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: Weight Loss
Worried about weight loss
I’ve read on the internet that one of the many symptoms of ME is weight loss. My weight has dropped from about 11 stone to just over 9.5 stone over the past six months. I have a reasonable appetite and eat a fairly normal diet. I don’t have any stomach or bowel problems. The fact that I’ve lost quite a bit of weight doesn’t really bother me but why does this occur in ME?
Loss of appetite
I’m not sure if I ought to be worried about my recent loss of appetite – because this means that I’m starting to lose a bit of excess weight. However, this illness imposes far too many restrictions on what I can do already and I normally enjoy my food.
I haven’t been to see my GP because she’s not really interested in ME.
Is there a good tonic you could recommend? And is there a reason why people with ME sometimes lose their appetite?
Treatment: Thiamine
There are “medical people” on the internet claiming that high doses of a supplement called thiamine are a safe and effective new treatment for ME. What is thiamine? Is there any evidence to support this claim? And could taking high doses of thiamine cause any harm?
Addison's Disease
I was interested to see the item on Addison’s disease in the Winter issue of ME Essential as I have a close friend with this rare disease and it obviously has some interesting symptom overlaps with ME/CFS. So is there any evidence that adrenal gland failure, and steroid hormone production, could also be involved in ME/CFS? If so, would it be worth looking at steroids as a possible form of treatment for ME/CFS?
Rheumatoid Arthritis
I’ve always had occasional joint pains since developing ME/CFS three years ago but they are definitely getting more frequent and painful. As both my mum and aunt have rheumatoid arthritis, I’m worried that I may also be developing arthritis. My GP isn’t too concerned as there isn’t any swelling or signs of inflammation, but I’m still not happy. What is the difference between joint pains in ME/CFS and true arthritic joint pain?
Irritable Bowel Syndrome
Like many people with ME I also have irritable bowel syndrome (IBS). I have the MEA information leaflet on IBS and have had most of the treatments listed for my various bowel and stomach symptoms. But my symptoms are getting worse, especially the bloating, stomach pain and back pain. My fatigue levels have also increased. I am female, in my early 50s, and have had IBS symptoms for about three years. Do you have any other suggestions?
Diet and Nutrition: Restrictive Diets
All kinds of strange and restrictive diets are recommended for people with ME/CFS. I know of people who have cut out loads of different food groups, especially dairy, gluten and meat. Some of them have lost weight and made themselves worse as a result. So is there any evidence that any of these restrictive diets can be helpful? And what are the potential problems?
Diabetes
Knowing that lack of exercise and weight gain are two things that increase the risk of developing type 2 diabetes, is this type of diabetes more common in people with ME? I ask because I noticed I was getting thirsty, drinking more water than usual, and was also passing urine more frequently. I went to see my GP for some blood and urine tests and she confirmed that I had developed type 2 (non insulin requiring) diabetes. The good news is that a change in diet and weight loss are definitely bringing things under control and it doesn’t look as though I am going to need treating with drugs.
Mental Health: Depression
Like many other people with ME/CFS, I often feel fed up and frustrated by all the restrictions this illness imposes on my life. But I don’t feel depressed. I now have a new bright GP who thinks I am depressed and he wants me to try a course of antidepressants – to see if they make me feel happier! I know I would feel happier if I just felt well again. But I’m not convinced that I need antidepressants to do so!
Treatment: Drugs and Weight Gain
Although taking a low dose amitriptyline has been very useful in reducing some of my pain and helping to correct my very erratic sleep pattern (frequent wakening during the night) I’ve put on a considerable amount of weight since taking this drug. My GP says that weight gain is a well recognised side-effect with this type of drug and that it can also occur with other drugs that are used for pain relief. I know from talking to other people with ME that weight gain can be a major problem with some drug treatments for ME. But why is this so? And are there any solutions?
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.
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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).
