Even though all the doctors were telling them it was terminal and only weeks would remain without the transplant treatment. They have since decided to go ahead. I don't know the out come.

If all the charities were made aware of how they are being included under MH, MUS and only BPS is the answer, does this mean withdrawal of expensive drugs, as many are already being denied as too expensive.

I believe, perhaps wrongly that people are being encouraged to stop taking unnecessary drugs e.g. antidepressants, antacids, antipsychotics and many others, as I've read that the Patients Association are looking into what might be causing antibiotic resistance from these drugs as well as antibiotics. No more has been said on their web site as yet.

Is it possible that we are all in a 'holding bay' until Technology can determine Real Scientific answers?

When I attended the pain clinic, it was very much about the brain sending false messages to the nerves, which were hyperactive after an injury had healed. I was told the immune system acts the same way. It was explained that when an injury occurred the main nerve leading to the brain, in some people, opened more 'gates' which allowed more chemicals from the injury through these gates to go to the brain. This caused the brain to think the damage was still there. The example given was an amputee, who lost a leg, often felt as if the leg was still there and still felt pain from it. Also the main nerve would put out small nerves at the same time. When asked why they said they didn't know the answer yet.

My theory is likened to a small lizard who ejects his tail if a predator catches him by it. He then grows a new tail. It is a safety measure to protect the lizard. If our main nerve is damaged we cannot grow a second main nerve but, if it puts out small hypersensitive nerves that grow to skin level, are they our form of protection by warning of the danger of harm if we carry on doing what we did wrong in the first place?

Perhaps simplistic, but an idea that seems to me to be just as applicable as the other hypothesis. Brain training does not stop neuropathic pain, but taking more and stronger pain modifiers is very risky and can lead to addiction. Stress relief, rest and good sleep helps. It still does not cure pain. We simply don't know how to safely stop it yet.

Sorry this is long and brings a few themes together. I'd welcome some views around all this. I am not dismissing what the BPS model has done and is still doing. I especially object to deceit, lies, blaming patients, neglect and demonisation with consequences far beyond that of what this method is doing and has done to sufferers.
 
I think the only way I can summarise is to say the UK are adopting the US style health service. I'm not fully aware of what that involves but don't like the sound of health insurance at all. I know that clinics providing multidisciplinary treatments are becoming established and the strong push on MH is part of that process. Mainly psychological and GET. Encouragement to take care of ourselves with new proposals for Personal Health care funding announced today(voted down last time). Only 350,000 people were mentioned for this. What about the rest? More chronic diseases than this if including all the MUS patients.

We are being taken right back to basics with the 'Holding Bay' idea until research can provide answers. People often want drugs to cure them and don't realise the dangerous side effects. Pharmaceutical companies pushing/funding trials and influencing doctors to over prescribe has been recognised and may be something to draw to public attention? Health Insurance stepping in to offer their services, often with promotions that increase in cost down the line and 'assessors' deciding what to call the condition. May be highlighting the fact that this leads to patients being sent round in circles, spending thousand on drugs, that are not good for what ever patient has.

Vital to have correct diagnosis first. The link between pharmas and Health Insurance companies is wrong.

The message here is to stop this continuing to happen in the NHS. At the moment we have the usual confused messages coming out of UK.

It seems that we may be trying to help those who can manage life better with CBT and GET will be able to do that.

Are they trying to sort those from distinct disease patients in a neuro developmental bracket?

ME/CFS will definitely not be helped with these clinics and our right to refuse GET or CBT should not be used against us. What worries me is that patients of working age may be forced to these clinics, without having a correct diagnosis, being labelled with MUS, MH and if refusing CBT/GET could face sanctions if they don't attend and forced into work etc. Pretty much the same as we have with DWP now.

We need clarity on what ME patients are going to face in the future. Correct diagnosis (J Newton discussed 40plus% of patients sent to her did not have ME/CFS).

We need to stop the negative media. Good articles and voices from MEA stories lately. My suggestion from this Put the MYTHS to bed NOT the Patients?

Why are we having neuroscientists(neuroscience, health and behaviour) involved with ME? We need Neurologists?

It is so complicated this is all I can manage at the moment. Probably enough to read. and consider.
 
Just one more issue. Health care is being removed from the hands of doctors and placed into IAPTS in conjunction with new recording systems, gathering our health information for sharing with the IAPTS and outsourced private companies. I don't have the links in previous conversations on this forum.

Doctors have not been allowed to make the decisions for referals, without sending on to a panel for their judgement. This has been happening for a number of years already.
 
I have a question about the code or codes that are put on patients' records when they are diagnosed with one or more of the various things that are, underneath it all, considered to be MUS e.g. Bodily Distress Disorder or Somatic Symptom Disorder or Medically Unexplained Symptoms or any of the other names that are used.

If I asked my GP if any of these codes had been put on my records what is the likely reaction going to be?

1) The GP will record that I'm paranoid.

2) She will tell me the truth because she is obliged to.

3) She will lie because she is allowed to lie to patients.

4) She might tell me the truth even though she doesn't have to.

