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: Supplements
Symptoms: Pins and Needles
I’m in my early forties and have had moderate ME/CFS for about 5 years. I have all the usual symptoms but I now have a new and rather distressing sensation in my arms and sometimes in my legs. It is very similar to the ‘pins and needles’ sensation you can get when your legs have been crossed for too long. These abnormal sensations come and go and don’t seem to be triggered by anything in particular. Is this yet another symptom of ME/CFS? Or do I need to go and see my doctor?
Treatments: Unproven Claims
Looking around the internet I was surprised and disappointed to find a whole range of companies and therapists selling treatments and ‘recovery programmes' that they claim can successfully be used to treat or even cure ME/CFS. Some of these companies are clearly making a lot of money out of desperate people who are willing to try anything that is claimed to help. What can be done to stop these scams?
Symptoms: Myoclonic Jerks
Jerking movements are waking me up. Like most people with ME/CFS, I have major problems with sleep – especially getting to sleep and waking in the night. This leads to night after night of waking up feeling completely unrefreshed. I’ve also had problems in the past with what my doctor calls ‘restless legs’ – which have also kept me awake at night. I’ve now developed some rather frightening jerking movements in my legs. My doctor says these are called myoclonic jerks. Is this something that is also linked to ME/CFS? And is there an effective form of treatment?
Osteoporosis
I have several family members who have developed osteoporosis (thinning of the bones) in later life – some of whom have had nasty fractures as a result – and I understand that people with ME may be at increased risk of developing osteoporosis.
Why is this? Is there anything we can do to reduce this happening? And is there any treatment for osteoporosis?
Treatment: Vitamin D
Can Vitamin D help people with ME/CFS and are we more susceptible to Vitamin D deficiency?
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?
Treatment: Tryptophan
I’ve read that taking a tryptophan supplement is helpful for people with ME. Is this true? And are there any side-effects?
Diet and Nutrition: The Ketogenic Diet
I have read some internet discussions involving people with ME who claim to be finding benefits from using what is called the ketogenic diet. This is based on the idea that it is beneficial to switch to fats as the primary source of energy. However, I understood that glucose was the best source of ‘food fuel’ that we have. Has any research has been done in this area? And is this safe if you have ME?
Treatment: 5-HTP (5-Hydroxytryptophan)
An alternative health practitioner has recommended that I take a 5-HTP supplement for my muscle pain and headaches, but I’m very wary of upsetting my heart and nervous system – especially my heart rhythms which are all over the place at the moment. Is there any evidence that this supplement, which I had never even heard of, is both safe and effective for use in ME?
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?
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).