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.
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Questions in the Category: Thyroid
Symptoms: Gradual deterioration
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.
Symptoms: Cognitive Dysfunction
I know that cognitive dysfunction/’brain fog’ is one of the key symptoms of ME/CFS and that it can vary in severity – just like most other ME/CFS symptoms. But I’m concerned about what seems to be a slow and progressive worsening in the problems I have with memory, concentration, mixing up words and the ability to process information. I’ve also noticed that my memory for events in the past is now being affected. Otherwise, most of my other ME/CFS symptoms are fairly stable. But the frustration with not being able to properly function mentally is starting to make me feel depressed.
I went to see my GP a few months ago, and he felt that my cognitive problems were probably ‘just another part of having ME/CFS’. So is this sort of progressive decline in mental functioning something that other people with ME/CFS report and just have to live with?
Non-Alcholic Fatty Liver Disease (NAFLD)
I’ve recently been feeling more fatigued than usual. I’ve also lost a bit of weight and had some tummy pains – which are higher up than the sort of spasmodic pain I sometimes get with my irritable bowel.
My GP did some blood tests – all of which were OK apart from some minor abnormalities in my liver function tests. To cut a long story short I then had a visit to hospital and an ultrasound scan of my liver. It turns out that I have what the hospital doctor calls a fatty liver. He says it’s a fairly common condition – especially if you have diabetes, high blood pressure or are overweight and possibly ME/CFS. Could this be connected to having ME/CFS as well? As I’ve only put on weight since developing the condition.
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
Treatment: Coenzyme Q10
My nutritionist has advised me to start taking a supplement called coenzyme Q10 (CoQ10) which, she says, will boost my energy levels and improve my memory problems. What is CoQ10 and is this claim justified? Are there any side-effects? Can I take it with prescription-only medicines?
Symptom: Palpitations
Like many people with ME I have occasional palpitations. Does this mean that I might have some form of underlying heart disease? Or is this just another part of having ME? And are there any drug treatments that might be helpful?
The 2021 NICE Guideline ME/CFS: Drug Treatments
Comparing some of the recommendations on the use of specific drugs in the new NICE guideline to those in the previous 2007 NICE guideline, I see that melatonin is no longer given a possible recommendation for sleep disturbance in the 2021 guideline and the “do not use” instruction in the 2007 guideline no longer applies to antiviral drugs, fludrocortisone, steroids and thyroxine.
Does this mean that doctors can no longer prescribe melatonin but that they can now prescribe amphetamines, antiviral drugs, steroids, etc for people with ME?
New Symptoms
I know that in addition to all the well-known symptoms associated with ME/CFS there are a considerable number of other symptoms that can sometimes occur. But when should I go and see my doctor if I develop a new symptom? Or when an existing symptom isn’t quite the same as it used to be? In my case I’ve always had a problem with balance and I know you have described this as ‘walking on rubber’ – which is exactly how it feels at times! However, I’m now having what are best described as occasional dizzy spells where I feel very “off balance”. I also suspect that my hearing isn’t quite as sharp as it used to be. I’ve mentioned this problem to my new GP, who checked my blood pressure, looked inside my ears and said it was probably caused by ME/CFS – but come back if things don’t improve! I don’t want to be seen as a hypochondriac, turning up at the doctors every time I don’t feel well. But at the same time, I don’t want to find that something important, or treatable, is being missed.
Symptom: Low Temperature
Do people with ME have a low body temperature? My body temperature always seems to be slightly below normal when I check it with a thermometer and I’ve seen this being discussed on internet discussion forums. I’m also starting to feel the cold more than I used to do.
Symptom: Cold Extremities
Like most people with ME/CFS I‘m very sensitive to changes in temperature and find the cold winter weather is very difficult to deal with. So do you have any tips on keeping warm when it gets really cold?
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.
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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).
