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: Medications
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?
Treatments: Ampligen
I know that you have answered questions about the failure of people in the UK to have access to Ampligen – a drug that has immunomodulatory actions and is used to treat ME/CFS by some doctors in the USA. However, I’ve been told that the drug regulatory authority in America (the FDA) has now approved its use in treating Long Covid. So does this mean that doctors in the UK can now start prescribing Ampligen?
Treatment: Bromelain
I have read several newspaper articles about the use of this natural plant-based treatment for pain relief, especially in arthritis and muscle soreness. But is there any evidence that it can help to reduce muscle pain in ME? Because none of the drug treatments that I have been prescribed by my GP have helped.
Care and Support Plans
I very much welcome the recommendation in the new NICE guideline that everyone with ME/ CFS should have a personalised care and support plan. But is this actually happening in practice anywhere? I have been under the care of both my (very good) GP and a hospital-based ME/ CFS service for several years. But nobody has ever offered to prepare such a plan. And if I did have a care and support plan, who would prepare it and what would it consist of?
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?
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?
Symptom: Vivid Dreams
Are vivid dreams a recognised symptom of ME? Like most people with ME I have unrefreshing sleep and sometimes wake up in the night. But I’ve recently been waking in the middle of the night with very clear memories of rather bizarre vivid dreams. Fortunately, nothing frightening has happened so far!
Treatments: Prescribed Drugs and Informed Consent
In addition to ME/CFS I have developed both arthritis and osteoporosis and now require drug treatment for these two conditions. I was recently prescribed a new and fairly powerful drug that soon exacerbated a number of my ME/ CFS symptoms. However, I received no warning that this was something that could happen. As a result, the drug had to be stopped and changed to another one that I was able to tolerate. This upset might have been avoided if my doctor had also considered the potential side-effects a bit more carefully, and discussed them with me, before writing the prescription. Why doesn’t this happen?
Symptom: Nerve Pain
Like most people with ME/CFS, pain is a fairly constant and frustrating symptom. But this has become more persistent and severe over the past few months. My GP has prescribed various pain relieving drugs – including low doses of amitriptyline and gabapentin – none of which has had much effect. As well as the pain, which often has a burning quality to it, the areas around it sometimes feel numb and strange. I’m starting to feel quite depressed as a result – is there anything else that could be done to help?
Treatment: Dementia Drugs
Cognitive dysfunction, involving significant and progressive problems with normal mental functioning, is obviously the main symptom of dementia/Alzheimer’s disease. I understand that there are a growing number of drugs that can be used to treat dementia. Could any of these drugs also be used to treat similar aspects of ME/CFS? And have any clinical trials taken place?
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:
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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).
