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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I am very dismayed.....and bewildered by this development, Suzy. They could not have a better-informed advisor in position than you and your dismissal makes us all even more vulnerable.
I do hope you receive clarification on this seemingly bizarre decision asap. It is very unpleasant, but cannot be any reflection on your amazing comprehension of a complex subject and your incredible accomplishments for which we all owe you a huge debt of gratitude. You are indeed one of the heroes of this community.
This is worrying and not just for people with ME. With the continued 'gate keeping' of referrals for medical tests and to specialists by GPs other medical conditions could easily be scooped up within this broad brush label. e.g. asthma, diabetes type 2, cardiac problems, cancer, neuropathy, multiple sclerosis ....From 2013:
NHS England: Pilot of Enhanced GP Management of Patients with Medically Unexplained Symptoms
NHS Barnet Clinical Commissioning Group
Open full size flyer here:
https://dxrevisionwatch.files.wordp...lly-unexplained-sympthoms-kingsfund-may12.pdf
Note the use of the term “Bodily Distress Syndrome (BDS)” despite the lack of a body of evidence to support the validity, reliability, safety and clinical utility of the application of the "BSD" construct in primary care.
Note also, the list of illnesses under the definition of “MUS”: Chronic Pain, Fibromyalgia, Somatic Anxiety/Depression, Irritable Bowel Syndrome (IBS), Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Post-viral Fatigue Syndrome.
Extracts:
May 2013
NHS England
PILOT OF ENHANCED GP MANAGEMENT OF PATIENTS WITH MEDICALLY UNEXPLAINED SYMPTOMS
NHS Barnet Clinical Commissioning Group
Background
Medically Unexplained Symptoms
Definition
The term ‘medically unexplained symptoms (MUS)’ are physical symptoms that cannot be explained by organic pathology, which distress or impair the functioning of the patient. Patients often present with physical symptoms that cannot be explained even after thorough investigation. Other terms used to describe this patient group include: Functional Somatic Syndrome (FSS), Illness Distress Symptoms (IDS), Idiopathic Physical Symptoms (IPS), Bodily Distress Syndrome (BDS) and Medically Unexplained Physical Symptoms (MUPS).
Symptoms and Diagnosis
Symptoms
Headache
Shortness of Breath, palpitations
Fatigue, weakness, dizziness
Pain in the back, muscles, joints, extremity pain, chest pain, numbness
Stomach problems, loose bowels, gas/bloating, constipation, abdominal pain
Sleep disturbance, difficulty concentrating, restlessness, slow thoughts
Loss of appetite, nausea, lump in throat
Weight change
Diagnosis
Chronic Pain
Fibromyalgia
Somatic Anxiety/Depression
Irritable Bowel Syndrome
Chronic Fatigue Syndrome
Myalgic Encephalomyelitis
Post-viral Fatigue Syndrome
PROJECT AIMS AND OBJECTIVES
• To pilot a commissioner initiated, enhanced GP management service for patients with MUS in primary care. Refer to Figure 1 for details.
• The pilot will be carried out at selected Barnet GP practices (approximately 15) managing a minimum of 10 patients with MUS over 12 months.
• To identify patients with MUS using an electronic risk stratification tool the ‘Nottingham Tool’ with a review of the generated list at a multidisciplinary (MDT) GP practice meeting for the final patient selection.
• To enhance post-graduate GP training by providing education and training workshops and focused work group meetings on the management of MUS.
• The project will also test the assertion that identification and management of MUS would result in savings to commissioning budgets.
PROJECT OUTCOMES AND BENEFITS
There are several benefits that could be realised from implementing this project. These are as follows:-
• Improved outcomes for patients with MUS, better patient experience
• Improved quality of life
• Improved GP-Patient relationship
• Reduced GP secondary and tertiary referrals
• Reduced unnecessary GP and hospital investigations and prescribing of medicines
• Reduced GP appointments and out of hours appointments to A&E or GP
CONCLUSIONS
There is a high prevalence of patients with medically unexplained symptoms presenting to primary and secondary care services. Patients with MUS are high healthcare service users having a major impact to our local health economy and health outcomes. GPs are well placed to manage MUS patients as this patient group are 50% more likely to attend primary care. We believe that our proposed enhanced management of care by the GP will result in both market and non-market benefits. This proposal has gained approval from the NHS Barnet CCG Primary Care Strategy and Implementation Board, QIPP Board and the NCL Programme Board for the 2013/14 financial year…
etc.
