Information for Healthcare Professionals
We are a small membership charity that supports people in South Yorkshire and North Derbyshire who have Myalgic Encephalomyelitis/Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS), fibromyalgia and/or long Covid.
We also raise awareness of the conditions with the general public and are involved in projects to improve resources and awareness of the illnesses. Visit our About Us page to find out more about some of our recent projects.
You can find out more about ME/CFS, fibromyalgia and long Covid on our pages, including resources for patients and their carers such as explaining conditions to family and friends and a symptom tracker. Please note that those pages are currently being reviewed and updated.
This page is still in development. We'd like to know what you think. If you have found these resources useful or if you can recommend some, please share your thoughts with us by emailing info@sheffieldmegroup.co.uk.
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National Institute for Health and Care Excellence (NICE) Guidelines
NICE guideline for ME/CFS
This NICE guideline summary has been created by us for GPs to use.
Dr Charles Shepherd, Medical Adviser for the ME Association, explains the 2021 NICE guideline for ME/CFS.
Doctors with ME article, ‘Putting it into Practice: What NICE ME/CFS means for GPs’.
NICE guideline for fibromyalgia
There is no specific NICE guideline for fibromyalgia. Instead, it is considered under the NICE guideline for chronic pain, NG193.
NICE guideline for long Covid
This NICE guideline summary has been created by us for GPs to use.
Info Packs & Newsletters
MEE Medical: The Magazine for Healthcare Professionals from the ME Association
Produced by the ME Association. It features:
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Topical News and Developments
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Healthcare Recommendations.
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Research Publications.
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Implementing the 2021 NICE Guideline.
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“Ask the Doctor” with Dr Charles Shepherd.
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Personal stories from Healthcare Professionals with ME/CFS.
Sign up on the ME Association website to receive a free quarterly magazine in the post and a free copy of the MEA Clinical and Research Guide each year after it has received its annual update.
Fibromyalgia Guidance for Health Professionals Pack from Fibromyalgia Action UK
Produced by Fibromyalgia Action (FMA) UK's Medical Advisory Board, it contains fully referenced information aimed at health professionals. Please note that the pack is currently being reviewed and updated.
Read the existing Health Professionals Pack >
Or request a paper copy via the FMA website.
Peer-to-Peer Advice
The global professional association for medical practitioners, scientists and researchers in the field of myalgic encephalomyelitis (ME). They are the leading international experts in the field of post-viral disease and related conditions. The website includes research commentaries and opinion based articles about ME and long Covid.
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Long Covid Doctor with Dr Tim Robinson
An educational podcast series for patients with Long Covid, hosted and delivered by Dr Tim Robinson, an experienced general medical physician working in NHS Long Covid Services.
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Training
NHS Module - Introduction to ME/CFS
This online Continuing Professional Development (CPD) module , Introduction to ME/CFS, is the first module to be released and is aimed at anyone – healthcare professionals and the wider public – as well as people with symptoms. Work will continue on the final two modules later this year.
Learna Study PRN Free Module on ME/CFS
This online CPD module is designed to update and assess your clinical knowledge and patient management of the evolving international biomedical narrative on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
Receive a 1 Hour CPD Certificate on successful completion of this module.
MIMS Learning: NICE guidance on ME/CFS
In this learning module, Dr Toni Hazell highlights relevant points for GPs and primary healthcare professionals from the 2021 NICE guideline on ME/CFS.
After completing this module, healthcare professionals will be better able to:
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Recall what’s new and what’s relevant to them in the October 2021 NICE guidance on ME/CFS
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Know what to do differently in practice in the light of the NICE guidance
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Accurately assess symptoms and severity of ME/CFS
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Know what treatments are appropriate for ME/CFS
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Know when to refer for specialist input
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Be aware of areas of controversy in the management of ME/CFS
This module is not free, it requires a subscription.
Severe and Very Severe ME/CFS
It is estimated that around 25% of people with ME/CFS have experience symptoms that have a severe or very severe impact on everyday functioning.
NICE Guideline NG206 explains the difference in severity of ME/CFS and the impact of symptoms on everyday functioning.
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Read the NICE guideline NG206 explaining severity >
Definitions of severity are not clear-cut because individual symptoms vary widely in severity and people may have some symptoms more severely than others. An individual may also fluctuate between categories, particularly during flare ups.
