MEDICAL MATTERS
- Medical Matters features questions asked by Members of the ME Association on health-related topics.
- Dr Charles Shepherd and the ME Association's other advisers answer these questions by sharing their expert knowledge.
- Medical Matters is based on the popular ‘Ask the Doctor’ series in ME Essential magazine.
- It is a free resource that supplements the detailed information contained in the full range of literature that can be found in the website shop.
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Questions in the Category: Specialists
ME/CFS Specialist Service: Referral
After having a nasty viral infection (probably glandular fever) at the beginning of the year I have been struggling to get an explanation from my GP as to why I haven’t got back to normal health. He has now decided that I probably have post-glandular fever ME/CFS. However, my GP admits that he doesn’t know very much about how to manage ME/CFS. I have asked for a referral to a specialist ME/CFS service but it turns out that we don’t have one. I then asked if I could be referred outside the local area to a service that has good reports from people I have heard from. However, I’m finding it very difficult to get this moving because my GP says I can’t choose where I want to be sent. Please could you explain what my rights are?
ME/CFS Specialist Services
The new NICE guideline was published a year ago. But here in Northamptonshire we still don’t have a specialist ME/CFS service where GPs can refer people for help with either diagnosis or management. And there doesn’t appear to be any formal arrangement with a referral centre anywhere else that GPs can refer people to. I think this is unacceptable. So I am going to raise this with my MP – hopefully by arranging a meeting. Do you have a brief summary of the key points that I need to make?
Post-Viral Fatigue Syndrome, Myalgic Encephalomyelitis or Encephalopathy, Chronic Fatigue Syndrome, and Long Covid
Please can you define what PVFS, ME/CFS, and Long Covid mean. I am having difficulty determining if they are the same disease or different. Thank you!
The 2021 NICE Guideline ME/CFS: Regrets
I know you feel that the new NICE guideline is a major improvement on the first one. So do I. But do you have any concerns, disappointments or disagreements on the content?
The NICE Guideline ME/CFS: Northern Ireland, Scotland, and Wales
I know that the recommendations in the new NICE guideline apply to England. But what is the situation in Wales, Scotland and Northern Ireland where GPs often lack the necessary skills to diagnose and manage people with ME/CFS and hospital-based referral services are either poor or non-existent.
Symptom: Dizziness
I often feel light-headed and unsteady on my feet, and have done so since my ME started about five years ago after a nasty infection. But I’ve recently been having ‘dizzy spells’ where I feel faint, sickly and much more unbalanced. These attacks come on without warning and then settle down. Is this part of ME?
Dr Charles Shepherd
Dr Shepherd has been Trustee and Hon. Medical Adviser to the ME Association for more than 40 years. He is integral to the charity's activities and provides information and support based on his professional knowledge, personal experience as a doctor with ME/CFS, and the understanding gained from helping many thousands of people with the condition. He was a member of the comittee responsible for the 2021 NICE Clinical Guideline and is a recognised expert on ME/CFS in the UK. His knowledge extends to Post-Viral Fatigue Syndromes (PVFS), Myalgic Encephalopathy/Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), and Post-Acute Sequelae of SARS-CoV-2 infection (PASC) or Long Covid.
If you have questions about ME/CFS or Long Covid, you can:
- Review the free information in the What is ME/CFS? section of the website, and the free Covid-19 and Long Covid information in the website shop.
- Review the largest range of literature covering all aspects of living with ME/CFS. Download detailed information about symptoms, diagnosis, management, co-mordities, employment, education, related health conditions, The 2021 NICE Clinical Guideline, welfare benefits etc.
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Medical Matters is based on the popular ‘Ask the Doctor‘ series featured in the highly-regarded member’s magazine, ME Essential, and in the healthcare professional magazine, ME Medical. Both are produced by the ME Association and published as hard-copy magazines every 3 months and sent to members and healthcare professionals by post to home or business addresses.
If you are an HCP you can sign-up here to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).
Please note: The answers comprising Medical Matters were accurate at the time of printing. A publication date accompanies all listed entries. We will endeavour to keep Medical Matters updated as information changes, but if you would like to comment, please email: meconnect@meassociation.org.uk
MEDICAL DISCLAIMER
Information provided by The ME Association should not be construed as medical advice. Don't assume any new or worsened symptoms are simply the result of having ME/CFS or Long Covid. We recommend that any information you deem relevant is discussed with your NHS GP as soon as possible. It is important that you seek personalised medical advice from the GP who is in charge of your care and who knows you well.