UK Royal College of Psychiatrists

Sly Saint

Sly Saint

Senior Member (Voting Rights)
RC Psych (Royal College of Psychiatrists)
Chronic fatigue syndrome: helping your child to get better

(note: Disclaimer This is information, not advice. Please read our disclaimer.)

CFS is a rare condition that usually starts in mid-teens but can occur earlier (but rarely before the age of 7 years). It has also been called Myalgic Encephalomyelitis (ME).
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Research looking at how children recover has shown that the majority of severely affected children make a complete recovery, and others improve sufficiently to lead near normal lives.
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https://www.rcpsych.ac.uk/mental-he...r-parents-and-carers/chronic-fatigue-syndrome

(not surprised to see them linking to AYME for further info, but I was surprised to see Tymes Trust there also; wonder if Jane Colby is aware?)

https://www.rcpsych.ac.uk/mental-he...r-parents-and-carers/chronic-fatigue-syndrome
 
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Medically unexplained symptoms

How often can doctors not explain physical symptoms?
  • About 1 in 4 people who see their GP have such symptoms.
  • In a neurological outpatient setting, it is 1 in 3 patients or more’ *
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What sort of symptoms can be medically unexplained?
The commonest ones include:

  • pains in the muscles or joints
  • back pain
  • headaches
  • tiredness
  • feeling faint
  • chest pain
  • heart palpitations
  • stomach problems - pain, feeling bloated, diarrhoea and constipation.
These aren’t the only medically unexplained symptoms. Other problems include collapsing, fits, breathlessness, weakness, paralysis, numbness and tingling.
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Is there a diagnosis for my symptoms?
We can give a name or a “diagnosis” for symptoms when:

  • they occur together in a particular pattern in many people, or
  • when they share a similar cause.
Diagnoses for certain patterns of medically unexplained symptoms include:

  • Irritable bowel syndrome – troubling stomach symptoms
  • Fibromyalgia – widespread bodily pain and tenderness
  • Non-epileptic attack disorder – in epilepsy, fits are caused by problems with the electrical activity of the brain. In non-epileptic attack disorder, someone has fits that look like epileptic fits, but the electrical activity of the brain is normal.
Examples of diagnoses that may be made because of possible causes of these symptoms include:

  • Somatisation disorder and somatoform disorder – where stress is thought to be a major cause of the symptoms, especially when the symptoms go on for a long time or are particularly severe.
  • Dissociative disorder (also called 'conversion disorder' or 'dissociative-conversion disorder') – where it is thought that symptoms that look like they are caused by a disease of the nervous system (e.g. fits, paralysis, loss of memory), but are in fact caused by stress.
  • Health anxiety (sometimes called hypochondriasis) - where someone worries a lot that their symptoms mean they have a serious physical illness, despite reassurance that they are not physically ill.
  • Body dysmorphic disorder – where someone is overly concerned about an aspect of their appearance, which causes them considerable distress or gets in the way of everyday life.
Other diagnoses can be given for medically unexplained symptoms, but it is common to use a general term to describe the symptoms, such as “medically unexplained symptoms”.

Another common term is “functional” - the symptoms are due to a problem in the way the body is functioning, even though the structure of the body is normal.
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What tests should I have for my symptoms?
You may wonder if you should have investigations for your symptoms, such as a blood test or a scan.

Your doctor can discuss with you what investigations you need for the symptoms you have, and when enough tests have been done, to look for anything important.

It is often unhelpful to have investigations that are unlikely to show anything:

  • Tests may be painful and carry a risk of harm.
  • Unnecessary investigations that don’t show anything are often not reassuring. They can make someone worry even more that there is something still to be found and that more tests are needed.
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https://www.rcpsych.ac.uk/mental-health/problems-disorders/medically-unexplained-symptoms
 
The Biopsychosocial model revisited; myth and reality
The Philosophy section of the Royal College of Psychiatrists will be running a conference on this topic Monday 12 September 2022 9.15am to – 5.30pm – hybrid format with on-site attendance at the Royal College of Psychiatrists in London

Academic sponsors include the INPP (International Network for Philosophy and Psychiatry) and the Philosophy and Humanities section of the World Psychiatric Association

For further details and to register please go to:

https://www.rcpsych.ac.uk/events/co...psychosocial-model-revisited-myth-and-reality

For a full programme please go to:.

https://www.rcpsych.ac.uk/docs/default-source/events/faculties-and-sigs/philosophy-sig/2022/calc—philsig-programme—july-2022.pdf?sfvrsn=38c7d8fc_
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https://inpponline.com/the-biopsychosocial-model-revisited-myth-and-reality/
 
Sly Saint said:
Medically unexplained symptoms





https://www.rcpsych.ac.uk/mental-health/problems-disorders/medically-unexplained-symptoms
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"Health anxiety (sometimes called hypochondriasis) - where someone worries a lot that their symptoms mean they have a serious physical illness, despite reassurance that they are not physically ill."

