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: Diagnosis
Can HIV/AIDS be misdiagnosed as ME/CFS?
I've been diagnosed with ME by my GP after having several months of fatigue, enlarged glands, night sweats and flu-like symptoms. A friend says that HIV/AIDS can cause very similar symptoms in the early stages and that I probably ought to have an HIV blood test – which hasn't been done as far as I know.
Having had several sexual partners, some casual, in the past, I suppose I could be at risk. Unfortunately, this isn't the sort of medical query that I can discuss with my GP because he is a family friend.
Post-exertional malaise – is it unique to ME/CFS?
I know what it’s like to have post-exertional malaise (PEM) and it’s good to see that PEM is now being recognised by NICE as one of the four key symptoms that are required to make a diagnosis of ME/CFS.
But is PEM unique to ME/CFS? And are there any other medical conditions where people experience PEM?
Ferritin blood test and iron supplements
Firstly, is there any guidance and research into low ferritin levels and ME?
Secondly, is it worth taking an iron supplement to increase energy levels even if serum ferritin levels are normal and there aren't any symptoms or signs of iron deficiency anaemia?
Thirdly, are there any risks to taking one of the commercial iron supplements that you can buy over the counter in a pharmacy and that are advertised for treating fatigue?
Blood ferritin level raised, iron overload and haemochromatosis
I’m a 30-year-old man who suffers with fluctuating mild to moderate ME. In addition to classic ME symptoms – debilitating fatigue, brain fog, etc – I also have quite a lot of joint and stomach pain which seem to be more marked and persistent than is normal in ME.
In blood tests I’ve had since having the symptoms, I noticed that I have a slightly elevated ferritin level. Could this mean that I have an iron-storage disorder called haemochromatosis because I know that one of my distant relatives had this condition? Should I now go back to my GP?
Do I have Long Covid or post Covid ME?
Two years ago I was very fit and healthy young adult. I then caught Covid. It was more like having a very bad cold and flu combined. I was managed at home with online GP consultations and didn’t have any serious chest problems. So I don’t have a persisting cough or breathlessness. My main symptoms are very similar to ME – debilitating fatigue, brain fog, muscle pain, problems with temperature control and post-exertional malaise.
My doctor has diagnosed Long Covid. But do I really just have post Covid ME?
Diagnosis: “Not feeling well”
I have all the characteristic symptoms of ME/CFS – exercise-induced fatigue, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance etc – and my illness followed an acute viral infection. I’ve now been ill for over three years and in addition to all these symptoms I wake up every day just “not feeling well’. I know I’m not alone in feeling this way and wonder why this symptom isn’t ever included in descriptions of this illness.
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!
Multiple Sclerosis
I was given a diagnosis of CFS by my GP (who won't use the term ME) just over a year ago. This was based on symptoms and some blood tests (which were all normal) to rule out other possible causes. I have all the main symptoms of ME/CFS – fatigue, poor memory and concentration, unrefreshing sleep – as well as some of the less common ones. I also have a close friend with multiple sclerosis (MS) and I've been struck by the similarity of some of my other CFS symptoms – tingling feelings and occasional loss of sensation, eye symptoms, being unable to tolerate hot weather – to those of multiple sclerosis. Is this something I should discuss with my GP? I should also point out that my ME/CFS came on very gradually – there was no obvious triggering infection – and that my level of health and disability has fluctuated quite a lot over the past year, often for no obvious explanation.
Employment: Disclosing Medical Information
Having made a significant degree of improvement over the past year I am considering returning to some form of part-time or flexible employment that I can preferably do from home. But I’m apprehensive about disclosing the fact that I have ME to a future employer. Please could you explain what the legal position is here – especially if I am asked about any health problems at an interview.
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-mordidities, 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 a Health Care Professional you can sign-up to receive ME Medical magazine (people with ME/CFS can also nominate their HCP by completing the sign-up form).