Countrygirl
Senior Member
- Messages
- 5,429
- 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.
Treatment for ME
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. )
Here is the section that misleadingly claims to be describing ME.............
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
Different language?
Click on the flag
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.............
Functional and Dissociative Neurological Symptoms : a patient's guide
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.