Which could be paraphrased as "when the patient doesn't trust their doctor's 'reassurance" --> must be a problem with the patient.

Insightful that focuses on that term/action rather than a more specific term relating to appropriate level of investigation



Then under 'what tests should I have':

"Your doctor can discuss with you what investigations you need for the symptoms you have, and when enough tests have been done, to look for anything important.

It is often unhelpful to have investigations that are unlikely to show anything:
Tests may be painful and carry a risk of harm.
  • Unnecessary investigations that don’t show anything are often not reassuring. They can make someone worry even more that there is something still to be found and that more tests are needed."
 
Sean said:
The Philosophy section of the Royal College of Psychiatrists

When all else fails, call in the philosophers.
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"The philosophy SIG focuses on a central aim, which is to encourage philosophical thought and conceptual analysis amongst psychiatrists."

Under development bullet:
"One of the functions of the philosophy SIG is to examine the ways in which philosophy can be brought to bear on practice and also seen to emerge from the context of practice.

A main contention of those interested in the philosophy of psychiatry is that conceptual problems lie at the heart of clinical practice. It is for this reason that we are excited that the work of the philosophy SIG continues to burgeon and broaden.

In the last few years we have seen philosophy of psychiatry having an impact on initiatives within the Department of Health through, for instance, the notion of values based practice."
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So I wondered what is values-based practice? From squirrelling round it seems that it is all about the 'compromise' idea, like the guideline and 'it's a debate'. And this whole centre and section is based on 'training' people in defined development to allow them to make their decisions in this way (what happened to the science?):

"Balanced decision making means decision making that is based on a balance between the (often complex and conflicting) values of those concerned in a given clinical situation"

On the following page: https://valuesbasedpractice.org/
What is Values-based Practice?
Values-based Practice (VBP) is a clinical skills-based approach to working with complex and conflicting values in healthcare. It is a twin framework to evidence-based practice (EBP). Values-based practice (VBP) is an approach to working with complex and conflicting values in healthcare that is: Complementary to other approaches to working with values (such as ethics) in focusing on individual values A partner to evidence-based practice in supporting clinical judgment in individual cases

In focusing on individuals in this way VBP links science with the unique values of the particular people involved (as clinicians, patients, carers and others) in a given clinical decision.
Read More about Values-based Practice
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Anyway just having a bit of a look at the glossary page with lots of terms it seems to be the most useful one as it actually has to define rather than repeat the same phrases that don't give much certainty to me: https://valuesbasedpractice.org/more-about-vbp/resources-2/ one example here is

Clinical Judgment

Values-based practice is a partner to evidence-based practice in supporting the exercise of clinical judgment in individual cases

  • Clinical judgment is exercised whenever a clinician uses his or her clinical expertise in progressively ‘squaring down’ on the evidence and values relevant to diagnostic and treatment decisions appropriate to a particular patient in a particular situation
  • Squaring down is the term introduced by Ed Peile to describe the process by which a skilled clinician focuses progressively on the more relevant information (about evidence and values), while discarding the less relevant information, arising from history, examination and investigations
In exercising clinical judgment, evidence-based practice is vital to bringing the clinician’s focus onto the most likely diagnostic and treatment possibilities; values-based practice is vital to matching those possibilities with the particular circumstances presented by this particular patient in this particular situation.

It is thus through squaring down in the exercise of clinical judgment that values-based practice links science with the unique values of individual people.
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Is this something to be concerned about?

SHould have I have heard of values-based before, is it describing something 'inane' that happens anyway, or is it a new pushing us further down the EBM issues route where methodology gets less and less concern in things?
 
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Arnie Pye said:
Obviously the psychs are making sure blame is passed onto all the nurses and/or the care workers.
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Hmm Zimbardo springs to mind: https://en.wikipedia.org/wiki/Stanford_prison_experiment

- there might be certain questions about it years on but I don't believe anyone doubts the idea of this being the general gist of how you can pretty much set-up a situation that is bigger than the free-will and individual personal qualities of the actors dumped into it.

