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: Secondary Care
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!
Symptoms: Joint Pain and Irritable Bowel
I know that in addition to all the classic diagnostic symptoms of ME there are a considerable number of other symptoms that can sometimes occur. But should we always go and see our GP every time a new symptom appears? Or when an existing symptom changes character or gets significantly worse? In my case, after several years of having ME, I’ve now developed intermittent joint pains (without any swelling or redness) and bowel symptoms (mainly loose motions with occasional stomach cramps and bloating) that sound like irritable bowel syndrome. I haven’t yet mentioned these symptoms to my new GP – who tends to blame everything on ME! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. At the same time, I don’t want to find that a new and treatable medical condition is being missed
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.
Medical Records
I am currently in dispute with my GP – who is refusing to correct some inaccurate medical information that was written in my medical notes. The GP maintains that this reflects a difference of opinion over what was said at a previous consultation. However, I believe the information about what I am capable of doing, both physically and mentally, is inaccurate and could have an adverse effect when it comes to him providing information to the DWP on my benefit claim for personal independence payment. What can I do to get this corrected?
Medical Consent
I am becoming increasingly concerned about my wife, who has had ME for many years. Her condition is getting worse and I believe she has also crossed the boundary from feeling fed up to being quite badly depressed. She no longer has any contact with her GP because he cannot offer any useful form of management advice and she does not want to ‘bother the doctor’. As we both have the same doctor, I asked the surgery receptionist if I could have an appointment to talk to the GP about my wife. I was told that this would not be possible because doctors have to follow very strict rules on medical confidentiality. This means they cannot discuss one person’s health with someone else, even a close relative. Is this correct? And, if so, what can I do to get some professional medical input?
Prognosis: Progressive
I’m in my late forties and have had ME for over 10 years. For the past few years it has been fairly stable with occasional exacerbations, normally when I get an infection. But I’ve recently noticed a gradual deterioration in almost all of my ME symptoms. I don’t have any new or unusual symptoms and there are no obvious reasons for this deterioration in health – infection, stress etc. I’m reluctant to see my GP – who knows very little about ME – but I am starting to feel concerned.
Symptom: Tremor
I understand that a tremor, or shaking in the hands, sometimes occurs in ME/CFS. But it could also be a sign of Parkinson’s disease. I’m in my mid fifties and have had moderate ME/CFS for about five years. It is fairly stable but the tremor, which is in both hands and tends to be more noticeable when I’m fatigued, has only been present for a few weeks. Should I see my GP?
Caring: Severe ME/CFS
I’m becoming increasingly concerned about the situation that my sister and her husband find themselves in. They are both in their mid-sixties and both have non-ME/CFS health problems. They are also looking after their son – who is in his mid-thirties and has had ME/CFS for well over 10 years – with no other practical or financial help. Their son’s state of health has steadily declined in the past year. He no longer works, is largely housebound and is dependent on his elderly parents for most of his care. Like so many other people with severe ME/CFS, he has lost most of his friends and has very few visitors. My main concern is that his parents are finding it increasingly difficult to cope. The GP doesn’t know what to do and I sense that only some form of crisis will make things happen. Do you have any suggestions or do they just have to carry on till the point where they can no longer cope?
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.
- Join the ME Association as a member and you'll receive the highly-rated ME Essential magazine, and you can ask questions of the charity’s expert advisers including Dr Shepherd.
- Contact us via the ME Connect Telephone Helpline (open 365 days a year) and speak to one of the national team of fully-trained volunteers who waiting to provide information and support.
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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.