5) Something else I haven't thought of.

I copied this from one of @Dx Revision Watch 's posts in the other place :

A search for CTv3 term "Unexplained symptoms continue" returns the following map details:

CTV3 ConceptID: .16H.
CTV3 TermID: YaYS5
CTV3 Term30: Unexplained symptoms continue
SNOMED CT ConceptID: 161904006
SNOMED CT DescriptionID: 252325019
SNOMED CT Term: Unexplained symptoms continue
SNOMED CT ConceptStatus: Active
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In a recent study, Steinbrecher, Koerber,
Frieser, and Hiller (2011) found that MSU made up two-thirds of all reported symptoms with women,
younger persons and non-native speakers having the highest rates in primary care.
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Now they justify sexism and racism with "studies". (I cannot find a good reason why women, younger persons and non-native speakers more often have "MUS" - unless of course that's the group of persons where the fewest diagnostics are performed per se due to prejudice.) 2/3 practically says "nearly all their symptoms are in their head". If that's a doctor's takeaway of articles like that - nice!

MUS are associated with higher levels of disability and personal distress, and patients with these conditions receive more disability benefits than patients with neurological conditions
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That has a "Beigeschmäckle" (a certain taste)...

One of the factors that has attracted a great deal of attention in developing our understanding of MUS is the role of gender. Johnson (2008) suggests that women’s
symptoms are more likely to be multidetermined than men’s symptoms, and because the most established finding regarding MUS is that they are multidetermined, it is not surprising that MUS are more prevalent in women.
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And again...
If such findings were trully correct one would have to accept them. But since psychologists are well-known for their excellent scientific standards...it's hard for me to believe these statements are true.
Oh, it gets better:

Women have lower thresholds for perceiving symptoms, and therefore they are more likely to seek help for symptoms than men.
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Now it gets puzzling, having the last sentences in mind:
More recent psychodynamic theory has moved away from a traditional sexual conflict explanation and instead highlights the importance of early attachments’ issues and their effect on the relationships people form as adults.
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Later behavioural approaches proposed that excessive health-seeking behaviour may have its origins in childhood learning experiences.
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The fundamental assumption underlying the model is that symptoms are maintained by a self-perpetuating, multifactorial cycle encompassing the cognitive, behavioural and physiological factors. The key feature of CBT model is that these individual components become locked into an autopoietic cycle.
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The term “medically unexplained symptoms” does not refer to a specific disorder.
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By the way, many articles by Wessely, Fink, Chalder, Dreary, Sharpe etc. are cited which might indicate they were working on this model before/during PACE.

I still ask myself what can I/we practically do?
 
@Sly Saint In your link there is a reference to this :

https://www.researchgate.net/public...ients_diagnosed_with_bodily_distress_syndrome

Title : Is physical disease missed in patients with medically unexplained symptoms? A long-term follow-up of 120 patients diagnosed with bodily distress syndrome

Median follow-up time was 3.7 years.

But this is useless. It will miss loads of women with gynaecological conditions. Just as an example, the average time to diagnosis for endometriosis is currently 7 years - MUS is going to make that become open-ended and much, much longer because doctors appear to want to make endometriosis an MUS too. So time to diagnosis will theoretically become infinite i.e. it will never be diagnosed. The same problems will arise with fibroids, ovarian cancer could become much less likely to be found at all until its too late, adenomyosis - forget it - it will vanish as a disease and become imaginary, ovarian cysts causing pain - forget those too. All gynae conditions are in danger of becoming MUS.

I was startled to discover that the modern treatment of ovarian cysts (even big ones) is often to leave them alone and let them burst. The scarring and adhesions and lifetime of pain that must result from this doesn't bear thinking about.
 
Arnie Pye said:
@Sly Saint In your link there is a reference to this :

https://www.researchgate.net/public...ients_diagnosed_with_bodily_distress_syndrome

Title : Is physical disease missed in patients with medically unexplained symptoms? A long-term follow-up of 120 patients diagnosed with bodily distress syndrome
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Of course no disease will be missed! How can you miss a disease if you don't even look for it as is counseled by MUS guidelines? Because, diagnostic tests cause iatrogenic harm. Grrr :mad:
 
Arnie Pye said:
But this is useless. It will miss loads of women with gynaecological conditions. Just as an example, the average time to diagnosis for endometriosis is currently 7 years - MUS is going to make that become open-ended and much, much longer because doctors appear to want to make endometriosis an MUS too. So time to diagnosis will theoretically become infinite i.e. it will never be diagnosed. The same problems will arise with fibroids, ovarian cancer could become much less likely to be found at all until its too late, adenomyosis - forget it - it will vanish as a disease and become imaginary, ovarian cysts causing pain - forget those too. All gynae conditions are in danger of becoming MUS.

I was startled to discover that the modern treatment of ovarian cysts (even big ones) is often to leave them alone and let them burst. The scarring and adhesions and lifetime of pain that must result from this doesn't bear thinking about.
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Well, returning to the middle ages...

So sad. So shocking.
 
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