Unsurprising corporate-type response. Definitely smells of distancing strategy. You'd think the few people who can't claim 'deniability' in such situations are if you are at the top of the tree, with power, voice at the table and in charge of decisions for those patients - so the elements that create said situation - and are the very business where qualifications and competence to practice implicitly mean you should understand this. Whatever you prefer to believe.

And of course should be very aware of the damage it causes (and take responsibility for it - 'trauma' as they seem to like to label it doesn't come from within the person being given it).
 
Amw66 said:
Sad thread from Twitter ( see comments)
Seems plausible deniability defence being rolled out ....

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For non UKers - the Panorama programme is the oldest documentary format on the BBC - highly respected and generally of sound, and frequently of excellent quality.

I watched the Mental Health Unit exposé in full on the day of broadcast - it is available on the BBC website for streaming Edenfield Centre: Hospital's 'toxic culture'. I did ponder posting it here - but decided against because I thought it too grim -- without wanting to patronise anyone, I think discussing it in detail should carry a trigger warning.

What was shown is sadly not new to the UK but there had been hope in recent decades that this kind of treatment of 'locked up' people was a thing of the past - there are very strong overtones of "One Flew over the Cuckoo's Nest" - albeit without lobotomy. A similar case of institutional abuse was seen in adults with learning impairment also exposed by the BBC 10 years ago: Winterbourne View abuse scandal although the legal cover of having someone locked up was not relevant in that case.

My view of the current case is that while senior Psychiatric staff have questions to answer at a management level, there was no evidence that Psychiatry has a case to answer, the ward level care staff behaviour was below any acceptable standard and the question is "where was management and why were staff not corrected or simply sacked and/or prosecuted for clearly criminal acts ?".

Panorama didn't explain the full hospital management hierarchy so I'm unclear who was responsible for what in the management chain - it may be that psychiatrists and psychologists were sidelined. Again my personal take, not a wholly evidenced view, is that what was shown was a collapsing system where historic underfunding has been exacerbated by post 2008 Financial crisis austerity, leading to a service where the least capable staff are retained because there are no available replacements, where 'warehousing' of seriously ill people is cheaper than providing proper care, and where management is so overwhelmed by firefighting that everyday issues are lost in perpetual crisis management. None of which excuses the abuse and sheer unprofessionalism of nurses and care staff that Panorama exposed.

For patients with ME/CFS and other non psychiatric illnesses which psychiatry and psychology seek to offer solutions, I think the question we might reasonably have for Psychiatry and Clinical Psychology is "if we are not asking for your help, and things clearly within your own immediate purview are such a mess, why are you insisting on focusing on us ?" I'm afraid the honest answer, at least in part, is that ME/CFS offers a softer option than the seemingly intractable problems of profound psychiatric illnesses which are simply not very 'sexy' to work with.

Edit to add link and sort some words
 
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still on their website
Chronic fatigue syndrome
for parents and carers
This information aims to explain what chronic fatigue syndrome (CFS) is, its causes and symptoms, and offers practical advice.
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site info is from 2015 and says due to be updated 2018........
CFS is a rare condition that usually starts in mid-teens but can occur earlier (but rarely before the age of 7 years). It has also been called Myalgic Encephalomyelitis (ME).

The main symptom is extreme tiredness (fatigue) after little effort, which is not improved by rest, and not explained by physical or psychiatric illness. CFS commonly starts with a short or sudden illness such as ‘flu’ or glandular fever, but it can also start gradually. It is a severely disabling condition that can often go on for a long time or comes and goes.

Common symptoms include:

  • headaches
  • aching muscles and other bodily pains
  • disruption of your child’s usual sleeping and eating patterns.
Like other severe physical illnesses, CFS has some important emotional and psychological effects. The child may become depressed, irritable and anxious, and find it difficult to concentrate or remember things (see chronic physical illness).


Published: Jul 2015

Review due: Jul 2018

© Royal College of Psychiatrists
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Research looking at various approaches to treatment suggest a combination of approaches including Cognitive Behavioural Therapy (CBT) and graded exercise therapy, and do not specifically support any one type of treatment. A programme of gradually increasing gentle activity can help to rebuild your child's muscles and fitness.
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https://www.rcpsych.ac.uk/mental-he...d-carers/chronic-fatigue-syndrome-for-parents

@adambeyoncelowe
 
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