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More info on Cumbria MUS clinic.....including 'ME' FND and conversion disorders.........

Countrygirl

Senior Member
Messages
5,370
Location
UK
https://www.cumbriapartnership.nhs....-symptoms-service/what-does-my-diagnosis-mean

So as not to upset uninformed patients, they are calling it the Persistent Physical Symptoms Clinic and ME is one of the main diseases they claim to treat, although their definition of it is woeful and quite inaccurate.

For anyone in the UK, one of these unhelpful, misinformed and dangerous services will be coming your way soon if it hasn;t already been established.

WHAT DOES MY DIAGNOSIS MEAN?
If referred to us you may have received a diagnosis such as Fibromyalgia, Chronic Fatigue Syndrome, Irritable Bowel Syndrome or Functional Neurological Symptoms (including Non-Epileptic Attacks).

Alternatively you may not have received a diagnosis at all or have been given a label such as chronic pain or medically unexplained symptoms.

We have gathered some resources that we think may be helpful to you in understanding your symptoms and/or diagnoses.

  • www.neurosymptoms.org – Written by a Neurologist about functional neurological symptoms, causes and treatments, also includes other symptoms e.g. pain and fatigue.
  • www.paintoolkit.org – A ’handy guide’ to self-management skills written by a pain patient, Peter Moore, and GP, Dr Frances Cole.
  • www.ayme.org.uk – This website is aimed at young people with ME (Chronic Fatigue) and their carers, but contains lots of information that would be useful to people of all ages who are trying to understand CFS/ME.

Treatment for ME
Treatments Cognitive Behaviour Therapy (CBT) Cognitive behaviour therapy examines how your thoughts, behaviour and CFS/ME symptoms relate to one another. Your CBT therapist will help you to understand your illness and change the way you manage it. Between sessions you try out new ways of managing your CFS/ME. The aim of this therapy is to help you manage your symptoms more effectively and do more. Graded exercise therapy (GET) Usually, you see a physiotherapist who helps you work out a basic activity routine. Together you plan to gradually increase the amount of physical activity or exercise you do. The gradual increase takes into account your symptoms, fitness, and current activity levels. The aim of this therapy is to help you do more and feel better.

Under the heading what does my diagnosis mean:

(Note the attempt to win the trust of the patient by telling them that the doctor believes the symptoms are 'real'..........in other words of course they mean they seem real to the patient, but are not to the doctor. )

Functional and Dissociative Neurological Symptoms : a patient's guide
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Different language?
Click on the flag

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How to use this website ...
This website is about symptoms which are: • neurological (such as weakness, numbness or blackouts) • REAL (and not imagined) • and due to a PROBLEM with the FUNCTIONING of the nervous system, and NOT due to neurological disease. These symptoms have many names (including dissociative symptoms and conversion symptoms) but are often described as "functional symptoms" or "functional disorders" Symptoms like these are surprisingly common but can be difficult for patients and health professionals to understand. This website, written by a neurologist with a special interest in these problems, aims to give you a better understanding of these symptoms. It has no advertising and does not make any money for the author.

Here is the section that misleadingly claims to be describing ME.............:rolleyes:

Functional and Dissociative Neurological Symptoms : a patient's guide
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Fatigue
Tiredness is a very common symptom in patients with functional neurological symptoms.

Often despite many more obvious symptoms, people say that it is the tiredness and fatigue that really holds them back day to day.

Tiredness in this situation can also be thought of as another symptom related to a problem with nervous system functioning.