Understanding Severe and Very Severe ME/CFS
Severe and very severe ME/CFS are not well understood. Recent high profile cases in the news have shown individuals to be mistakenly diagnosed with mental health conditions and have faced a refusal from hospitals and doctors to recognise ME.
The 25% Group campaign has a range of information about severe and very severe ME/CFS, including medical papers and information for professionals providing personal or hospital care.
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Educational Short Films
Dialogues of a Neglected Illness is a series of short films that provides educational content about severe and very severe ME/CFS. The series covers a variety of topics and gives a multi-faceted understanding of the disease from the perspectives of medical professionals, exercise scientists, research professionals specialising in ME/CFS and, importantly, also features the experiences of patients and carers.
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Caring for Patients with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Based on published clinical guidance and clinical experience, the article describes the clinical presentation of severe ME/CFS and has patient-centred recommendations on diagnosis, assessment and approaches to treatment and management.
The article also has suggestions to support the busy provider in caring for these patients by leveraging partnerships with the patient, their caregivers, and other providers and by using technology such as telemedicine.
Life-Threatening Malnutrition in Very Severe ME/CFS
Very severe ME/CFS can lead to problems with nutrition and hydration. The reasons can be an inability to swallow, severe gastrointestinal problems tolerating food or the patient being too debilitated to eat and drink. Some patients with very severe ME will require tube feeding, either enterally or parenterally.
There can often be a significant delay in implementing this, due to professional opinion, allowing the patient to become severely malnourished. Healthcare professionals may fail to recognise that the problems are a direct consequence of very severe ME, preferring to postulate psychological theories rather than addressing the primary clinical need.
This article presents five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. This case study aims to alert healthcare professionals to these realities.
Physiotherapy
Physios for ME
Physios for ME is a group of physiotherapists in the United Kingdom with a special interest in Myalgic Encephalomyelitis (ME). They aim to research, educate and advocate to improve physiotherapy management for people with ME.
The information provided on their website is meant to inform and signpost helpful resources and includes research and free training for physiotherapists.
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A Physiotherapist’s Guide to Understanding and Managing ME/CFS” published by Physios for ME
The book’s primary audience is all physiotherapists, not just those who work in ME services, as it contains information relevant to any physiotherapy practice that must be adapted to work safely with people with ME.
We also feel it is of interest to all allied health professionals, not just physiotherapists.
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Find out more about the book on the Physios for ME website >
Long Covid Physio
Long Covid Physio is an international peer support, education and advocacy, patient-led association of Physiotherapists (Physical Therapists) living with Long COVID and their allies. They work internationally across advocacy, policy, guideline development and research.
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Anaesthesia
ME/CFS or long Covid and Anaesthesia Fact Sheet
This resource provides people with ME/CFS who need to have an anaesthetic or sedation with information about what they might expect at the different stages of the surgical journey, and what they can do to prepare, in collaboration with their healthcare teams.
It is also useful to healthcare professionals as it explains the steps to reduce the risk of ME/CFS worsening after surgery.
This resource may also be helpful to people who are affected by long Covid because some of the symptoms associated with these conditions are similar to those experienced by people with ME/CFS.
Read the leaflet on the Royal College of Anaesthetists website >
Royal College of Anaesthetists Podcast: The perioperative management of patients with ME/CFS and Long Covid
In this episode of Anaesthesia on Air Dr Anton Krige, RCoA Clinical Lead for ME/CFS, talks with Dr Charles Shepherd from the ME Association and Helen Baxter, a patient advocate for ME patients, about the College's latest patient information project ME/CFS and anaesthesia.
They explore this poorly understood medical condition and the strategies that anaesthetists will find useful in managing these patients in the perioperative period.
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Post-Exertional Malaise & Pacing
Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks.
Healthcare professionals need to be aware of PEM when treating people with ME/CFS, long Covid and fibromyalgia.
Managing energy and activity, referred to as pacing, can help to reduce PEM from occurring. Pacing needs to be tailored to the individual.
Why exercise causes harm
This short video (3m27s) from Bateman Horne Center explains why exercise causes harm for people with ME/CFS and long Covid. People with fibromyalgia can also experience PEM.
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Guide to Pacing
Action for ME has created the guide, Pacing for People with ME. It is useful to understand what pacing means, how it works and advice on creating an individual pacing guide.
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Study: Muscle abnormalities worsen after post-exertional malaise in long COVID
This longitudinal case-control study provides new insights into the pathophysiology of post-exertional malaise in patients with long Covid.
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Visit the Vrije Universiteit Amsterdam website to read the study >