Royal College of Surgeons blog: Are surgeons missing the major differential diagnosis that is more common than multiple sclerosis and HIV combined?

Andy

Andy

Retired committee member
Blog by Nina Muirhead
It’s a great feeling when we meet a new outpatient that we know how to manage surgically. Unfortunately, every surgical specialty experiences a subgroup of patients who present with symptoms that cannot be resolved by surgery. These symptoms may span immune, neurological and vascular systems within the body or brain and may manifest themselves in various ways in several organs at the same time. (See list of symptoms below)

Often these patients have been back-and-forth to the GP or passed on by other medical and surgical specialties. They tend to be the cases that are difficult to diagnose, quantify, understand and detect with routine investigations.

My story

In September 2016, I became ill with acute Epstein Barr Virus Glandular Fever. I continued working, exercising and trying to lead a normal family and social life. I developed all the symptoms listed below, as well as post-exertional malaise (PEM). Every time I tried to do anything challenging (mentally, physically or emotionally) I would experience severe symptom exacerbation and flu-like sore throats with head and neck pain. I couldn’t work, read or watch TV. I couldn’t look after myself, let alone my children, and could barely walk and digest food. Eventually I was diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS).
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https://www.rcseng.ac.uk/news-and-events/blog/differential-diagnosis-me/
 
Given that my own prior understanding of ME/CFS was so misguided
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So weird that physicians unfortunate enough to develop the disease seem to come to the conclusion that the dominant paradigm is completely wrong and that the original understanding, the one erased by the psychosocial ideological model, was pretty much as good as it gets until we find the root cause.

I'm sure it's just a coincidence, mass hysteria, cats and dogs marrying, the whole lot.
 
She wrote-

"I was never taught about ME/CFS at medical school and it certainly wasn’t in the MRCS examinations that I passed a decade ago. I had a vague notion that it was an illness related to deconditioning, but I was wrong. ME/CFS is a serious neurological condition which can be fatal."

Who is responsible for that?
 
"Given that my own prior understanding of ME/CFS was so misguided".
rvallee said:
So weird that physicians unfortunate enough to develop the disease seem to come to the conclusion that the dominant paradigm is completely wrong and that the original understanding, the one erased by the psychosocial ideological model, was pretty much as good as it gets until we find the root cause.

I'm sure it's just a coincidence, mass hysteria, cats and dogs marrying, the whole lot.
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I think she is just stating, honestly, what I myself have said in the past: That ME, unfortunately, is much easier to misunderstand than to understand, and until something forces to you to gain further insight, you will probably get it wrong.
 
Off topic (mostly).

After reading the link in the OP I poked around on the same site and came across this link, dated 10th November 2016 :

https://www.rcseng.ac.uk/news-and-e...-autonomy-of-treatment-is-a-common-law-right/

Title : A common law right to autonomy of treatment

Montgomery v Lanarkshire [2015] is a landmark judgment affecting the surgeon/patient relationship. The Supreme Court held that patients have the right to exercise autonomy over their own bodies and over the treatment they undergo. When making treatment choices it is the surgeon’s duty to advise and the patient’s right to decide. This right of autonomy over treatment is a common law right. It does not come from the European Convention on Human Rights but has been created by British judges in cases beginning with Sidaway [1985]. In Montgomery the Supreme Court gave it a final and very decisive stamp of approval. The Court held:

"An adult person of sound mind is entitled to decide which, if any, of the available forms of treatment to undergo … The doctor is therefore under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative … The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it.”
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My attention was caught by the phrase "An adult person of sound mind is entitled to decide which, if any, of the available forms of treatment to undergo".

It suddenly occurred to me to wonder for the first time if people with ME, people with MUS, people with depression and/or anxiety, anyone classified as a hypochondriac, an attention-seeker, a drug-seeker, or anyone referred to IAPT are considered to be "of sound mind"? And who decides?
 
Arnie Pye said:
It suddenly occurred to me to wonder for the first time if people with ME, people with MUS, people with depression and/or anxiety, anyone classified as a hypochondriac, an attention-seeker, a drug-seeker, or anyone referred to IAPT are considered to be "of sound mind"? And who decides?
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That is the get-out-of-jail-free card for them.

Just classify uncooperative patients as being of unsound mind, and it all becomes so much easier for doctors and policy makers.
 
Milo said:
It could happen to them too. They are not immune. And when they start speaking out of their own experience, there is a higher likelihood that their peers will listen. Sad but true.
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Hopefully your right, but not sure that even peers experiences will make them understand that this could happen to everyone (them included). People in general are probably thinking this could not happen to me, a hundred times that when it comes to doctors. But do think that surgeons and other doctors can imagine their kids and relatives being ill with this disease. And maybe they also pick up the point that if so, they themself are in for a hard time, fighting for help, knowledge, understanding and maybe also not appreciating the stigma that will come with it. At least one could hope that a peer describing have more impact than an ordinary man or woman doing the same.
 
Webdog said:
I don't like laundry lists of ME/CFS "typical symptoms". Not everyone with ME/CFS has even half of the 20 symptoms listed. I have 7... maybe 8.
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Unfortunately I have every one of them plus a few more. Back when I used to go to doctors before I gave up, I narrowed it down to the most pertinent few rather than hit them with my own personal laundry list. But never mind, most/nearly all doctors think it's just 'fatigue' or 'tiredness', no matter what you tell them!
Peter said:
People in general are probably thinking this could not happen to me, a hundred times that when it comes to doctors. But do think that surgeons and other doctors can imagine their kids and relatives being ill with this disease. And maybe they also pick up the point that if so, they themself are in for a hard time, fighting for help, knowledge, understanding and maybe also not appreciating the stigma that will come with it. At least one could hope that a peer describing have more impact than an ordinary man or woman doing the same.
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Absolutely. Nobody thinks this could ever happen to them - until it does. I wouldn't wish this disease on anyone but I think it's sadly true that if doctors or their loved ones or peers were to acquire it and realise first-hand that not only is it not 'tiredness' but also that CBT/GET is as much use to a person with ME as a bicycle is to a fish, they would then grasp just how dire things have been for the three decades since a small group of UK psychs were allowed to hijack and reframe the illness as 'fatigue'. Being able to grasp this should't require such an extreme measure as getting it oneself, but sadly that's sometimes the way.
 