When tiredness like this occurs
• with no other neurological symptoms
• for more than 6 months
• not due to a detectable underlying medical or neurological condition
then it is called Chronic Fatigue Syndrome / M.E. (CFS/ME)


CFS/ME has been recognised as a genuine illness by the Chief Medical Officers in England/Wales and Scotland (link)

This website is not designed to discuss chronic fatigue syndrome / M.E. in detail

Fatigue may occur as part of anxiety or depression, although its important to say that you don’t need to be anxious or depressed to have persistent and severe fatigue

However, many of the principles of treating CFS/ME which have been proven to be effective in clinical trials are likely to be effective in patients with functional neurological symptoms

There are some useful resources for patients with this diagnosis. If you want to try to understand more about this or learn practical ways to manage your fatigue then I can recommend the following book available online:

Chronic Fatigue Syndrome (CFS/ME) (The Facts) by Frankie Campling, Michael Sharpe. Oxford University Press

there is more information at NHS Direct

http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx

Services for patients with CFS/ME are patchy. However, they may be better than services for people with functional neurological symptoms. You may wish to find out from your doctor whether there is a treatment service locally for CFS/ME as this may be a route to treating your other symptoms.
 

Richie

Senior Member
Messages
129
Frankie and Mickie, they know "the facts" esp about humility, irony oh and candida, of course.

Stone says 5% misdiagnosis in FNS. Julia Newton reckons about 1/3 in CFS/ME, so there's a problematic start. You can't label sb as functional on the grounds of having CFS/ME if they have been misdiagnosed in the 1st place, so how are the Cumbrians going to diagnose - don't do any tests or they will think they are ill might be an approach in line with some of the mentioned "experts".
 

Richie

Senior Member
Messages
129
Stone on the linked site claims migraine scans are normal. This is not so. He does not label migraine as an FNS, and it's a good job, since recent work has shown it to be an immunologically addressable disease. So why use the disease migraine as an an analogy for other conditions which JS does not deem to be disease? Does the recent history of migraine not rather show that some FNS's may just be diseases in waiting?

Stone:

"Getting your head around this can take time. You don’t have a disease, but your not imagining it either.

The following points may help you.

The example of migraine. Sometimes it can help to compare your symptoms to those in migraine. This is a condition which is common, in which brain scans and all tests are normal and which can be associated with all kinds of odd neurological symptoms like flashing lights, tingling down one side of the body or even paralysis. In migraine we know a bit more about which bits of the brain are going wrong and that nerves in the brain are firing abnormally, but its still a diagnosis that is made on the basis of your story. "

Science:
https://www.medicalnewstoday.com/articles/258252.php

https://www.sciencedaily.com/releases/2017/03/170329161503.htm

http://www.sciencemag.org/news/2016/01/feature-will-antibodies-finally-put-end-migraines

Stone:

"Why is it ok to admit you’re depressed when you have multiple sclerosis? Many patients with neurological conditions get depressed and anxious. Pain, disability, uncertainty about the future, effect on jobs and relationhips can all take their toll. What’s interesting is that when someone has a diagnosis like multiple sclerosis they usually find it much easier to tell people that they are feeling low or worried. Because no one questions their neurological disease, its ok to admit to these things – people are often sympathetic."

Well, perhaps it would be easier if Stone et al were a lot more wary of labelling FNS's as non diseases, especially if the best he can do to elicit sympathy for FNS's is to use the analogy of a recognised disease, innaccurately described i.e. migraine.

There is a mass of interplay between psychology (not necessarily mental illness), immunology, inflammation, infection, mitochondrial dysfunction, nutritional deficiency etc. etc. and the label "FNS" understood as (psychologically based) software disorder, is feeble. Perhaps that's why the arguments to back it up are too.
 
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Countrygirl

Senior Member
Messages
5,370
Location
UK
If you can bear to read it, here is the plan that is being rolled out nationwide:

https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf

Patients with MUS are more likely to attribute their illness to physical causes, rather than lifestyle factors16. This can include symptoms such as pain in different parts of the body, functional disturbance of organ systems and complaints of fatigue or exhaustion17.

The risks or associated factors for MUS include being female, younger in age, and currently employed18. Childhood adversity and/or abuse, and the severe illness or death of a close relative are also factors associated with MUS18. MUS may be caused by physiological disturbance, emotional problems or pathological conditions which have not yet been diagnosed19. Psychiatric morbidity is not directly associated with the presence of MUS, but is more likely in those complaining of multiple symptoms. In severe cases of MUS, there is overlap with personality disorder20.

