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: Side-effects
Kidney disease and ME/CFS
Following a series of urinary tract infections in recent years my doctor has been monitoring my kidney function. Now that kidney disease tests have become more sensitive, and doctors more active in monitoring, the score is registering as abnormal, and indicative of mild chronic kidney disease. How typical is this for people with ME?
I’ve looked online, and see that there are a handful of small studies showing a correlation between ME and chronic kidney disease. Are these studies supported by wider evidence? Is there anything we as a patient group can do, or should watch out for, in managing the disease?
Muscle twitching/fasciculations
Unlike some people with ME, I don’t have a big problem with muscle pain. But I do get muscle twitching, especially when I’m tired or going through a ‘bad patch’. The twitching not only affects the big muscles in my arms and legs – it sometimes affects muscles on the face and makes my eyelids twitch as well! Is this a recognized problem in ME? And is there anything I can do to relieve it?
Pregabalin (Lyrica)
I have been reading some disturbing newspaper reports about the misuse of pregabalin and it looks as though there may be further restriction on doctors about prescribing this drug. I know that some people with ME/CFS have had major problems with side effects. But there are others like myself who have found pregabalin to be very helpful for pain relief where other drugs have failed. Do you think that my GP will be able to continue prescribing it?
Vaccinations: Covid-19
I appreciate that people with ME/CFS can have an exacerbation of symptoms following any type of vaccination, and that a significant minority have had a more severe and persisting adverse reaction to the Covid vaccines. However, I am still keen to continue having this protection so as long as the Covid-19 virus remains in circulation.
My 2022 Autumn Covid Booster resulted in a moderate exacerbation of ME/CFS symptoms – which lasted for about 4 weeks. So I’m querying whether it might be more sensible to allow people with ME/CFS to split the dose in half and have two smaller doses on two separate occasions. I discussed this with my GP but he wasn’t very supportive and has declined to do so. What do you think?
Treatment: Low Dose Steroids
I’m having joint problems at the moment and my consultant wants to inject a steroid into the joint to calm things down. I’m concerned that this could make my ME/CFS worse because I thought that people with ME/CFS should not take steroids. What do you suggest I do?
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?
Vaccines: Shingles
As I’m 70 I’ve been offered the shingles vaccine. I have had ME since 2016, consider myself to be severe, and already suffer from nerve pain. So I do not want to make things worse. But I’m also aware of people with ME who have had a significant exacerbation of symptoms following a vaccination. So should I have this vaccine?
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?
Treatment: High-dose Vitamin C
I have read about the use of high dose vitamin C injections being used to treat people with coronavirus infection. Could this also be used to treat ME?
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?
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).