Arnie Pye said:
It suddenly occurred to me to wonder for the first time if people with ME, people with MUS, people with depression and/or anxiety, anyone classified as a hypochondriac, an attention-seeker, a drug-seeker, or anyone referred to IAPT are considered to be "of sound mind"? And who decides?
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I think this is where the mental capacity act should come into play. It sets clear boundaries about when a person can and cannot be assumed to lack the ability to make decisions about their health. Here is a summary from the NHS website (my bolding);

The Mental Capacity Act (MCA) is designed to protect and empower people who may lack the mental capacity to make their own decisions about their care and treatment. It applies to people aged 16 and over.

It covers decisions about day-to-day things like what to wear or what to buy for the weekly shop, or serious life-changing decisions like whether to move into a care home or have major surgery.

Examples of people who may lack capacity include those with:

But just because a person has one of these health conditions doesn't necessarily mean they lack the capacity to make a specific decision.

Someone can lack capacity to make some decisions (for example, to decide on complex financial issues) but still have the capacity to make other decisions (for example, to decide what items to buy at the local shop).

The MCA says:

  • assume a person has the capacity to make a decision themselves, unless it's proved otherwise
  • wherever possible, help people to make their own decisions
  • don't treat a person as lacking the capacity to make a decision just because they make an unwise decision
  • if you make a decision for someone who doesn't have capacity, it must be in their best interests
  • treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms
The MCA also allows people to express their preferences for care and treatment, and to appoint a trusted person to make a decision on their behalf should they lack capacity in the future.

People should also be provided with an independent advocate, who will support them to make decisions in certain situations, such as serious treatment or where the individual might have significant restrictions placed on their freedom and rights in their best interests.

How is mental capacity assessed?
The MCA sets out a 2-stage test of capacity:

1) Does the person have an impairment of their mind or brain, whether as a result of an illness, or external factors such as alcohol or drug use?

2) Does the impairment mean the person is unable to make a specific decision when they need to? People can lack capacity to make some decisions, but have capacity to make others. Mental capacity can also fluctuate with time – someone may lack capacity at one point in time, but may be able to make the same decision at a later point in time.

Where appropriate, people should be allowed the time to make a decision themselves.

The MCA says a person is unable to make a decision if they can't:

  • understand the information relevant to the decision
  • retain that information
  • use or weigh up that information as part of the process of making the decision
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I'm no expert but I don't think PWME or any of the other patient groups you mention can be said to lack capacity in the definition above but in my experience that doesn't stop medical professionals treating us like patients do when we don't agree with them; My GP for example, saw my history of mental health issues when I first fell ill and sent me to a psychiatrist under false pretences after I categorically stated that my mental health issues had been under control for over 10 years and that I didn't think it the new symptoms were related.
 
Arnie Pye said:
It suddenly occurred to me to wonder for the first time if people with ME, people with MUS, people with depression and/or anxiety, anyone classified as a hypochondriac, an attention-seeker, a drug-seeker, or anyone referred to IAPT are considered to be "of sound mind"? And who decides?
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They may be considered not to be of sound mind by some, but legally there needs to be a process of incapacitation. Unless somebody is lawfully incapacitated he is deemed legally competent, i.e. "of sound mind".

The UN says nobody, if sick, disabled, psychologically ill or whatever (altogether: not "of sound mind" from a legal perspective ), must be discriminated, and to take away the right of autonomy is not only discrimination.
 
EzzieD said:
I wouldn't wish this disease on anyone but I think it's sadly true that if doctors or their loved ones or peers were to acquire it and realise first-hand that not only is it not 'tiredness' but also that CBT/GET is as much use to a person with ME as a bicycle is to a fish, they would then grasp just how dire things have been for the three decades since a small group of UK psychs were allowed to hijack and reframe the illness as 'fatigue'.
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And if politicians had ME for just one day, the very next day millions of dollars in ME research funding would start flowing.

And I do wish it upon them.
 
ScottTriGuy said:
And if politicians had ME for just one day, the very next day millions of dollars in ME research funding would start flowing.

And I do wish it upon them.
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I disagree, not because I'm 'nice' or because of any ethical/moral concern, but because it takes a few years to fully grasp what ME is, for the 'hope' that things will pass and return to close to 'normal' to be shattered. For them to realise that whilst their lives may be 'over' they will have to live on and witness it. And other things to that effect, anyone whose suffered from ME for a 'while' will know what i'm talking about ;)
 
It doesn't say much for all these surgeons. After all, within a year of moving into the field Wessely published saying that it was time for a new approach. And within a further year was publishing the treatment protocol. What are the chances of that? It must all be very obvious for those with the power to see.
 
Wonko said:
I disagree, not because I'm 'nice' or because of any ethical/moral concern, but because it takes a few years to fully grasp what ME is, for the 'hope' that things will pass and return to close to 'normal' to be shattered. For them to realise that whilst their lives may be 'over' they will have to live on and witness it. And other things to that effect, anyone whose suffered from ME for a 'while' will know what i'm talking about ;)
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I agree!

Only be being totally immersed in the ME 'experience' for a long while, would they get that deeper 'appreciation' of life with ME.
 
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