How they think they will cure ME:

Substantial benefits in terms of function and severity of symptoms can be achieved through the early use of good communication skills, including: • validating their suffering • removing blame • offering explanations which make sense • focusing on the patient’s words, ideas, concerns and expectations, and • jointly exploring ways of improving function22. There should be a positive emphasis on ‘function’, rather than a focus on ‘cure’.
 

Richie

Senior Member
Messages
129
Re CFS/ME

CBT/GET failed as cure so now re-branding as "functional improvement" i.e. NHS endorses pacing, but not saying so (loss of face etc.). Offers little hope, but can't be accused of letting people down as it offers them so little, so not like thiose nasty Lightning Process boys and girls.

CBT/GET trial was really a failure, so the question is how will this be better? Answer above.
 

Cinders66

Senior Member
Messages
494
It's amazing this rebranding and alternative form of CFS/me clinic was allowed. It completely sends the wrong signal out to Drs and looks very inadequate for patients. A clinical psychologist should not be leading a service for CFS/ME but should just be on the team for those who need it. There's so much change that needs to be brought about in uk but where actually is the #timeforunrest activism ?
 

Richie

Senior Member
Messages
129
What happens if you want to" validate" and if you think as a CFS interested psychologist?

Here's a possible pattern:

Women may have higher immune response to stress, illness is a stress, the havoc it wreaks in life is a stress, and the guilt is a stress, and lack of understanding so plenty of psychology for the immune system to get fired up by.

So a woman with CFS ME might be "validated" and leave guilt free if it is all put down to her gender, sex and stressors. The above account would fit in with the validation, no guilt, listening , understanding approach advocated and also with the female sex/gender,, autonomic arousal, high initial immune response risks of White et al. and also with BPS in general. A NICE biopsychosocial approach. And maybe well meant.

But lack of treatment is a major stress too so what about that? The psychological lobby tell us that lifestyle etc contributes to illness, so what illnesses do we have and how are they going to TREAT them, since mismanagement of lives often arises from the illness anyway,,and lack of medical treatment is a very major stress.

Interesting work is being done on gut bacteria whihc may be relevant to some.
Female mice when stressed have potentially pathological gut bacteria changes which male mice do not show. So there is a possible biological link for any stressor- neuro immune illness continuum among women. But how much does your average psychologist know about gut bacteria, how interested are they etc.? Will validation involve referring certain patients to gut bacteria specialists?

Will such an angle be an area of ongoing concern, or any other biophysical angle?

And what of misdiagnosis?

But the excuses arise from the logic. FNS is not disease.

If we have FNS we do not have a "disease" at all, so the question of cure is moot. There's nowt to cure, anyway! And if all they aim at is a bit of improvement why should they care, they are not setting out to cure a non disease.. If they set their standards low they can't be accused of failure, unlike CBT/GET.

From being an illness to be cured by GET, ME/CFS now risks being demoted to a non disease. Great.

I hope I am wrong.
 

andyguitar

Moderator
Messages
6,580
Location
South east England
Ok, as things stand this idea looks like a disaster. As @Richie has observed ME/CFS is being regarded as a non-disease which cannot be cured. But there is hope. The N.I.C.E guidlines for ME/CFS are due for review and the early stages have begun. The information I have seen and heard about how that could, and I stress could, turn out leads me to believe that by the end of that process ME/CFS will be regarded as a real physical illness.
 

Richie

Senior Member
Messages
129
Ok, as things stand this idea looks like a disaster. As @Richie has observed ME/CFS is being regarded as a non-disease which cannot be cured. But there is hope. The N.I.C.E guidlines for ME/CFS are due for review and the early stages have begun. The information I have seen and heard about how that could, and I stress could, turn out leads me to believe that by the end of that process ME/CFS will be regarded as a real physical illness.

Hope so,